I thought it would be fun to title this post with Jesse's all-time FAVORITE music artist. He is the lead singer to all Jesse's favorite bands: Perfect Circle, Tool, and Pucifer. Personally, his music tends to get farther and farther from what I enjoy with every new band he starts up, but Jesse LOVED him. Even had the Perfect Cirlce tatooed on his back as many of you know. Also tried to casually convince me that if we ever had a boy someday, he really like the name Maynard, but Keenan would do to. Jesse went to SO MANY of Maynard's concerts, usually with his very best friends, Ron, Haggy, Pete, amongst others. They were scheduled to see one after Jesse was sick, I believe I mentioned it on caringbridge. Reflecting on that time is just an example of the many, many ways people reached out to do something extra special for Jesse. The boys called ahead to make sure we could find a comfortable spot for Jesse, and the venue, Roy Wilkins, I believe it was, was easily accommodating. Even though Jesse never made it, I will not forget their kindness and willingness to help out. Jesse was also hospitalized shortly before this concert, and one of the hospital residents called my personal cell to ask if Jesse would appreciate meeting Maynard in person, if there was any way he could arrange it. ARE YOU KIDDING!?! I said! Unfortantely, he was unsuccessful, but the thought and the fact that he cared enough to try was special.
It just so happens that Maynard also owns a winery down in northern Arizona. I mention this because almost immediately after Jesse signed us up for Netflix, he requested this documentary on Maynard's vineyard expeditions that he promptly forced me to sit through...If you haven't seen it, BORING! Ha. I guess I'd just much rather hear about wine while I was drinking A LOT of it. ;) For expertly organizing all the music in my sister, Kayla's and brother-in-law Greg's wedding, they bought him a t-shirt and a bottle from this particular winery and had it shipped to Jesse. He LOVED the t-shirt and wore it often. Since this was in February after Jesse's first round of chemo, he told us all that we would share the bottle together after he was cured. I still have that bottle, waiting for something. I don't know what. Maybe I'll never open it. Anyway, tomorrow morning, my sister, Kayla, friend, Bethany, and I are flying out to Arizona for a couple of reasons, but on the agenda is to make a stop at Merkin Vineyards - Caduceous Cellars, in memory of Jesse. I hope that through our experience, he'll get to experience this place he very much wanted to go to but never had the chance.
I want to try to share with you all many of my memories of Jesse and the things we did together in our life and the things we had hoped to do one day. I SO APPRECIATE the story Leah shared about Robinhood. I can picture it perfectly, and I am so grateful for the smile it puts on my face every time I read it. Again, I encourage any and all of you following this blog to share your stories. I cherish them. Thank you, and I hope to post again soon. ~K
Mr. and Mrs. Brewington
Our official wedding day, May 1, 2011
Thursday, November 10, 2011
Wednesday, October 12, 2011
Day to Day...Month to Month
A few times I've started writing this post in my head but never take the time to sit down and actually do it. Of course, the things I planned to say or thought to say aren't fresh in my mind at the moment, but I am taking advantage of the free moment to post something. How are you all? I've never forgotten or assumed that any one of you aren't suffering from the loss of Jesse any less than I am. There are still good days and bad days. There isn't a day that goes by I don't think of him. Sometimes I'm sad when I can't recall every memory that I try to because I'm afraid I'm starting to forget them. Some of them, I want to forget. He was so sick at the end.
Music continues to be my strongest bond to him...Some of it I can choose to listen to and some of it just comes over the radio, and I cry. I'm emotional quite often, but I know that's normal. I recently visited my primary care nurse practitioner, and she said something I found interesting: "Karlyn, you need to not be so hard on yourself." She reminded me that the grief process has so many twists and turns and that no matter what my emotion is at each juncture, it's okay. I often feel anger towards people who don't understand that. Of course, everyone means well, so I'm overreacting. If they would just understand that my being irrational is part of this process, then they'd understand why sometimes the things I do or don't do, aren't going to make sense to them.
I'm vaguely referencing specific incidences here, but I am more focused on the general idea: People tell me they understand I am grieving, however their actions do not show understanding but instead the opposite. Frustration, impatience, disappointment in me. Again, this is a handful of people, not one in particular, and certainly not the majority. I'm so blessed and grateful for my amazing support system. What I'm having a hard time adjusting to is not having the kind of support Jesse used to provide me. We decided everything together. I checked in with him and he with me. That emptiness is indescribable. Recently, a friend of mine was mentioning how much she missed her husband because he was gone for one night. I bit my lip not to say: imagine the rest of your life. And I don't want to say things like that...I'm happy and grateful that my friend has a loving, wonderful husband, and I PRAY she'll never have to go through what I'm going through. There are many in the world who do go through this, and that sucks.
So, I'm here and Jesse's not. I'm learning what kind of person I am now, having had him touch my life and then be taken from it. I'm not that different, but I'm certainly not the same. I'm thinking of getting one of those bracelets, "What Would Jesus Do?" because the initials are WWJD, and I am always asking Jesse what he would do. ;) I wish I was a motivated enough person to just enroll in college to be a GI Oncologist and never give up until there was a cure for cancer...because doing something like that in Jesse's name would be nothing short of what he deserves, but I'm not that person. The more I write, the more I worry it appears as though I want to prove to you all how MUCH I loved Jesse, but rationally I know that he knows and that's all that matters. I have had several people tell me I should write a book, so maybe this little space here will come in handy someday when I'm trying to meet my page quota. ;)
Jesse and I started our caringbridge blog together to keep people informed of his medical status as it progressed. Why? So they could offer their support. So, do I continue this blog to ask for your support? I guess I do. For me and for the fundraising efforts we plan to get underway in the future in Jesse's memory. Since those efforts won't be underway for awhile, I guess I'm just filling some empty space, and my brain thanks you for allowing me to put some thoughts into words. ;) After all, you don't have to follow this blog if you don't want to. :)
I'd also like to use this tool to share memories of Jesse's. Not just mine, but all of you reading this. You can comment anything, anytime. So many of you shared your memories at the wake, so I know you have them, and I know you enjoy sharing them...so please feel free. Many of you share on Jesse's Facebook wall, and that is excellent. The Facebook Team has Jesse's wall now set up as a "tribute" or "memorial" space, so you can all do just that. This blog tool is not much different.
Well, that's more than enough out of me for today. Until next time...
Music continues to be my strongest bond to him...Some of it I can choose to listen to and some of it just comes over the radio, and I cry. I'm emotional quite often, but I know that's normal. I recently visited my primary care nurse practitioner, and she said something I found interesting: "Karlyn, you need to not be so hard on yourself." She reminded me that the grief process has so many twists and turns and that no matter what my emotion is at each juncture, it's okay. I often feel anger towards people who don't understand that. Of course, everyone means well, so I'm overreacting. If they would just understand that my being irrational is part of this process, then they'd understand why sometimes the things I do or don't do, aren't going to make sense to them.
I'm vaguely referencing specific incidences here, but I am more focused on the general idea: People tell me they understand I am grieving, however their actions do not show understanding but instead the opposite. Frustration, impatience, disappointment in me. Again, this is a handful of people, not one in particular, and certainly not the majority. I'm so blessed and grateful for my amazing support system. What I'm having a hard time adjusting to is not having the kind of support Jesse used to provide me. We decided everything together. I checked in with him and he with me. That emptiness is indescribable. Recently, a friend of mine was mentioning how much she missed her husband because he was gone for one night. I bit my lip not to say: imagine the rest of your life. And I don't want to say things like that...I'm happy and grateful that my friend has a loving, wonderful husband, and I PRAY she'll never have to go through what I'm going through. There are many in the world who do go through this, and that sucks.
So, I'm here and Jesse's not. I'm learning what kind of person I am now, having had him touch my life and then be taken from it. I'm not that different, but I'm certainly not the same. I'm thinking of getting one of those bracelets, "What Would Jesus Do?" because the initials are WWJD, and I am always asking Jesse what he would do. ;) I wish I was a motivated enough person to just enroll in college to be a GI Oncologist and never give up until there was a cure for cancer...because doing something like that in Jesse's name would be nothing short of what he deserves, but I'm not that person. The more I write, the more I worry it appears as though I want to prove to you all how MUCH I loved Jesse, but rationally I know that he knows and that's all that matters. I have had several people tell me I should write a book, so maybe this little space here will come in handy someday when I'm trying to meet my page quota. ;)
Jesse and I started our caringbridge blog together to keep people informed of his medical status as it progressed. Why? So they could offer their support. So, do I continue this blog to ask for your support? I guess I do. For me and for the fundraising efforts we plan to get underway in the future in Jesse's memory. Since those efforts won't be underway for awhile, I guess I'm just filling some empty space, and my brain thanks you for allowing me to put some thoughts into words. ;) After all, you don't have to follow this blog if you don't want to. :)
I'd also like to use this tool to share memories of Jesse's. Not just mine, but all of you reading this. You can comment anything, anytime. So many of you shared your memories at the wake, so I know you have them, and I know you enjoy sharing them...so please feel free. Many of you share on Jesse's Facebook wall, and that is excellent. The Facebook Team has Jesse's wall now set up as a "tribute" or "memorial" space, so you can all do just that. This blog tool is not much different.
Well, that's more than enough out of me for today. Until next time...
Monday, September 26, 2011
Medical supplies and...
Just a quick update to share with you all that we found a group that we were able to donate all Jesse's remaining extra medical supplies to that organizes mission trips through Mayo throughout the year. I am extremely grateful to my sister, Kayla, who came up to Hampton on her day off and went through all the supplies, inventoried them, boxed them up, and loaded them into her car before I even returned home from work for the day. Knowing they went to good cause and knowing now I won't have to accomplish the sad task myself is the kind of relief I needed and am extremely grateful. See, I let my family and friends help out as much as I can! ;) I am just referring to a post that said, "Everyone wants to help, so let them!" I am so thankful for all of you.
I am missing Jesse today, as usual. Last week, I walked to a common lunch spot near my work and passed the spot where Jesse used to pick me up after work everyday. I returned to work bawling. My great friend and co-worker said she wasn't allowing me to go to lunch unsupervised anymore! My workplace really has been wonderful. So many of them followed our story while I was out and so many of them picked up slack where it was needed to help cover for me. Thank you all, I am grateful. Is there another word for thankful and grateful? I feel I'm overusing them but want so much to display my gratitude! I hope you all know that.
Home is tough too, of course. I haven't touched much except to clean around or underneath of things (the cobwebs and dust were seriously taking over). I have his pictures everywhere. I have to. I need them. Jaxyn is humoring me and my need for extra cuddle time. Jesse's friends, you know who you are, have been completely outstanding to me. They invite me to things, visit me, call to check in, and offer to help with anything they can. I cherish the time spent with them remembering Jesse, and I look forward to making it more and more frequent. I love you guys.
I mentioned Kayla, but my entire family's greatness, love, and support for me cannot be described in words. You guys are my rock now that my biggest rock in life is gone. Crap! Making myself tear up...
Since I decided to go this direction with this post (I just started typing with no plan of what to say!), lastly but not leastly, my in-laws continue to be the loving extended family that I am so glad to have acquired. More another day. Appreciate your posts and feedback as always. Take care.
I am missing Jesse today, as usual. Last week, I walked to a common lunch spot near my work and passed the spot where Jesse used to pick me up after work everyday. I returned to work bawling. My great friend and co-worker said she wasn't allowing me to go to lunch unsupervised anymore! My workplace really has been wonderful. So many of them followed our story while I was out and so many of them picked up slack where it was needed to help cover for me. Thank you all, I am grateful. Is there another word for thankful and grateful? I feel I'm overusing them but want so much to display my gratitude! I hope you all know that.
Home is tough too, of course. I haven't touched much except to clean around or underneath of things (the cobwebs and dust were seriously taking over). I have his pictures everywhere. I have to. I need them. Jaxyn is humoring me and my need for extra cuddle time. Jesse's friends, you know who you are, have been completely outstanding to me. They invite me to things, visit me, call to check in, and offer to help with anything they can. I cherish the time spent with them remembering Jesse, and I look forward to making it more and more frequent. I love you guys.
I mentioned Kayla, but my entire family's greatness, love, and support for me cannot be described in words. You guys are my rock now that my biggest rock in life is gone. Crap! Making myself tear up...
Since I decided to go this direction with this post (I just started typing with no plan of what to say!), lastly but not leastly, my in-laws continue to be the loving extended family that I am so glad to have acquired. More another day. Appreciate your posts and feedback as always. Take care.
Transitioned
I have copied and pasted into this new blog every journal entry from this site as well as every guestbook entry, so they will never be forgotten. I get caught up re-reading the posts Jesse gave on caringbridge, and my feelings are mixed. I miss him. I miss him so very much. I'm sad for all the hope we had of winning our battle, but focusing now on the importance of sharing what we went through for those who are just beginning, in the middle, or at the end. What to expect, what to do different, or just knowing someone else has been there and been through it.
Now, I can relate to a much broader spectrum of people who have experienced loss. Heartbreaking, life-changing, devastating loss. My heart goes out to all of you that might have experienced such a loss. I am so sorry. Thank you to all of you who have posted reassurances to me on caringbridge. Every person experiences this grief differently, and I want nothing more than to be reassured that I'm doing the right things. I understand my grief process will play itself out over time, as much time as I want or need, but it is important to me that all of you who loved and cared for Jesse deeply, feel comfortable and reassured about how I continue on his legacy. Trust me. Jesse trusted me, and I will never let him down.
Now, I can relate to a much broader spectrum of people who have experienced loss. Heartbreaking, life-changing, devastating loss. My heart goes out to all of you that might have experienced such a loss. I am so sorry. Thank you to all of you who have posted reassurances to me on caringbridge. Every person experiences this grief differently, and I want nothing more than to be reassured that I'm doing the right things. I understand my grief process will play itself out over time, as much time as I want or need, but it is important to me that all of you who loved and cared for Jesse deeply, feel comfortable and reassured about how I continue on his legacy. Trust me. Jesse trusted me, and I will never let him down.
Monday, September 19, 2011
Caringbridge Journal
Monday, September 12, 2011 4:31 PM, CDT
Some of you don't have Facebook, and I don't have emails for MANY of you...These were played at the funeral, and our fantastic brother-in-law, Greg, put them up on youtube where anyone can see them. Just click on the links: http://www.youtube.com/watch?v=amTM0iptMOw&feature=related
Monday, September 12, 2011 11:30 AM, CDT
Legacy, Memorial, Tributes...
Hello, all. As I continue to struggle through the coping process and MANY changes that are happening in my life, updating this page has been one of them. I feel strange not having posted, but I also feel strange posting on a site that is intended for updating struggles through a medical illness, when that no longer applies to us. When I find the time, I believe I will find a location to continue posting or "blogging" online, so that you may all check in on me as well as the things that will be done in the future in Jesse's memory.
I have to say in response to anyone wondering at this point...I have no idea. I don't know what will specifically be done, donated, or started yet in Jesse's name. I've heard and received a few fantastic ideas, including donations to the Pine Island Girls' Basketball team, donating to a music program for children to learn and play that can't afford lessons or instruments, donating to cancer research, and so on. I have to be completely honest here...I'm struggling too much personally to have the answers to this wonderful suggestions. I am living alone for the first time in my life; this is probably the largest adjustment. I am surrounded by Jesse and his things, but it overwhelms me beyond words to think about going through them just yet. I have been sorting through and submitting paperwork for all Jesse's financial affairs, and the topic of donations falls into this same category for me: Money.
I am just scratching the surface of what debt I am responsible for and how I'm going to pay it. I don't mean to share my person financial details, except to say that the time it takes to meet with bankers, advisors, realtors, and attorneys and wait for some sort of results with answers is well into months down the road from here. I can't focus on money going one place versus another just quite yet. I reassure all of you that have so generously donated that currently, you've made an excruciatingly difficult process for me a bit lighter in having that cushion that the memorial account gives me. I also can reassure you that when the time is right, Jesse's family and I will post about all the ideas we follow through with in Jesse's memory. All I ask is for some more time.
Jesse's memorial has made a donation to date, however, and that was to St. Paulos Group, "cultivating proven and innovative solutions to poverty." Our dear friend, Shane, is a partner to this group, and his family is in Haiti working to achieve this vision there. We also intend to make a donation to the Bob Buckmeier Foundation "Sprint For a Cure," when we attend Deer Creek Speedway's "Clash at the Creek," this Saturday, September 17. If you recall from a past post, this wonderful foundation donated to Jesse and I's fund when we needed it most.
So, I will most likely be posting the next update with a blog site, where you all can continue to read updates regarding Jesse's legacy. Thanks to you all for your generosity, caring, support, and understanding.
I have to say in response to anyone wondering at this point...I have no idea. I don't know what will specifically be done, donated, or started yet in Jesse's name. I've heard and received a few fantastic ideas, including donations to the Pine Island Girls' Basketball team, donating to a music program for children to learn and play that can't afford lessons or instruments, donating to cancer research, and so on. I have to be completely honest here...I'm struggling too much personally to have the answers to this wonderful suggestions. I am living alone for the first time in my life; this is probably the largest adjustment. I am surrounded by Jesse and his things, but it overwhelms me beyond words to think about going through them just yet. I have been sorting through and submitting paperwork for all Jesse's financial affairs, and the topic of donations falls into this same category for me: Money.
I am just scratching the surface of what debt I am responsible for and how I'm going to pay it. I don't mean to share my person financial details, except to say that the time it takes to meet with bankers, advisors, realtors, and attorneys and wait for some sort of results with answers is well into months down the road from here. I can't focus on money going one place versus another just quite yet. I reassure all of you that have so generously donated that currently, you've made an excruciatingly difficult process for me a bit lighter in having that cushion that the memorial account gives me. I also can reassure you that when the time is right, Jesse's family and I will post about all the ideas we follow through with in Jesse's memory. All I ask is for some more time.
Jesse's memorial has made a donation to date, however, and that was to St. Paulos Group, "cultivating proven and innovative solutions to poverty." Our dear friend, Shane, is a partner to this group, and his family is in Haiti working to achieve this vision there. We also intend to make a donation to the Bob Buckmeier Foundation "Sprint For a Cure," when we attend Deer Creek Speedway's "Clash at the Creek," this Saturday, September 17. If you recall from a past post, this wonderful foundation donated to Jesse and I's fund when we needed it most.
So, I will most likely be posting the next update with a blog site, where you all can continue to read updates regarding Jesse's legacy. Thanks to you all for your generosity, caring, support, and understanding.
Tuesday, August 16, 2011 5:38 PM, CDT
Thank you, thank you, thank you ;)
Yesterday, I drove back up to Hampton after being away with only one short stop before the funeral last week. There were DOT vehicles, patrol cars, county cars, city squads, ambulances, and unmarked squads at every intersection all the way up Hwy 52. By Zumbrota, I was curious, so I picked up my phone to call Jesse and ask him what was going on...when I realized of course that wouldn't do me much good...so in answer to many of you calling, texting, and emailing to check in on me, there are good days and not-as-good days. :) I miss him. We all miss him. I'm so grateful to all of you who've expressed such wonderful, amazing sentiments and gifts to me and Jesse's family. I'm scratching the surface of phone calls that need to be made, bills that need to be settled, sorting that needs to be done...I get started, get tired, and call it a day sometimes after only an hour! Sometimes, I get more done in a day. Fortunately, I'm not feeling a lot of pressure, so I'm able to take my time. I've kept my initial leave from work through Labor Day to accomplish all these "to do" items.
So many memorials have been received, and again, we are so appreciative. I would like to use this tool to keep you all posted on some of the other ways Jesse's legacy is being tributed and remembered. Some of you chose your own hospices, churches, and cancer research, we're so honored that you sent us correspondence to share these. God bless and will post again another day. :)
So many memorials have been received, and again, we are so appreciative. I would like to use this tool to keep you all posted on some of the other ways Jesse's legacy is being tributed and remembered. Some of you chose your own hospices, churches, and cancer research, we're so honored that you sent us correspondence to share these. God bless and will post again another day. :)
Tuesday, August 9, 2011 11:06 AM, CDT
Jesse's memory lives on...
I hope you all don't mind that I use this wonderful tool (caringbridge) to send mine and Jesse's family's continued gratitude for your extremely kind and thoughtful words, condolences, and donations. Yesterday, Dawn shared with me that she received a note from Mayo Clinic informing her that someone had made a donation to gastric cancer research in Jesse's name. We both cried happy tears. Before Jesse passed, a close family friend donated blood and platelets in Jesse's honor. More happy tears. :)
Today, I used Jesse's memorial fund to make a donation to Paulos Group; the organization our great friend Shane and his family are partnered with (http://www.paulosgroup.org/). As I've mentioned, they're currently in Haiti helping build communities as part of their earthquake relief effort. I knew without a doubt that Jesse would have wanted to help Shane with any extra he had to offer and fulfilling Jesse's wishes helps give me comfort in this difficult time.
I wanted to share these stories with all of you who follow this page to thank you graciously as well as help inspire any of you who want to donate in Jesse's memory. These are just three of so many ways you can honor Jesse. Again, thank you for your continued support to me and Jesse's family during this heartbreaking time. Wednesday, August 3, 2011 7:34 PM, CDT
Jesse, you are terribly missed...
Hi, everyone. Doing better today...I feel a little more normal anyway, and I've been talking to Jesse several times daily. I asked him to help keep me strong, and he definitely has. Yesterday, was so difficult. I remember in the past, I've always wondered how anyone could plan a funeral in a few short days. Well, I'm learning that keeping busy in honor of the one you love most helps immensely. We met with the funeral director at Ranfranz and Vine, we met at the Evergreen Cemetery in Dover and purchased a plot right next to Jesse's maternal grandpa, just as he wished. Then, we set out for a headstone, and I believe we may have found just what we're looking for at Monuments in Lewiston. We grabbed lunch afterward at Goodsport's in St. Charles where Jesse used to stop every Wednesday when he was in a golf league with Ron, Pher, Duncan, and later, Lawler back when Jesse and I lived in Rochester together. We played about $40 in pulltabs and pulled a $300 winner...Guess who was responsible for that? :)
Also, I'm VERY pleased and relieved to share with you all that our wonderful friend, Shane, has traveled all the way from Haiti and agreed to officiate Jesse's funeral service on Saturday. He was in Miami earlier today and flies into Chicago at some point with an overnight to get here by tomorrow morning. A HUGE thank you to Kara, Shane's wife, who allowed him to leave her behind with five children until he returns! Then we learned this afternoon that Hurricane Emily is due to hit parts of Haiti tomorrow, so I'd like you all to send out a prayer for the Gauthier family that Hurricane Emily misses them. We all said a prayer at dinner as well and asked Jesse to look out for them. I have no doubt they're in terrific hands.
The specifics on the upcoming arrangements include a visitation or "wake" at Ranfranz and Vine on 55th St. and 18th Ave. in north Rochester on Friday from 4 pm to 8 pm. The funeral service will be held Saturday at 1 pm also at Ranfranz and Vine. Following the funeral, we will be following a MN State Patrol and Olmsted County Sherriff's Office combined escort to Evergreen Cemetery in Dover. Following the burial of Jesse's ashes, we will be congregating at the Dover Fire Hall (the same Brewfest was held at) for an early dinner/late luncheon. Most food will be provided, but pot luck is also accepted and appreciated.
In a special tribute to Jesse, I would like to ask, any of you who are reading this that have known Jesse and possess any framed favorite photos that have him in it, please bring them with you to the visitation on Friday evening. We'll be setting them on a table to share with all, and I'm confident you'll each have a story to share with each other about Jesse relating to these photos and how he's touched each of your lives. You've already done such a spectacular job of sharing many stories on this site. His family and I are indebted to you for these precious memories. You will all take your framed photos back with you afterward. So much of Jesse and I's life will be shared digitally because that is where we saved most of it, but he lived 28 years before I met him! Thank you all in advance for this favor. Please feel welcome to attend Jesse's visitation even if you never met him, but his story changed you or if you only met once and you think he may have forgotten about you. Don't hesitate. We're grateful for your presence. God bless.
Also, I'm VERY pleased and relieved to share with you all that our wonderful friend, Shane, has traveled all the way from Haiti and agreed to officiate Jesse's funeral service on Saturday. He was in Miami earlier today and flies into Chicago at some point with an overnight to get here by tomorrow morning. A HUGE thank you to Kara, Shane's wife, who allowed him to leave her behind with five children until he returns! Then we learned this afternoon that Hurricane Emily is due to hit parts of Haiti tomorrow, so I'd like you all to send out a prayer for the Gauthier family that Hurricane Emily misses them. We all said a prayer at dinner as well and asked Jesse to look out for them. I have no doubt they're in terrific hands.
The specifics on the upcoming arrangements include a visitation or "wake" at Ranfranz and Vine on 55th St. and 18th Ave. in north Rochester on Friday from 4 pm to 8 pm. The funeral service will be held Saturday at 1 pm also at Ranfranz and Vine. Following the funeral, we will be following a MN State Patrol and Olmsted County Sherriff's Office combined escort to Evergreen Cemetery in Dover. Following the burial of Jesse's ashes, we will be congregating at the Dover Fire Hall (the same Brewfest was held at) for an early dinner/late luncheon. Most food will be provided, but pot luck is also accepted and appreciated.
In a special tribute to Jesse, I would like to ask, any of you who are reading this that have known Jesse and possess any framed favorite photos that have him in it, please bring them with you to the visitation on Friday evening. We'll be setting them on a table to share with all, and I'm confident you'll each have a story to share with each other about Jesse relating to these photos and how he's touched each of your lives. You've already done such a spectacular job of sharing many stories on this site. His family and I are indebted to you for these precious memories. You will all take your framed photos back with you afterward. So much of Jesse and I's life will be shared digitally because that is where we saved most of it, but he lived 28 years before I met him! Thank you all in advance for this favor. Please feel welcome to attend Jesse's visitation even if you never met him, but his story changed you or if you only met once and you think he may have forgotten about you. Don't hesitate. We're grateful for your presence. God bless.
Tuesday, August 2, 2011 6:14 PM, CDT
Hello again, everyone. I'm having trouble expressing myself just yet, but wanted to post to let you all know that Jesse passed away today, August 2, 2011, at 1:28 pm surrounded by me, his Mom, and some other family. He was comfortable.
We are making arrangements through Ranfranz and Vine in Rochester for a Friday evening wake and Saturday afternoon funeral. I meet with them tomorrow for specifics and will post them at that time. Thank you for the sentiments.
We are making arrangements through Ranfranz and Vine in Rochester for a Friday evening wake and Saturday afternoon funeral. I meet with them tomorrow for specifics and will post them at that time. Thank you for the sentiments.
Tuesday, August 2, 2011 9:54 AM, CDT
Hi, everyone. Thank you so much for the well wishes on our "vow renewal" wedding weekend. The day was warm, and Jesse was able to come outside and enjoy much of it. We also had a nice visit from some Madery cousins Friday night! Big thank you to them for the very special gift of a camcorder. We were able to capture our vow renewal, good time with family and friends, and gift opening Sunday afternoon. Jesse slept through most of the gift opening, he was tuckered from Saturday! Thankfully, our 6-year-old niece, Sienna, was more than willing to open every gift and card for us! We read them all together while my sister videoed. We received so many nice things, and I want to specially thank each and every one of you for those thoughtful gifts. Until I can get to my handwritten thank-you's, please know how much we appreciated the nice things we received!!!!! Including a very special wedding cake that my Godmomma made for us. Our cupcake order had a small catastrophe because of the heat and didn't make it, but we had plenty of cake with some still leftover. Thanks, Aunt Bonny Jo!
Also, Jesse has been enjoying our wedding gift from my parents, sister, brother-in-law and good friend Audra...a new LazyBoy! Big thanks to them and to my former co-worker and friend, Shirley, at Trade Mart for helping them pick it out. Jesse has basically been sleeping in it since Sunday, so I'm thinking its pretty comfortable. I feel its more comfortable than the bed has been for Jesse's most recent struggles. He is sleeping most of the time now. He wakes up occasionally and is a little confused and restless, but fortunately seems to fall back asleep after only a few minutes of this. We have increased his anxiety med and pain med to help with this. Unfortunately, we're still messing around with solu-tabs and liquids that are hard to administer to a sleeping guy! Our adamant request is to start IV meds today, and our hope is that will be happening soon. We've been in contact with the people at hospice to make this happen, so this transition should be happening soon. Help us pray it will be sooner than later! Thanks and love to you all!
Also, Jesse has been enjoying our wedding gift from my parents, sister, brother-in-law and good friend Audra...a new LazyBoy! Big thanks to them and to my former co-worker and friend, Shirley, at Trade Mart for helping them pick it out. Jesse has basically been sleeping in it since Sunday, so I'm thinking its pretty comfortable. I feel its more comfortable than the bed has been for Jesse's most recent struggles. He is sleeping most of the time now. He wakes up occasionally and is a little confused and restless, but fortunately seems to fall back asleep after only a few minutes of this. We have increased his anxiety med and pain med to help with this. Unfortunately, we're still messing around with solu-tabs and liquids that are hard to administer to a sleeping guy! Our adamant request is to start IV meds today, and our hope is that will be happening soon. We've been in contact with the people at hospice to make this happen, so this transition should be happening soon. Help us pray it will be sooner than later! Thanks and love to you all!
Friday, July 29, 2011 10:34 AM, CDT
Hello...we continue to struggle with pain control. Jesse said last night he felt, "a lot of pressure, as if I'm going to explode." The lump at his abdomen has worsened. I can't remember if I shared in a previous post, this lump was determined to be either scar tissue, as it is near Jesse's previous gastrostomy attempt site, tubing, as it is also near the ascites drain tube, or the actual tumor(s) itself. The protrusion seems worse yesterday and today and his skin is now discolored from it. I just put a call in to our nurse to come over and check it out and possibly make more changes to pain meds. We've been making several changes this week already...
I'm happy and grateful to say we were able to get over 80% of our deposit to Cragun's returned to us. Diane has been so wonderful to us and follows our story on here daily. Thank you so much, Diane and Mrs. Cragun.
Last night I received a special treat from our florist, Rachel. She left some of the flowers that would have been my bouquet with a vase and a big purple rock she retrieved from the lake at Cragun's! How special and thoughtful, thank you, Rachel.
We're looking forward to visitors today, family tomorrow, and friends on Sunday. I hope we're able to find a regimen that makes Jesse more comfortable. Thanks to so many of you for sending wedding gifts and cards. We're overwhelmed by your generosity...I'm not sure how else to describe the feeling of receiving gifts from you all on top of the generous donations I know you all have given us through this struggle. We're so blessed. Thank you.
I'm happy and grateful to say we were able to get over 80% of our deposit to Cragun's returned to us. Diane has been so wonderful to us and follows our story on here daily. Thank you so much, Diane and Mrs. Cragun.
Last night I received a special treat from our florist, Rachel. She left some of the flowers that would have been my bouquet with a vase and a big purple rock she retrieved from the lake at Cragun's! How special and thoughtful, thank you, Rachel.
We're looking forward to visitors today, family tomorrow, and friends on Sunday. I hope we're able to find a regimen that makes Jesse more comfortable. Thanks to so many of you for sending wedding gifts and cards. We're overwhelmed by your generosity...I'm not sure how else to describe the feeling of receiving gifts from you all on top of the generous donations I know you all have given us through this struggle. We're so blessed. Thank you.
Sunday, July 24, 2011 10:18 PM, CDT
Cousin Larry, thank you so much for posting that response. I am sitting in a nice, cool, relaxing living room as I type this update! We can't thank Joey and K&S enough for such an amazing gift. I also want to send out an equally big thank you to the Bob Buckmeier Foundation who sent a check to Jesse and I for a very generous amount. We're using it to pay bills, as I am still on unpaid leave and Jesse's pay was interrupted by the government shutdown. No worries now that the government is back up and running! Thanks to my sister, Kayla, who does the hair of the lovely ladies with the Bob Buckmeier Foundation. My mother-in-law and I want to try and make it to Deer Creek for your next event in September. We are grateful for your donation, and I admire what you've done with your father-in-law's memory. Bless you.
I believe another thanks is in order for Jesse's amazing "family" at the Minnesota State Patrol...it sounds like many who were able to, have donated their hard-earned vacation hours to be paid out to Jesse and I to continue aiding us with our financial responsibilities. Vacation donation is a wonderful benefit to have through your employer. Last but NOT least, thanks to Fran, Yvonne, and Josh (our fantastic neighbors) for keeping our yard well trimmed, especially in this awful heat! We're grateful for you every day.
Unfortunately, last night and today have been a bit rougher on us for pain control. I've noticed Jesse has actually experienced a bit less nausea and dry heaving, but struggles with the pain. When I ask, he has a hard time describing this pain into words, which makes it all the more difficult for me, Dawn, and the nurses trying to help him. I'm confident we'll make more changes this week that will hopefully help this. Last night was difficult for sleep. I hope tonight goes better. Dawn helped me tuck Jesse in a short while ago here, and I'll be heading in to hook up his TPN shortly. His hydration "ball" I hooked up earlier must have had a kink in the line because it had not progressed much when I came to hook up Jesse's TPN 45 mins ago. No big deal, I'll just hook TPN up once the ball is finished. In the meantime, I had time to post this update.
Thanks again, always, to so many of you. We're looking forward to a few visits this week and time with our families this weekend. My heart still breaks for the day we were supposed to have...I understand our love will not be changed nor our commitment to each other, officially made in May, but we spent just shy of 18 months planning for that day, and now things are different. I feel bad for those of you that had to drastically change your plans but am grateful for those of you who adapted so well and are taking this time to enjoy your other family and friends. We love you.
I believe another thanks is in order for Jesse's amazing "family" at the Minnesota State Patrol...it sounds like many who were able to, have donated their hard-earned vacation hours to be paid out to Jesse and I to continue aiding us with our financial responsibilities. Vacation donation is a wonderful benefit to have through your employer. Last but NOT least, thanks to Fran, Yvonne, and Josh (our fantastic neighbors) for keeping our yard well trimmed, especially in this awful heat! We're grateful for you every day.
Unfortunately, last night and today have been a bit rougher on us for pain control. I've noticed Jesse has actually experienced a bit less nausea and dry heaving, but struggles with the pain. When I ask, he has a hard time describing this pain into words, which makes it all the more difficult for me, Dawn, and the nurses trying to help him. I'm confident we'll make more changes this week that will hopefully help this. Last night was difficult for sleep. I hope tonight goes better. Dawn helped me tuck Jesse in a short while ago here, and I'll be heading in to hook up his TPN shortly. His hydration "ball" I hooked up earlier must have had a kink in the line because it had not progressed much when I came to hook up Jesse's TPN 45 mins ago. No big deal, I'll just hook TPN up once the ball is finished. In the meantime, I had time to post this update.
Thanks again, always, to so many of you. We're looking forward to a few visits this week and time with our families this weekend. My heart still breaks for the day we were supposed to have...I understand our love will not be changed nor our commitment to each other, officially made in May, but we spent just shy of 18 months planning for that day, and now things are different. I feel bad for those of you that had to drastically change your plans but am grateful for those of you who adapted so well and are taking this time to enjoy your other family and friends. We love you.
Thursday, July 21, 2011 4:36 PM, CDT
Well, I was sitting down to type this update when I received a phone call that made me forget half of what I planned to update...More on that in a sec, I'm starting to remember a few things!
Jesse's labs were good last week, so our recent troubles with low blood glucose (42) and dehydration our stable for now. Thanks, Dan! I speak with Dan at Walgreens who prepares Jesse's TPN and extra hydration "balls" (they are shaped like balls) every week after he receives Jesse's lab results. Nurse Lori comes to take those labs every Tuesday, and she's been diligent about making changes to keep Jesse's PICC site open like upping his heparin (blood thinner) and keeping it clean and free of skin irritation. Thanks, Lori! We also get two visits per week from our hospice nurse, Mary Kay, who has been with us for a few months now. She is also diligent on making changes to Jesse's pain and nausea meds. We just made another change yesterday that seems to be improving Jesse's symptoms. We upped his methadone and added more anti-nausea. All of our troubles with nausea sprout from how well that stupid pump is working (we have a love-hate relationship), and Mary Kay sent us a few more drainage containers that are so far working well today! However, the last new one we received quit working after the first day, and Jesse suffered a miserable night because of it. All I can do is hope and pray the stupid thing does what it's supposed to, but some days I can't help but wonder...Is this really the best our far advanced society has come medically for these sorts of situations? Of course, I could go on and on that topic and why there is still no cure for cancer, but where will that really get us at this point?
Okay, back to my introduction. Part of my pre-phone call update was that we have decided to get central air! The old house here was set up for it at some point, but the old unit just acts as an outdoor eye sore now. Our SUPER WONDERFUL best man/friend Joey had another suggestion for us on this subject of central air because he happened to be replacing the unit in his home because it is not large enough. Since it still works fine, and our home is smaller than Joey's, he asked if we'd like to have it as well as checked in with K&S Heating and Air to get a cost estimate on having it installed here in our home. The cost was such that Joey offered to "wedding gift" us half if we wanted to cover the other half, which was very reasonable and we agreed to. (By the way, Joey, the use of the old unit alone, not to mention the refrigerator is MORE THAN enough wedding gifts!! We love you.)
Bob from K&S was here bright and early this morning to assess the installation capabilities of our house. He said it should be no problem and said he'd call to schedule an installation day. Now, I'm starting to get excited because the setup we have currently is two window units (provided by my excellent and lovely parents/Grandma); one in our bedroom downstairs and one upstairs. To keep our living room comfortable then, we have propped a fan in our doorway, shut up the rest of the house, and crank that thing as cold as it will go! Unfortunately, when Momma Dawn wanted to turn hers on upstairs at night, we'd blow a fuse...everytime until I moved the fan to another outlet, shut off the washer, dryer, and dishwasher, and didn't turn on the bathroom lights. (I'm chuckling as I type this).
So, we're excited about central air being put in. Then I get the phone call: K&S Heating and Air has decided to wave ALL installation costs. Since Joey gifted us his old unit, this means we are having central air installed (tomorrow!) at no charge. Completely free. Just out of the kindness of their hearts. This brought a wave of happy tears for me and Jesse. Just another magnificent show of purely admirable human nature. Bob and the rest of you at K&S: THANK YOU. We are so grateful. God Bless you. God Bless you all.
Jesse's labs were good last week, so our recent troubles with low blood glucose (42) and dehydration our stable for now. Thanks, Dan! I speak with Dan at Walgreens who prepares Jesse's TPN and extra hydration "balls" (they are shaped like balls) every week after he receives Jesse's lab results. Nurse Lori comes to take those labs every Tuesday, and she's been diligent about making changes to keep Jesse's PICC site open like upping his heparin (blood thinner) and keeping it clean and free of skin irritation. Thanks, Lori! We also get two visits per week from our hospice nurse, Mary Kay, who has been with us for a few months now. She is also diligent on making changes to Jesse's pain and nausea meds. We just made another change yesterday that seems to be improving Jesse's symptoms. We upped his methadone and added more anti-nausea. All of our troubles with nausea sprout from how well that stupid pump is working (we have a love-hate relationship), and Mary Kay sent us a few more drainage containers that are so far working well today! However, the last new one we received quit working after the first day, and Jesse suffered a miserable night because of it. All I can do is hope and pray the stupid thing does what it's supposed to, but some days I can't help but wonder...Is this really the best our far advanced society has come medically for these sorts of situations? Of course, I could go on and on that topic and why there is still no cure for cancer, but where will that really get us at this point?
Okay, back to my introduction. Part of my pre-phone call update was that we have decided to get central air! The old house here was set up for it at some point, but the old unit just acts as an outdoor eye sore now. Our SUPER WONDERFUL best man/friend Joey had another suggestion for us on this subject of central air because he happened to be replacing the unit in his home because it is not large enough. Since it still works fine, and our home is smaller than Joey's, he asked if we'd like to have it as well as checked in with K&S Heating and Air to get a cost estimate on having it installed here in our home. The cost was such that Joey offered to "wedding gift" us half if we wanted to cover the other half, which was very reasonable and we agreed to. (By the way, Joey, the use of the old unit alone, not to mention the refrigerator is MORE THAN enough wedding gifts!! We love you.)
Bob from K&S was here bright and early this morning to assess the installation capabilities of our house. He said it should be no problem and said he'd call to schedule an installation day. Now, I'm starting to get excited because the setup we have currently is two window units (provided by my excellent and lovely parents/Grandma); one in our bedroom downstairs and one upstairs. To keep our living room comfortable then, we have propped a fan in our doorway, shut up the rest of the house, and crank that thing as cold as it will go! Unfortunately, when Momma Dawn wanted to turn hers on upstairs at night, we'd blow a fuse...everytime until I moved the fan to another outlet, shut off the washer, dryer, and dishwasher, and didn't turn on the bathroom lights. (I'm chuckling as I type this).
So, we're excited about central air being put in. Then I get the phone call: K&S Heating and Air has decided to wave ALL installation costs. Since Joey gifted us his old unit, this means we are having central air installed (tomorrow!) at no charge. Completely free. Just out of the kindness of their hearts. This brought a wave of happy tears for me and Jesse. Just another magnificent show of purely admirable human nature. Bob and the rest of you at K&S: THANK YOU. We are so grateful. God Bless you. God Bless you all.
Tuesday, July 19, 2011 7:39 PM, CDT
Jesse and I decided today that we are going to limit our get-together here at our home on our wedding day to our immediate family; parents, siblings, and their families. Obviously, we love our aunts, uncles, and cousins, but we have so many! And I feel Jesse will be more comfortable with less people. Anyone who had planned to travel a long distance to be near us here in Minnesota is still welcome to come visit us. As well, all the rest of you; our family, friends, and originally invited wedding guests are welcome to visit anytime. Just please call, text, or email a date and time you are leaning towards, so we can be prepared for your visit. Thank you.
Thank you so much to those of you who have brought wedding gifts, lovely things for our home, sent cards, and made donations in honor of our love for each other. We're so blessed and thankful for you all.
Jesse is resting as I type this. Momma Dawn has been staying with us since Saturday, and we very much like having her here! We also received our new fridge today, and it is producing ice as I sit here. ;) Jesse still struggles with dry heaves/nausea intermittently as well as pain. He is still on long acting pain meds scheduled regularly and fast acting pain meds for breakthrough pain. These give him fairly good relief. The process is what it is, I suppose. That's all I have for today, folks. :)
Thank you so much to those of you who have brought wedding gifts, lovely things for our home, sent cards, and made donations in honor of our love for each other. We're so blessed and thankful for you all.
Jesse is resting as I type this. Momma Dawn has been staying with us since Saturday, and we very much like having her here! We also received our new fridge today, and it is producing ice as I sit here. ;) Jesse still struggles with dry heaves/nausea intermittently as well as pain. He is still on long acting pain meds scheduled regularly and fast acting pain meds for breakthrough pain. These give him fairly good relief. The process is what it is, I suppose. That's all I have for today, folks. :)
Monday, July 18, 2011 11:29 AM, CDT
The only thing I think we have to update is continued thanks and gratitude. Since my last post, we've had overwhelming responses, reassurance, and support through cards, letters, and emails. To know that Jesse's story is encouraging so many of you, especially those of you we barely know, to spend more time with loved ones, to stop and feel the breeze, and to reach out to help...is what gets me through the days. And those days, for the most part, haven't changed much. Jesse continues to feel about the same, which isn't all that well. He's taking less medication, which keeps him more alert, but still sleeps often. This weekend, he enjoyed a visit with his groomsmen, and I stole their wives to spend time with me, my sisters, and some other close friends for a "girls day." It was fantastic, and thank you all that made it to see me! Big thank you to Doug, Marcia, and Tony at Wilsons Lakeside Winery for the fabulous girls day. Jesse, Dawn, and I are keeping cool and laying low this week. Feel free to contact me, if you'd like to visit. :)
Tuesday, July 12, 2011 4:23 PM, CDT
Sorry, when I copy and paste from Word, screwy things show up, but it appears as though you all got the jist. Thank you all so much for your beautiful sentiments and well wishes. In particular, I hope she doesn't mind, this personal email sent to me uses the elegant wording I've been struggling to grasp lately. She puts it so well, and I PRAY that what she mentions is what Jesse and I can do or are doing for everyone our story touches:
"Your message was truly inspiring and I hope that you know what you are going through with Jesse, the honesty in which you write, the struggles you are both going through, certainly have purpose. You are showing the world what relationships, love and compassion are all about. I’m sure this is not something you would have chosen for yourselves but you are teaching others about many things including how important it is to reach out for help, to allow others into our lives and to be transparent with adversity...And you have, I’m sure, assisted others with their own problems, and given perspective where it was badly needed. I shed a tear for you both, but I also am so grateful for your message and know that joy is there for you, in this world and the next."
Thank you so much for this message. Again, it summarizes the feelings I wish to portray when I often struggle to find the words. She used them so well, so I just had to share. Thank you ALL for your continued messages and emails. Even though I don't respond to them all, I receive them all, and they help.
I was just saying at lunch with my two Dad's today (Papa Sam and Papa Justin :)) that Jesse has sort of plateaued in the past couple weeks. His energy and weight took a major dive initially, and he is still at roughly 140 lbs and struggles with enough energy to cross the room, but this has not worsened. Some people have expressed concern about his mind, and Jesse's mind is alive and well! Too much so somedays ;) He doesn't have a lot of energy to laugh or smile, partake in conversations, or stay awake for large parts of the day, but when he is awake, he's listening, and he throws his 2 cents in where he feels is necessary. What I mean to say is that I'm slightly relieved not to have new surprises, hardships, hurdles, etc. in the past couple weeks. We've finally found a routine, which I shared a couple of posts back as far as TPN schedule, med schedule, draining schedule, bathing schedule, and staying on top of the pump that empties his stomach; it tends to act up occasionally (I have my eye on the damn thing as I type this). As you can probably imagine, this routine keeps me busy. I run errands and clean up when Jesse is resting, and I'm grateful to family and friends, especially Momma Dawn, who come to the house to visit me or stay with Jesse, so I can get out for small amounts of leisure time.
Well, I have to end here. Papa Sam put together one of our wonderful shower gifts, and I'm being summoned to inspect it! Love to you all.
"Your message was truly inspiring and I hope that you know what you are going through with Jesse, the honesty in which you write, the struggles you are both going through, certainly have purpose. You are showing the world what relationships, love and compassion are all about. I’m sure this is not something you would have chosen for yourselves but you are teaching others about many things including how important it is to reach out for help, to allow others into our lives and to be transparent with adversity...And you have, I’m sure, assisted others with their own problems, and given perspective where it was badly needed. I shed a tear for you both, but I also am so grateful for your message and know that joy is there for you, in this world and the next."
Thank you so much for this message. Again, it summarizes the feelings I wish to portray when I often struggle to find the words. She used them so well, so I just had to share. Thank you ALL for your continued messages and emails. Even though I don't respond to them all, I receive them all, and they help.
I was just saying at lunch with my two Dad's today (Papa Sam and Papa Justin :)) that Jesse has sort of plateaued in the past couple weeks. His energy and weight took a major dive initially, and he is still at roughly 140 lbs and struggles with enough energy to cross the room, but this has not worsened. Some people have expressed concern about his mind, and Jesse's mind is alive and well! Too much so somedays ;) He doesn't have a lot of energy to laugh or smile, partake in conversations, or stay awake for large parts of the day, but when he is awake, he's listening, and he throws his 2 cents in where he feels is necessary. What I mean to say is that I'm slightly relieved not to have new surprises, hardships, hurdles, etc. in the past couple weeks. We've finally found a routine, which I shared a couple of posts back as far as TPN schedule, med schedule, draining schedule, bathing schedule, and staying on top of the pump that empties his stomach; it tends to act up occasionally (I have my eye on the damn thing as I type this). As you can probably imagine, this routine keeps me busy. I run errands and clean up when Jesse is resting, and I'm grateful to family and friends, especially Momma Dawn, who come to the house to visit me or stay with Jesse, so I can get out for small amounts of leisure time.
Well, I have to end here. Papa Sam put together one of our wonderful shower gifts, and I'm being summoned to inspect it! Love to you all.
Monday, July 11, 2011 2:06 PM, CDT
I have been writing and rewriting this post in my mind for the last couple days…since Jesse and I decided we had to cancel our wedding at Cragun’s. We’re very sad to be posting this news. I was surprised to find, so many of you close friends and family we told in person were relieved for us. We were not surprised that all of you have been understanding and supportive. Jesse and I are just so disappointed and feel absolutely terrible we weren’t able to come to this decision sooner than the invites going out. We’ve been taking one day at a time, and so we are keeping you all informed as these decisions are made.
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There is some happy news I’d like to share, however, that Jesse and I had kept to ourselves until now. We were legally married on May 1, in our home, by our WONDERFUL officiate, Jill. We only included our two witnesses: best man, Joey and matron of honor, Kayla. Our hope was to make it to July 30, obviously. Even in May, Jesse’s illness was very hard to predict. Now, we are enjoying each other as much as we can everyday.
I hope that my updates on here have given you all the truth that Jesse and I are facing now. He is preparing for something I know so little about, and I’m struggling everyday with being all that I can for him. Jesse is not afraid, so please take comfort in that thought. I understand the importance of my own health, as many of you have expressed concern over, so please don’t worry. I cannot say enough how wonderful, amazing, supportive, generous, and comforting our families and friends are. Yesterday, despite the news of our canceled wedding, Jesse’s aunts put on a bridal shower for me. I told them yesterday, and I’d like to say again here how special I felt and how much Jesse and I appreciate and love you all. The shower was down in Jesse’s hometown, so I brought him with me to hang at his Mom’s during. Then after the shower, most of Jesse’s family came to see him at his Mom’s. Jesse was feeling pretty well for this visit and spent much of it outside! I’m so glad his aunts, uncles, cousins, and immediate family could spend time with him.
Jesse has expressed the importance of seeing and spending time with many people in the coming weeks. We’ve also discussed with family the possibility of creating a smaller wedding celebration or ceremony here at the house and whether to do that sooner than the 30th or on the 30th. We’re still deciding what Jesse might be up for, but we are hoping to make it happen at our home on the 30th. I’ve left our parents in charge of putting together whatever we determine Jesse is up for as the day approaches. He hasn’t been too keen on a repeat ceremony, so we most likely won’t be dressing up. I think our flower girl, Sienna, is saddest of all about this. However, Jesse expressed he still wanted our fabulous cupcake lady (Cala!) to bring the cupcakes we taste tested and decided on back in April for our family and friends to still enjoy that day, so we’re still working out details. I’m so happy he was able to try and enjoy those cupcakes once at least. Same with our wedding entrées, Jesse and I were able to enjoy them once, which makes it just a little bit easier to give them up now.
Our home and yard are small, so we’re leaning towards an open-house style event. That way our guests would be rotating through. Anyone who can stand the heat is welcome to sit outside all day, though! Our parents have talked about getting a large tent to at least provide more shade. I will keep you posted on how the day comes together, but again, I want my hands in very little. Typing this post, emailing our photographer, florist, wedding coordinator, wedding decorator, and DJ was time-consuming enough.
Speaking of, our wedding coordinator at Cragun’s seems to be doing a wonderful job pulling for our guests to enable you all to cancel your reservations without penalty. Again, her name is Diane, so if you call to cancel and have any problems, ask to speak with her. Thank you so much, Diane, and thanks to Mr. and Mrs. Cragun who probably allowed her this flexibility. Some of our guests have expressed a desire to hold their reservation and still go up and use their already-requested vacation time to enjoy their family in the water and sunshine Cragun’s has to offer, and Jesse and I would like to express something very important here. Please go. Please enjoy your loved ones and any precious time you can spend with each other. Enjoy the beautiful weather, so rare to this state. You all work so hard and deserve it! Show everyone you love everyday, as often as you can, and this would be the greatest wedding present Jesse and I could ask for. Life is too short…
In addition to the wonderful gifts I received at both of my showers (my fabulous aunts also threw one for me back in June) that are slowly but surely turning our house into a more comfortable home, our best man bought us a new refrigerator this weekend! With an ice maker; that was key. :) Jesse has an insatiable appetite for ice! Really, our best man and great friend, Joey, couldn’t be stopped once he was on a mission to find us a new fridge. Thank you so much, Joey, and thank you to my wonderful uncles, Mike and Duane, who came up and installed a water line for us to hook our new ice-maker fridge up to. I want to say to all of you that these gifts you have given us have made our home closer and closer to the dream home Jesse and I always wished for each other. Just when I start to feel guilty for accepting all the gifts you all have given us, I remember that Jesse deserves to see as much of his dream home as possible come together during his last months here. He worked SO HARD on this home while he was able, and the reward of watching it come together more and more because of all of you is worth the smile it puts on his face.
Like I said at the beginning of this post, I’ve been writing it in my head for awhile, so I hope I mentioned everything I wanted to. We love you all and will keep you posted. I’m sorry that those of you looking forward to our day with us won’t get to see it. It was going to be beautiful. Any of you that planned to travel a long distance to be there: We would still love to see you. Make the trip. Stay with family. See your friends. We know you and invited you because we met you through our friends or family. Take this opportunity to come and see us one day and some of them the other days, depending on the length of your trip. Again, you never know when you’ll have the opportunity to enjoy those precious moments or when the option will be taken from you.
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There is some happy news I’d like to share, however, that Jesse and I had kept to ourselves until now. We were legally married on May 1, in our home, by our WONDERFUL officiate, Jill. We only included our two witnesses: best man, Joey and matron of honor, Kayla. Our hope was to make it to July 30, obviously. Even in May, Jesse’s illness was very hard to predict. Now, we are enjoying each other as much as we can everyday.
I hope that my updates on here have given you all the truth that Jesse and I are facing now. He is preparing for something I know so little about, and I’m struggling everyday with being all that I can for him. Jesse is not afraid, so please take comfort in that thought. I understand the importance of my own health, as many of you have expressed concern over, so please don’t worry. I cannot say enough how wonderful, amazing, supportive, generous, and comforting our families and friends are. Yesterday, despite the news of our canceled wedding, Jesse’s aunts put on a bridal shower for me. I told them yesterday, and I’d like to say again here how special I felt and how much Jesse and I appreciate and love you all. The shower was down in Jesse’s hometown, so I brought him with me to hang at his Mom’s during. Then after the shower, most of Jesse’s family came to see him at his Mom’s. Jesse was feeling pretty well for this visit and spent much of it outside! I’m so glad his aunts, uncles, cousins, and immediate family could spend time with him.
Jesse has expressed the importance of seeing and spending time with many people in the coming weeks. We’ve also discussed with family the possibility of creating a smaller wedding celebration or ceremony here at the house and whether to do that sooner than the 30th or on the 30th. We’re still deciding what Jesse might be up for, but we are hoping to make it happen at our home on the 30th. I’ve left our parents in charge of putting together whatever we determine Jesse is up for as the day approaches. He hasn’t been too keen on a repeat ceremony, so we most likely won’t be dressing up. I think our flower girl, Sienna, is saddest of all about this. However, Jesse expressed he still wanted our fabulous cupcake lady (Cala!) to bring the cupcakes we taste tested and decided on back in April for our family and friends to still enjoy that day, so we’re still working out details. I’m so happy he was able to try and enjoy those cupcakes once at least. Same with our wedding entrées, Jesse and I were able to enjoy them once, which makes it just a little bit easier to give them up now.
Our home and yard are small, so we’re leaning towards an open-house style event. That way our guests would be rotating through. Anyone who can stand the heat is welcome to sit outside all day, though! Our parents have talked about getting a large tent to at least provide more shade. I will keep you posted on how the day comes together, but again, I want my hands in very little. Typing this post, emailing our photographer, florist, wedding coordinator, wedding decorator, and DJ was time-consuming enough.
Speaking of, our wedding coordinator at Cragun’s seems to be doing a wonderful job pulling for our guests to enable you all to cancel your reservations without penalty. Again, her name is Diane, so if you call to cancel and have any problems, ask to speak with her. Thank you so much, Diane, and thanks to Mr. and Mrs. Cragun who probably allowed her this flexibility. Some of our guests have expressed a desire to hold their reservation and still go up and use their already-requested vacation time to enjoy their family in the water and sunshine Cragun’s has to offer, and Jesse and I would like to express something very important here. Please go. Please enjoy your loved ones and any precious time you can spend with each other. Enjoy the beautiful weather, so rare to this state. You all work so hard and deserve it! Show everyone you love everyday, as often as you can, and this would be the greatest wedding present Jesse and I could ask for. Life is too short…
In addition to the wonderful gifts I received at both of my showers (my fabulous aunts also threw one for me back in June) that are slowly but surely turning our house into a more comfortable home, our best man bought us a new refrigerator this weekend! With an ice maker; that was key. :) Jesse has an insatiable appetite for ice! Really, our best man and great friend, Joey, couldn’t be stopped once he was on a mission to find us a new fridge. Thank you so much, Joey, and thank you to my wonderful uncles, Mike and Duane, who came up and installed a water line for us to hook our new ice-maker fridge up to. I want to say to all of you that these gifts you have given us have made our home closer and closer to the dream home Jesse and I always wished for each other. Just when I start to feel guilty for accepting all the gifts you all have given us, I remember that Jesse deserves to see as much of his dream home as possible come together during his last months here. He worked SO HARD on this home while he was able, and the reward of watching it come together more and more because of all of you is worth the smile it puts on his face.
Like I said at the beginning of this post, I’ve been writing it in my head for awhile, so I hope I mentioned everything I wanted to. We love you all and will keep you posted. I’m sorry that those of you looking forward to our day with us won’t get to see it. It was going to be beautiful. Any of you that planned to travel a long distance to be there: We would still love to see you. Make the trip. Stay with family. See your friends. We know you and invited you because we met you through our friends or family. Take this opportunity to come and see us one day and some of them the other days, depending on the length of your trip. Again, you never know when you’ll have the opportunity to enjoy those precious moments or when the option will be taken from you.
Thursday, July 7, 2011 1:13 PM, CDT
Hi, all. Jesse had a great fourth of July. He's really been feeling about the same, but we made a car trip down to Kasson to join my parents, family, and friends at their annual fourth of July picnic. It was wonderful to see everyone, especially my Gramma who has been in and out of the hospital a lot lately, so we hadn't seen her since February! Love you, Gramma. We got Jesse set up in one of those no-gravity reclining lawn chairs and hooked him up to an extension cord, and he enjoyed sitting outside for four hours! We went home and crashed after that; took a lot of energy. ;)
Unfortunately, Jesse decided earlier last week that he didn't feel up for the concert last night. The boys stopped by on their way up and came back afterwards with a signed poster for Jesse. ;) We had a good visit with Lofty, Haggy, Ron, Pete, Kayla, and Greg, and I just want to say, I love you guys so much. Thank you for being so amazing.
And thanks to all of you reading, and as always, thanks to all our friends and family. We cherish and love you so much!
Unfortunately, Jesse decided earlier last week that he didn't feel up for the concert last night. The boys stopped by on their way up and came back afterwards with a signed poster for Jesse. ;) We had a good visit with Lofty, Haggy, Ron, Pete, Kayla, and Greg, and I just want to say, I love you guys so much. Thank you for being so amazing.
And thanks to all of you reading, and as always, thanks to all our friends and family. We cherish and love you so much!
Friday, July 1, 2011 12:12 PM, CDT
Hello. After I updated yesterday, I set out to accomplish some errands. I was able to get a handicap parking sticker...Its a 30-day temporary paper one, and the guy at the DMV promised me I'd most likely have to get another 30-day temporary before the government would have the permanent one out to us due to the shutdown! Sheesh. I tried two pharmacies to fill Jesse's prescriptions: Wal-Mart just said, "Don't have those," but Walgreens in Hastings made about seven or more phone calls for me until we found where we could get them. Way to go Walgreens! Jesse's meds are all dissolvable tabs that apparently are not commercially available. We got on them during hospice, so we had to track down the pharmacy that hospice used, and its in Blaine. Guess where I'm headed after this update? Our oncologist had mentioned getting back on hospice for this reason...convenient meds. On hospice, they just ship to the door. I imagine we'll be making the transition back soon.
Last night was a good one. Jesse and I both slept well, and he was only up once. I hope the increased pain med is helping; we'll see what tonight brings. The morning was going well, but our homecare nurse just arrived, and Jesse is now complaining of "upset stomach." He looks like he feels crummy. :(
So far today, our wheelchair has arrived! I hit another dead end on the battery-operated gastric pump. It is starting to look like they don't exist. :( They have similar pumps for lung aspiration, but not gastric. I'm going to do some more searching after this post...
Not sure what else to say for today...Thanks to all of you that are reaching out to me on the phone and in emails to offer anything you can to help. I can't say enough how much Jesse and appreciate and how blessed we are in that respect to have so many wonderful friends and family. As always, we love you.
Last night was a good one. Jesse and I both slept well, and he was only up once. I hope the increased pain med is helping; we'll see what tonight brings. The morning was going well, but our homecare nurse just arrived, and Jesse is now complaining of "upset stomach." He looks like he feels crummy. :(
So far today, our wheelchair has arrived! I hit another dead end on the battery-operated gastric pump. It is starting to look like they don't exist. :( They have similar pumps for lung aspiration, but not gastric. I'm going to do some more searching after this post...
Not sure what else to say for today...Thanks to all of you that are reaching out to me on the phone and in emails to offer anything you can to help. I can't say enough how much Jesse and appreciate and how blessed we are in that respect to have so many wonderful friends and family. As always, we love you.
Thursday, June 30, 2011 12:58 PM, CDT
Hello. We've been struggling along here the past week or so. The initial relief of the NG tube has subsided a bit. Jesse is certainly not vomiting as often, but he's goes through the motions of vomiting with his dry heaving sometimes four times a day. He's not sleeping well at night and so neither am I, which is largely the reason I haven't updated as often...we're both very tired. It's been hard the last few days to think about a concert or a wedding and how we're going to get there. Jesse is just so uncomfortable. The last couple days he's felt very weak and dizzy. The pharmacists over at Walgreens are working feverishly to make changes to his TPN to ensure that he's well hydrated and getting enough nutrition, but its a delicate balance. Jesse is now down to 142 pounds. TPN is not meant to help him gain weight, and lately it is definitely not giving him added energy.
Of course we brought all these concerns to our doctor appointment yesterday with little results. They changed some meds and up the pain meds. Jesse seems to sleep well for 4-6-hour intervals during the day when I'm watching him, but the night doesn't go as well. I don't know how often he is up, unless he wakes me, but he's waking me every 1-3 hours throughout the night. Most days now, I sleep when he sleeps to get caught up...of course that makes it hard to get things done like cleaning, shopping, picking up prescriptions, paying all our bills, etc. I've got a lot of them set up for automatic debit now, which is such a nice convenience to have because of all of your donations to our account. We thank you so much for that.
A typical day for Jesse and I consists of pain and anti-nausea meds every six hours: midnight, 6 am, noon, and 6 pm. He typically fills his gastric container every three to fours hours, depending if he's awake and drinking fluids or sleeping, so I change that in the middle of the night and several times throughout the day, which doesn't necessarily correlate with pill times, so then we're up more often in the night when we want to be sleeping. I hook Jesse up to his TPN around 9 at night and have to unhook and flush his line at 9 in the morning. Also, we've been adding hydration "balls" that are 250 mL and run over about 80 mins. We're trying to get three of those in a day now. Jesse's homecare nurse is here twice weekly: Tuesdays and Fridays, and she is wonderful at draining his ascites fluid off his stomach and changing/cleaning his PICC line when she is here. At first, I was needing to drain his fluid daily, but that has slowed considerably. We're only getting 1 Liter off twice weekly now, which is great because I don't know when I'd have time to do it, if she didn't do it for me! The days she comes, I am still sleeping or just waking up at noon or 1 o'clock. I hope she doesn't think I'm a lazy bum.
So, you can all see how hard it is to think about concerts and weddings. In order to accomplish either, we need Jesse's comfort level up first and foremost. Secondly, we looked into obtaining a battery-operated gastro-intestinal pump, so Jesse could manage traveling easier. The pump we have plugs into the wall. Jesse tolerated being unplugged from suction through the NG tube yesterday for his appointment for about an hour. Fortunately, they plugged him in as soon as we got there, or he might have been more miserable. The visit was long, waiting for the doctor, but waiting even longer for the prescription changes and refills. After an hour, they determined the pharmacy might not be able to fill the dissolvable tabs of some of the meds, and they just sent us home with the paperwork. Jesse couldn't wait any longer for them to be filled at that point, so I need to head into town today to see if I can get these filled.
We've also inquired about getting a wheelchair for around the house and to possibly use for the concert next week. Jesse's Dad has a Rascal or hoveround or whatever those battery-operated chairs are called, but this would be more ideal for the wedding for Jesse to get around where everything is handicap-accessible...Not ideal to have in the house. Our homecare nurse is working on this today. I'm waiting for a call back from some people working on the pump...again. They may be more expensive than just ordering our own pump online, so we may just end up going that route instead. Again, thanks to all of your generosity to our benefit account.
What else can I tell you? We're busy and tired and working hard to make Jesse comfortable. We want so much to make it to our upcoming special events...I'm hoping to start with getting Jesse down to my parents' place for their annual 4th of July picnic. Normally, we'd be at my Gramma's cabin in northern Wisconsin on the lake, but the travel time is too far, the accommodations may not be comfortable enough, and I don't think Jesse could tolerate a boat ride. He barely makes it outside to sit in a chair when he's unplugged from suction for an hour or two, which is such a bummer because summer is my favorite time of year, and we're spending it all inside. I hope all of you are enjoying your summers to the fullest with your loved ones...Take time off from work if you have it; life is too short.
Of course we brought all these concerns to our doctor appointment yesterday with little results. They changed some meds and up the pain meds. Jesse seems to sleep well for 4-6-hour intervals during the day when I'm watching him, but the night doesn't go as well. I don't know how often he is up, unless he wakes me, but he's waking me every 1-3 hours throughout the night. Most days now, I sleep when he sleeps to get caught up...of course that makes it hard to get things done like cleaning, shopping, picking up prescriptions, paying all our bills, etc. I've got a lot of them set up for automatic debit now, which is such a nice convenience to have because of all of your donations to our account. We thank you so much for that.
A typical day for Jesse and I consists of pain and anti-nausea meds every six hours: midnight, 6 am, noon, and 6 pm. He typically fills his gastric container every three to fours hours, depending if he's awake and drinking fluids or sleeping, so I change that in the middle of the night and several times throughout the day, which doesn't necessarily correlate with pill times, so then we're up more often in the night when we want to be sleeping. I hook Jesse up to his TPN around 9 at night and have to unhook and flush his line at 9 in the morning. Also, we've been adding hydration "balls" that are 250 mL and run over about 80 mins. We're trying to get three of those in a day now. Jesse's homecare nurse is here twice weekly: Tuesdays and Fridays, and she is wonderful at draining his ascites fluid off his stomach and changing/cleaning his PICC line when she is here. At first, I was needing to drain his fluid daily, but that has slowed considerably. We're only getting 1 Liter off twice weekly now, which is great because I don't know when I'd have time to do it, if she didn't do it for me! The days she comes, I am still sleeping or just waking up at noon or 1 o'clock. I hope she doesn't think I'm a lazy bum.
So, you can all see how hard it is to think about concerts and weddings. In order to accomplish either, we need Jesse's comfort level up first and foremost. Secondly, we looked into obtaining a battery-operated gastro-intestinal pump, so Jesse could manage traveling easier. The pump we have plugs into the wall. Jesse tolerated being unplugged from suction through the NG tube yesterday for his appointment for about an hour. Fortunately, they plugged him in as soon as we got there, or he might have been more miserable. The visit was long, waiting for the doctor, but waiting even longer for the prescription changes and refills. After an hour, they determined the pharmacy might not be able to fill the dissolvable tabs of some of the meds, and they just sent us home with the paperwork. Jesse couldn't wait any longer for them to be filled at that point, so I need to head into town today to see if I can get these filled.
We've also inquired about getting a wheelchair for around the house and to possibly use for the concert next week. Jesse's Dad has a Rascal or hoveround or whatever those battery-operated chairs are called, but this would be more ideal for the wedding for Jesse to get around where everything is handicap-accessible...Not ideal to have in the house. Our homecare nurse is working on this today. I'm waiting for a call back from some people working on the pump...again. They may be more expensive than just ordering our own pump online, so we may just end up going that route instead. Again, thanks to all of your generosity to our benefit account.
What else can I tell you? We're busy and tired and working hard to make Jesse comfortable. We want so much to make it to our upcoming special events...I'm hoping to start with getting Jesse down to my parents' place for their annual 4th of July picnic. Normally, we'd be at my Gramma's cabin in northern Wisconsin on the lake, but the travel time is too far, the accommodations may not be comfortable enough, and I don't think Jesse could tolerate a boat ride. He barely makes it outside to sit in a chair when he's unplugged from suction for an hour or two, which is such a bummer because summer is my favorite time of year, and we're spending it all inside. I hope all of you are enjoying your summers to the fullest with your loved ones...Take time off from work if you have it; life is too short.
Friday, June 24, 2011 5:31 PM, CDT
Still doing okay over here! Still battling with dry heaves and nausea intermittently. The pump continues to work, but Jesse gets clogged internally somehow. I've noticed that getting after he's been asleep for hours and not moved or drank anything, this is when he seems to "clog up" most often. Sometimes just moving around gets him going again, but often, he'll start dry heaving from nausea. :( We have an appointment with our oncologist next Wednesday to ask if there is anything that can be done, like adjusting placement of the tube or something. Our homecare nurse didn't have any suggestions.
We had a great visit from my cousin Patrick last night! He insisted on getting Jesse a half gallon of mint ice cream, which I blended with some milk today to thin out and make a milkshake for Jesse. He was in heaven, Patrick! He says he'll be having those more often now. :) More importantly, thanks for hanging out with me while Jesse slept. Love ya!
I feel like this weekend should be fairly quieter than some past. We'll be here, so if any of you would like to visit, just shoot me a text message. :) We also had a nice visit from Jesse's supervisor at State Patrol, Rick. He brought a thoughtful framed picture of the new class of trooper cadets and some cards from more 911 cares people. We appreciate your thoughts and generosity so very much!
We had a great visit from my cousin Patrick last night! He insisted on getting Jesse a half gallon of mint ice cream, which I blended with some milk today to thin out and make a milkshake for Jesse. He was in heaven, Patrick! He says he'll be having those more often now. :) More importantly, thanks for hanging out with me while Jesse slept. Love ya!
I feel like this weekend should be fairly quieter than some past. We'll be here, so if any of you would like to visit, just shoot me a text message. :) We also had a nice visit from Jesse's supervisor at State Patrol, Rick. He brought a thoughtful framed picture of the new class of trooper cadets and some cards from more 911 cares people. We appreciate your thoughts and generosity so very much!
Wednesday, June 22, 2011 5:47 PM, CDT
Well, I just got off the phone with my sister, and I said to her I was going to do this update but didn't have much to report. She said that sometimes that's good! Well, it is for today. Our first night in our new bed was fantastic. Jesse slept better than he has so far. I slept okay, my sleep cycle is completely wacky, and I'm fighting a minor cold. Jesse and Dawn our too. We picked something up somewhere...our luck, it was probably in the hospital. Anyway, my sister and I traveled to IKEA last night and picked up some new nightstands that will better house all the things Jesse is hooked up to at night. Papa Sam helped us put them together today, but Jesse did most of the work! He had the power drill out and everything. He was giving his dad a hard time about not doing too much of the putting together because he likes to do it himself, and it gives him something to do! I definitely smiled at that. Momma Dawn is here helping me keep up with laundry and stuff...SO glad to have her around.
I received a phone call from the pharmacist that regulates Jesse's IV nutrition (TPN), and he was telling me that Jesse's labs looked good from yesterday (our new homecare nurse was here to do labs and drain Jesse's belly), except that his potassium was a little high. He stated he would be adjusting Jesse's potassium supplement in the TPN to offset this, but he also mentioned that he's been following this website and noticed that Jesse is vomiting less, which could also contribute to high potassium, since he was probably losing potassium when he vomited more frequently. I think it is absolutely amazing, above, and beyond that he follows this site to better care for Jesse. Thanks, Dan!
Jesse's new homecare nurse is scheduled to see us and check in on stuff every Tuesday and Friday for now. Nausea was better last night and today but had one episode of dry heaving earlier. Again, nothing to come out because the pump is working well, so just trying to regulate that with meds. Expecting some visitors tomorrow that we're looking forward to...Oops! Gotta go, Jesse is calling me (I'm upstairs and he's downstairs...he calls me when he needs stuff :)
I received a phone call from the pharmacist that regulates Jesse's IV nutrition (TPN), and he was telling me that Jesse's labs looked good from yesterday (our new homecare nurse was here to do labs and drain Jesse's belly), except that his potassium was a little high. He stated he would be adjusting Jesse's potassium supplement in the TPN to offset this, but he also mentioned that he's been following this website and noticed that Jesse is vomiting less, which could also contribute to high potassium, since he was probably losing potassium when he vomited more frequently. I think it is absolutely amazing, above, and beyond that he follows this site to better care for Jesse. Thanks, Dan!
Jesse's new homecare nurse is scheduled to see us and check in on stuff every Tuesday and Friday for now. Nausea was better last night and today but had one episode of dry heaving earlier. Again, nothing to come out because the pump is working well, so just trying to regulate that with meds. Expecting some visitors tomorrow that we're looking forward to...Oops! Gotta go, Jesse is calling me (I'm upstairs and he's downstairs...he calls me when he needs stuff :)
Sunday, June 19, 2011 7:34 PM, CDT
Happy Father's Day to all you Papa's out there, especially Papa Sam and Papa Justin. :) We love you so much and hope you enjoyed your day. Jesse and I have just been laying low all day. The nights continue to be broken up sleep and so hard for either of us to truly feel rested. Unfortunately, we had some issues either with the pump or with a blockage that we've had to troubleshoot quite frequently since we arrived home. They sent us a new pump yesterday, and it was working well until I busted the container that came with it (cheap and flimsy!). We're now back to the old container with the new pump, and that seems to be working well most of the time. The night went well with this until about 6:30 this morning when Jesse vomited. I don't know if the pump slowed or clogged or why this happened. Since we backed way off on meds, we've got them back regularly scheduled now again. Jesse felt sick again around 10:30 this morning, but he had nothing to vomit because the pump had been working. I was disappointed with the return of symptoms, despite the functioning pump.
Fortunately, the rest of the day has been vomit-free, but every once in awhile, Jesse will sit up and say he "feels funny." He's said this before right before vomiting, so we trouble shoot to figure out the pump, last meds taken, etc. Doing this throughout the night every few hours is tiring, but we're grateful for the significant decrease in vomiting.
Jesse had another fantastic visit from good, close friends last night. Laughter is still the best medicine! It was guys' night all around, and I was privileged to be a part of it...I think :) We love you guys!
Fortunately, the rest of the day has been vomit-free, but every once in awhile, Jesse will sit up and say he "feels funny." He's said this before right before vomiting, so we trouble shoot to figure out the pump, last meds taken, etc. Doing this throughout the night every few hours is tiring, but we're grateful for the significant decrease in vomiting.
Jesse had another fantastic visit from good, close friends last night. Laughter is still the best medicine! It was guys' night all around, and I was privileged to be a part of it...I think :) We love you guys!
Friday, June 17, 2011 5:30 PM, CDT
Okay, that last post I typed several hours ago, but lost internet connection in the hospital. We are home and comfortably suctioning right now! Jesse is a little lost not having to worry about anti-nausea medications to take all the time. I keep reassuring him he can have whatever he wants whenever he wants, if he has symptoms, but he doesn't have any! He's a little lost, but we can adjust to feeling better! Talk more later...watchin' a movie. :)
Friday, June 17, 2011 5:29 PM, CDT
Well, the suction issue happened again. Actually, this time, I think it was a clog. As suspected, the first NG was too small and getting clogged, so they changed it last night at 11 pm. Ugh. That was awful, but Jesse pushed through it, and the result was worth it: Vomit-free evening and sleep! <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
The doctor and social worker came to talk to us yesterday to inform us that we'll be going home on Palliative Homecare now instead of Hospice. They felt homecare was now a better fit for Jesse. I think the maintenance of the NG tube is one more step away from what hospice would normally care for. Remember, they also don't maintain TPN. The downfall is access to meds. Hospice would order a med on the phone and have it delivered an hour later. Homecare does not manage meds, so we'll be doing all of that through Oncology here at Regions, so access will be during business hours only, for the most part, and we will have to retrieve most of Jesse's medications at the nearest pharmacy, which is 10 miles away. Not impossible, so hopefully it will be a good fit. We'll just have to try it and see. The Regions hospitalist is sending us home with refills of everything, so hopefully it will be a month or more before we'll need refills.
So, getting ready to get out of here in the next hour or so! I'm bummed the new bed doesn't come until Tuesday, but we'll make do. We're hoping Jesse feels up for some visitors that are scheduled for this weekend. We'll have a lot of settling to do with all of the new changes. Hope to have continued "happier" updates for awhile. :)
The doctor and social worker came to talk to us yesterday to inform us that we'll be going home on Palliative Homecare now instead of Hospice. They felt homecare was now a better fit for Jesse. I think the maintenance of the NG tube is one more step away from what hospice would normally care for. Remember, they also don't maintain TPN. The downfall is access to meds. Hospice would order a med on the phone and have it delivered an hour later. Homecare does not manage meds, so we'll be doing all of that through Oncology here at Regions, so access will be during business hours only, for the most part, and we will have to retrieve most of Jesse's medications at the nearest pharmacy, which is 10 miles away. Not impossible, so hopefully it will be a good fit. We'll just have to try it and see. The Regions hospitalist is sending us home with refills of everything, so hopefully it will be a month or more before we'll need refills.
So, getting ready to get out of here in the next hour or so! I'm bummed the new bed doesn't come until Tuesday, but we'll make do. We're hoping Jesse feels up for some visitors that are scheduled for this weekend. We'll have a lot of settling to do with all of the new changes. Hope to have continued "happier" updates for awhile. :)
Thursday, June 16, 2011 4:14 PM, CDT
Well, so far the NG-tube is working! :) Jesse would have been vomit-free yesterday and today, but the suction on the tube got turned off or something in the night. His stomach fluid built up, and he was really uncomfortable this morning and then vomited at 8 am. Momma Dawn knew something was up, and she got those nurses to check it and sure enough! They fixed it, and Jesse filled his cup up pretty quickly. Since that's been out, he's been fine all day. Pain is okay. Jesse is still kinda loopy, but not near what he was yesterday. They are switching him over to solu-tabs for as many meds as possible with the goal to go home tomorrow! We'll see if hospice can be ready for us that fast. They'll need to get us all the supplies for managing Jesse's NG-tube at home. Nothing ever happens fast, so will keep you all posted. I am very glad for a better day today than lately. Keep praying this NG-tube continues to work without complications. They keep forewarning us that the tube Jesse got isn't normally for managing this way, but we can only hope it will cooperate. If so, this tube will last six weeks before they'd need to replace it in the nose.
Wednesday, June 15, 2011 10:05 PM, CDT
No gastrostomy today. The procedure was scheduled at 1 pm, and they took Jesse down to do it but were unable to place the tube. The cancer has made Jesse's stomach wall too thick and hard, lacking the elasticity his stomach would need to be filled with air to stretch it open for the procedure. Jesse did not tolerate their efforts very well either. Thankfully, they sedated him quite a bit to aid his discomfort. Jesse came back to his hospital room with a nasogastric tube (NG tube) still in place. They inserted this through his nose and down his throat/esophagus to fill his stomach with air. Although his stomach did not tolerate being filled with air to be stretched, they left the tube in place to now use it instead to empty gastric fluid from his stomach. They had doubts this would work because they normally use a larger tube when the purpose is for suction, but our new favorite nurse, Greg, rigged up some attachments that were working well when I left the hospital earlier this evening. Working because the fluid is draining, but it is too early to tell if the nausea will subside. As of 8:30 pm, when I talked to Jesse last, he had not vomited. :)
Dawn stayed with Jesse last night, and I spent a mostly sleepless night at home. She went up to stay with Jesse again tonight, and I'm going to try again to rest. Just can't shut my brain off at night...
BIG THANK YOU to Gramma Arends and her crew (Dawn's brothers, sisters, and their spouses) for power cleaning Jesse and I's house tonight. The pictures look great, you did good! :) My Mom and I were out shopping, found, and purchased a new adjustable memory foam bed for Jesse to relax on once he returns home. I pray that is soon.
For now, the doctors aren't anticipating tomorrow either, and we'll have to see beyond that how Jesse does. They're continuing IV fluids and TPN in hospital. They are suggesting before Jesse comes home that his PICC line be redone to allow more ports, so he can do most all of his meds via IV at home, when he readmits to hospice care. Comfort and rest are the high priorities...
Dawn stayed with Jesse last night, and I spent a mostly sleepless night at home. She went up to stay with Jesse again tonight, and I'm going to try again to rest. Just can't shut my brain off at night...
BIG THANK YOU to Gramma Arends and her crew (Dawn's brothers, sisters, and their spouses) for power cleaning Jesse and I's house tonight. The pictures look great, you did good! :) My Mom and I were out shopping, found, and purchased a new adjustable memory foam bed for Jesse to relax on once he returns home. I pray that is soon.
For now, the doctors aren't anticipating tomorrow either, and we'll have to see beyond that how Jesse does. They're continuing IV fluids and TPN in hospital. They are suggesting before Jesse comes home that his PICC line be redone to allow more ports, so he can do most all of his meds via IV at home, when he readmits to hospice care. Comfort and rest are the high priorities...
Tuesday, June 14, 2011 2:45 PM, CDT
Also, I forgot to mention last week that I received a call back from The Block, and they had absolutely nothing to offer us. I was a little disappointed that their care falls short for patients that can't eat all their supplements, but they're unable to examine Jesse since he can't travel. They asked me what I expected them to tell me, and I of course had no idea.
Also big thank you to all of you scrambling to find hospital beds for Jesse...I should have been more specific. Jesse and I wish to purchase a bed we can still sleep in together. As he put it, "I'd still like to sleep next to my future wife." I did some research online but have been unable to follow up at a store in person because of Jesse's care needs. I intend to do this now tomorrow. BIG thank you to those of you who've continued to donate...we will be able to afford this bed, I just need time to make an educated purchase. Will update Jesse's status as it changes. Thanks for your love and support.
Tuesday, June 14, 2011 2:36 PM, CDT
Updating from my phone on the way to the hospital, so bear with me...Yep, change in plans. Jesse checked out of home hospice today for the time being. They just didn't have anything to offer us that worked well enough, not for lack of trying. We're headed to Regions after considering somewhere else because they know us, and Jesse's not comfortable starting over with what would sure to be a lot of testing elsewhere. The plan is to stop shoveling in oral meds and get back on IVs for some faster comfort, in addition to placing a venting gastrostomy tube asap. Jesse has lost a total of 25 lbs since admitting to hospice, despite the TPN. He now weighs under 150 lbs. Jesse decided that the uncontrolled vomiting in combination with weight loss was enough. The g-tube is really all Regions has left to offer us, so I've upped my personal prayers in the last few days. Thanks again for all of yours.
Monday, June 13, 2011 3:09 PM, CDT
Well for the most part, the nights continue to be long and difficult. Really, the days do too. Jesse had a rough day yesterday, vomiting every hour. Last night into today has been better, but not vomit-free. Hospice nurses continue to visit and make changes, but nothing cuts back the vomiting. Most recently, we've increased the octreotide dose in Jesse's system. If you all remember when we left the hospital, they had put a depo octreotide in his system that was supposed to last four weeks. This med cuts back the bile, gastric juices, and ascites (fluid buildup) in Jesse's system. Since he continues to vomit much larger volumes than what he is taking in, they suggested twice daily octreotide injections on top of the longacting already in his system. He's had two shots so far, one last night and one this morning, and there is definitely a decrease in vomiting, but again, not vomit-free.
Dawn took the night shift for me last night, and although Jesse didn't vomit, he was up constantly with hiccups, severe heartburn, and the painful urge to burp but unable to push it out. Dawn and I help him with this by clapping on his back. We're not sure what causes it or how to fix it. We went back to an anti-nausea med that works for hiccups, even though it does nothing for nausea, as these hiccups wake Jesse (and Dawn and I) from sleep. Jesse stayed downstairs on the couch to sleep last night, and he seems to be more comfortable there all the time now. The bed is too hard for him to sit up in and get in and out of. We looked at adjustable beds online but most places take 4-6 weeks to deliver. They're also not cheap, so I'd really like to get somewhere to see it before we're invested. Another thing on the long list of things to do...
I called the Cancer Center this morning to schedule the venting gastrostomy that Regions suggested to us when Jesse was hospitalized a couple weeks ago. This g-tube is supposed to eliminate nausea and vomiting as well as permit Jesse to eat again for comfort. They are still in the "wait and see" mode for this octreotide to work. I said to the nurse this afternoon, "How long would you like Jesse to vomit then before you're ready to schedule him?" She's a fairly compassionate woman and just relaying what she's told, but hopefully I got our point across, so she can relay it to Jesse's doctors. Enough is enough...Lets get this thing done. Now we pray it will actually provide what they're telling us it should...vomit-free.
Dawn took the night shift for me last night, and although Jesse didn't vomit, he was up constantly with hiccups, severe heartburn, and the painful urge to burp but unable to push it out. Dawn and I help him with this by clapping on his back. We're not sure what causes it or how to fix it. We went back to an anti-nausea med that works for hiccups, even though it does nothing for nausea, as these hiccups wake Jesse (and Dawn and I) from sleep. Jesse stayed downstairs on the couch to sleep last night, and he seems to be more comfortable there all the time now. The bed is too hard for him to sit up in and get in and out of. We looked at adjustable beds online but most places take 4-6 weeks to deliver. They're also not cheap, so I'd really like to get somewhere to see it before we're invested. Another thing on the long list of things to do...
I called the Cancer Center this morning to schedule the venting gastrostomy that Regions suggested to us when Jesse was hospitalized a couple weeks ago. This g-tube is supposed to eliminate nausea and vomiting as well as permit Jesse to eat again for comfort. They are still in the "wait and see" mode for this octreotide to work. I said to the nurse this afternoon, "How long would you like Jesse to vomit then before you're ready to schedule him?" She's a fairly compassionate woman and just relaying what she's told, but hopefully I got our point across, so she can relay it to Jesse's doctors. Enough is enough...Lets get this thing done. Now we pray it will actually provide what they're telling us it should...vomit-free.
Friday, June 10, 2011 7:43 AM, CDT
Last night was long and difficult for Jesse and I. We're so sorry that we can't see visitors today. We're trying to rest in the hour or two between vomiting episodes. Our hospice nurse is coming today to try and offer more suggestions. I'm grateful Jesse's Mom, Dawn, will be here later today and staying to help out. Praying for rest and a better day...
Thursday, June 9, 2011 1:52 PM, CDT
Enjoyed a very nice visit from Haggy today; Jesse's long-time friend as well as one of our groomsmen. Jesse, Haggy, and a few other friends are hoping to make it to a Perfect Circle concert (Jesse's favorite band) on July 6. The Roy Wilkins Center was more than happy to accommodate for Jesse and his friends, as he will most likely have to attend in a wheelchair, but their seats are better now! :) Like every other goal we set, we pray Jesse will get there. :)
More of the same for symptoms today, although the night went better again. No vomiting until 9 this morning, but it has pretty much been every other hour since then. We had a visit from the hospice nurse, and I think she is leaning towards switching Jesse back to IV meds. He keeps vomiting up his oral meds. Jesse had gained a little weight in the hospital, but that has come back down again. They are going to adjust his TPN caloric intake for this. We brought back into discussion placement of a G-tube or gastrostomy tube that would drain Jesse's stomach contents, so he would be able to eat again but not have to vomit afterwards. We will most likely pursue discussing this after we've tried switching to IV pain meds for awhile.
Otherwise, we just try to relax around the house. We watch a lot of TV. In our best effort to stay on top of the limited comfort Jesse gets from his meds when they stay down, I'm constantly watching the clock...When he needs scheduled meds, when he can have more of the meds they tell him to use "as needed," what to do or what to give after he's thrown up all of them. Jesse continues to believe there is a blockage, even though this was never confirmed. It seems as though the hospital didn't really care, since if there is a blockage, the treatment would have still been the same as what we've been trying: bowel rest. Healthy people would have surgery for a bowel obstruction, but Jesse is not a candidate for this because of his cancer.
After weeks of guessing games and very little relief, I'm hoping a G-tube is what will make Jesse more comfortable by eliminating the vomiting factor. Thanks for all your prayers and well wishes, we will keep you posted.
More of the same for symptoms today, although the night went better again. No vomiting until 9 this morning, but it has pretty much been every other hour since then. We had a visit from the hospice nurse, and I think she is leaning towards switching Jesse back to IV meds. He keeps vomiting up his oral meds. Jesse had gained a little weight in the hospital, but that has come back down again. They are going to adjust his TPN caloric intake for this. We brought back into discussion placement of a G-tube or gastrostomy tube that would drain Jesse's stomach contents, so he would be able to eat again but not have to vomit afterwards. We will most likely pursue discussing this after we've tried switching to IV pain meds for awhile.
Otherwise, we just try to relax around the house. We watch a lot of TV. In our best effort to stay on top of the limited comfort Jesse gets from his meds when they stay down, I'm constantly watching the clock...When he needs scheduled meds, when he can have more of the meds they tell him to use "as needed," what to do or what to give after he's thrown up all of them. Jesse continues to believe there is a blockage, even though this was never confirmed. It seems as though the hospital didn't really care, since if there is a blockage, the treatment would have still been the same as what we've been trying: bowel rest. Healthy people would have surgery for a bowel obstruction, but Jesse is not a candidate for this because of his cancer.
After weeks of guessing games and very little relief, I'm hoping a G-tube is what will make Jesse more comfortable by eliminating the vomiting factor. Thanks for all your prayers and well wishes, we will keep you posted.
Wednesday, June 8, 2011 10:27 AM, CDT
Hello. Been busy getting settled at home. I realized the other day that we haven't even been home from the hospital for a week yet! Jesse's symptoms persist everyday, and we get a visit from our hospice nurse everyday with new suggestions of things to try differently. We've completely cut out Zofran and compazine since yesterday. Jesse is taking scheduled Reglan after two miserable nights of nonstop hiccups and vomiting about every hour. :( Last night was better, and I hope we stay with that trend. Reglan is an anti-nausea med that is also supposed to help with hiccups. There are several other med changes, of course, but if I updated his med changes as often as they change, all your heads would be spinning like mine and Momma Dawn's are!
Twenty nine years ago this past Monday (June 6), my Momma gave birth to me! :) She came up to spend the whole day with me while Jesse tried to rest. We even got some landscaping done, and she helped me organize all Jesse's medical supplies, so I could have my living room back. :) Thanks, Momma. My sisters all came up to see me too and are amazing and supportive and wonderful as always...Thank you Kayla, Kortney, and Kally Jo!
So just relaxing, hoping for today to be more comfortable for Jesse than the last...Thanks to all of you for checking in on us.
Twenty nine years ago this past Monday (June 6), my Momma gave birth to me! :) She came up to spend the whole day with me while Jesse tried to rest. We even got some landscaping done, and she helped me organize all Jesse's medical supplies, so I could have my living room back. :) Thanks, Momma. My sisters all came up to see me too and are amazing and supportive and wonderful as always...Thank you Kayla, Kortney, and Kally Jo!
So just relaxing, hoping for today to be more comfortable for Jesse than the last...Thanks to all of you for checking in on us.
Saturday, June 4, 2011 12:15 PM, CDT
Hello. Hope you are all enjoying this perfectly beautiful weather. Jesse's drain was placed successfully yesterday. While the doctor was talking with Dawn and I to tell us about the successful drain placement, I asked how much fluid they were able to get off...This doctor says to me, "Oh, we didn't drain any fluid..." DUH!!! Well, on the brighter side, Dawn and I were then able to watch the PA drain the fluid, so we would know how to do it here at home. I really couldn't believe it though...sheesh.
Let's see...we arrived home at about 6 last night. We had a nice visit with Papa Sam and Barb who brought us a mini fridge to keep Jesse's TPN bags in...Our regular fridge is full! Just been trying to rest and relax. Jesse's symptoms seem to persist; pain, nausea...nausea, pain. It sort of creeps up on him, and then we struggle to get back to a comfortable level. Fortunately, he stays pretty comfortable in between "flare ups" and continues to sleep well at night. We're hoping for some renewed strength, energy, and comfort for today, so Jesse can attend some high school graduation parties with me. Not sure yet if this will be a possibility. Congratulations Taylor Jean and Mathew Madery!
Let's see...we arrived home at about 6 last night. We had a nice visit with Papa Sam and Barb who brought us a mini fridge to keep Jesse's TPN bags in...Our regular fridge is full! Just been trying to rest and relax. Jesse's symptoms seem to persist; pain, nausea...nausea, pain. It sort of creeps up on him, and then we struggle to get back to a comfortable level. Fortunately, he stays pretty comfortable in between "flare ups" and continues to sleep well at night. We're hoping for some renewed strength, energy, and comfort for today, so Jesse can attend some high school graduation parties with me. Not sure yet if this will be a possibility. Congratulations Taylor Jean and Mathew Madery!
Friday, June 3, 2011 10:19 AM, CDT
We're home! It was a rocky transition, but we made it. We left the hospital at 10:30 yesterday morning with instructions that the hospice nurse would meet us at 1 pm and the Walgreens nurse with Jesse's TPN and instructions for use would meet us at 7 pm. I had just pulled in the driveway when I received a call from the hospice nurse that they were not going to admit Jesse to hospice as planned. I was furious and most likely overreacted.
The reason for this...Jesse is scheduled today to have a permanent ascites drain placed. Apparently once Jesse is on hospice, all of his care is filtered through them now, and they don't cover procedures such as these. I asked her to come speak to us in person, and she arrived as scheduled at 1. After several phone calls, it was determined that Jesse's insurance will most likely not cover this procedure today. Fortunately, he was admitted to hospice as originally scheduled yesterday, and thanks to all of you, we have enough money to cover this procedure anyway.
In the midst of all this, Jesse was not feeling well. The car ride did not go well, and Jesse was sick again when we got home. With all the craziness, I didn't fully appreciate my beautiful "new" home until things settled down a bit. Our kitchen is finally painted! And it looks wonderful! We have patio block where there used to be a mud trail from the door to the driveway...Thanks Momma and aunt Becky! My brother, Greg's carpentry work was more than acceptable! Kayla, Kortney, Emily, Momma Cindy, and Momma Dawn did a fantastic paint job.
So our Walgreens nurse was here at 7 and gave me all the instructions to hook up Jesse's TPN, keeping all connections sterile, etc. Up to this point, Jesse had been feeling better yesterday, and he continued to stay comfortable through the learning process and the hook back up to TPN. We went to bed shortly after this, and Jesse slept comfortably. He's been up since we unhooked at 8:30 this morning and still going strong! Jesse's TPN will run for 12 hours overnight everyday. I can already tell he's a bit stronger from this, but what I'm really grateful for now is his comfort level. We have a new anti-nausea med on board, suggested by hospice, called BDR. Benadryl, dexamethasone, and Reglan (sp?). They have this mix in a syringe that just squirts out transdermally, so Jesse just rubs it into his skin on the inside of his forearm. He has not vomited since we started this, so I'm reluctantly optimistic that it may be working, but he's also quit attempting food, which seemed to be the culprit aggravating him previously.
Whatever it is, he's comfortable now. We're getting ready to meet with our permanent hospice nurse today; the nurse that will visit us daily or as needed from now on. She's going to check Jesse's PICC and take labs, and then we'll need to get ready to go back to the hospital for placement of Jesse's drain at 1:30 today. I'm late getting in the shower now, but I think you're all up to speed for today!
The reason for this...Jesse is scheduled today to have a permanent ascites drain placed. Apparently once Jesse is on hospice, all of his care is filtered through them now, and they don't cover procedures such as these. I asked her to come speak to us in person, and she arrived as scheduled at 1. After several phone calls, it was determined that Jesse's insurance will most likely not cover this procedure today. Fortunately, he was admitted to hospice as originally scheduled yesterday, and thanks to all of you, we have enough money to cover this procedure anyway.
In the midst of all this, Jesse was not feeling well. The car ride did not go well, and Jesse was sick again when we got home. With all the craziness, I didn't fully appreciate my beautiful "new" home until things settled down a bit. Our kitchen is finally painted! And it looks wonderful! We have patio block where there used to be a mud trail from the door to the driveway...Thanks Momma and aunt Becky! My brother, Greg's carpentry work was more than acceptable! Kayla, Kortney, Emily, Momma Cindy, and Momma Dawn did a fantastic paint job.
So our Walgreens nurse was here at 7 and gave me all the instructions to hook up Jesse's TPN, keeping all connections sterile, etc. Up to this point, Jesse had been feeling better yesterday, and he continued to stay comfortable through the learning process and the hook back up to TPN. We went to bed shortly after this, and Jesse slept comfortably. He's been up since we unhooked at 8:30 this morning and still going strong! Jesse's TPN will run for 12 hours overnight everyday. I can already tell he's a bit stronger from this, but what I'm really grateful for now is his comfort level. We have a new anti-nausea med on board, suggested by hospice, called BDR. Benadryl, dexamethasone, and Reglan (sp?). They have this mix in a syringe that just squirts out transdermally, so Jesse just rubs it into his skin on the inside of his forearm. He has not vomited since we started this, so I'm reluctantly optimistic that it may be working, but he's also quit attempting food, which seemed to be the culprit aggravating him previously.
Whatever it is, he's comfortable now. We're getting ready to meet with our permanent hospice nurse today; the nurse that will visit us daily or as needed from now on. She's going to check Jesse's PICC and take labs, and then we'll need to get ready to go back to the hospital for placement of Jesse's drain at 1:30 today. I'm late getting in the shower now, but I think you're all up to speed for today!
Wednesday, June 1, 2011 12:35 PM, CDT
Jesse didn't sleep great last night, as he was uncomfortable from ascites (the fluid buildup). He was scheduled to have this drained off this morning and some BONEHEAD canceled it! By the time we called the nurse to page the doctor to get Jesse down there, he had to suffer an extra hour. He did have his para then at 8:30 this morning, and they were able to get 5.5 L out. I asked Jesse while he was miserably waiting this morning if it was finally time to place a drain that will continually drain this fluid. He said yes. We've asked a few doctors and nurses now today to help us expedite this procedure. It does not entail much, so should be fairly easy.
Did I mention Jesse's PICC line was placed successfully yesterday? He has been on TPN for over 24 hours now. They start off slow and build you up to the full caloric intake you need. At 8:30 tonight, they will replace the 24-hour drip with a 12-hour drip, so at 8:30 tomorrow morning, we'll unhook and go home!
We met with a hospice respresentative this morning through Allina, another metro medical system, as HealthPartners would not cover us in Hampton; it is outside their "area." Allina will be meeting us at our home at 1 pm tomorrow. They are arranging all the medical supplies Jesse will need and educating us on maintaining the TPN. A couple questions arose yesterday about hospice because Jesse seems to be in limbo of the definition. Home care just would not provide the pain and anti-nausea regimen that Jesse will require, so we needed to go with hospice. They seem nice and accommodating, and I pray Jesse will start to get some quality back in his life. They are all anxious to see him get to July 30 with dancing shoes on. :) They already suggested an anti-nausea gel that hasn't been tried yet, and I'm anxious to see how Jesse responds to this.
Jesse is napping now. He feels pretty good after his para, and he has not eaten, so is not battling much nausea or pain presently. Hopefully after a nice long nap, he'll still be up for a walk outside, which we've been talking about for days, and this is past due. Nothing else to report for now. We will see how these new changes work for Jesse and keep you all posted. :)
Did I mention Jesse's PICC line was placed successfully yesterday? He has been on TPN for over 24 hours now. They start off slow and build you up to the full caloric intake you need. At 8:30 tonight, they will replace the 24-hour drip with a 12-hour drip, so at 8:30 tomorrow morning, we'll unhook and go home!
We met with a hospice respresentative this morning through Allina, another metro medical system, as HealthPartners would not cover us in Hampton; it is outside their "area." Allina will be meeting us at our home at 1 pm tomorrow. They are arranging all the medical supplies Jesse will need and educating us on maintaining the TPN. A couple questions arose yesterday about hospice because Jesse seems to be in limbo of the definition. Home care just would not provide the pain and anti-nausea regimen that Jesse will require, so we needed to go with hospice. They seem nice and accommodating, and I pray Jesse will start to get some quality back in his life. They are all anxious to see him get to July 30 with dancing shoes on. :) They already suggested an anti-nausea gel that hasn't been tried yet, and I'm anxious to see how Jesse responds to this.
Jesse is napping now. He feels pretty good after his para, and he has not eaten, so is not battling much nausea or pain presently. Hopefully after a nice long nap, he'll still be up for a walk outside, which we've been talking about for days, and this is past due. Nothing else to report for now. We will see how these new changes work for Jesse and keep you all posted. :)
Tuesday, May 31, 2011 11:14 AM, CDT
Hello. Yesterday went about the same as the day before. By 2 pm, Jesse had lost everything he had eaten. He attempted dinner again and once again, it did not stay down. We have changed course and decided these particular symptoms may never subside. Considering this, we do not want to be in the hospital any longer. We've decided to go home.
Part of the transition home is having a PICC line placed (permanent access to Jesse's vessels) to receive TPN nutrition and fluids at home. We'll be accomplishing this at home through the help of hospice care. A hospice representative will be meeting with us today or tomorrow. We will need to stay here in the hospital one last night to finalize all these arrangements and hope to go home with this plan tomorrow.
Our hope is that starting nutrition will give Jesse's digestive system a more complete rest than it has thus far. Since he's been attempting to eat almost everyday, there has not been a true rest. This rest could bring things back enough for him to eat some without vomiting, but as of right now, Jesse has been unable to achieve this. We're hopeful, but the doctors here remind us that, statistically, cancer just gets worse and so will Jesse's symptoms.
As of now, Jesse is not well enough to undergo chemo, and our oncologist is strongly advising against it. Jesse's strength is what determines whether he will undergo chemo again or not. That continues to be a waiting game. I called and faxed The Block this morning with everything going on here and asked they give their input. A clinical trial would be nice, but there aren't any Jesse qualifies for here in the Twin Cities network. Nationwide there are some, but I'm not able to research what Jesse could benefit from on my own. I have discovered many of these do not treat 3rd line chemotherapy patients, meaning most trials prefer to treat patients starting chemo for the first time.
Thanks again to all who help, support, pray, hope, wish, and continue to follow us.
Part of the transition home is having a PICC line placed (permanent access to Jesse's vessels) to receive TPN nutrition and fluids at home. We'll be accomplishing this at home through the help of hospice care. A hospice representative will be meeting with us today or tomorrow. We will need to stay here in the hospital one last night to finalize all these arrangements and hope to go home with this plan tomorrow.
Our hope is that starting nutrition will give Jesse's digestive system a more complete rest than it has thus far. Since he's been attempting to eat almost everyday, there has not been a true rest. This rest could bring things back enough for him to eat some without vomiting, but as of right now, Jesse has been unable to achieve this. We're hopeful, but the doctors here remind us that, statistically, cancer just gets worse and so will Jesse's symptoms.
As of now, Jesse is not well enough to undergo chemo, and our oncologist is strongly advising against it. Jesse's strength is what determines whether he will undergo chemo again or not. That continues to be a waiting game. I called and faxed The Block this morning with everything going on here and asked they give their input. A clinical trial would be nice, but there aren't any Jesse qualifies for here in the Twin Cities network. Nationwide there are some, but I'm not able to research what Jesse could benefit from on my own. I have discovered many of these do not treat 3rd line chemotherapy patients, meaning most trials prefer to treat patients starting chemo for the first time.
Thanks again to all who help, support, pray, hope, wish, and continue to follow us.
Monday, May 30, 2011 12:55 PM, CDT
Greetings. We started off strong again this morning. :) Jesse continues to feel better overall everyday we're here. The doc this morning said Jesse had more of a "twinkle in his eye" than since he arrived here almost a week ago now. Another doctor following us from palliative care brought Jesse a DQ Reeses peanut butter cup blizzard. A few days back, she asked what Jesse wanted if he could have anything, and that was his response, so she surprised him with one this morning. I told Jesse to be sure it was worth eating with a good chance of it not staying down, and he told me to stop thinking like that! Guess I got told! :) I am in a constant struggle to find that medium point between optimism and realism. I explained to Jesse how disappointed and frustrated I get when he loses his meals, and he understands. Today is a new day! So far so good.
Jesse just finished attempting lunch. A few bites of watermelon and stroganoff noodles (no beef, of course). This is an improvement to yesterday because at this time, he had skipped lunch and was feeling miserable. It's still not easy. He's struggling to keep it all as I type this. Jesse made his own plan today, which he shared with the doctors this morning too. He's been asking for more pain meds. He feels the pain gets out of control before the nausea and vomiting kick up, so if he conquers pain better, he believes the rest will fall in line. This approach is a little different, in that we're not depending on the anti-nausea meds as much. The doctors are gaging how much pain med he's been using and converting that to an increased dose of oxycontin that we'll be able to go home with. They are also weaning him off IV meds again today and trying to get everything oral.
If this plan works, we'll go home late tomorrow...I pray I'm posting something positive later on today...
Jesse just finished attempting lunch. A few bites of watermelon and stroganoff noodles (no beef, of course). This is an improvement to yesterday because at this time, he had skipped lunch and was feeling miserable. It's still not easy. He's struggling to keep it all as I type this. Jesse made his own plan today, which he shared with the doctors this morning too. He's been asking for more pain meds. He feels the pain gets out of control before the nausea and vomiting kick up, so if he conquers pain better, he believes the rest will fall in line. This approach is a little different, in that we're not depending on the anti-nausea meds as much. The doctors are gaging how much pain med he's been using and converting that to an increased dose of oxycontin that we'll be able to go home with. They are also weaning him off IV meds again today and trying to get everything oral.
If this plan works, we'll go home late tomorrow...I pray I'm posting something positive later on today...
Sunday, May 29, 2011 9:53 PM, CDT
Well, the day didn't stay as positive as my last post. Jesse was sick around 2 pm today and skipped lunch. He tried a little dinner, popsicle and some soup, and felt sick again afterward. He's been sleeping since then, which is probably good, except that he'll be poking me at 6 am or earlier to get up with him!
I had a wonderful visit tonight from my uncle, Marlin, aunt Suzanne, and cousins Brandon, Becky, and Erica. I've added some new Phase 10 addicts! :) This is a very fun card game by the makers of uno for those of you who don't know. Thanks to the Hagstroms' for gifting the game to us and thanks to the Maixners' for teaching me how to play years ago.
It's hard for me to tell you all what is next because we just aren't sure. It's up to Jesse how long he wants to battle vomiting up his food. I, he, and the doctors don't have a timeframe on what's "too long." As long as Jesse's willing to try eating and keeping it down, we'll keep trying. However, this has gotten very tiring and frustrating for me. Some doctors were in today that suggested venting gastrostomy. A way for Jesse to eat food normally, but then that food would drain out of his stomach before it gave him trouble or came back up. Jesse would then be put on TPN nutrition to supplement his body from lack of digested food.
When the doctors mentioned this earlier this morning, I remember thinking we were at least weeks from that, but after Jesse lost the one meal he had eaten, I'm beginning to wonder if we're closer than I thought. I asked Jesse how he felt, and he also isn't sure how much longer he's willing to try eating and digesting on his own if this continues to fail. We're in a waiting game...and we're stuck in the hospital until something changes.
I have been out of work going on three weeks, since Jesse's latest setback. Most of you know that I exhausted my paid time off months ago, and I just want to take this moment to say thank you. Again. :) Thanks to each and every one of you that has donated money to our account, donated time to put on the three amazing benefits we had, and complete strangers that have sent us checks in the mail! Jesse is still riding on paid sick leave, and his work has an amazing benefit that allows his co-workers to donate their vacation time to Jesse. He is able to cash out any time donated to him. He needs to complete the paperwork to start this process, but it's on our agenda. I also want to thank again all the amazing people that are offering their professional services for little or nothing to contribute to our wedding day. This day has become an extremely important goal for Jesse, and his medical doctors are aware and feel similarly about supporting him in every effort to make it to our day. With love and appreciation...
I had a wonderful visit tonight from my uncle, Marlin, aunt Suzanne, and cousins Brandon, Becky, and Erica. I've added some new Phase 10 addicts! :) This is a very fun card game by the makers of uno for those of you who don't know. Thanks to the Hagstroms' for gifting the game to us and thanks to the Maixners' for teaching me how to play years ago.
It's hard for me to tell you all what is next because we just aren't sure. It's up to Jesse how long he wants to battle vomiting up his food. I, he, and the doctors don't have a timeframe on what's "too long." As long as Jesse's willing to try eating and keeping it down, we'll keep trying. However, this has gotten very tiring and frustrating for me. Some doctors were in today that suggested venting gastrostomy. A way for Jesse to eat food normally, but then that food would drain out of his stomach before it gave him trouble or came back up. Jesse would then be put on TPN nutrition to supplement his body from lack of digested food.
When the doctors mentioned this earlier this morning, I remember thinking we were at least weeks from that, but after Jesse lost the one meal he had eaten, I'm beginning to wonder if we're closer than I thought. I asked Jesse how he felt, and he also isn't sure how much longer he's willing to try eating and digesting on his own if this continues to fail. We're in a waiting game...and we're stuck in the hospital until something changes.
I have been out of work going on three weeks, since Jesse's latest setback. Most of you know that I exhausted my paid time off months ago, and I just want to take this moment to say thank you. Again. :) Thanks to each and every one of you that has donated money to our account, donated time to put on the three amazing benefits we had, and complete strangers that have sent us checks in the mail! Jesse is still riding on paid sick leave, and his work has an amazing benefit that allows his co-workers to donate their vacation time to Jesse. He is able to cash out any time donated to him. He needs to complete the paperwork to start this process, but it's on our agenda. I also want to thank again all the amazing people that are offering their professional services for little or nothing to contribute to our wedding day. This day has become an extremely important goal for Jesse, and his medical doctors are aware and feel similarly about supporting him in every effort to make it to our day. With love and appreciation...
Sunday, May 29, 2011 10:15 AM, CDT
We have active peristalsis!!! (Thanks, Momma Mary :)) For the rest of you, this means Jesse is having his "number 2's" as often as he should be now. We had a couple episodes of dry heaving last night, and then he was actually sick a little around 8:30/9ish, but not enough for me to think he lost all of what he ate yesterday. More noticeably, there was very little bile in comparison to every other time, which means...octreotide is working! I think it is reducing the bile/gastric fluids, and so far this has made a small improvement on Jesse's vomiting. I hope this improvement continues. The nauseous feeling still seems to come and go, despite meds, but as long as he is not losing food, thats another small, baby step improvement. They are going to be able to send us home with this med as a "depo" shot, which means he will have a shot when he leaves, which will last four weeks. Initially, they thought we'd need to give Jesse the shots at home three times daily, but then they found the depo version of octreotide. We should just be able to get the shot here every four weeks now instead.
Jesse had 2 Liters of fluid drawn off this morning. He was very miserable from this fluid buildup last night, but he was able to fall asleep around 11:30 and stay asleep, other than the nightly pokes and prods from the nursing staff. After paracentesis, Jesse was able to eat a whole bowl of cheerios and half a cranberry muffin! He had no pain with eating which had been an issue for one meal yesterday. I'm not overly optimistic that this will stay down, but of course I'm hoping and praying. He was up sitting next to me on my couch this morning until he felt too sleepy and is now back in bed.
I'm hoping for a good day. My sister, Kayla, brother, Greg, and friend, Buff, spent time with me last night. I mentioned Jesse's Dad, Sam, was here to visit, and we also had a visit from Jesse's sister, Jaime, yesterday. Momma Dawn will be back up today with niece, Sienna, and my sister stayed in town, so they'll be back this afternoon. We have a "mean" Phase 10 game going on, and some movies to watch today. So far, its a perfect gloomy day for it. Most importantly, if today goes well (no vomiting, continued food intake, and controlled pain on oral regimen) we could get out tomorrow. The transition to all oral meds shouldn't take too long, as Jesse has been taking about half orally and half via IV. Getting out Tuesday would be acceptable too.
Can't wait to get home and see our new driveway and kitchen! BIG THANKS to the Carlsons' who had "extra" gravel to redo our driveway, which was in desperate need. Another big thanks to my family for offering to come up and finish sanding our kitchen as well as apply primer and new color to the walls! We are so blessed and fortunate to have all of you who continue to reach out with helpful hands and thoughtful words.
Jesse had 2 Liters of fluid drawn off this morning. He was very miserable from this fluid buildup last night, but he was able to fall asleep around 11:30 and stay asleep, other than the nightly pokes and prods from the nursing staff. After paracentesis, Jesse was able to eat a whole bowl of cheerios and half a cranberry muffin! He had no pain with eating which had been an issue for one meal yesterday. I'm not overly optimistic that this will stay down, but of course I'm hoping and praying. He was up sitting next to me on my couch this morning until he felt too sleepy and is now back in bed.
I'm hoping for a good day. My sister, Kayla, brother, Greg, and friend, Buff, spent time with me last night. I mentioned Jesse's Dad, Sam, was here to visit, and we also had a visit from Jesse's sister, Jaime, yesterday. Momma Dawn will be back up today with niece, Sienna, and my sister stayed in town, so they'll be back this afternoon. We have a "mean" Phase 10 game going on, and some movies to watch today. So far, its a perfect gloomy day for it. Most importantly, if today goes well (no vomiting, continued food intake, and controlled pain on oral regimen) we could get out tomorrow. The transition to all oral meds shouldn't take too long, as Jesse has been taking about half orally and half via IV. Getting out Tuesday would be acceptable too.
Can't wait to get home and see our new driveway and kitchen! BIG THANKS to the Carlsons' who had "extra" gravel to redo our driveway, which was in desperate need. Another big thanks to my family for offering to come up and finish sanding our kitchen as well as apply primer and new color to the walls! We are so blessed and fortunate to have all of you who continue to reach out with helpful hands and thoughtful words.
Saturday, May 28, 2011 2:04 PM, CDT
I forgot to mention they moved us again last night at 7:30, so we're now in room South 6407. We shouldn't have to move from here now until we're discharged.
Jesse had a popsicle and broth for lunch around noon...so far so good! He just had an anti-nausea med 20 mins ago, and is feeling pretty good visiting with his Dad right now.
My friend Buff is here playing Scrabble with me. :) Its my turn now! :)
Jesse had a popsicle and broth for lunch around noon...so far so good! He just had an anti-nausea med 20 mins ago, and is feeling pretty good visiting with his Dad right now.
My friend Buff is here playing Scrabble with me. :) Its my turn now! :)
Saturday, May 28, 2011 11:25 AM, CDT
Jesse felt sick a couple times last night around 9 and 10:30, but nothing came up. He slept really well through the night and woke up strong again this morning. They brought him his first "meal." Soup broth and popsicles for breakfast! Jesse stated to a couple nurses and doctors that the popsicles were like heavenly! He had a shower after breakfast and was waiting for the next dose of octreotide when breakfast came back up. ;( The octreotide is an every 12-hour med, and it had been 13 hours. I wasn't sure if this made a big difference, but the palliative care doc said she would look into having it administered every 8 hours to see if there's a difference. Overall, Jesse feels better most of the time, but he just always ends up vomiting eventually. :( Goal is to remedy this no matter what it takes! The palliative care docs are asking Jesse about hospice and discontinuing chemo altogether, but he contines to state he wants the next treatment once he's strong enough. They are learning that I will support him no matter what he decides, as I'm sure the rest of you are saying to yourselves as you read this. Keep praying for bowel movements and no nausea!
Friday, May 27, 2011 5:46 PM, CDT
Dr. JUST walked in...octreotide is the med they want to inject. This med is supposed to cut down the production of "juices" in the body. He just said it would cut production of pancreas juices, gastric juices, etc, so there will be less is Jesse's stomach to hopefully lessen the urge to vomit. Not a typical anti-nausea but could hopefully make a difference. Jesse's up now, so post more later.
Friday, May 27, 2011 5:34 PM, CDT
Thank you all for your continued words of strength and support. Jesse is resting now. The morning started off strong, but he wore down fast. He didn't keep down a med they gave him at 2:40 this afternoon for his increasingly painful heartburn. They are talking about an IV med for this heartburn. Hopefully that will bring some relief. The heartburn sensation doubles him over in pain and often causes vomiting. Palliative care also has another suggestion for a med that could decrease nausea. This is only available IV, so it would only bring relief now, while we're in the hospital. We should be trying that this evening sometime.
Otherwise, I'm just thinking nothing Jesse takes in is going through his system. The little fluid he does swallow just sit in his stomach and wait to come back up eventually. The hospitalist this evening mentioned that even without food intake, the body should move bowels every two or three days just from cell slough off inside his intestines. We're waiting for that to happen now because it will give us a sign that Jesse is overcoming this blockage.
Time. Hopefully just more time. We're just hangin' out here...until they move us in the middle of the night again! We're in a wing considered ICU because the Oncology wing is full. Our previous room was ICU also, so who knows what they'll figure out in the coming days. Sad to think there are so many cancer patients out there. Medicine has come so far but has so much farther to go. I pray we find the medicine that's going to work soon.
Otherwise, I'm just thinking nothing Jesse takes in is going through his system. The little fluid he does swallow just sit in his stomach and wait to come back up eventually. The hospitalist this evening mentioned that even without food intake, the body should move bowels every two or three days just from cell slough off inside his intestines. We're waiting for that to happen now because it will give us a sign that Jesse is overcoming this blockage.
Time. Hopefully just more time. We're just hangin' out here...until they move us in the middle of the night again! We're in a wing considered ICU because the Oncology wing is full. Our previous room was ICU also, so who knows what they'll figure out in the coming days. Sad to think there are so many cancer patients out there. Medicine has come so far but has so much farther to go. I pray we find the medicine that's going to work soon.
Friday, May 27, 2011 11:04 AM, CDT
Morning. Someone was razzing me to get up and walk with him this morning when I wanted to sleep in! Must be a good sign. ;) Last night we had an episode of vomiting around 10 pm. They are trying to get Jesse to take Miralax, as they believe there is some stool in his bowel that could be moved. Again, Jesse feels empty! Anyway, that came up with some pain pills (they are giving his longacting pain med, oxycontin, orally). He's kept every dose since then down, which is good.
Hospital doctors stopped by this morning and suggested switching some more meds over to oral because that is how we will eventually get home, but there is no rush. Jesse is still not eating and consuming very little liquid. We will get home when Jesse can eat and keep it down without pain or nausea for at least 24 hours. We're not there yet, so we're gettin' busy resting. ;)
They moved us to a new room at 12:30 this morning. Not pleasant. I really don't like being woke up! We're now in South 6519, which is at the end of a hallway full of windows, so we consider it an upgrade. :) Will post more later, but starting off to be a good day.
Hospital doctors stopped by this morning and suggested switching some more meds over to oral because that is how we will eventually get home, but there is no rush. Jesse is still not eating and consuming very little liquid. We will get home when Jesse can eat and keep it down without pain or nausea for at least 24 hours. We're not there yet, so we're gettin' busy resting. ;)
They moved us to a new room at 12:30 this morning. Not pleasant. I really don't like being woke up! We're now in South 6519, which is at the end of a hallway full of windows, so we consider it an upgrade. :) Will post more later, but starting off to be a good day.
Thursday, May 26, 2011 12:08 PM, CDT
Ignore that weird line in my last post. I copied and pasted from Word, so who knows what happened there!
Thursday, May 26, 2011 12:07 PM, CDT
We just had a visit from the Oncology fellow and palliative care team (they’ve been seeing/following us for awhile, and they are nice people that seem genuinely concerned about Jesse and I). Our regular oncologist is on hospital service, so we will get to see him this afternoon. The biggest question I’m getting is about chemo that was previously scheduled for today. The reason we postponed starting new chemo for one week in the first place was to let Jesse rest and recuperate. Since he’s not very rested or recuperated, I assume we will wait until he is. Hopefully that will only be another week or less. Jesse stated he has faith in the chemo, since in the past, he’s generally felt better from it. More energy, less pain. Of course, this is a brand new chemo, and he may not tolerate as well as the others, but only way to know is to give it a try. Will keep you all posted when that’s rescheduled.
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In the meantime, Oncology states they want to cut back on Zofran for nausea control because it is constipating, and Jesse’s CT also revealed some bowel. He has a hard time believing this, since he feels “cleansed” and empty on both ends! Anyway, it only works half the time, so Jesse doesn’t seem to mind.
Besides that, we’re just hanging out with Jesse’s mom, watching TV, watching Jesse get poked. ;) Glucose test is normal. ;) Post more later.
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In the meantime, Oncology states they want to cut back on Zofran for nausea control because it is constipating, and Jesse’s CT also revealed some bowel. He has a hard time believing this, since he feels “cleansed” and empty on both ends! Anyway, it only works half the time, so Jesse doesn’t seem to mind.
Besides that, we’re just hanging out with Jesse’s mom, watching TV, watching Jesse get poked. ;) Glucose test is normal. ;) Post more later.
Thursday, May 26, 2011 11:14 AM, CDT
Morning. Jesse says he slept well last night. Other than an episode of dry heaves at 1 am, I think he got as much sleep as one can in a hospital room, where they bug you all night! But thats why we're here, of course. When the nurse came in to give Jesse different meds to help at 1 am, I could sense she was frustrated. "I just gave you ativan and morphine 15 mins ago!" I told her now she knows exactly how I feel at home. When what is supposed to work just doesn't. You can change it up and change it up, but sometimes it will work and sometimes it just won't. So we're sitting here watching TV waiting for ...oop, Dr. here now...
Wednesday, May 25, 2011 4:45 PM, CDT
Room change! Just getting settled into 6635. Gave Jesse ativan, which makes him sleepy...G'nite world! :)
Wednesday, May 25, 2011 3:42 PM, CDT
Being admitted to room 6631 south. CT showed dilation of the small bowel just after the stomach, indicative of early, partial obstruction. Regimen will be bowel rest to include continued IV fluids and no food for a couple days. Jesse is still feeling sick to his stomach most of the time. Going to try and pick out different meds/combinations to get better control in hospital...just want sleep!
Wednesday, May 25, 2011 1:09 PM, CDT
Checked in for CT scan, and they sent Jesse with contrast to drink over the next 90 mins. As we feared, the little he drank did not stay down. Guess they'll have to do without. So we check back in for scan around 2. In the meantime, our room was supposed to be ready at 1. I just checked, and that floor hasn't called yet, so I guess we're still waiting. I'm anxious to get there because we haven't slept yet. While we're waiting, they are infusing compazine now, since Jesse just threw up the contrast after just having received Zofran. Hoping to get some answers from the CT later, will post then.
Wednesday, May 25, 2011 9:35 AM, CDT
Just met with cancer center PA. She is so great...Even though Jesse has been moving bowels regularly, his symptoms are very suspicious again for an obstruction. :( She is going to ask radiologist to reread Jesse's last scan for blockages, but it looks as though it would be more prudent to just give him another scan. They are administering more IVs in cancer center now to keep him comfortable while they prep a bed upstairs to admit us. I'm going to try snoozing some more. Will post again soon.
Wednesday, May 25, 2011 8:15 AM, CDT
So we were finally seen at 4 am. They gave Jesse the IVs for pain, anti nausea, and fluids. He finally stopped vomiting and fell asleep around 4:30. We snoozed in our ER room until 7 and just got back here now from a para. 4.8 liters. The ER doc stated he didn't want to admit us, but Jesse and I aren't sure thats an option. He has stopped vomiting, but can still feel the nausea and has had only ice chips. We are being seen in the cancer center shortly, and I will post their update once we've gotten it. Thanks for continued prayers.
Wednesday, May 25, 2011 3:10 AM, CDT
Jesse woke up vomiting at 1 am and as I type this, he has yet to find a break in vomiting for more than 15 mins or so. We headed here to the ER after the first hour and are checked in and waiting to be seen. Hopefully, they'll hook him up to IV anti-nausea and pain meds, and he'll get some relief enough to sleep. He has been unable to keep meds down since 1
.
I haven't called and family yet. Might as well get some sleep, and I will update any changes.
Tuesday, May 24, 2011 8:58 PM, CDT
Jesse was just sick for the second time today...The first was after breakfast. Lunch stayed down, and he even seemed a little more chipper than lately today. We settled in for bed, and I was setting my alarm to get up for work tomorrow...Jesse started shifting, then sitting up, turning around, moving, pacing, and then was finally just sick. ;( I hate this.
I'll be missing work again tomorrow to take Jesse in. I'm not sure they will say/do much about the nausea yet, since everything they gave him was supposed to last until Thursday, but Jesse can't wait another day to draw out more fluid. It has swelled up considerably today, and most definitely attributes to his discomfort. They mentioned other options for nausea that have not yet been exhausted. If tomorrow brings much of the same, we'll pursue these other options. Going through the motions to find relief. Talk to you all soon. Thank you for your continued prayers.
I'll be missing work again tomorrow to take Jesse in. I'm not sure they will say/do much about the nausea yet, since everything they gave him was supposed to last until Thursday, but Jesse can't wait another day to draw out more fluid. It has swelled up considerably today, and most definitely attributes to his discomfort. They mentioned other options for nausea that have not yet been exhausted. If tomorrow brings much of the same, we'll pursue these other options. Going through the motions to find relief. Talk to you all soon. Thank you for your continued prayers.
Monday, May 23, 2011 1:19 PM, CDT
Hi. We're at Regions Hospital for IV infusion of fluids and a long-acting anti-nausea med that is only available via IV. This anti-nausea med is supposed to last 72 hours though! With that in the system, we also plan to add a "patch," (a sticker behind the ear) most commonly used for vertigo nausea, but hey, we'll try anything. Infusion of these should take 2-3 hours, and then we go home. No admission today! The long-acting IV med is an upgrade from Zofran, so we d/c (discontinue) the Zofran for those 72 hours and alternate between compazine and Ativan at home. Hopefully, these will work better once we have a better baseline built up.
Still scheduled then for the new chemo on Thurs. Hard to reschedule Block visit yet until we know how Jesse will be feeling. Will probably have to have a paracentesis when we come back for chemo on Thurs, as this continues to build up. Jesse weighed 177 lbs. at today's visit, and since about 2-4 lbs is fluid buildup already, its obvious Jesse lost more weight last week from lack of nutrition intake. One step at a time: control nausea, eat food, keep it down, re-introduce supplements, reduce inflammation and fluid buildup, take chemo, kill cancer, Jesse starts to feel better! How's that breakdown? :)
Everyday I set expectations for us to get on this track and stay on it, and when we have so many setbacks and downfalls, I get SO FRUSTRATED. Before we left to come here this morning, Jesse was just walking around the house gagging...Just nonstop for an hour after breakfast. Eventually, it came up. Obviously, this is miserable for Jesse, but I can't STAND to see him that way. My strength and patience needs renewing...please let today be that first step...
Still scheduled then for the new chemo on Thurs. Hard to reschedule Block visit yet until we know how Jesse will be feeling. Will probably have to have a paracentesis when we come back for chemo on Thurs, as this continues to build up. Jesse weighed 177 lbs. at today's visit, and since about 2-4 lbs is fluid buildup already, its obvious Jesse lost more weight last week from lack of nutrition intake. One step at a time: control nausea, eat food, keep it down, re-introduce supplements, reduce inflammation and fluid buildup, take chemo, kill cancer, Jesse starts to feel better! How's that breakdown? :)
Everyday I set expectations for us to get on this track and stay on it, and when we have so many setbacks and downfalls, I get SO FRUSTRATED. Before we left to come here this morning, Jesse was just walking around the house gagging...Just nonstop for an hour after breakfast. Eventually, it came up. Obviously, this is miserable for Jesse, but I can't STAND to see him that way. My strength and patience needs renewing...please let today be that first step...
Sunday, May 22, 2011 10:35 AM, CDT
Hello. Jesse had 5.5 L drawn off Friday afternoon, and he felt some relief after. We came home and had a great visit with the Loftus family Friday evening. :) Unfortunately, Jesse has been feeling the same. Nausea is almost constant and vomiting every other meal. Jesse's "meals" only consist of a few bites, so after several days of feeling this way and keeping in little food, we fear we are back to where we started. Jesse is feeling too weak, and we have decided to postpone our trip to the Block. If the nausea and vomiting were to persist through the trip, he's afraid he'll be in bad shape and too far away from home. We plan to go in to Regions on Monday to see if there is anything else that can be done. Jesse is currently rotating between three different kinds of anti-nausea meds, and they seem to bring random relief. We need something we can depend on.
We also had a nice visit with the Hagstrom family on Saturday. They came all the way from Cedar Rapids, and it was great to see them! They indulged me with some wedding talk, but I think they're excited for July along with Jesse and I. We also visited with Papa Sam and Barb, and some other of our friends, Ron, Pher, and Scotty, which made for a full house. Jesse napped a lot, but I want to thank all of you for spending time with me this weekend too. You're laughter is my therapy too!
My sister, Kally, and her boyfriend, Luke, had a blast at the Usher concert last night. They won the tickets off the silent auction at our last benefit, which was cool! Also big thanks to my sister, Kayla, and my brother, Greg, who made us killer vegetable stir fry with rice for dinner last night. Jesse kept it down for a while, and I always hope every minute the food stays in, Jesse retains some kind of nutrition before it comes back up.
As always, we appreciate and cherish your prayers. We try to draw strength from them during challenges like these. I'll post when we know more, and when I have the time! Love to you all.
We also had a nice visit with the Hagstrom family on Saturday. They came all the way from Cedar Rapids, and it was great to see them! They indulged me with some wedding talk, but I think they're excited for July along with Jesse and I. We also visited with Papa Sam and Barb, and some other of our friends, Ron, Pher, and Scotty, which made for a full house. Jesse napped a lot, but I want to thank all of you for spending time with me this weekend too. You're laughter is my therapy too!
My sister, Kally, and her boyfriend, Luke, had a blast at the Usher concert last night. They won the tickets off the silent auction at our last benefit, which was cool! Also big thanks to my sister, Kayla, and my brother, Greg, who made us killer vegetable stir fry with rice for dinner last night. Jesse kept it down for a while, and I always hope every minute the food stays in, Jesse retains some kind of nutrition before it comes back up.
As always, we appreciate and cherish your prayers. We try to draw strength from them during challenges like these. I'll post when we know more, and when I have the time! Love to you all.
Friday, May 20, 2011 1:23 PM, CDT
Hello. Updating quickly to let you all know that Jesse scheduled a paracentesis for 3:40 today. Hoping this helps, but he has not gotten relief from the last two or three paras. Jesse was ill this morning but kept down some breakfast after that. Again, I don't believe we have a nausea regimen that is working. The other med the hospital suggested we could try, compazine, made Jesse sick the first three times he tried it during very first rounds of chemo, so we've been avoiding it. Will maybe try this today. I'm still unable to get Jesse to take his supplements, but there is no point in pushing them if they all just come back up. This is very frustrating. I don't think Jesse is feeling all that much better. He's very quiet and is always laying down, doozing in and out most of the time.
We're very much looking forward to some visitors this weekend. Nicer weather would be a perk too. I knew it was supposed to rain today, but I hope it clears up soon. We have a couch on our front porch, which is surrounded by windows, so if the sun will shine, I'll drag Jesse to it! Being around his friends this weekend is sure to help as well. We can't wait to see them! Will update again later. Thanks for checking in on us.
We're very much looking forward to some visitors this weekend. Nicer weather would be a perk too. I knew it was supposed to rain today, but I hope it clears up soon. We have a couch on our front porch, which is surrounded by windows, so if the sun will shine, I'll drag Jesse to it! Being around his friends this weekend is sure to help as well. We can't wait to see them! Will update again later. Thanks for checking in on us.
Wednesday, May 18, 2011 6:04 PM, CDT
Okay, the biggies...we're out of the hospital, we had an appointment with our oncologist today, and the CT scan results revealed basically no change. Normally, no change would be good news, but our oncologist believes that if this lastest chemo were working, we'd have seen more of a response. One of the largest factors is the fluid buildup. This continues to increase, and our doc feels if this latest chemo were having some effect, the fluid would be an indicator. Since it is not, we did not have chemo today. Our oncologist at Regions has another chemo mix in mind to try next; cisplatin and irinotecan. He believes Jesse should take this week off and start this new regimen next Thursday. The biggest reason for this is to give Jesse a "break" and some time to gain weight and energy as well as get nausea and pain under control.
As I anticipated, we'll be doing the oxycontin 20 mg every eight hours now, up from every 12. Today, Jesse fought with nausea and dizziness all day. I fear we don't have the control we want in this area yet. Jesse lost more weight last week. He was 179 pounds in the hospital Monday night. Our doc noticed his muscle deterioration enough to comment on it at our visit today. We seem to be struggling in every aspect...
The combination of everything has had a big effect on Jesse's mood. He's changing so much, and I have a hard time keeping up...what he wants, what he needs, what to anticipate, how to be prepared, what to do next...I'm sorry for not getting this post out sooner, we're just trying to work things out. Next on the agenda is The Block. We're scheduled to be there Monday, so we can share the latest results with them and see what kind of plan they might suggest. Unfortunately, because of the way Jesse has been feeling, he had a big gap in his nutrition supplements, which I'm sure also contributed to the weight loss. They also promote exercise, which has not even been an option for Jesse, and it breaks my heart because it is so beautiful out, finally! He doesn't have the energy to enjoy it. I pray that changes soon because I believe it will be a large contribution to his well being. A friend and former co-worker of Jesse's is working on getting us a free stay for this next trip, and we are so grateful for one less thing to worry about. Also the money raised at each benefit has eased our burden of cost for these trips, so we are going to try and stay focused on a new, better treatment plan. I guess that's it for now. Talk to you all again soon.
As I anticipated, we'll be doing the oxycontin 20 mg every eight hours now, up from every 12. Today, Jesse fought with nausea and dizziness all day. I fear we don't have the control we want in this area yet. Jesse lost more weight last week. He was 179 pounds in the hospital Monday night. Our doc noticed his muscle deterioration enough to comment on it at our visit today. We seem to be struggling in every aspect...
The combination of everything has had a big effect on Jesse's mood. He's changing so much, and I have a hard time keeping up...what he wants, what he needs, what to anticipate, how to be prepared, what to do next...I'm sorry for not getting this post out sooner, we're just trying to work things out. Next on the agenda is The Block. We're scheduled to be there Monday, so we can share the latest results with them and see what kind of plan they might suggest. Unfortunately, because of the way Jesse has been feeling, he had a big gap in his nutrition supplements, which I'm sure also contributed to the weight loss. They also promote exercise, which has not even been an option for Jesse, and it breaks my heart because it is so beautiful out, finally! He doesn't have the energy to enjoy it. I pray that changes soon because I believe it will be a large contribution to his well being. A friend and former co-worker of Jesse's is working on getting us a free stay for this next trip, and we are so grateful for one less thing to worry about. Also the money raised at each benefit has eased our burden of cost for these trips, so we are going to try and stay focused on a new, better treatment plan. I guess that's it for now. Talk to you all again soon.
Tuesday, May 17, 2011 9:44 AM, CDT
Hello! This should only be a quick update, but I have a tendency to get longwinded. Jesse kept all his food down yesterday and slept well through the night. I'm surprised to say the same; the "couch bed" isn't bad, but I slept like a rock! Unfortunately, Jesse's nausea hasn't seemed to subside much. Vomiting has been gone for now, but the constant feeling of nausea is troubling. Jesse's face is often clenched, and I can see he is struggling with the nausea all the time. It's exhausting him, and although he slept well, he's tired all the time. Exercise would most likely help this fatigue, but moving around brings the nausea on faster. We're working with the nurses and doctors to get a regimen that heads all this off a the pass. Meds right when he wakes up, so he can put the nausea at bay to get up and use the bathroom. Meds right before every meal to help keep each meal down, etc. Pain still seems to correlate with the nausea. We will need to change that regimen a bit too. Jesse started taking oxycontin months ago at a 10-mg dose every 12 hours. We eventually had to bump that to every 8 hours, and the last time we increased back in late March, we went up to 20 mg every 12 hours. That worked well for several weeks, until recently. I'm not sure what they think will be best, but my guess is that we can try 20 mg every 8 hours now. Again, not sure what they'll recommend.
They continue to suggest pain med patches, especially when vomiting is involved. Jesse is considering this option. They also continue to suggest placing a permanent drain to stay ahead of the fluid buildup. The hospital resident stated this morning that Jesse's CT scan last night revealed still a lot of fluid, mostly upper abdominal around the stomach. Oh, yes, Jesse had his CT scan that we were originally scheduled for completed last night around 9 pm. Obviously, our biggest interest is in the cancer, but Oncology isn't due to stop by today until around noon or later. The hospital resident was just able to share the fluid buildup, and she also shared Jesse's bones and lungs looked good. We didn't have reason to believe the cancer would spread there, but it's nice to know it hasn't anyway.
So the fluid buildup, especially for how high it is in the abdominal cavity, could be our culprit for increased, continued nausea. We've ruled out any kind of blockage, and Jesse's bowels are moving regularly, so it's a relief to know our biggest issue from last hospitalization is not an issue for this one. Just chatting with the nurse now about anti-nausea reg. Will update again once we talk with Oncology. Thank you all. :)
They continue to suggest pain med patches, especially when vomiting is involved. Jesse is considering this option. They also continue to suggest placing a permanent drain to stay ahead of the fluid buildup. The hospital resident stated this morning that Jesse's CT scan last night revealed still a lot of fluid, mostly upper abdominal around the stomach. Oh, yes, Jesse had his CT scan that we were originally scheduled for completed last night around 9 pm. Obviously, our biggest interest is in the cancer, but Oncology isn't due to stop by today until around noon or later. The hospital resident was just able to share the fluid buildup, and she also shared Jesse's bones and lungs looked good. We didn't have reason to believe the cancer would spread there, but it's nice to know it hasn't anyway.
So the fluid buildup, especially for how high it is in the abdominal cavity, could be our culprit for increased, continued nausea. We've ruled out any kind of blockage, and Jesse's bowels are moving regularly, so it's a relief to know our biggest issue from last hospitalization is not an issue for this one. Just chatting with the nurse now about anti-nausea reg. Will update again once we talk with Oncology. Thank you all. :)
Monday, May 16, 2011 5:27 PM, CDT
Whoops! I didn't say outright that Jesse has been admitted tonight to the hospital to get ahead of the nausea, vomiting, and dehydration. Hopefully, once he's hydrated and on a new anti-nausea regimen, we'll go home comfortably tomorrow. We hope!
Monday, May 16, 2011 5:05 PM, CDT
Hi, all. Jesse did not have his scan done as scheduled today. After a rough couple of days with nausea and vomiting, we gave the doctor a call this morning to see if Jesse could take more anti-nausea medication, as the current doses weren't working well enough. Jesse would keep one meal down and lose another, so after those few days, pain has been harder to manage, and Jesse is weaker from lack of nutrition. Also, we noticed his fluid building back up. We told the nurse all this over the phone, and she asked we come earlier than our scheduled scan to be seen. We were seen by the physician assistant because our oncologist was out of the office today. She said Jesse was indeed dehydrated and distended (big tummy), so she started him on morphine first and foremost, so he would be comfortable as they pursued the other aspects of the day. She was great, we liked her. Morphine was kicking in when they gave Jesse IV anti-nausea meds and had paracentesis done. 3.8 L today, so no new records set, although his last para was only six days ago. I suppose if he had waited another week, it would have been those higher numbers again, so we may have leveled out a bit on the rate of accumulation.
Okay, so after para, we are just getting settled in Jesse's room now. He's eating dinner, but he breaks every now and then as I type this and breathes a little before taking the next bite. Still fighting back nausea. I hope this food stays down. I'm assuming the admitting doc (we don't know who that is yet) will put orders in to keep him on an anti-nausea regimen, so hopefully he'll have more of those meds coming soon. Other than that, we'll be anxious to hear CBC results, and they ran a test on his fluid today to rule out infection. The para tech mentioned his fluid looked pretty normal, and I noticed it was much lighter in color than usual; all signs the fluid does not suggest infection. We'll also be anxious to get the scan done asap tomorrow to know what the plan will be for Wednesday. I will update results as soon as we have them. Thanks for checking in on us. When Jesse looses the energy to fight harder, he draws strength from all of your support. Thank you.
Okay, so after para, we are just getting settled in Jesse's room now. He's eating dinner, but he breaks every now and then as I type this and breathes a little before taking the next bite. Still fighting back nausea. I hope this food stays down. I'm assuming the admitting doc (we don't know who that is yet) will put orders in to keep him on an anti-nausea regimen, so hopefully he'll have more of those meds coming soon. Other than that, we'll be anxious to hear CBC results, and they ran a test on his fluid today to rule out infection. The para tech mentioned his fluid looked pretty normal, and I noticed it was much lighter in color than usual; all signs the fluid does not suggest infection. We'll also be anxious to get the scan done asap tomorrow to know what the plan will be for Wednesday. I will update results as soon as we have them. Thanks for checking in on us. When Jesse looses the energy to fight harder, he draws strength from all of your support. Thank you.
Wednesday, May 11, 2011 6:51 PM, CDT
This past Saturday my coworkers held a third benefit for me at the Mermaid in Mounds View. Thank you to everyone involved, I had an amazing time. Once again, I am overwhelmed by your support and generosity. I hope I properly thanked everyone on Saturday, because I have trouble finding the words every time I try to write them. Obviously, this time is no different, because I am at a loss for what to say. I am a very fortunate person to be blessed with so many amazing people in my life.
It has been a challenging week so far, but I am trying to push through. I have been struggling to keep food and pills down since Sunday evening. Part of the problem is the continuous battle with fluid buildup in my abdominal cavity. As most of you know, I have had the fluid drained every couple weeks for the past few months. This time around they removed 6.8 liters on Tuesday. I hoped this would offer me some immediate relief, but not quite yet. The fluid is a bit frustrating to deal with, but I am trying to stay optimistic that it is part of the healing process. I have used the analogy before; the war rages on, and we keep fighting. The CT scan is still scheduled for Monday and the appointment with the doctor for the results on Wednesday. If progress is being made, chemo continues that same day.
There are so many ups and downs recently; it has been hard to gauge how everything is going. Some days I feel great and, of course, other days I can barely get myself out of bed. I still feel better than I did two months ago when I was in the hospital, so that is progress. I still find it hard to focus on things for any length of time. Things like writing, playing guitar, paying bills, or reading a book are increasingly difficult. I hope it is just the drugs and my enjoyment for these and other things will return eventually. I have always been a bit impatient, so these setbacks are hard for me to deal with, but I know I have to keep pushing forward. Starting today, I am trying to set some small goals for myself to get back to the things I enjoy, or things I don’t really enjoy, but need to be done. One of those goals is to write in this journal more. I enjoy writing, I feel better when I do and I could use a few small accomplishments to increase my motivation. I feel better already.
Friday, May 6, 2011 1:01 PM, CDT
Hello from somewhere between wi and il...and my shift and function keys arent working, so no caps and no numbers...lame. the block was good. jesse had nutrition, yoga, and massage. we shared the plan with them about continuing taxotere if the scan on may sixteen shows its working or wanting their opinion if we have to switch the plan. as always, they were supportive, happy, and willing to help. the two labs we will be getting drawn soon on blocks recommendation are c reactive protein and vit d. we will be getting those drawn at regions next week, most likely monday, and will share that progress once we have the results back. the other nutrition levels arent due to be drawn for a month or so. we are scheduled to return to block mon, may twenty third. hopefully, jesse will already have had chemo the eighteenth because the scan will show that its working! pray, pray, pray!
jesse is snoozing in the backseat, pretty comfortable right now, and excited for the weekends events. we are both really looking forward to seeing many of you at some point this weekend. thanks for being amazing.
jesse is snoozing in the backseat, pretty comfortable right now, and excited for the weekends events. we are both really looking forward to seeing many of you at some point this weekend. thanks for being amazing.
Tuesday, May 3, 2011 8:01 AM, CDT
Hi, everyone. Just a quick, short post (hopefully) on my 15-min. break at work. I'm back again yesterday, today, and half-day
Hi, everyone. Just a quick, short post (hopefully) on my 15-min. break at work. I'm back again yesterday, today, and half-day tomorrow, trying to maintain part-time status at 20 hours per week. Jesse did not go back yesterday and was debating this morning when I left about today. He just doesn't have the energy and motivation required to get there. The pain is still manageable, but he's uncomfortable enough to be exhausted from just maintaining, which makes going to work take that much more out of him. I fully support him staying home and resting whenever he wants! He'd say I just enable him to be lazy. :) Be lazy, honey, I love you! :)
We are preparing to leave for Skokie (Chicago area) again tomorrow after I get off work. Special thanks to the Nelsons again for letting us borrow their iPass! This particular trip will include Jesse's Mom, Dawn, who has let us use the comforts of her mini-van for every trip made. Thanks, Dawn. :) Our appointments are on Thursday to include nutrionist, massage therapist, and some doctors. I will update you all with the results of the day Thursday evening or Friday.
We have another big weekend coming up, and I hope Jesse can take part in and enjoy as much of it as possible. We will be down in the Rochester area Friday evening. It is my parents' 35th wedding anniversary on Friday, May 6, and I hope to see them! Congrats, Mom & Dad! WE LOVE YOU! Also, Saturday morning, we're planning to walk for the annual Cystic Fibrosis fundraiser at Silver Lake Park in Rochester at 10 am. We walk for my cousin and a very good friend of ours little boy. I hope we have a beautiful day to walk in.
Saturday evening, Jesse and I are very much looking forward to seeing family and friends for a generous benefit being put on by Jesse's fabulous co-workers...also known as extended family! God bless the MN State Patrol for SO MANY reasons. We hope to see many of you out at The Mermaid in Mounds View, starting at 4 pm and going til midnight!
The only other goings on around our household is wedding planning! I've made some updates to our site including pictures, registries, and guest information about lodging, so if you want to, you can check that out here: www.theknot.com/ourwedding/JesseBrewington&KarlynSmith
We are preparing to leave for Skokie (Chicago area) again tomorrow after I get off work. Special thanks to the Nelsons again for letting us borrow their iPass! This particular trip will include Jesse's Mom, Dawn, who has let us use the comforts of her mini-van for every trip made. Thanks, Dawn. :) Our appointments are on Thursday to include nutrionist, massage therapist, and some doctors. I will update you all with the results of the day Thursday evening or Friday.
We have another big weekend coming up, and I hope Jesse can take part in and enjoy as much of it as possible. We will be down in the Rochester area Friday evening. It is my parents' 35th wedding anniversary on Friday, May 6, and I hope to see them! Congrats, Mom & Dad! WE LOVE YOU! Also, Saturday morning, we're planning to walk for the annual Cystic Fibrosis fundraiser at Silver Lake Park in Rochester at 10 am. We walk for my cousin and a very good friend of ours little boy. I hope we have a beautiful day to walk in.
Saturday evening, Jesse and I are very much looking forward to seeing family and friends for a generous benefit being put on by Jesse's fabulous co-workers...also known as extended family! God bless the MN State Patrol for SO MANY reasons. We hope to see many of you out at The Mermaid in Mounds View, starting at 4 pm and going til midnight!
The only other goings on around our household is wedding planning! I've made some updates to our site including pictures, registries, and guest information about lodging, so if you want to, you can check that out here: www.theknot.com/ourwedding/JesseBrewington&KarlynSmith
Otherwise, will chat/post with you all again later this week. We love you and are so grateful for your support.
Thursday, April 28, 2011 12:56 PM, CDT
Well, this is what I get for waiting too long to post! I forgot to mention that the tasting last Friday the 22nd went extremely well. Jesse was feeling good, and everything we sampled was BETTER than I expected. We had such a good time, and I was really glad that my Mom was able to join us. This was her first opportunity to see our venue, and Jesse and I are excited all over again for July. Showing her the place and outlining our thoughts for how things are going to come together was fun! So, I’d also like to say thank you to our wedding coordinator, Diane, who has been following us on here and doing wonderful things to bring our day together for us at Cragun’s.
Well, hopefully that’s it for today. We will post again soon. Thanks for your support and encouragement daily. J
Thursday, April 28, 2011 11:35 AM, CDT
I don’t know where to start…There are so many to-do’s running through my head lately! Let’s start with BREWFEST…What a success! Almost $17,000 was raised. As I type this, Jesse is remembering medical expenses he put on a credit card months ago that we’ll be able to pay off now. More to-do’s!
Jesse and I have the most amazing friends, and we can’t thank you enough for all you did to contribute to BREWFEST to help us out. I hope you received as many compliments on the turnout as we have gotten. Your hard work was not only appreciated by Jesse and I but our families and their friends as well. BIG thank you to Loftus’, Hagstroms, Campbells (you will be soon, Evelyn!), Lawlers, Watts’, Mitchells, Gusts’, Lehnertzs, Labare, and many others. We love you all so much, and we don’t get to see you enough. Looking forward to July, when we hope to get you all together again!
Speaking of July, I have a LOT more people to thank, and the best way I know how is to mention them here. Thank you to Blake F., the organizer for our May 7 benefit, who also offered his DJ-ing services at no cost for our wedding day. Thank you to Sara at The Loft Bridal in Lakeville who applied very generous discounts to my gown and my mother’s gown after we’d already decided on them. She’s insisted on helping me wherever she can, and it still brings tears to my eyes how generous she’s been. Thank you to our photographers/videographers, Metal Bird Media who not only offered a huge discount on their services for our wedding, again after we had booked them already anyway, but also touch base with us frequently and have offered to do anything they can before July if needed. Thank you to Rachel S. who read our story in the Post Bulletin and reached out to us to offer her floral services at cost. We hit it off immediately, and I love working with her. Thank you to the Arendts, the Carlsons, and Dreamday Services; our wonderful neighbors and wedding decorators including delivery, set-up, and take-down for a steal! Thank you to Jill E., our officiate, who also keeps in touch with us daily to offer anything she can. There are still many to-do’s, but I’m enjoying this process while Jesse is feeling better.
And speaking of Jesse! We had chemo yesterday at Regions followed by another paracentesis. Both were successful. Jesse set a new record, having 5.4 L (5400 cc) of fluid drawn off yesterday. He is feeling pretty good today, and I put a bug in his ear about possibly sneaking out of the house to add a few items to our registry! The Block Center wants him to incorporate exercise anywhere he can! We also set up some important future dates yesterday. CT scan to determine if taxotere is working will be Monday, May 16. Follow-up appointment with our oncologist will be Wednesday, May 18, when we hope to have the result of that CT scan. If the result shows the cancer has slowed, shrunk, or maintained, we continue on taxotere and are already pre-slotted to administer chemo that day. After our last CT scan, there was a big break from chemo, several weeks, and I don’t want to give this cancer any breaks anymore, if we can help it. Jesse and I are glad to have a game plan. If the taxotere is not working, this will be tweaked a bit. Our oncologist at Regions has mentioned another combination of chemo drugs he would initiate if the taxotere does not work, but we’d also want input from The Block at that point. Either way, we’ll be on schedule to start some form of treatment right away. We also received the results of Jesse’s MRI yesterday. The Block had requested it be performed, and Jesse had it done at Regions a couple weeks ago. I’m happy to report this came back normal, so nothing to worry about there.
We leave again for the The Block now on Wed., May 4. Our appointment is Thurs. May 5 to discuss blood test results to see how Jesse’s body is responding to the nutrition changes. Also, he’s having trouble stomaching the shake supplement, so we’re hoping to get suggestions for another way to get those supplements in. Jesse will also have massage therapy and Yoga.
Some of you know that Jesse and I went back to work Monday this week, but for those who don’t, it went fairly well. Jesse also went in Tuesday, but left after a couple hours. I think the fluid buildup was contributing to his misery that day, so next week should be better. We’ll both work Mon-Wed and then head out for the trip to Skokie around noon. I just want to thank a few more people here, and that is our co-workers. Mine welcomed me back extremely warmly and supportive. You guys are wonderful, thank you. Jesse’s co-workers email me on occasion and can’t express enough how valuable he is to them. How nice of you to share that!
Well, I was just asking Jesse how to close this lengthy post, and he says, “Tell them we love them and thank them.” There you have it folks…and we sure do!
Thursday, April 21, 2011 8:38 PM, CDT
I have been thinking about writing this update since Monday, and each day goes by with no progress and more to write about. Normally at this point I would look at Karlyn and ask her to do the update, but since she has a cold and is not feeling well, I will have to do it myself. I guess I should start with the benefit this past Saturday. Thank you, first and foremost, to Karlyn’s sisters Kayla, Kortney and Kally. You and your army of volunteers did a fantastic job, making it possible for such a successful event. What an amazing turnout! I cannot thank everyone enough for the unbelievable amount of support. To all those who donated their time, auction items, and hard earned money, I thank you. I am completely humbled and a bit overwhelmed by the over $25,000 that was raised. The tears well up in my eyes just thinking about it. It was great to see and chat with so many of you and I look forward to being able to do the same this weekend in Dover.
After Saturday, Karlyn and I spent Sunday and Monday recovering, not doing much of anything. Tuesday, we spent the afternoon at Regions for an MRI and other appointments. Both Karlyn and I completed a Health Care Directive with the help of the staff at Regions. This is a legal document that names someone to make medical decisions if you are unable to make them on your own. We have not gotten the MRI results, but we met with the Doctor to follow up on the last treatment from the Block. I discussed the insurance problems we encountered, but also questions I had about current and future treatment options. This conversation ultimately helped me to “talk out” the plan for the next round of chemo, and we have decided to return to Regions for the treatment next Wednesday. Though the benefit was a great success, I cannot yet justify paying full price at the Block for the same chemo drug I can get covered at Regions knowing the long road we have ahead. We have rescheduled our trip to Chicago for the following week in order to follow up and continue working with them on the other aspects of my treatment. I believe the nutrition and supplementation aspects of my treatment have helped significantly, so at this point, we will be splitting the treatment. Three weeks after this chemo treatment, I will have another CT scan to determine if we are having success and once again make choices on the next step. It is an ever-changing process and I am trying to take it day by day just like everything else. I believe everything happens for a reason and that it is important for me to be fully involved in my treatment and willing to adjust course as necessary.
We shared our story with both the Rochester Post Bulletin and WCCO channel 4 this week. Apparently, our story was in Tuesday’s Post Bulletin (we don’t subscribe, so we haven’t seen the full article yet!), and we “debuted” on WCCO last night (Wed) at 10 pm. Here are the links for both: http://minnesota.cbslocal.com/2011/04/20/helping-others-to-being-helped-dispatcher-battles-cancer/
Karlyn and I are heading to Cragun’s tomorrow to taste test the food for our wedding. We are looking forward to seeing everyone who can make it down to Dover on Saturday night and to spending time with family on Sunday. Have a happy and safe weekend Easter weekend.
Thursday, April 14, 2011 5:12 PM, CDT
We are having a nice visit with Papa Sam and Sister Angie right now...but quickly, Jesse had 4.8 Liters pulled off his abdomen today. I know, WOW, its a new record! Jesse is feeling much better, so could very well have been our culprit from earlier.
Also, we had to reschedule interview with WCCO. They got busy, and we ran late, so next week we'll meet, and I will keep you all posted on air date.
Other than that, we are meeting up at the Brewington Farm for a goodbye to Angie on Friday, we will see you all at the Benefit on Saturday, and we're measuring groomsmen and buying suits on Sunday! No tuxes planned for July...but you'll get to see our master plan come together then! :) Thank and love you all.
Also, we had to reschedule interview with WCCO. They got busy, and we ran late, so next week we'll meet, and I will keep you all posted on air date.
Other than that, we are meeting up at the Brewington Farm for a goodbye to Angie on Friday, we will see you all at the Benefit on Saturday, and we're measuring groomsmen and buying suits on Sunday! No tuxes planned for July...but you'll get to see our master plan come together then! :) Thank and love you all.
Thursday, April 14, 2011 11:20 AM, CDT
Hello! It is a pretty good day so far in the Brewington household. Jesse has been having some stomach discomfort, and we're not really sure if there is a culprit, other than the cancer itself. We are heading in for a paracentesis today, in case the fluid buildup is contributing. Regions was great, as usual, at getting us in on short notice. Its a quick procedure and will hopefully do the trick.
I'm excited to share with you a link that Jesse created yesterday that makes donating easier for our international friends and family. We got the idea to look for a quick button donation option from Jesse's step-sister, Angie, who has been staying with us this week, as her friends and family in England and all over Europe could utilize this easier when converting donations into US dollars. Jesse created a page via Facebook, but I do not believe you have to have a Facebook account to use this. The link is http://goo.gl/dDzhE Hopefully that will work for those of you who might prefer to use Paypal, debit, or credit to donate. The only "catch" is a 5% fee that is taken from what we collect, but it seems a small price to pay for the overall benefit. Thank you all so much for your continued support and generosity.
Also, for those who didn't see it yet, Jesse and I had an interview with KTTC yesterday afternoon, which aired last night at 6 pm. You can watch it here: http://www.kttc.com/Global/story.asp?S=14442216
Jesse and I were very appreciative for the coverage to support our upcoming benefit this weekend. They cut out much of what we shared, of course, but most importantly was Jesse's opportunity to thank all of you! He said some very nice things that were cut, but it seems as though he'll get another chance...WCCO (channel 4 in the Twin Cities) is interviewing us at 4 pm today. As Jesse and I are in that network, we'll actually get to see that one live, where we had to wait for KTTC to post online before we saw that one. :) I just hope that our story can have some kind of positive impact on our community in some way or another. We are so grateful for all of you.
I'm excited to share with you a link that Jesse created yesterday that makes donating easier for our international friends and family. We got the idea to look for a quick button donation option from Jesse's step-sister, Angie, who has been staying with us this week, as her friends and family in England and all over Europe could utilize this easier when converting donations into US dollars. Jesse created a page via Facebook, but I do not believe you have to have a Facebook account to use this. The link is http://goo.gl/dDzhE Hopefully that will work for those of you who might prefer to use Paypal, debit, or credit to donate. The only "catch" is a 5% fee that is taken from what we collect, but it seems a small price to pay for the overall benefit. Thank you all so much for your continued support and generosity.
Also, for those who didn't see it yet, Jesse and I had an interview with KTTC yesterday afternoon, which aired last night at 6 pm. You can watch it here: http://www.kttc.com/Global/story.asp?S=14442216
Jesse and I were very appreciative for the coverage to support our upcoming benefit this weekend. They cut out much of what we shared, of course, but most importantly was Jesse's opportunity to thank all of you! He said some very nice things that were cut, but it seems as though he'll get another chance...WCCO (channel 4 in the Twin Cities) is interviewing us at 4 pm today. As Jesse and I are in that network, we'll actually get to see that one live, where we had to wait for KTTC to post online before we saw that one. :) I just hope that our story can have some kind of positive impact on our community in some way or another. We are so grateful for all of you.
Tuesday, April 12, 2011 7:45 PM, CDT
Hello, all. Just a quick note to say hi. Like the ribbons? Of the choices, this was the closest I could find to "periwinkle," which is apparently the ribbon color denoted for stomach cancer. For those of you who didn't know that, you'll see some extra periwinkle at the benefit this weekend. Jesse and I are hoping for a good day, so we can enjoy the company of all of you who are able to make it.
Yesterday and today have been pretty good days for Jesse. He's trying to gradually implement little projects into his daily routine and build up to bigger things. Jesse's dad came up and helped us purchase, haul, and install a new front storm door. Jesse shattered the old one last year while mowing the front yard when he threw up a rock, so we were in need of a new one! Jesse's step-sister has been staying with us this week, and she's here from England! We're very happy she is able to be here for awhile to visit.
Last weekend was my sister's Minnesota wedding reception, which was a fantastic time. Jesse wasn't completely up to par, but he made the trip and popped his head in intermittently. Today, though, he was able to make it to a work-related promotion ceremony for a colleague. Yesterday, our Regions oncologist gave Jesse the greenlight to drive a vehicle, so there was no stopping him today. :) He is also working on returning to work part-time. Just a little paperwork to complete to make that happen, so hopefully later next week.
Our next appointment is at Regions on Tues. Apr. 19, and we are completing Jesse's health care directive paperwork at that visit with the assistance of the Cancer Center social worker. I’m glad for the professional help, since we’ve talked about completing this for weeks and still haven’t actually done it yet. We are also having the MRI completed that The Block Center recommended we have done. Jesse hopes to have all his return-to-work paperwork completed at that visit as well.
Jesse's feeling well enough to return to work sort of snuck up on me, so I inquired about returning to my job as well. I had agreed to come back part time when Jesse did, but I can only start back at the beginning of a pay period, so that will officially be Mon. Apr. 25. That will be right before we leave for The Block again on Tues. Apr. 26, and we will be staying through Thursday again. We are looking into everything we can do to improve Jesse's insurance coverage before that next visit. We are so grateful that the donations through our benefit account have allowed for our travel costs to and from The Block so far as well as provided partial payment for the costs of treatment. We are hopeful that the benefit this weekend will help us pay off the remainder from our last visit. We are so blessed and thankful for all of you planning to come and participate to support our cause. Love you and will update again soon!
Yesterday and today have been pretty good days for Jesse. He's trying to gradually implement little projects into his daily routine and build up to bigger things. Jesse's dad came up and helped us purchase, haul, and install a new front storm door. Jesse shattered the old one last year while mowing the front yard when he threw up a rock, so we were in need of a new one! Jesse's step-sister has been staying with us this week, and she's here from England! We're very happy she is able to be here for awhile to visit.
Last weekend was my sister's Minnesota wedding reception, which was a fantastic time. Jesse wasn't completely up to par, but he made the trip and popped his head in intermittently. Today, though, he was able to make it to a work-related promotion ceremony for a colleague. Yesterday, our Regions oncologist gave Jesse the greenlight to drive a vehicle, so there was no stopping him today. :) He is also working on returning to work part-time. Just a little paperwork to complete to make that happen, so hopefully later next week.
Our next appointment is at Regions on Tues. Apr. 19, and we are completing Jesse's health care directive paperwork at that visit with the assistance of the Cancer Center social worker. I’m glad for the professional help, since we’ve talked about completing this for weeks and still haven’t actually done it yet. We are also having the MRI completed that The Block Center recommended we have done. Jesse hopes to have all his return-to-work paperwork completed at that visit as well.
Jesse's feeling well enough to return to work sort of snuck up on me, so I inquired about returning to my job as well. I had agreed to come back part time when Jesse did, but I can only start back at the beginning of a pay period, so that will officially be Mon. Apr. 25. That will be right before we leave for The Block again on Tues. Apr. 26, and we will be staying through Thursday again. We are looking into everything we can do to improve Jesse's insurance coverage before that next visit. We are so grateful that the donations through our benefit account have allowed for our travel costs to and from The Block so far as well as provided partial payment for the costs of treatment. We are hopeful that the benefit this weekend will help us pay off the remainder from our last visit. We are so blessed and thankful for all of you planning to come and participate to support our cause. Love you and will update again soon!
Wednesday, April 6, 2011 7:56 PM, CDT
Hi, everyone. We had a pretty good day at The Block today. We arrived at 9:15 this morning and were on the docket to receive chemo right away. This was delayed while three nurses took their turns getting an IV into Jesse. The last nurse (the successful one) playfully mentioned they don't call her "vampire" for nothing. :)
Before that, we touched base with the nutritionist to tweak Jesse's supplement regimen. We received more results back from Jesse's March 22 blood draw. Since he was pretty sick that day, I'm already confident that he's overcome most of the deficiencies they've identified. We already knew about the vitamin D, but learned today that Jesse is deficient in vitamin B, vitamin B12, vitamin C, vitamin E, zinc, and a few others most of you wouldn't recognize. Most worth mentioning was Jesse's increased c-reactive protein, which is a sensitive marker of systemic inflammation. Basically, high levels are associated with cancer, and normal is less than 1.0. Jesse's level was 185.91. The good news is that Jesse is on many supplements and good diet changes that specifically target reducing this inflammation. I can't wait to see what his level comes back at in three weeks when they test it again!
After nutrition, Jesse met with the physical therapist, the massage therapist, and the yoga instructor. The physical therapist was impressed with Jesse's hydration levels! His excessive water drinking is paying off. I think Jesse's favorite was the massage. He will be scheduled for one of those for every future visit. :)
By the time we saw the yoga specialist, it was 3:00 and still no chemo. The holdup? Insurance. Unfortunately, nada. The office manager at Block, a phenomenal women who went to bat for us with all her energy before even having met us, informed us we would not have coverage for today's visit. Jesse and I are not entirely sure yet where the bill is for our first visit, but after paying out of pocket today, we have a pretty good idea what it will cost once that first-visit bill finds us. Yikes. I couldn't help but mention to the office manager that we don't feel there is a price on how well Jesse has been feeling, so we're willing to pay whatever it takes. Thanks to all of you, we'll hopefully be able to. She asked us before she handed over the bill how much we thought it might cost...She said she'd feel a little better revealing the cost if we guessed in the ballpark. Although our guess was lower, we were in the ballpark (5-digits, sheesh!), but again, there is no price on how Jesse has been feeling.
And speaking of, he's lying next to me now, all settled in our (discounted) King size bed thanks to the folks at Comfort Inn Skokie, and seems fairly content, enjoying his peanut M&Ms, which apparently you crave after chemo. :) His voice is a bit hoarse, but so far, that seems to be the only side effect. Oh, I should also mention now that we mentioned earlier the krono-therapy approach that Block advocates, which slowly administers the chemo to help reduce side effects and increase effectiveness. Well, unfortunately today, we missed the "cut off" for that administration technique. :( Apparently it needs to be before noon, but we were promised "next time." I was bummed, but apparently they believe at the Block that any chemo administration is better than none, so we'll take it.
As always, thank you for your support and positive thoughts. Thank you SO much to those of you that have made financial contributions to our battle. We would not be here without you. Thank you to my Papa Justin and sister Kayla for joining us on this latest trip to Skokie. Thank you to the "Brew Crew" that walked in Lewiston to raise money for cancer research last Sunday. Thank you to the Nelsons for borrowing us their Chicago iPass to help make it a breeze getting through all those toll roads! Jesse and I are feeling pretty good tonight and are always grateful for low-key nights such as these. We are very much looking forward to my sister and brother-in-law's wedding reception in a few short days because celebrating steps in life, big and small, is what it's all about. We love you all. :)
Before that, we touched base with the nutritionist to tweak Jesse's supplement regimen. We received more results back from Jesse's March 22 blood draw. Since he was pretty sick that day, I'm already confident that he's overcome most of the deficiencies they've identified. We already knew about the vitamin D, but learned today that Jesse is deficient in vitamin B, vitamin B12, vitamin C, vitamin E, zinc, and a few others most of you wouldn't recognize. Most worth mentioning was Jesse's increased c-reactive protein, which is a sensitive marker of systemic inflammation. Basically, high levels are associated with cancer, and normal is less than 1.0. Jesse's level was 185.91. The good news is that Jesse is on many supplements and good diet changes that specifically target reducing this inflammation. I can't wait to see what his level comes back at in three weeks when they test it again!
After nutrition, Jesse met with the physical therapist, the massage therapist, and the yoga instructor. The physical therapist was impressed with Jesse's hydration levels! His excessive water drinking is paying off. I think Jesse's favorite was the massage. He will be scheduled for one of those for every future visit. :)
By the time we saw the yoga specialist, it was 3:00 and still no chemo. The holdup? Insurance. Unfortunately, nada. The office manager at Block, a phenomenal women who went to bat for us with all her energy before even having met us, informed us we would not have coverage for today's visit. Jesse and I are not entirely sure yet where the bill is for our first visit, but after paying out of pocket today, we have a pretty good idea what it will cost once that first-visit bill finds us. Yikes. I couldn't help but mention to the office manager that we don't feel there is a price on how well Jesse has been feeling, so we're willing to pay whatever it takes. Thanks to all of you, we'll hopefully be able to. She asked us before she handed over the bill how much we thought it might cost...She said she'd feel a little better revealing the cost if we guessed in the ballpark. Although our guess was lower, we were in the ballpark (5-digits, sheesh!), but again, there is no price on how Jesse has been feeling.
And speaking of, he's lying next to me now, all settled in our (discounted) King size bed thanks to the folks at Comfort Inn Skokie, and seems fairly content, enjoying his peanut M&Ms, which apparently you crave after chemo. :) His voice is a bit hoarse, but so far, that seems to be the only side effect. Oh, I should also mention now that we mentioned earlier the krono-therapy approach that Block advocates, which slowly administers the chemo to help reduce side effects and increase effectiveness. Well, unfortunately today, we missed the "cut off" for that administration technique. :( Apparently it needs to be before noon, but we were promised "next time." I was bummed, but apparently they believe at the Block that any chemo administration is better than none, so we'll take it.
As always, thank you for your support and positive thoughts. Thank you SO much to those of you that have made financial contributions to our battle. We would not be here without you. Thank you to my Papa Justin and sister Kayla for joining us on this latest trip to Skokie. Thank you to the "Brew Crew" that walked in Lewiston to raise money for cancer research last Sunday. Thank you to the Nelsons for borrowing us their Chicago iPass to help make it a breeze getting through all those toll roads! Jesse and I are feeling pretty good tonight and are always grateful for low-key nights such as these. We are very much looking forward to my sister and brother-in-law's wedding reception in a few short days because celebrating steps in life, big and small, is what it's all about. We love you all. :)
Tuesday, April 5, 2011 4:47 PM, CDT
We just cleared Wisconsin Dells! On our way to Skokie, and TomTom says we should arrive by 7:38 pm, but that will change after we stop for Dairy Queen and dinner. :) Jesse is feeling MUCH better for this trip than the first one. I am really hoping this continues after chemo tomorrow. We will keep you posted with how Jesse is feeling during chemo and afterwards tomorrow. Other than today, we've had some ups and downs over the past few days. I'm thinking just a few things we can tweak once we touch base with the docs and nutritionist at The Block. Anyway, talk more in a couple days.
I wanted to quickly post the most recent benefit information. Jesse's co-workers at Metro State Patrol have set up a benefit to give you all a third option to attend if you're unable on April 16 or April 23. That info is below. Thanks and love you all!
Time Saturday, May 7 at 4:00pm - May 8 at 12:00am
Location The Mermaid 2200 County Road 10 Mounds View, MN
Created By Blake Freeman More Info Come have a night of food, drinks and dance with Jesse. $20 door charge with proceeds going to Jesse. Twins, and Usher tickets are just some of the silent auction prizes that we have. Please forward this on to anyone and everyone that you think would like to come. If you would like to donate a silent auction item, please contact Blake Freeman at bfreeman51@gmail.com.
Jesse is a Minnesota State Patrol Radio Communications Supervisor who was diagnosed with Stomach Cancer in Nov 2010. After a nine week interval of chemotherapy at Regions Hospital the cancer, unfortunately, has not responded. Jesse and his fiancée Karlyn have had to take leave from their positions to be prepared for whatever the upcoming months may bring. We are looking to help them out with their medical bills, as well as the travel costs for further treatments at the Block Cancer Center in Chicago.
I wanted to quickly post the most recent benefit information. Jesse's co-workers at Metro State Patrol have set up a benefit to give you all a third option to attend if you're unable on April 16 or April 23. That info is below. Thanks and love you all!
Time Saturday, May 7 at 4:00pm - May 8 at 12:00am
Location The Mermaid 2200 County Road 10 Mounds View, MN
Created By Blake Freeman More Info Come have a night of food, drinks and dance with Jesse. $20 door charge with proceeds going to Jesse. Twins, and Usher tickets are just some of the silent auction prizes that we have. Please forward this on to anyone and everyone that you think would like to come. If you would like to donate a silent auction item, please contact Blake Freeman at bfreeman51@gmail.com.
Jesse is a Minnesota State Patrol Radio Communications Supervisor who was diagnosed with Stomach Cancer in Nov 2010. After a nine week interval of chemotherapy at Regions Hospital the cancer, unfortunately, has not responded. Jesse and his fiancée Karlyn have had to take leave from their positions to be prepared for whatever the upcoming months may bring. We are looking to help them out with their medical bills, as well as the travel costs for further treatments at the Block Cancer Center in Chicago.
Wednesday, March 30, 2011 4:30 PM, CDT
Hi, everyone. I don’t think we mentioned earlier that we had a doctor’s appointment at Regions today. They haven’t seen us since two days after hospital dismissal, and I was SO happy to show off my fantastic-feeling fiancé today! Jesse has continued to improve. Today, when the nurse asked for his pain scale rating (which has not been below a 2 for months), he gave a zero! It was so rewarding to sit in the doctor’s office today and smile and laugh with each other, while we gave them our update from The Block.
Afterwards, Jesse took me out to eat at my favorite restaurant. Axel’s Bonfire in Eagan, for those of you who don’t know. This is the same restaurant we went to and celebrated our engagement in December 2009. We were probably as mushy with each other today as we were then. ;) After a month of debating whether to cancel our wedding in July or try to move the date up somehow, we’ve decided to go forward with all our efforts to make our first-choice wedding day just how we’ve been planning for July 30 at Cragun’s in Brainerd. I pray Jesse will feel as good then as he does today.
What else can I mention? The last couple days have been similar to today. Jesse is feeling good and doing more things around the house. We continue to battle for the right bowel regimen concoction and for ingredients to mix his protein supplement shakes that taste better, but pain management can be checked off the list for now. This is especially nice for our upcoming trip to Skokie next week. Jesse will tolerate the van ride better and hopefully be able to utilize the hot tub at the hotel. Relax, relax, relax for Jesse! The Block also offers massage therapy, which Jesse will be learning more about on April 6. I will post again before then (or Jesse will). We’ve been having a hell of a time with our computers and internet connection. Unfortunately, something I log into, possibly hotmail, has put viruses on both our laptops. ;( As I am typing this, Jesse called and set up a new internet provider, as I was unable to get online to post this after several tries.
One more thing…Thank you to Papa Sam for the chest freezer he was able to get for us! It sure is nice to have. As always, thanks to all of you for your kind thoughts and generosity between visits and donations. You all have made a big difference on how Jesse and I are able to tackle the cancer battle by easing the burden of everyday life stressors. Thank you, and we love you!
Saturday, March 26, 2011 6:27 PM, CDT
Hi, everyone. What a spectacular day! Jesse is feeling really well and even got out his guitar to play and sing this afternoon. We had visits from his Dad, Gramma C., Uncle Tom, Aunt Deb, and Wally. Uncle Tom came all the way from Tucson. Jesse and I really enjoyed having them all here, and they were as grateful as I that today was such a great day. We have been taking supplements like crazy, and look! Feeling better already. I pray this turning point is indicative of how Jesse will start to feel regularly from here on out.
Quick update on some medical "jargon." I forgot to mention earlier that we received some quick lab results from The Block before we left. Worth mentioning was Jesse's vitamin D deficiency, which he received a prescription to boost over the next month. Also, Jesse's white count was low, for the first time, most likely due to his most recent chemo treatment. It was not low enough to warrant a shot to boost his white count, which our doctor at The Block had mentioned initially, so we're good there. I'm confident it has already replenished itself significantly, as Jesse's counts are always textbook normal prior to his chemo treatments. Lastly, the lab results showed a significant amount of inflammation, which is commonly found in cancer patients, as the cancer causes this inflammatory response. Remember I mentioned Jesse's diet and supplements are geared towards calming or soothing this inflammation, and I think the way he feels today reflects that these changes are at least decreasing this inflammation. At most, they are killing cancer cells! I hope, I pray, I believe. Thanks to all of you for doing the same. Will update again soon.
Quick update on some medical "jargon." I forgot to mention earlier that we received some quick lab results from The Block before we left. Worth mentioning was Jesse's vitamin D deficiency, which he received a prescription to boost over the next month. Also, Jesse's white count was low, for the first time, most likely due to his most recent chemo treatment. It was not low enough to warrant a shot to boost his white count, which our doctor at The Block had mentioned initially, so we're good there. I'm confident it has already replenished itself significantly, as Jesse's counts are always textbook normal prior to his chemo treatments. Lastly, the lab results showed a significant amount of inflammation, which is commonly found in cancer patients, as the cancer causes this inflammatory response. Remember I mentioned Jesse's diet and supplements are geared towards calming or soothing this inflammation, and I think the way he feels today reflects that these changes are at least decreasing this inflammation. At most, they are killing cancer cells! I hope, I pray, I believe. Thanks to all of you for doing the same. Will update again soon.
Thursday, March 24, 2011 2:04 PM, CDT
Hi everyone. The update this afternoon is actually coming from Kayla, Karlyn's sister. I wanted to switch things up a little bit and update you all on the things going on outside of the medical jargon (although I may add a little of that), but more so on Karlyn and Jesse and how they are holding up. I also wanted to give them a break from updating because as much as they love to do it, it becomes hard to find time and words.
I was lying in bed last night thinking about them (as usual) and had so many thoughts that I wanted so badly to share with everyone else that loves them as much as I do. My thoughts are stemmed from spending the last few days (morning, noon, and night) with them in Chicago and getting some good knowledge of what is going on in "their" world. Witnessing some of the hell in the last few days I am utterly amazed at the strength and courage that remain in both of them. They experience SO many new challenges everyday it can be so frustrating and would be easy to want to give up. As I am there watching the both of them I notice them barely bat an eye. As Jesse fights like hell through pain and nausea Karlyn is right there to do whatever she can (sometimes there isn't much she can do). I know these two are the strongest people I have ever known but I have to say THANKS to each and every one of you for helping them recharge day after day. It is your prayers and encouragement that puts fire back in Jesse's eye everyday. Some days it is hard to see but I know it is there. I also wanted to mention and give thanks to God for answering some of our prayers these past few days. We are so thankful to have a continued treatment plan and doctors that sincerely want to help Jesse feel better and continue to fight this fight.
I can see improvement in just the couple days he has been on his new supplements and pain regimen and look forward to seeing him continue with the new health and pain plan. It is a lot to remember to take and do each day but I know Karlyn and Jesse will become EXPERTS!
I pray that God will continue to protect Jesse and his family, Karlyn, and our family, and all of their friends and followers through the next few months, weeks, days, hours, and minutes.
Thanks to all of you for everything that you have done for them, the power of prayer works and it is shining through.
Lots of love!
I was lying in bed last night thinking about them (as usual) and had so many thoughts that I wanted so badly to share with everyone else that loves them as much as I do. My thoughts are stemmed from spending the last few days (morning, noon, and night) with them in Chicago and getting some good knowledge of what is going on in "their" world. Witnessing some of the hell in the last few days I am utterly amazed at the strength and courage that remain in both of them. They experience SO many new challenges everyday it can be so frustrating and would be easy to want to give up. As I am there watching the both of them I notice them barely bat an eye. As Jesse fights like hell through pain and nausea Karlyn is right there to do whatever she can (sometimes there isn't much she can do). I know these two are the strongest people I have ever known but I have to say THANKS to each and every one of you for helping them recharge day after day. It is your prayers and encouragement that puts fire back in Jesse's eye everyday. Some days it is hard to see but I know it is there. I also wanted to mention and give thanks to God for answering some of our prayers these past few days. We are so thankful to have a continued treatment plan and doctors that sincerely want to help Jesse feel better and continue to fight this fight.
I can see improvement in just the couple days he has been on his new supplements and pain regimen and look forward to seeing him continue with the new health and pain plan. It is a lot to remember to take and do each day but I know Karlyn and Jesse will become EXPERTS!
I pray that God will continue to protect Jesse and his family, Karlyn, and our family, and all of their friends and followers through the next few months, weeks, days, hours, and minutes.
Thanks to all of you for everything that you have done for them, the power of prayer works and it is shining through.
Lots of love!
Tuesday, March 22, 2011 8:34 PM, CDT
Hi. We are resting comfortably in our hotel room after a long day of appointments. We met with the integrated medicine doctor, the nutritionist, a mind and spirit psychologist, and the oncologist. Jesse and I feel good about the plan ahead. He is starting supplements daily that will help him gain some weight (he has lost almost 80 pounds since onset of symptoms last June), gain energy, and suppress the cancer cells (some even "pop" the cancer cells, causing them to die!). The supplements will be combined with a tailored diet plan that will maximize food to also help gain weight, energy, and suppress cancer cells. We are starting mostly with shakes, as we know Jesse can tolerate these, and have a strategy for graduating foods as tolerated.
We also tweaked Jesse’s current pain regimen, as it has not been working well. We are so fortunate that our Regions oncologist is more than happy to work with and implement suggestions from the Block. Most likely, we’ll be starting a trial of a 72-hour patch for pain control, and Jesse and I are looking forward to having a better handle on this. Regions doctor had suggested it before, and the Block suggested it today, so it seems obvious now.
The chemo regimen we started at Regions is the same regimen we will be continuing at Block. The difference is Block administers their chemo differently through a technique they call "chronotherapy,” which they explain further (and better than me) on their website. Basically, they control the timeline the chemo is administered on and do so at the most optimal times, so the chemo is more effective than traditional administration. This chemo is called taxotere and is commonly used following Jesse’s initial three-drug regimen of EOX (epirubicin, oxiloplatin, and Xeloda) because of proven results. I mention this because we asked the doctors today about many of the alternative therapies that have been suggested to us by many of you. His response was that many of these therapies could possibly be utilized a few months from now, if we have no response to the taxotere. However, the Block feels the taxotere alone is the best course of treatment for Jesse right now, as it has more proven results than any other alternatives to date. This will be given in three-week intervals. Since Jesse’s first treatment was at Regions one week ago, we will be coming back to Chicago (actually, Skokie, a suburb of Chicago) for chemo on Wednesday, April 6, and Wednesday, April 27. After third taxotere, they will scan Jesse to assess tumor response.
Of course, we hope to see a clear scan or at least proof of shrinkage, but today was refreshing because everyone we spoke to not only shared that hope but believed they could help Jesse. And they said so. J They added they couldn’t promise anything, but they shared over and over their confidence that Jesse would be feeling better soon. They also shared that our belief and confidence would be half the healing process. The way I see it, we’re half way there!
Just so some of you that don’t have the benefit information don’t have to scroll back to find it, I’m reposting here. Thanks. J
Our amazing friends and family have organized the following two fundraisers:
Sat. April 16 - The Wicked Moose Bar & Grill in Rochester, MN
2 pm to 6 pm
Silent Auction, Food, Raffles, Music
Directions on their website: www.wickedmoosebarandgrill.com
If you have any questions or items to donate or anything at all, please contact Kayla at kaylasmith_17@yahoo.com or Kortney at kortney_nicole@yahoo.com
Sat. April 23 - The Dover Fire Hall in Dover, MN
BREW FEST: 7 pm to midnight
221 N Chatfield St.
Beer, Food, Music, Dance, Lots of door prizes
If you have any questions or contributions for this event, please contact Joe Loftus at 507-398-3716 or joseph.loftus@dhs.gov
Jesse and I are overwhelmed by all of the generosity you all have offered. The organizers of these events have all your answers and information, so please contact them if you have questions.
Sat. April 16 - The Wicked Moose Bar & Grill in Rochester, MN
2 pm to 6 pm
Silent Auction, Food, Raffles, Music
Directions on their website: www.wickedmoosebarandgrill.com
If you have any questions or items to donate or anything at all, please contact Kayla at kaylasmith_17@yahoo.com or Kortney at kortney_nicole@yahoo.com
Sat. April 23 - The Dover Fire Hall in Dover, MN
BREW FEST: 7 pm to midnight
221 N Chatfield St.
Beer, Food, Music, Dance, Lots of door prizes
If you have any questions or contributions for this event, please contact Joe Loftus at 507-398-3716 or joseph.loftus@dhs.gov
Jesse and I are overwhelmed by all of the generosity you all have offered. The organizers of these events have all your answers and information, so please contact them if you have questions.
Monday, March 21, 2011 3:35 PM, CDT
Hello from the backseat of Dawn's minivan somewhere past Wisconsin Dells! Dawn got us through our first stretch all the way to WI Dells, where we stopped for some food at Perkins, hoping they would have some soft options for Jesse. Unfortunatley, the pain was stronger this morning, and we've been having some trouble getting Jesse comfortable. He didn't last long in Perkins, but he's enjoying the chocolate shake we picked up for him as I post this. :) Looking forward to arriving, settling in, and relaxing in the hot tub tonight in preparation for our 10 am appointment tomorrow.
Thank you all for the travel well wishes and for checking out the Block! We found out ahead of time that they are ready to expedite a treatment plan for us once one has been put into place. First day will be all testing, but hope to have a diet regimen and a chemo plan by tomorrow night. Will keep you posted.
We had a great weekend, and the most memorable day was a visit from eight of Jesse's high school buddies. Well, technically 10 high school friends, as we had two that added to the crew a little later. I'm hearing that everyone went home with sore abs from laughing so much. Listening to all the reminiscing was a treat! We love you guys! Thank you so much... for everything...now and back in the day. :)
Jesse shared with me his new "mantra" the other day, which isn't really a mantra by definition, but a message he wanted to share. First, thank you all for the information you have suggested we look into. Our new request is for help ACTUALLY looking and researching further into all the suggestions that are being shared. Jesse and I have become too overwhelmed to do much of our own research now, and we get disappointed and tired when suggestions made to us of studies and treatments to look into don't even apply to Jesse's illness. We were just thinking, if you hear of something great, innovative, and promising, we want all the details. We can't delve into snippets without informative description. Thank you all for your willingness to help. Will post again soon.
Thank you all for the travel well wishes and for checking out the Block! We found out ahead of time that they are ready to expedite a treatment plan for us once one has been put into place. First day will be all testing, but hope to have a diet regimen and a chemo plan by tomorrow night. Will keep you posted.
We had a great weekend, and the most memorable day was a visit from eight of Jesse's high school buddies. Well, technically 10 high school friends, as we had two that added to the crew a little later. I'm hearing that everyone went home with sore abs from laughing so much. Listening to all the reminiscing was a treat! We love you guys! Thank you so much... for everything...now and back in the day. :)
Jesse shared with me his new "mantra" the other day, which isn't really a mantra by definition, but a message he wanted to share. First, thank you all for the information you have suggested we look into. Our new request is for help ACTUALLY looking and researching further into all the suggestions that are being shared. Jesse and I have become too overwhelmed to do much of our own research now, and we get disappointed and tired when suggestions made to us of studies and treatments to look into don't even apply to Jesse's illness. We were just thinking, if you hear of something great, innovative, and promising, we want all the details. We can't delve into snippets without informative description. Thank you all for your willingness to help. Will post again soon.
Thursday, March 17, 2011 3:12 PM, CDT
Good afternoon everyone, i am glad to be finally providing an update of what is going on. I think Karlyn did a good job of filling in the blanks of the weekend and why a few days of hospitalization were required along with postponing chemo. Weekends and days like these are just the beginning as the cancer in my body attempts to take hold and interfer with my normal function. But we are on a strick regimen to try to curb those affects and keep them under control while continuing treatment to fight back a little on our own.
I have my friends and visitors scheduled over the weekend who I am excited to see and talk to. Then Monday we are headed to Block Center in Chicago for a consultation. We are planning to stay a few additional days, so if I like the proposed treatment plan I can get started right away. If you have not checked out their website, I encourage you to do so. This is the next step in treating the whole cancer-body connecton. I believe everything is interconnected and well being must be nourished from all fronts.
Many great friends have take their time to set up several benefits on my behalf of the coming weeks. Please keep and eye out for them, I hope you can attend. Details are currently available on Facebook, but I will see if Karlyn will post some more information here, along with the benefit account that has been set up if you are not able to attend one of the events.
There are so many decisions needing to be made and they are honestly getting harder for me to concentrate on. I am truly blessed by the people around me and roles they have been will to take on so that I can rest.
I will not lie, we have a difficult, uncharted road ahead but your strength and support keeps me moving forward. There is
nothing we cannot achieve together. As always, I love you all.
I have my friends and visitors scheduled over the weekend who I am excited to see and talk to. Then Monday we are headed to Block Center in Chicago for a consultation. We are planning to stay a few additional days, so if I like the proposed treatment plan I can get started right away. If you have not checked out their website, I encourage you to do so. This is the next step in treating the whole cancer-body connecton. I believe everything is interconnected and well being must be nourished from all fronts.
Many great friends have take their time to set up several benefits on my behalf of the coming weeks. Please keep and eye out for them, I hope you can attend. Details are currently available on Facebook, but I will see if Karlyn will post some more information here, along with the benefit account that has been set up if you are not able to attend one of the events.
There are so many decisions needing to be made and they are honestly getting harder for me to concentrate on. I am truly blessed by the people around me and roles they have been will to take on so that I can rest.
I will not lie, we have a difficult, uncharted road ahead but your strength and support keeps me moving forward. There is
nothing we cannot achieve together. As always, I love you all.
Wednesday, March 16, 2011 8:48 AM, CDT
It is a better morning after a restless night. No pain! Thank you, God! Which means the narcotic decrease is going well. We both slept crappy for two reasons: The CPA turned on Jesse's heart monitor and left it on all night instead of shutting it off when he was done taking vitals. For those of you not familiar with them, they beap. A LOT. And they beap even more when you disconnect them from the patient, which we had to do almost every hour last night because Jesse had to pee that often. This is the second reason we were up a lot. It's a good reason, so I'm hoping we will get some naps in today. I asked the nurse to check on backing off on the IV fluids, so Jesse wouldn't have to urinate so much.
We are slotted for chemo this morning, for sure this time. Jesse has been keeping food down fabulously, which has been rewarding to me. That and less narcotics is making him more like himself. We are on the right path this morning to get out of here tomorrow or Friday! Just have to see how chemo goes. Will post again soon, of course. :)
We are slotted for chemo this morning, for sure this time. Jesse has been keeping food down fabulously, which has been rewarding to me. That and less narcotics is making him more like himself. We are on the right path this morning to get out of here tomorrow or Friday! Just have to see how chemo goes. Will post again soon, of course. :)
Tuesday, March 15, 2011 6:55 PM, CDT
Hello, all. Endoscopy and colonoscopy went well enough this morning. They decided the one blockage was not narrow enough to stent, so that treatment plan is no longer. The nausea and vomiting continue to be a non-issue through today, which was the main reason the scoping was done in the first place. The doctors feel that the extensive narcotics, lack of exercise, and limited food intake have caused Jesse's GI system to slow way down and "sleep" almost. They suggested cutting back pain meds, and moving and eating as tolerated. Liquids to start, but the doctor mentioned Jesse may be more comfortable just eating liquids from now on.
They took off another 4.3 L of excess fluid today. I pray this helps us get things going with much less discomfort for Jesse. Again, this fluid will continue to recur, but I hope not as fast, once we get him off IV fluids. Will be off fluids once we continue to keep food down, and so we wait and see. Today, Jesse drank and kept down chocolate Carnation instant breakfast without difficulty. The doctors are keeping him on anti-nausea and laxative regimen to help the process.
We had a visit today from a very good friend of Jesse's who went to ministry school and is a pastor. He and his family have shared their spirituality and helped develop communities in hardship all over the world. Jesse went to high school with him and stood as groomsman in their wedding almost 15 years ago. His visit today happened to be during one of the doctor visits. This doctor is our new hospitalist. The hospitalists are on one week at a time, and today was switch over from our first hospitalist to him. This doctor wanted to be sure in his first meeting with us that we were fully aware of Jesse's prognosis. Although Jesse and I are, it nevers gets easier to hear that statstics show a 2% chance of living longer than three months from Jesse's current stage. It also does not get easier to type, my hands are shaking. Having Jesse's friend here during that conversation was comforting. He happens to be here in MN after several years in Africa and an upcoming move to Haiti planned in June. This timing is not a coincidence to me. I am so grateful God reunited Jesse and his friend today.
They took off another 4.3 L of excess fluid today. I pray this helps us get things going with much less discomfort for Jesse. Again, this fluid will continue to recur, but I hope not as fast, once we get him off IV fluids. Will be off fluids once we continue to keep food down, and so we wait and see. Today, Jesse drank and kept down chocolate Carnation instant breakfast without difficulty. The doctors are keeping him on anti-nausea and laxative regimen to help the process.
We had a visit today from a very good friend of Jesse's who went to ministry school and is a pastor. He and his family have shared their spirituality and helped develop communities in hardship all over the world. Jesse went to high school with him and stood as groomsman in their wedding almost 15 years ago. His visit today happened to be during one of the doctor visits. This doctor is our new hospitalist. The hospitalists are on one week at a time, and today was switch over from our first hospitalist to him. This doctor wanted to be sure in his first meeting with us that we were fully aware of Jesse's prognosis. Although Jesse and I are, it nevers gets easier to hear that statstics show a 2% chance of living longer than three months from Jesse's current stage. It also does not get easier to type, my hands are shaking. Having Jesse's friend here during that conversation was comforting. He happens to be here in MN after several years in Africa and an upcoming move to Haiti planned in June. This timing is not a coincidence to me. I am so grateful God reunited Jesse and his friend today.
Tuesday, March 15, 2011 10:28 AM, CDT
Jesse is going for endoscopy and colonoscopy today. The doctor that can place any stenting that might be needed is still not here until tomorrow, so they will look today to assess the blockages and whether stenting can help. Again, the only narrowing they think they can see on scans and xray is near the rectum. They don't see any narrowing near the stomach on scan/xray, but they are going to check the stomach by endoscopy today to be sure, since it is the problem area. If they can see a narrowing starting to begin, they are hoping to stent there as well to prolong normal stomach function. We will also be pulling the reaccumulated fluid off today. I hope this helps. The pain meds have made Jesse very different. It is similar to being drunk, but he is forgetting things and having trouble understanding things. I really hope his pain subsides, so he can stop taking all the narcotics. If you get a call or message from Jesse that doesn't make sense, that is why! I'm glad, of course, that he is not feeling as much pain his way. They are taking him to Endoscopy now!
Monday, March 14, 2011 7:15 PM, CDT
Man...No chemo tomorrow. Apparently after thinking about it, our oncologist decided it would be better to wait until after endoscopy and colonoscopy with possible stenting, as it is an invasive procedure. The risks only increase when white count is down from chemo. Makes sense, but not any less disheartening. So hopefully chemo thurs or fri this week.
The pain has increased a bit, as Jesse is asking for pain meds more often. The nausea is still present, but he has not vomited today. We and the docs have mixed feelings about eating. One said it was fine for tonight as tolerated, one said nothing but ice chips to give the whole GI system a rest. While resting makes sense, Jesse's strength deteriorates every hour it seems. Going to just proceed as Jesse feels.
Right now, he is clicking the remote trying to find something to watch. He is very out of it and keeps falling asleep mid-clicking. Right now, we are stuck on a Spanish channel...I have to go, so I can take that clicker away! :)
The pain has increased a bit, as Jesse is asking for pain meds more often. The nausea is still present, but he has not vomited today. We and the docs have mixed feelings about eating. One said it was fine for tonight as tolerated, one said nothing but ice chips to give the whole GI system a rest. While resting makes sense, Jesse's strength deteriorates every hour it seems. Going to just proceed as Jesse feels.
Right now, he is clicking the remote trying to find something to watch. He is very out of it and keeps falling asleep mid-clicking. Right now, we are stuck on a Spanish channel...I have to go, so I can take that clicker away! :)
Monday, March 14, 2011 4:45 PM, CDT
I'm sorry. I meant to add fundraiser information sooner. Our amazing friends and family have organized the following two fundraisers:
Sat. April 16 - The Wicked Moose Bar & Grill in Rochester, MN
2 pm to 6 pm
Silent Auction, Food, Raffles, Music
Directions on their website: www.wickedmoosebarandgrill.com
If you have any questions or items to donate or anything at all, please contact Kayla at kaylasmith_17@yahoo.com or Kortney at kortney_nicole@yahoo.com
Sat. April 23 - The Dover Fire Hall in Dover, MN
BREW FEST: 7 pm to midnight
221 N Chatfield St.
Beer, Food, Music, Dance, Lots of door prizes
If you have any questions or contributions for this event, please contact Joe Loftus at 507-398-3716 or joseph.loftus@dhs.gov
Jesse and I are overwhelmed by all of the generosity you all have offered. The organizers of these events have all your answers and information, so please contact them if you have questions. Thank you all so much.
Sat. April 16 - The Wicked Moose Bar & Grill in Rochester, MN
2 pm to 6 pm
Silent Auction, Food, Raffles, Music
Directions on their website: www.wickedmoosebarandgrill.com
If you have any questions or items to donate or anything at all, please contact Kayla at kaylasmith_17@yahoo.com or Kortney at kortney_nicole@yahoo.com
Sat. April 23 - The Dover Fire Hall in Dover, MN
BREW FEST: 7 pm to midnight
221 N Chatfield St.
Beer, Food, Music, Dance, Lots of door prizes
If you have any questions or contributions for this event, please contact Joe Loftus at 507-398-3716 or joseph.loftus@dhs.gov
Jesse and I are overwhelmed by all of the generosity you all have offered. The organizers of these events have all your answers and information, so please contact them if you have questions. Thank you all so much.
Monday, March 14, 2011 4:34 PM, CDT
Finally some news I'm a little bit excited to share...chemo tomorrow! Our oncologist just came up to touch base, and he thinks we need to give it a try to kill off some of these cancer cells causing all this trouble. At the very least slow them down, this stuff is so fast. :( Anyway, we will be able to keep Jesse more comfortable here for chemo anyway, and we weren't doing anything else tomorrow but waiting! Keep those prayers coming, we are fighting tomorrow! Love you all.
Monday, March 14, 2011 2:32 PM, CDT
Okay. They took Jesse earlier for an ultrasound, not a CT. The fluid has built back up to what they call a "moderate" level, but reassure us that level is currently less than the 4.6 L from Friday. Nonetheless, they have offered to draw off the fluid again when the comfort level starts to be compromised. Jesse is still pretty comfortable. They just brought the next dose of anti-nausea meds. After they get a minute to kick in, we may take a little walk around the ward.
GI finally made an appearance, and they feel endoscopy AND colonoscopy would be best. They can see the signs of obstruction but are confident since SOME things are still moving through (gas, bowels, urine), it must only be a partial obstruction. They sound confident that they should be able to stent or dilate this obstruction (just a couple feet above the rectum). As well, if an obstruction is potentially starting near the stomach, they can stent that preventatively also. Unfortunately, the only GI staff "comfortable" to do the procedure are not here today, and they hope they can do this for Jesse on Wednesday. We will be here until then for sure.
Of course all this is caused by the cancer. The cancer cells push on the intestines, which causes them to narrow. The cancer cells cause the fluid build up, which adds to the pushing. Its frustrating. We can't slow it down with chemo until Jesse starts to feel better.
In the meantime, Jesse is allowed back on food as he can tolerate it. Some things slip down, as I mentioned breakfast stayed down today, but we have to be careful not to overdo it, or it all comes back up, and thats definitely more miserable. We'll be continuing to try small amounts throughout the days until Jesse has to stop eating and drinking altogether in preparation for the procedure we hope to have Wednesday.
Visitors in the hospital have included our family and closest friends, but its hard to know how Jesse will be feeling at any given time. We'd love to see anyone who wants to visit Jesse. Please let he or I know if you are planning to, so we can try to anticipate the best time to visit. Thank you.
GI finally made an appearance, and they feel endoscopy AND colonoscopy would be best. They can see the signs of obstruction but are confident since SOME things are still moving through (gas, bowels, urine), it must only be a partial obstruction. They sound confident that they should be able to stent or dilate this obstruction (just a couple feet above the rectum). As well, if an obstruction is potentially starting near the stomach, they can stent that preventatively also. Unfortunately, the only GI staff "comfortable" to do the procedure are not here today, and they hope they can do this for Jesse on Wednesday. We will be here until then for sure.
Of course all this is caused by the cancer. The cancer cells push on the intestines, which causes them to narrow. The cancer cells cause the fluid build up, which adds to the pushing. Its frustrating. We can't slow it down with chemo until Jesse starts to feel better.
In the meantime, Jesse is allowed back on food as he can tolerate it. Some things slip down, as I mentioned breakfast stayed down today, but we have to be careful not to overdo it, or it all comes back up, and thats definitely more miserable. We'll be continuing to try small amounts throughout the days until Jesse has to stop eating and drinking altogether in preparation for the procedure we hope to have Wednesday.
Visitors in the hospital have included our family and closest friends, but its hard to know how Jesse will be feeling at any given time. We'd love to see anyone who wants to visit Jesse. Please let he or I know if you are planning to, so we can try to anticipate the best time to visit. Thank you.
Monday, March 14, 2011 11:45 AM, CDT
Doing a little better today. Still pushing pain meds and anti-nausea meds, but unlike the haze of yesterday, Jesse seems more alert so far today. We have been told no fluids or food for Jesse until another CT scan scheduled for today. Time? Who knows! Nothing happens fast enough here for my standards for the man I love! Hopefully soon. Jesse has kept down a few bites of fruit and oatmeal for breakfast so far today. He took another shower, which went well, and the nurse feels they should be coming to take him for the scan soon enough that they have kept the IV unhooked since he finished his shower...aha! There here :) More later...
Sunday, March 13, 2011 11:02 AM, CDT
Quick update. We will be staying in the hospital today. Jesse is back on IV fluids and trying a combo drug for nausea and anxiety after inability to keep down anything and some uneasy, restless feelings all morning. He is resting comfortably now from this med so far. Pain is still a non-issue. :) The doctor is running labs and a stomach xray to look for any abnormalities that could be contributing to the nausea and vomiting. Our palliative doc was also back to check on us and is going to start Jesse on a med that can help alter the stomach's abillity to contract and digest, which he hopes will also help Jesse eat on his own. The cancer has affected the normal functions of the stomach, and this doc thinks this med could help. I'm cautiuosly optimistic, as always.
I wanted to mention sooner that anyone who wants to visit us and see Jesse is welcome to our house anytime. We are typically only away for appointments, and we always post those dates and times, so any other time is usually fine for a visit. Feel free to email either of us anytime as well to coordinate a visit or just say hi. Jbrew60@hotmail.com or karlynsmith@hotmail.com.
I wanted to mention sooner that anyone who wants to visit us and see Jesse is welcome to our house anytime. We are typically only away for appointments, and we always post those dates and times, so any other time is usually fine for a visit. Feel free to email either of us anytime as well to coordinate a visit or just say hi. Jbrew60@hotmail.com or karlynsmith@hotmail.com.
Sunday, March 13, 2011 8:38 AM, CDT
Still in the hospital. We have moved past our initial issue for now, which was the constipation and the pain associated with that. Our newest challenge has been the nausea and vomiting. We need to get food in and keep it down to go home. The anti-nausea meds have been hit and miss through this. My guess is that his stomach just needs to be reacclamated to food after not having anything to eat for days. I thank God the pain is relieved for now. One more hurdle, and we hope to be out of here today.
Saturday, March 12, 2011 1:48 PM, CST
Jesse is trying to rest again. We finally had some success this morning around 9 with bowel movement, but not all of it. Jesse was feeling significantly better while waiting for lunch to arrive. The hospital doctor from last night came to tell us he wants to see Jesse eat, move more bowel, and wean from iv pain meds back to his pill form. He had a little lunch and was doing okay initially, but then that nasty nausea reared its ugly head. The nurse brought anti-nausea meds right away, and now he is resting.
The pain seems to be staying controlled now for the last few hours on the pill alone, so that is good. To get home tonight, he will have to keep eating and keep moving those bowels! It seems the worst pain was associated with the fluid and bowel backup combined, so I pray it stays under control now that we are making some headway.
The hospital doctor also sent a palliative doctor to speak with us. For those of you who don't know the term, its a pain control and comfort only doctor. He left some booklets that I am not looking forward to reading. I get the reality of what kind of timeline we are dealing with, but man it still seems too early for that stuff! I don't want to be unrealistically optimistic, but I believe there is a new outlook on our situation waiting for us at BLOCK Center in Chicago. I pray Jesse feels better real soon, so we can get there! I also have confidence in chemo next week to help him feel better between treatments. The first chemo did wonders for his appetite and energy once he overcame that first week. I miss those days and am anxious to have them again. I just want Jesse to feel better. As always, thank you all for your continued faith, love, and support.
The pain seems to be staying controlled now for the last few hours on the pill alone, so that is good. To get home tonight, he will have to keep eating and keep moving those bowels! It seems the worst pain was associated with the fluid and bowel backup combined, so I pray it stays under control now that we are making some headway.
The hospital doctor also sent a palliative doctor to speak with us. For those of you who don't know the term, its a pain control and comfort only doctor. He left some booklets that I am not looking forward to reading. I get the reality of what kind of timeline we are dealing with, but man it still seems too early for that stuff! I don't want to be unrealistically optimistic, but I believe there is a new outlook on our situation waiting for us at BLOCK Center in Chicago. I pray Jesse feels better real soon, so we can get there! I also have confidence in chemo next week to help him feel better between treatments. The first chemo did wonders for his appetite and energy once he overcame that first week. I miss those days and am anxious to have them again. I just want Jesse to feel better. As always, thank you all for your continued faith, love, and support.
Saturday, March 12, 2011 9:02 AM, CST
Morning. Not a whole lot of new info to report, but I feel like updating a little something, as I feel so helpless just sitting at Jesses bedside. Still no bowel movement, and it is causing Jesse severe pain. He did not sleep last night. The hospital staff continue with their best efforts. They have Jesse on pain meds every two hours, and initially they work great, but they wear off at that two-hour mark. Sometimes if feels like forever before they respond to that nurse call button. Lots more oral laxatives, suppositories, and enemas with basically no result. They still have a few things they have not tried, so one of them has got to do the trick! Jesse is resting comfortably now having just received pain med dose. I imagine we will be here awhile and our inpatient doc told us last night that he put in a few consults today to help put together a long-term plan. Will post after we have seen them and once we are discharged. Thanks and love you all.
Friday, March 11, 2011 7:17 PM, CST
Hi, everyone, Karlyn here. I am updating you all from my new Evo shift phone. Jesse and I got matching ones from Sprint just yesterday, so bear with me. :) I believe the last update mentioned we were slotted for chemo today...Change in plan. I am updating you all from Jesses hospital bedside. :( Hopefully, we will be out of here tomorrow.
When we arrived for chemo today, Jesse was miserable from lack of bowel movement for three days and lots of bloating. Turns out he had 4.6 liters (4600 cc) of extra fluid they were able to extract from his abdomen. This helped, but we are now waiting to start a new bowel regimen to get him back on track. We have tried every oral laxative and will most likely be undergoing an enema here shortly. The biggest concern that we were able to rule out today was a blockage in the intestine or kinking/pinching off of the intestine, which can happen when the cancer starts to spread throughout the colon. We have avoided this for now, so the bowel regimen should get us back on track to start the new chemo treatment early next week.
As Jesse mentioned in his last post, this new chemo is our oncologists last effort to merely slow the cancer. We have an appointment on Tues Mar 22 at the BLOCK Center in Chicago. They offer an integrated approach to cancer treatment that Jesse and I are anxious to try. We will keep you all posted on that as well as everything else, of course.
Jesse and I are overwhelmingly touched by all the offers to help us financially. We are so blessed to have family and friends like you. We will pass along the details of several benefits currently underway and want to thank each of you for the donations you have already made to our benefit account. We love you so much.
When we arrived for chemo today, Jesse was miserable from lack of bowel movement for three days and lots of bloating. Turns out he had 4.6 liters (4600 cc) of extra fluid they were able to extract from his abdomen. This helped, but we are now waiting to start a new bowel regimen to get him back on track. We have tried every oral laxative and will most likely be undergoing an enema here shortly. The biggest concern that we were able to rule out today was a blockage in the intestine or kinking/pinching off of the intestine, which can happen when the cancer starts to spread throughout the colon. We have avoided this for now, so the bowel regimen should get us back on track to start the new chemo treatment early next week.
As Jesse mentioned in his last post, this new chemo is our oncologists last effort to merely slow the cancer. We have an appointment on Tues Mar 22 at the BLOCK Center in Chicago. They offer an integrated approach to cancer treatment that Jesse and I are anxious to try. We will keep you all posted on that as well as everything else, of course.
Jesse and I are overwhelmingly touched by all the offers to help us financially. We are so blessed to have family and friends like you. We will pass along the details of several benefits currently underway and want to thank each of you for the donations you have already made to our benefit account. We love you so much.
Tuesday, March 8, 2011 6:48 PM, CST
This is shaping up to be the most difficult entry I have written and I have not even started. There is no easy way to explain my current diagnosis, other than to just say it. My stomach cancer has spread to what most medical establishments consider incurable. This cancer has not responded to any treatment thus far, even spreading while undergoing the previous 3 drug chemo regimen. This was of course difficult news to hear, even though this possibility was always in the back of my mind. I have always focused all of my energy on a positive outcome and I will continue to do that as we move forward. As my doctor reiterated, none of us know for sure when our time will come and he, of all people, could not predict that. But in terms of how this cancer has progressed so far, if it does not respond to some form of treatment the time frame could be as short as six months, give or take.
Thus you can see the urgency in our pursuing alternative treatments as soon as possible. Regions Hospital has offered an additional chemo treatment option, but they do not believe it will cure my cancer, only hoping it will slow it down. I am not ready to give in to this disease quite yet and Karlyn and I believe we have located an integrated cancer center offering alternatives therapies combined with the traditional medical approach. There are still many arrangements to be made in the coming days, so I will speak more of our plans as they are finalized.
This obviously changes so many things and to tell you honestly we have not figured many of them out. We are starting by focusing on treatment and going from there. Karlyn has exhausted her leave at work and is currently taking unpaid time off so that we can spend this all important time together. Her family has started a benefit account in my name to help with expenses. This information was posted on the guestbook, but I am including it here: ANYONE can go into any Eastwood bank and deposit their donation into the Jesse Brewington Benefit Account. OR
You can send a check payable to: Jesse Brewington Benefit Account and mail it to:
Eastwood Bank
109 South Mantorville Avenue
Kasson, MN 55944
This is admittedly another hard part of the process, but I realize now more than ever that I cannot do everything on my own. I always thought I could, but for once I will admit I was wrong. I am continually humbled by the outpouring of support from so many people. Please continue to believe in miracles, because I do. No words can express my gratitude, but thank you and I love you all.
Monday, March 7, 2011 9:49 AM, CST
Good Morning. It has been a long week of ups and downs recovering from last weeks procedure. The ups are all the family and friends that have turned up to visit, help out around the house, cook a meal or pick up just about anything we needed. I have an amazing group of people following my progress, offering prayers and anything they can do to help. I am truly blessed.
The downs are all the little things you take for granted when you are healthy. I will spare you all the details of the speed bumps I have encountered over the past week, and just say that I am making it through. Nothing is that serious, just annoying when there is already so much going on.
My appointment today got moved back to this afternoon. I was originally double booked with my oncologist, because there is some urgency to get the treatment plan set. I also noticed over the weekend I was scheduled in the Infusion Center, meaning I may have been getting chemo today. Healthpartners has a nice website where I can review my appointments, see test results and send messages direct to my doctors. I wasn't quite sure I would be ready for chemo today, but I was going to hear my doctor out before deciding to wait a few more days. With the change in appointment, I will not be starting chemo today, my doctor had a cancellation and wanted to have more time to spend with me discussing the new treatment plan. It is likely I will start chemo again sometime this week.
I know for sure that Karlyn was happy to have the help and company of everyone who came to visit over the past few days. Being stuck here alone with me would definitely take it toll on anybody. Karlyn wants to be by my side every step of the way, and I would love to have her there. Yet, life goes on outside of my treatment and the chains of the real world are pulling Karlyn back. What we do is live one day at a time, leaving the past where it belongs and focusing on the present moment. A solution to every problem will present itself if you keep your mind focused on this moment so that you can see it coming. I love Karlyn very much and I cannot imagine going through this without her by my side. She alone is the one person I share everything with and I am sure it is a heavy load to carry sometimes. So today I thank her sisters, parents, relatives and friends for the love and support you give to her. Thank you. I love you all.
The downs are all the little things you take for granted when you are healthy. I will spare you all the details of the speed bumps I have encountered over the past week, and just say that I am making it through. Nothing is that serious, just annoying when there is already so much going on.
My appointment today got moved back to this afternoon. I was originally double booked with my oncologist, because there is some urgency to get the treatment plan set. I also noticed over the weekend I was scheduled in the Infusion Center, meaning I may have been getting chemo today. Healthpartners has a nice website where I can review my appointments, see test results and send messages direct to my doctors. I wasn't quite sure I would be ready for chemo today, but I was going to hear my doctor out before deciding to wait a few more days. With the change in appointment, I will not be starting chemo today, my doctor had a cancellation and wanted to have more time to spend with me discussing the new treatment plan. It is likely I will start chemo again sometime this week.
I know for sure that Karlyn was happy to have the help and company of everyone who came to visit over the past few days. Being stuck here alone with me would definitely take it toll on anybody. Karlyn wants to be by my side every step of the way, and I would love to have her there. Yet, life goes on outside of my treatment and the chains of the real world are pulling Karlyn back. What we do is live one day at a time, leaving the past where it belongs and focusing on the present moment. A solution to every problem will present itself if you keep your mind focused on this moment so that you can see it coming. I love Karlyn very much and I cannot imagine going through this without her by my side. She alone is the one person I share everything with and I am sure it is a heavy load to carry sometimes. So today I thank her sisters, parents, relatives and friends for the love and support you give to her. Thank you. I love you all.
Friday, March 4, 2011 10:27 AM, CST
Hello everyone, I want to give a few updates to let you know where we stand. I was released from the hospital on Wednesday around noon, and have spent all of that time resting. My mom is babysitting me today, making sure I get up and move around to aid in my recovery. We made some delicious fresh carrot and apple juice this morning with the juicer I borrowed from Deb and Wally, so thank you to them. It was amazingly fresh and gave me an immediate burst of energy. We have lots of fresh fruits and vegetables around thanks to Karlyn, Kayla and Greg making a shopping trip on Wednesday evening. Then Greg made us some excellent veggie fajitas.
I am getting a little better each day, but still relying on the pain medication. As Karlyn reported the cancer has spread to my colon, which has been causing some additional discomfort over the past few weeks. We had hoped that was just inflammation causing the discomfort and digestive issues. We are scheduled to see the oncologist on Monday morning to determine the next course of treatment. We are also researching other alternative medicines now that we know surgery is no longer an option. Yet we continue to fight, bad news takes it toll initially while everyone adjusts, but I think we are getting through that and refocusing on the battle that lays ahead.
I would also like to put my prayers out there for Anita Madery, Karlyn's grandma, who is undergoing open heart surgery today. I pray the procedure is a success and that she is back to her old self in no time.
I feel like I have so much more to say, but I connot find the words right know, so I will have to try again later. Thank you for your continued support and prayers.
I am getting a little better each day, but still relying on the pain medication. As Karlyn reported the cancer has spread to my colon, which has been causing some additional discomfort over the past few weeks. We had hoped that was just inflammation causing the discomfort and digestive issues. We are scheduled to see the oncologist on Monday morning to determine the next course of treatment. We are also researching other alternative medicines now that we know surgery is no longer an option. Yet we continue to fight, bad news takes it toll initially while everyone adjusts, but I think we are getting through that and refocusing on the battle that lays ahead.
I would also like to put my prayers out there for Anita Madery, Karlyn's grandma, who is undergoing open heart surgery today. I pray the procedure is a success and that she is back to her old self in no time.
I feel like I have so much more to say, but I connot find the words right know, so I will have to try again later. Thank you for your continued support and prayers.
Tuesday, March 1, 2011 5:52 PM, CST
Hello. Thank you all for your positivity. That and sitting next to Jesse now have me a littl better composed than earlier. Our oncologist just came to see us. The surgeon had deferred a lot of our questions earlier, so we were anxious to see our oncologist. The biopsies taken will be run against some alternative chemotherapy drugs now to see if there is any response. The doctor says once Jesse's incisions from laparoscopy today heal, he could potentially start a new chemo regimen next week. We're hopeful.
Our oncologist also stated he would send all the latest updates on Jesse's case to the GI oncologist we saw at Mayo back in December. If Mayo has anything to add, suggest, or change, we will be receiving that information.
Jesse is doing well right now. They just gave him liquid foods to try slowly, and he's happy to finally eat today. They have started him on Percocet to offset the pain, and it seems to be keeping it at bay. Our nurse just said he didn't expect Jesse to be pain free at this point, but his pain level is where it should be. The nurse is going to take him for his first walk since Jesse has been awake.
Since laparoscopy recovery is considerably shorter than gastrectomy would have been, Jesse will be discharged tomorrow morning, and we will be heading home to try and manage until next week. I'm hoping to have an appointment date and time with our oncologist before we leave tomorrow morning; that way I know when we will be back to start Plan B.
Jesse is so strong, and all of your comments and text messages just keep bringing him up at this difficult time. We will keep fighting this with your continued support.
Our oncologist also stated he would send all the latest updates on Jesse's case to the GI oncologist we saw at Mayo back in December. If Mayo has anything to add, suggest, or change, we will be receiving that information.
Jesse is doing well right now. They just gave him liquid foods to try slowly, and he's happy to finally eat today. They have started him on Percocet to offset the pain, and it seems to be keeping it at bay. Our nurse just said he didn't expect Jesse to be pain free at this point, but his pain level is where it should be. The nurse is going to take him for his first walk since Jesse has been awake.
Since laparoscopy recovery is considerably shorter than gastrectomy would have been, Jesse will be discharged tomorrow morning, and we will be heading home to try and manage until next week. I'm hoping to have an appointment date and time with our oncologist before we leave tomorrow morning; that way I know when we will be back to start Plan B.
Jesse is so strong, and all of your comments and text messages just keep bringing him up at this difficult time. We will keep fighting this with your continued support.
Tuesday, March 1, 2011 2:57 PM, CST
Just met with the surgeon...No gastrectomy today. :( Cancer has spread to the colon and has worsened in the stomach. I just want you all to know as we find out, but I wish I had better news. It will take them an hour or two to get Jesse comfortable before we can see him. I will post more later. This is all we know for now.
Tuesday, March 1, 2011 1:47 PM, CST
Oops! I meant OR (operating room). No emergency room trips today. Should have proofread better. And thanks to all who have sent text messages! We love you!
Tuesday, March 1, 2011 1:42 PM, CST
Nothing new to report yet...I just know that if Jesse weren't in surgery right now, he'd want you all to know how much all your positive thoughts, prayers, and words mean to us! We are sitting in the Surgery Center Wait Room at Regions in St. Paul, waiting for the next update. Jesse logged into the ER at 12:04 after a 9:45 am arrival today. The surgeon is going to send out a nurse to let us know his thoughts once the laparoscopy has been completed. We'll know at that point if today is going to be six hours plus or much shorter. I will keep you all posted, of course, but again, thank you so much...for everything. I want to give a special shout out to our WONDERFUL neighbors who have made living in MN during wintertime almost effortless and are planning to do everything in their power to make our upcoming wedding in July everything it was meant to be. Thank you Angie, Bret, Luke, Rachel, Yvonne, Fran, Josh, and Jenny.
Friday, February 18, 2011 10:24 AM, CST
Quick update, as I'm on break at work. Surgery is scheduled for Tuesday, March 1. The surgeon will be starting with the laparoscopy to explore and determine if the new area of concern on CT scan is inflammation or more cancer. As long as it is not cancer, the surgeon will proceed with complete removal of Jesse's stomach and placement of a feeding tube into the jejunum (first part of small intestine). I'm happy to report that there is a good possibility, once Jesse recovers from surgery and learns a new way of eating small portions constantly throughout the day, that the feeding tube can be removed. I don't know how far down the road that could be, and I'm sure it depends on his recovery. The doctors can't say enough how people who have this surgery (total gastrectomy) struggle afterwards. Not us! :) The doctors also can't stop saying how healthy Jesse is in every other way. Thats on our side for recovery!
If the new concerning area is more cancer...plan B: Figure out a new, different way to beat it. I don't know what exactly that consists of, and I hope I'll never have to. Most likely more chemo, a different regimen. Possibly radiation, although this has only been mentioned as a means of treatment AFTER surgery, so far. Like Jesse said to me this morning, if this is the case, the grand plan was not for him to lose his stomach at this juncture. I just never thought I'd be hoping for the removal of Jesse's stomach as the best case scenario.
In the meantime, we'll dealing with news, results, and appointments as they come at us. Jesse isn't feeling the best, and I know that stress is playing a part in this. We're thinking the side effects of the pill chemo are playing a big part, and since the doctors have discontinued those for now, Jesse will hopefully experience some relief. He has also taken a great initiative to eating better (since vacation) to help the way he is feeling now as well as to start practicing a new way of eating for the future. Jesse strongly believes he can control so much by controlling his eating habits, and I hope he starts feeling better soon.
I have to keep reminding myself that just because things are going to be different than they were before, doesn't mean they can't be better! Whats so wrong with eating better anyway? I'm so proud and humbled by my fiance`. He's just amazing. He continues to inspire me to be a better person. I'm so looking forward to the honor of sharing my life with him. I'm so lucky, but you all know what I'm talking about! :)
If the new concerning area is more cancer...plan B: Figure out a new, different way to beat it. I don't know what exactly that consists of, and I hope I'll never have to. Most likely more chemo, a different regimen. Possibly radiation, although this has only been mentioned as a means of treatment AFTER surgery, so far. Like Jesse said to me this morning, if this is the case, the grand plan was not for him to lose his stomach at this juncture. I just never thought I'd be hoping for the removal of Jesse's stomach as the best case scenario.
In the meantime, we'll dealing with news, results, and appointments as they come at us. Jesse isn't feeling the best, and I know that stress is playing a part in this. We're thinking the side effects of the pill chemo are playing a big part, and since the doctors have discontinued those for now, Jesse will hopefully experience some relief. He has also taken a great initiative to eating better (since vacation) to help the way he is feeling now as well as to start practicing a new way of eating for the future. Jesse strongly believes he can control so much by controlling his eating habits, and I hope he starts feeling better soon.
I have to keep reminding myself that just because things are going to be different than they were before, doesn't mean they can't be better! Whats so wrong with eating better anyway? I'm so proud and humbled by my fiance`. He's just amazing. He continues to inspire me to be a better person. I'm so looking forward to the honor of sharing my life with him. I'm so lucky, but you all know what I'm talking about! :)
Wednesday, February 16, 2011 8:46 AM, CST
I was SOUND ASLEEP next to Jesse while he was typing that journal entry last night. After crawling into bed at midnight and back out at 5:15 am to get some hours in at work yesterday before the appointment, I was exhausted. After almost 11 hours of sleep, I actually feel like posting an entry today. I don't really have much to add, except that you should have seen Jesse in the Bahamas! He had such a great time. He did an AMAZING job at the wedding ceremony singing and playing guitar. All that dedicated practice time paid off. Jesse doesn't think so, but he also got himself a decent tan in the Bahamas. He looks less like a cancer patient now, to me! :) And he's been feeling so great...I let myself get back into some sort of normalcy and feel a little shredded after yesterday's appointment.
I try to be aware of this disease and the things it may change in our future, but somehow I felt unprepared for yesterday's appointment. It's easy to forget that Jesse is sick, when he's feeling and looking so well! I felt like the doctor rained on our parade, but the news wasn't necessarily all bad. Just a hard slam back to reality, I guess. After Jesse put up such a great fight through the intial chemo battle, I was hoping for more definitive results. I'm learning through this process, however, that there may just be no such thing as "definitive results." Every appointment brings more questions and us coming back for more tests.
The laparoscopy consists of small incisions used to insert a micro-camera to look closer at this so-called "new development" area (my new two least favorite words, by the way). I believe they will snip biopsies if on closer inspection, the area appears cancerous. If the area is indeed inflammation, as we and our oncologist believe, they would like to remove all involvement while Jesse is already under. Jesse hasn't specified this, and I know he doesn't want to scare anyone, but our oncologist has told us that complete removal of the stomach and surrounding lymph nodes is the only surgical option.
Now, Jesse is having the hardest time with these words, "only surgical option." He hates to feel so powerless. With complete removal of the stomach, Jesse would require a feeding tube for life to supplement the nutrients that would not longer be absorbed by the stomach. If there is any other option, we're hoping the surgeon can lay it out for us tomorrow. We'd basically like to know the difference in recurrence percentages with removal of the whole stomach versus just the sick portion. The doctor also mentioned complete removal of the stomach is to avoid a second surgery if the cancer were to spread. The doctor also mentioned Jesse would always eat normally after surgery, his body just wouldn't be able to absorb all the necessary nutrients. The feeding tube could be done at home at night, which would keep it more privately manageable than I had initially thought.
So much to think about...so much more to learn. We can only hope the laparoscopy will give us the answers were looking for and not present more questions and more testing. On a happier note, the lymph node involvement is shrinking! At least something responded, this is a good sign! If the new development is inflammation only, these lymph nodes will be taken out as well.
I'd like to mention separately that the MN State Patrol lost an exceptionally giving, warm, kindhearted, and funny character in Jeff Thorstad, one of Jesse’s fellow dispatch supervisors. He passed away unexpectedly last week, and our thoughts are with his family, friends, and co-workers, as they are going through this difficult time. Rest in peace, Jeff.
I try to be aware of this disease and the things it may change in our future, but somehow I felt unprepared for yesterday's appointment. It's easy to forget that Jesse is sick, when he's feeling and looking so well! I felt like the doctor rained on our parade, but the news wasn't necessarily all bad. Just a hard slam back to reality, I guess. After Jesse put up such a great fight through the intial chemo battle, I was hoping for more definitive results. I'm learning through this process, however, that there may just be no such thing as "definitive results." Every appointment brings more questions and us coming back for more tests.
The laparoscopy consists of small incisions used to insert a micro-camera to look closer at this so-called "new development" area (my new two least favorite words, by the way). I believe they will snip biopsies if on closer inspection, the area appears cancerous. If the area is indeed inflammation, as we and our oncologist believe, they would like to remove all involvement while Jesse is already under. Jesse hasn't specified this, and I know he doesn't want to scare anyone, but our oncologist has told us that complete removal of the stomach and surrounding lymph nodes is the only surgical option.
Now, Jesse is having the hardest time with these words, "only surgical option." He hates to feel so powerless. With complete removal of the stomach, Jesse would require a feeding tube for life to supplement the nutrients that would not longer be absorbed by the stomach. If there is any other option, we're hoping the surgeon can lay it out for us tomorrow. We'd basically like to know the difference in recurrence percentages with removal of the whole stomach versus just the sick portion. The doctor also mentioned complete removal of the stomach is to avoid a second surgery if the cancer were to spread. The doctor also mentioned Jesse would always eat normally after surgery, his body just wouldn't be able to absorb all the necessary nutrients. The feeding tube could be done at home at night, which would keep it more privately manageable than I had initially thought.
So much to think about...so much more to learn. We can only hope the laparoscopy will give us the answers were looking for and not present more questions and more testing. On a happier note, the lymph node involvement is shrinking! At least something responded, this is a good sign! If the new development is inflammation only, these lymph nodes will be taken out as well.
I'd like to mention separately that the MN State Patrol lost an exceptionally giving, warm, kindhearted, and funny character in Jeff Thorstad, one of Jesse’s fellow dispatch supervisors. He passed away unexpectedly last week, and our thoughts are with his family, friends, and co-workers, as they are going through this difficult time. Rest in peace, Jeff.
Tuesday, February 15, 2011 6:27 PM, CST
We made it home from the Bahamas last night around midnight. We had an amazing vacation, but both Karlyn and I were happy to crash in our own bed after a long day of travelling. We are still a bit tired and planning to go to bed early tonight to try and catch up on some sleep. I have so much to say about so many things that have been going on, but I need a bit more time to gather my thoughts about them. Let's just say I have been spinning between many emotions over the past few weeks and today's news is no different.
As most of you know we met with the Doctor today for the results of the scan. The easiest way to explain those results is to say, I have an appointment with a surgeon on Thursday. There were some changes from the initial scan, some good (shrinking of the lymph nodes around the stomach), some the same (no noticable change in stomach), and some new developments (an abnormality near my large intestine). The doctor and I both believe that abnormality is inflamation of the large intenstine based on some other symptoms I have be experiencing. But the only way to know for sure what is going on in there is to explore the abdominal area surgically.
My doctor and I have discussed on several occasions how limited information is from a CT scan. I know this was part of the plan from the beginning and I also know that it is the only way to tell that the cancer is gone. I know that I feel better and if surgery is needed to prove how I am feeling, so be it. Yet, there are many decisions to be made over the next few days, which basically involve the "what ifs" while I am under. If conditions are right to remove what needs to be removed, then that would be the time to do it. Unfortunately I will be unable to discuss with the surgeon what he is seeing, and will be relying on him to make the call.
I promise I will be adding more info over the next couple days. I wanted to get something out tonight to let everyone know where we stand. It is a lot of information for me to absorb, especially when my mind is still on the beach and my body just wants to rest. I love you all and thank you for the prayers. Good night.
As most of you know we met with the Doctor today for the results of the scan. The easiest way to explain those results is to say, I have an appointment with a surgeon on Thursday. There were some changes from the initial scan, some good (shrinking of the lymph nodes around the stomach), some the same (no noticable change in stomach), and some new developments (an abnormality near my large intestine). The doctor and I both believe that abnormality is inflamation of the large intenstine based on some other symptoms I have be experiencing. But the only way to know for sure what is going on in there is to explore the abdominal area surgically.
My doctor and I have discussed on several occasions how limited information is from a CT scan. I know this was part of the plan from the beginning and I also know that it is the only way to tell that the cancer is gone. I know that I feel better and if surgery is needed to prove how I am feeling, so be it. Yet, there are many decisions to be made over the next few days, which basically involve the "what ifs" while I am under. If conditions are right to remove what needs to be removed, then that would be the time to do it. Unfortunately I will be unable to discuss with the surgeon what he is seeing, and will be relying on him to make the call.
I promise I will be adding more info over the next couple days. I wanted to get something out tonight to let everyone know where we stand. It is a lot of information for me to absorb, especially when my mind is still on the beach and my body just wants to rest. I love you all and thank you for the prayers. Good night.
Sunday, January 30, 2011 8:00 AM, CST
I thought it was probably time for an update and maybe rub it in a little more that I am leaving for the Bahamas in less than a week. In case I hadn't mentioned it?
I am doing pretty well this time around, it has been 11 or 12 days I think since my last treatment. I was able to go back to work all week and even attend a conference in St. Cloud on Monday thru Wednesday. It was nice to be out and about amidst people. I have typically been avoiding crowds, not wanting to pick up a cold or anything that my body could not fight off. According to my blood tests just before chemo, all of my counts have stayed within the normal range, so I felt OK getting out there. You still probably will not catch me within 500 yards of a daycare center, but most every other location is fair game.
Karlyn and I continue to work on the wedding planning and things are coming along nicely. We are going up to Craguns in early March to taste some dinner options. My taste buds have been a bit off lately, so who knows what many of you could end up eating. I don't think there is a giant plate of mashed potatoes option, but there are special circumstances so maybe I can talk them into it. Speaking of that our wedding website is up and running at the following location:
www.theknot.com/ourwedding/JesseBrewington&KarlynSmith
Go check it out. If you have your save the date, the website is on there also. Karlyn would love for you to RSVP if you know you are going to be able to make it. And my bank account wouldn't mind the opportunity for additional insight on budget planning.
Karlyn and I are headed across the road for some breakfast at Little Oscars, then I have to start digging through my clothes and see if I can find any shorts that still fit me. Thank you all for the continued thoughts and prayers. Be the Miracle.
I am doing pretty well this time around, it has been 11 or 12 days I think since my last treatment. I was able to go back to work all week and even attend a conference in St. Cloud on Monday thru Wednesday. It was nice to be out and about amidst people. I have typically been avoiding crowds, not wanting to pick up a cold or anything that my body could not fight off. According to my blood tests just before chemo, all of my counts have stayed within the normal range, so I felt OK getting out there. You still probably will not catch me within 500 yards of a daycare center, but most every other location is fair game.
Karlyn and I continue to work on the wedding planning and things are coming along nicely. We are going up to Craguns in early March to taste some dinner options. My taste buds have been a bit off lately, so who knows what many of you could end up eating. I don't think there is a giant plate of mashed potatoes option, but there are special circumstances so maybe I can talk them into it. Speaking of that our wedding website is up and running at the following location:
www.theknot.com/ourwedding/JesseBrewington&KarlynSmith
Go check it out. If you have your save the date, the website is on there also. Karlyn would love for you to RSVP if you know you are going to be able to make it. And my bank account wouldn't mind the opportunity for additional insight on budget planning.
Karlyn and I are headed across the road for some breakfast at Little Oscars, then I have to start digging through my clothes and see if I can find any shorts that still fit me. Thank you all for the continued thoughts and prayers. Be the Miracle.
Friday, January 21, 2011 8:20 AM, CST
Third round of treatment under my belt and still feeling pretty good. Appetite is good, nausea has not been a huge factor and I never really got that zombie like feeling this time. The only different side effects this time around is the hiccups. And wouldn't you know it, if you google "chemo hiccups" you will discover the cause. Apparently one of the anti-nausea meds I am taking is known to cause hiccups, good news being that those who get the hiccups don't suffer from the nausea or vomiting. Unfortunately these hiccups don't respond as well to the typical home remedies and after a half hour of hiccuping, they get a little old. But I still believe they are the lesser of the two evils, so I will deal with it until the end of the day, which is when I stop taking that particular med.
Not really much else to report, Karlyn went back to work today since I am feeling much better this time around. I am very thankful for the support, understanding and flexibility both of us have received from our employers during this time, especially Karlyn's. We are not married quite yet, which can make these types of situations somewhat tricky. All I can say is that I am very grateful I did not have to go through many days over the past few months alone.
I think Karlyn mentioned that the next step would be the CT scan on Feb. 3, then meeting with the doctor when we get back from the Bahamas for the results and determining what is next. No break from the pill form of chemo just yet, I will continue taking that throughout the trip.
I hope everyone has a great weekend, I will talk to you again soon.
Not really much else to report, Karlyn went back to work today since I am feeling much better this time around. I am very thankful for the support, understanding and flexibility both of us have received from our employers during this time, especially Karlyn's. We are not married quite yet, which can make these types of situations somewhat tricky. All I can say is that I am very grateful I did not have to go through many days over the past few months alone.
I think Karlyn mentioned that the next step would be the CT scan on Feb. 3, then meeting with the doctor when we get back from the Bahamas for the results and determining what is next. No break from the pill form of chemo just yet, I will continue taking that throughout the trip.
I hope everyone has a great weekend, I will talk to you again soon.
Wednesday, January 19, 2011 9:26 AM, CST
Happy Wednesday. I must say I am feeling surprisingly good today. I was able to eat a normal breakfast of peanut butter toast and a banana, followed by the 7 pill morning cocktail. I think the pain med is helping and the dose is just about right. It is enough to take the edge off during the most severe waves of pain, yet I can still feel what is going on with my body and recognize when that pain is coming or that I am experiencing something different than normal. I am also not experiencing the level of nausea I had during the first to rounds.
I wanted to mention a bit about the conversation we had with the Doc about the abdominal pain. He pointed out that a handful of patients he has had in the same age group taking the same chemo regimine experience very similar systems as I was describing. All of those patients showed marked improvement from the chemo, that the pain appears to coorispond with the changing of the cancer cells. He added that of course there is no scientific data to support that, but who needs data when I have believers. Now that I have the Doc starting to believe, there is no stopping me.
I think Karlyn and I are going to work on some wedding planning, I think we found a new officiant we want to go with, as the first one did not return our calls or emails, so hopefully we have better luck this time.
Talk to you soon.
I wanted to mention a bit about the conversation we had with the Doc about the abdominal pain. He pointed out that a handful of patients he has had in the same age group taking the same chemo regimine experience very similar systems as I was describing. All of those patients showed marked improvement from the chemo, that the pain appears to coorispond with the changing of the cancer cells. He added that of course there is no scientific data to support that, but who needs data when I have believers. Now that I have the Doc starting to believe, there is no stopping me.
I think Karlyn and I are going to work on some wedding planning, I think we found a new officiant we want to go with, as the first one did not return our calls or emails, so hopefully we have better luck this time.
Talk to you soon.
Tuesday, January 18, 2011 6:29 PM, CST
Hi, all. Quick update. The doctor has Jesse scheduled for a CT scan on Feb. 3 (before we leave) and a sit-down visit to discuss results on Feb. 15 (after we return). This suits us just fine. We also discussed our scary episode with the severe pain the night of the second round of chemo with the doctor. He set Jesse up with a pain med to take preemptively this time around. As I type this, Jesse is doing quite well. We had lasagna for dinner, and so far so good. We wanted you all to have the update on what we know at this point. Jesse will likely update again in the morning, and I'm anxious to sign off because the sweet, darling, love of my life, actually let me pick one of the $5 movies we grabbed yesterday, and I can't wait to watch "Girls Just Wanna Have Fun," with him now. I'm so lucky in so many ways, especially the small ones. :)
Wednesday, January 12, 2011 4:07 PM, CST
Several more good days in a row, though I am feeling a bit more nervous than before about the next round of chemo. At least I am thinking about it more, wondering if there will be a curve ball this time. We scheduled the treatment in the morning instead of the afternoon, hoping the initial wave comes and goes before I try to get some sleep. But who knows, I should probably know better than trying to plan it out. Maybe that is another lesson to learn, live in the moment.
Had a good weekend down in Rochester and Kasson. Enjoyed dinner out, then spent the night at Kayla and Greg's. We could not talk Kayla into skipping class on Saturday, so Karlyn and I went shopping for some new pants. For those of you that have not seen me recently I have lost a couple pounds and I no longer needed to unbutton any of my pants to take them off. It was also starting to look a little funny when I cinched up my belt tight enough for my jeans to stay up, suddenly they were pleated. Despite what Karlyn says, I am by no means wasting away quite yet, though this is the least I have weighed since we have been together. I must have subconsciously been preparing for this over the past few years, knowing the extra pounds would come in handy somehow.
Saturday afternoon and evening we celebrated our final Christmas with Karlyn's parents, sisters, significant others, one baby Brooklyn and 3 spoiled puppies. It was quite the celebration. We dined on steak and crab legs, trying to re-live last Christmas in Florida. On Sunday we had a pre-Bahamas planning party, which of course included more food and I think I saw a Bloody Mary or two.
The rest of the week has just been the usual grind. It is comfortable to be able to slip back into the routine, even just for a few days. You don't need to think too hard about it, you have done it so many times before and made it successfully through the day. Then something wakes up the hamster and it is off and running.
I think Karlyn just got home and I promised I would cook dinner tonight. Fish and baked potato for her, I think I will have the sweet potato fries. Then I have to get some guitar practice in, my first time playing guitar on a beach in the Bahamas is right around the corner. I have heard the price of plane tickets have come down for all you last minute travelers. All you need is a passport and a speedo, see you there.
Had a good weekend down in Rochester and Kasson. Enjoyed dinner out, then spent the night at Kayla and Greg's. We could not talk Kayla into skipping class on Saturday, so Karlyn and I went shopping for some new pants. For those of you that have not seen me recently I have lost a couple pounds and I no longer needed to unbutton any of my pants to take them off. It was also starting to look a little funny when I cinched up my belt tight enough for my jeans to stay up, suddenly they were pleated. Despite what Karlyn says, I am by no means wasting away quite yet, though this is the least I have weighed since we have been together. I must have subconsciously been preparing for this over the past few years, knowing the extra pounds would come in handy somehow.
Saturday afternoon and evening we celebrated our final Christmas with Karlyn's parents, sisters, significant others, one baby Brooklyn and 3 spoiled puppies. It was quite the celebration. We dined on steak and crab legs, trying to re-live last Christmas in Florida. On Sunday we had a pre-Bahamas planning party, which of course included more food and I think I saw a Bloody Mary or two.
The rest of the week has just been the usual grind. It is comfortable to be able to slip back into the routine, even just for a few days. You don't need to think too hard about it, you have done it so many times before and made it successfully through the day. Then something wakes up the hamster and it is off and running.
I think Karlyn just got home and I promised I would cook dinner tonight. Fish and baked potato for her, I think I will have the sweet potato fries. Then I have to get some guitar practice in, my first time playing guitar on a beach in the Bahamas is right around the corner. I have heard the price of plane tickets have come down for all you last minute travelers. All you need is a passport and a speedo, see you there.
Friday, January 7, 2011 4:02 PM, CST
Good afternoon, I hope everyone had a good week and has some down time scheduled for the weekend. I have had a pretty good week. I returned to work on Tuesday, putting in a quality 6 hours, mostly because it took me 2 hours to get physically and mentally prepared to venture out of the house. It would have been very easy to stay home another day, but one day turns into two and little progress is made. Like learning to fly, eventually you just have to jump. Well the jump was worth it, I turned the corner that afternoon. All day I was dreaming of things I was hungry for so I had to make a stop at the grocery store on the way home. When I got home I still had energy to clean up the kitchen, do dishes, make dinner and then do dishes again. Though I will admit dinner was left over Lentil soup and half a sandwich, so don't think I was slaving away in the kitchen. But as long as I don't dive onto the couch until bed time, I feel progress is being made.
Since then each day is better than the last. I have even had energy to get some things done at home that I have been ignoring for months. I guess I did not fully realize how much the symptoms I had been experiencing all this time were causing so much fatigue. Here I thought I was getting old, like Karlyn says, but I'm not and as far as I am concerned never will be. I guess the point I am trying to make is that I feel like a different person in a lot of ways, good ways. I wish I could have gotten here without needing toxic medications pumped into my body, but it is definately a route that makes you perk up and take notice of your life.
So here is to another better than new normal week. Thank you all, so often I feel that it is YOUR energy of love, prayer, support, hope and belief that is carrying me through. I just want to say, thanks for the lift.
Since then each day is better than the last. I have even had energy to get some things done at home that I have been ignoring for months. I guess I did not fully realize how much the symptoms I had been experiencing all this time were causing so much fatigue. Here I thought I was getting old, like Karlyn says, but I'm not and as far as I am concerned never will be. I guess the point I am trying to make is that I feel like a different person in a lot of ways, good ways. I wish I could have gotten here without needing toxic medications pumped into my body, but it is definately a route that makes you perk up and take notice of your life.
So here is to another better than new normal week. Thank you all, so often I feel that it is YOUR energy of love, prayer, support, hope and belief that is carrying me through. I just want to say, thanks for the lift.
Monday, January 3, 2011 6:56 PM, CST
Hi, all. Not too much to report. Jesse continues to improve bit by bit daily, although the improvement continues to be more gradual than the first time around. He also sustained more weight loss with this treatment, but I am continuing all my efforts! Whatever he craves I rush to make for him. He just can never decide. Goofy appetite, but very indecisive. I attribute the indecisiveness to his other symptom of inability to focus on anything. Similar to how he was after the first treatment, so I'm sure that will start to pass with time and his return to work. He wasn't up for work yet today, but is hopeful for tomorrow.
Our New Years was quiet. Jesse was asleep by 8, and I made it to 11:30. We've never really had any past New Years that would be classified as wild and crazy, so it wasn't much different for us, though I used to blame our tame New Years on Jesse's old age. :)
I've started a countdown in the back of my head for the Bahamas. I am very ready to escape reality, which vacations are best known for. My sister and future brother have put amazing effort into creating the wedding of their dreams, and Jesse and I are so honored to be a part of that. We are looking forward to celebrating their marriage.
Jesse wanted me to post an update for you all, but I am struggling with what to say. I find myself summarizing our situation for people that are still just finding out: Third and final round of chemo scheduled for Jan. 18. Would be due for next PET scan three weeks post-chemo, which is when we'll be in the Bahamas, so will get scanned once we get back second week in February. Then we'll know. Clean, small, or unchanged. I wish our doctor was as optimistic as we and all of you are. He only knows how to relay the statistics and the most common outcomes...I know Jesse can beat this! I just hope it is sooner than later, and I wish I knew what to expect. Until then, one day at a time. Next chemo, Jan. 18, 2011. Then, BAHAMAS :)
Our New Years was quiet. Jesse was asleep by 8, and I made it to 11:30. We've never really had any past New Years that would be classified as wild and crazy, so it wasn't much different for us, though I used to blame our tame New Years on Jesse's old age. :)
I've started a countdown in the back of my head for the Bahamas. I am very ready to escape reality, which vacations are best known for. My sister and future brother have put amazing effort into creating the wedding of their dreams, and Jesse and I are so honored to be a part of that. We are looking forward to celebrating their marriage.
Jesse wanted me to post an update for you all, but I am struggling with what to say. I find myself summarizing our situation for people that are still just finding out: Third and final round of chemo scheduled for Jan. 18. Would be due for next PET scan three weeks post-chemo, which is when we'll be in the Bahamas, so will get scanned once we get back second week in February. Then we'll know. Clean, small, or unchanged. I wish our doctor was as optimistic as we and all of you are. He only knows how to relay the statistics and the most common outcomes...I know Jesse can beat this! I just hope it is sooner than later, and I wish I knew what to expect. Until then, one day at a time. Next chemo, Jan. 18, 2011. Then, BAHAMAS :)
Thursday, December 30, 2010 10:16 AM, CST
I just wanted to check in this morning and let everyone know I am doing much better following the events of Tuesday evening. I had been expecting some pain to come eventually that night, but I was not prepared for what was to come. The pain is never localized, it shoots from place to place like I am getting punched and takes my breath away with each strike. I have never felt anything like that in my life and as my body tensed more and more I could not catch my breath. I truly felt like I was drowning, and that something was terribly wrong. Thankfully the pain subsided after several minutes, though it felt like an eternity to Karlyn and I. The first responders and ambulance crew arrived very quickly to check me out. My vitals were quoted and being "textbook normal". My response was that everyone keeps telling me I am completely healthy other than this one little thing. We decided to decline transport and pray that it could not get worse than that. There were several more rounds of pain that night, but nothing that came close to the first.
Wednesday went pretty well, much more like the first time around with no real surprises. Eating continues to be a struggle as nothing is really appetizing at all. I hope that changes sooner than later.
Last night went pretty well also, I slept better than I had the previous two nights, so I hope I have once again started to turn the corner for this round.
I suppose if I have learned something, it is to expect the unexpected. I had hoped I had this thing dialed in, that I was prepared for whatever it could throw at me. We continue to fight the good fight, always trying to stay positive. It tried to bring us down on Tuesday night, but I will not let it win.
That is all I have for know, have a happy and safe New Year.
Wednesday went pretty well, much more like the first time around with no real surprises. Eating continues to be a struggle as nothing is really appetizing at all. I hope that changes sooner than later.
Last night went pretty well also, I slept better than I had the previous two nights, so I hope I have once again started to turn the corner for this round.
I suppose if I have learned something, it is to expect the unexpected. I had hoped I had this thing dialed in, that I was prepared for whatever it could throw at me. We continue to fight the good fight, always trying to stay positive. It tried to bring us down on Tuesday night, but I will not let it win.
That is all I have for know, have a happy and safe New Year.
Wednesday, December 29, 2010 12:07 PM, CST
In the Good News Dept., for Vikings’ fans anyway, we won last night. Unfortunately, our game watching was interrupted last night at about 8:15 pm when Jesse was hit swiftly and unexpectedly by a severe bout of abdominal pain. It brought him to his knees, clutching his chest, and I heard him say he was having trouble breathing. I dialed 911 immediately. While I was still on the phone with the ambulance dispatcher, the pain subsided, so what felt like an eternity actually only occurred in the time span of about 2 minutes. Regardless, they were on their way. We didn’t know if the severe pain would return, and I wanted Jesse’s vitals checked after what he described as a “20” on the pain scale of 1 to 10. So, we had first responders, fire fighters, EMTs, sheriff deputy, and ambulance crew in our living room about 10 minutes later.
Prior to this, as Jesse mentioned, the second round of chemo seemed to be going “faster” than the first, in that the symptoms of cold sensitivity and tingling arrived sooner than the first time. I was hopeful after we had dinner at 6:30 without event. Jesse was due for chemo pills, anti-nausea pills, and Tylenol PM at 8 before we went to bed, but he needs to take his meds with food. He wasn’t in the mood for anything soft, and since food hasn’t been the issue it started out as, I brought him a Cliff protein bar to take his meds with. The severe onset of pain occurred immediately after he swallowed the first bite.
I continue to believe that there is a full-on, all-out war going on inside Jesse’s body, and it breaks my heart that I can’t put in any swings to help fight for our team. I’m sure many of you feel similarly, but please know that everything each and every one of you has done for us makes a difference! The money to ease our stress, the macaroni & cheese and mashed potatoes to ease Jesse’s stomach, the help around the house and removing snow outside, and the thought, prayers, and well wishes you vocalize, text, and post to the site bring us up every time we start to feel down. I am finding this process has so many ups and downs. We were on the up after Jesse’s first treatment, and last night we found a new low, but like I said to my sister Kayla just yesterday, you can only go up from there! I hate this cancer so much, but Jesse and I will come out UP. We will come out ahead. I feel like I could always add more to these posts, but we have all day, all week, all year. We will keep you all posted. Right now, we are settling in for an episode of Cheers, and the new Twilight series move, Eclipse should be in the mailbox. I’m going to check right now. J
Tuesday, December 28, 2010 7:15 PM, CST
Chemo today and everything went well. Karlyn and I are home, I am sitting on the couch and she is making me a delicious dinner. The side effects seemed to kick in a little faster this time and are a bit more noticeable than the first. Nothing that is overwhelming or painful yet though. The nerve sensitivity is more noticeable this time around, with tingling and slight numbness in my fingers which feels like they fell asleep. Cold sensitivity is also back. Had to turn up the heat a little more, I could feel the tingling through my socks on the tile floor. For those who have visited Karlyn and I during the winter, they understand I keep the house a little cold. Others have described it as the frozen tundra, but not anymore.
We spent an excellent Christmas with family in Kasson, Dover, Eyota and Blooming Praire. It was a busy weekend, but worth every minute. We also enjoyed some time with my niece Sienna, she spent Saturday and Sunday night with us. At dinner my grandma Arends prayed that we cherish our time together with family. I think we should all do that. Don’t be in such a hurry, turn off the TV, reconnect and have a conversation with our family members. Seems so simple doesn’t it, but how many of us actually did it. I had a good conversation with my uncle, who is currently in remission, which I should have had a long time ago, cancer or not. Give it a try.
We have been blessed by a number of kind gestures over the past few weeks that have left us at a loss for words to express our thanks. We truly feel blessed to have all of you in our lives and cheering us on. Speaking of cheering (or screaming), Go Vikes! Tuesday, December 21, 2010 6:00 PM, CST
Met with the Doc today to follow-up on the first round of chemo and finalize the plan for the next couple months. Let’s start with the plan. As you know the first treatment of IV chemo was administered on 12/7, with two more treatments to go. Those are scheduled for 12/28 and then again on 1/18. During this time I will continue taking the pill form of chemo twice a day, every day. After the treatment on the 18th, we will then schedule the PET CT scan and another Endoscopy. The endoscopy allows for pictures to be taken of the inside of my stomach and compared to the initial photos taken in November to see if progress was made with chemo. Same idea with the CT, basically a digital image of a radioactive dye that is injected into me and shows nearby organs and lymph nodes to compare with the first scan. With those results in hand, this is how it plays out in my version; “Wow, that is amazing, is the scanner broken, it is all gone.” But if for some reason it is stubborn and does not immediately concede to the forthcoming defeat, a recount may be needed. That is when we start discussing surgery to remove all the remaining cancerous debris. Surgery is then typically followed by another round of chemo, based on what the surgery revealed.
As for how I am feeling, I really could not be better, all things considered. I have been able to eat better in the last week than the previous month prior to chemo. I can say, without a doubt that something is working and even if it is just in my head, I don’t care. I think the hardest part was not knowing, from day to day, after the first treatment if and when I was going to feel better. Now that I know I will feel better after about a week, and that better truly means better, I am ready for the next two treatments. I am definitely much more prepared, especially mentally, than I was the first time around having gained some insight into how my body reacts and what makes me feel better.
As for the Bahamas, that is definite go. Literally, just what the doctor ordered following the first round of chemo. We leave on February 5th and return on February 14th. For all of you making the trip to celebrate Kayla and Greg’s nuptials, I will see you there. I am planning on celebrating one more thing, as I mentioned above and you are welcome to join if you like.
I hope everyone has a safe and happy holiday season. We will be spending Christmas with family in Kasson and Dover-Eyota this weekend and with treatment on the 28th our New Year’s celebration will be at home this year. Thank you for your prayers, support and most importantly your belief in miracles.
Wednesday, December 15, 2010 7:42 PM, CST
Two more days have gone by and I will say they have been the best yet, at least for me. Jaxyn, on the other hand, decided Monday night that he had played second fiddle to his dad for long enough. No more would he whine for mom’s undivided attention only to be ignored. Jaxyn had a fairly severe allergic reaction to something in the house, likely the Christmas tree, sending his mom right into snuggle mode. I tried to counter with some stomach pain of my own, but was denied. We were up several times over the course of the night as Jaxyn would launch into what has been called a reverse sneeze, “honking” as his mom calls it. His tiny little body tenses as he seems to gasp for breath. We gave him some medication that had been previously recommended by the vet, but this time was much worse and the meds did not seem to be helping.
I had decided earlier in the day that I would be returning to work on Tuesday, but not so fast, I was informed I would be taking Jaxyn to the vet first. Fair enough, I could see Karlyn was in no mood to discuss alternatives. Jaxyn was delivered to the vet in Kasson at 8 AM so they could monitor him throughout the day. I am happy to report Jaxyn was returned home the same evening by his Grandpa Justin and is feeling much better. As for me, I had made it that far and decided to continue my journey to work for the remainder of the day, but with strict instructions that I was not allowed to work more than 8 hours. Work went well, I felt good, normalcy had returned.
Today was much the same, a full day at work followed by dinner out with Karlyn at Lucky’s Pub in Mendota. A giant bowl of French Onion soup was just what the doctor ordered. We are now back at home resting comfortably on the couch with our dueling laptops checking email and surfing the web. I did make one decision at dinner, and that is to shave my head tonight. I was holding out because I was unwilling to concede defeat, but I seriously need a haircut now. I could hold out a few more days and have Kayla give me a trim over the weekend, but I am also out of hair product and unwilling to spend money on either when I know it would probably start falling out the very next day. So if anyone would like me to save a lock for them, now is your chance.
As always, the thoughts, prayers and inspiring words remind me every day how blessed I am in this world and thankful for each of you in our life. We will be seeing many of you throughout the holidays and feeling better makes me look forward to it more. My next IV chemo session is not until the 28th, so I have a couple weeks to enjoy with friends and family before round two. I am sure there will be more entries to come before them, I am somewhat enjoying the storytelling process. Karlyn says I should quit my day job and be a “book writer.” Her words, not mine.
Monday, December 13, 2010 4:10 PM, CST
Well a few more days have gone by and I feel there are least times when I feel somewhat normal. I must admit, none of this is really what I had expected. The effects seem so subtle yet often overpowering all at the same time. I have no idea if this makes any sense, but I just feel slow. My body is slow, movement is slow, thinking is slow, and reactions are slow, ability to concentrate, definitely all slow. Even just coming up with the words for the few lines I have written is a challenge. I find myself drifting off into space and having no idea what I was just thinking about. Most of the pain I was having the first few days has drifted away, replaced by very short bursts of abdominal pain that typically occurs an hour or two after taking the daily chemo regimen. There are a few joint pains, body aches, and this specific pain in my jaw when I first start chewing after a period of time. The worst part is that I forget and am surprised by it almost every time. It usually only last for the first bite or two, then goes away, but a few hours later when I eat, it sneaks up on me again. The nausea comes and goes and like everything else, lurks just under the surface waiting for me to do the wrong thing. The wrong thing is often standing up, sitting down, laying down, rolling over, taking a shower, getting dressed, brushing my teeth, etc… You know all those extreme activities I was told to take a break from for a while. Lastly is the fatigue, which is likely caused by a combination of the chemo and not eating enough. I had this grand plan of all these great smoothies and things I would make in my new Ninja blender to keep me energized. All that went right out the window in a tragic twist of fate when I could no longer drink anything cold. As of yet my stomach is unable to fathom the possibility of a room temperature, used to be frozen smoothie. I am not kidding about the mashed potatoes though; I had them for dinner last night and lunch today, even mixing in some corn. All I need is a little gravy and I will be in heaven. I am trying to eat more, but when you live your whole life basically eating food because it tastes good, and much less because it is providing you with your basic nutritional needs, it is hard to change, especially when nothing really tastes that good. Meat is a big ingredient missing for me lately, we all eat it so often, and it is the center of the dinner plate. Unfortunately, in my stomachs weakened state, meat is mostly off the menu or at most a side dish to some delicious veggies. That is basically it; I eat as much boring/healthy food as I can every couple hours, drink lots of warm water and dream about a full box of ice cream sandwiches in the freezer I would love to get my hands on.
I would also like to thank my neighbor Fran, his son Josh and others for taking care of the driveway this weekend, without you Karlyn and I may have not been seen again until spring. I did manage to get outside for a few minutes to help, or get in the way depending who you ask. I moved the cars out of the way and cleared the back deck, which felt like an accomplishment to me. After that I did not move from the couch for quite a while, but eventually I did move again. Thank you guys, I know you helped with several driveways and it may seem simple, but as one who has always tried to help and rarely asked for help, it meant a lot to me.
Well, I think that is all I have for now. Wish me luck tomorrow as I would really love to get out of this house for at least part of the day. I am going to try to venture off to work tomorrow and see what kind of trouble I can cause. I did manage to dig through a few emails today, so at least I will not have an overgrown inbox staring me down. Thank you all for you continued thoughts and prayers.
Saturday, December 11, 2010 7:22 AM, CST
Good morning. I hope everyone in Minnesota has decided to enjoy a quite day indoors, considering the weather conditions. I am comfortably planted on the couch having some breakfast and watching the morning news. Once again, thank you all for your encouraging and well wishing posts, I can not explain what it means to me. I would like to give some special recognition to all State Patrol dispatchers and troopers working today. Thank you for the amazing work you do everyday. I may be crazy, but as a dispatcher, there was nothing I liked better than the challenge of a big snow storm. Keep them all safe today, miss you guys.
As for me, I think the best way to describe how I am feeling, is to say that I am searching for a new normal. Things seem to be getting better, but just like prior to starting chemo, eating continues to be a challenge. On that note, I would also like to thank Mrs. Gerry's for their delicious mashed potatoes, if you have not had them you are definitely missing out. Thanks Justin.
Hopefully, Karlyn and I will be able to get a few things done around the house today. We have lots of little things we can get done including some additional wedding planning, paying a few bills and cleaning and organizing several rooms. Just enough busy work to keep me off the couch for part of the day, but nothing extremely strenuous.
Thanks again for your continued support and encouragement. Talk to you again soon.
As for me, I think the best way to describe how I am feeling, is to say that I am searching for a new normal. Things seem to be getting better, but just like prior to starting chemo, eating continues to be a challenge. On that note, I would also like to thank Mrs. Gerry's for their delicious mashed potatoes, if you have not had them you are definitely missing out. Thanks Justin.
Hopefully, Karlyn and I will be able to get a few things done around the house today. We have lots of little things we can get done including some additional wedding planning, paying a few bills and cleaning and organizing several rooms. Just enough busy work to keep me off the couch for part of the day, but nothing extremely strenuous.
Thanks again for your continued support and encouragement. Talk to you again soon.
Thursday, December 9, 2010 10:55 AM, CST
Morning, everyone. Jesse is upstairs resting comfortably in bed, finally. Thankfully, no nausea or vomiting last night, but the pain kept him awake most of the night. The pain is intermittent, like every hour or two, lasting about 10-15 mins. Once he's awake (and so am I), it takes over an hour to get comfortable again to fall asleep, and then a new bout hits him. Poor guy. He's been taking Tylenol about every six hours, and at 4 am, I got him to take Tylenol PM, which seemed to do the trick! He's been sleeping better since then... until now. Time for breakfast! Post more later.
Wednesday, December 8, 2010 11:49 AM, CST
Quick update--Unfortunately, the anti-nausea medication doesn't seem to be working. I'm thinking the intravenous stuff worked initially, but wore off at about 8:30 last night. We started the anti-nausea pills and Tylenol for pain. He could keep them down for about 90 minutes, then they came back up. I would think 90 mins. should be long enough to absorb some effect from the meds, but they didn't make a difference.
We were up then at 2230, 0030, 0230, 0630, 0830, and got up around 11 this morning. Jesse is relaxing on the couch. We had scrambled eggs with cheese for breakfast, and they are still down as I type this to you! The UPS man just delivered the pill-form chemo, so we're just reading up a bit on that now. I hope there aren't more side effects. I'm taking comfort in the thought that the doctor and nurses told us the beginning is the roughest until they tailor the meds that will help best for Jesse. Also on the upside, we have to check Jesse's temperature every few hours, and that has remained normal!
Like I said to Jesse at some point in the middle of the night, this thing is not going down without a fight, but we're ready to bring it!
We were up then at 2230, 0030, 0230, 0630, 0830, and got up around 11 this morning. Jesse is relaxing on the couch. We had scrambled eggs with cheese for breakfast, and they are still down as I type this to you! The UPS man just delivered the pill-form chemo, so we're just reading up a bit on that now. I hope there aren't more side effects. I'm taking comfort in the thought that the doctor and nurses told us the beginning is the roughest until they tailor the meds that will help best for Jesse. Also on the upside, we have to check Jesse's temperature every few hours, and that has remained normal!
Like I said to Jesse at some point in the middle of the night, this thing is not going down without a fight, but we're ready to bring it!
Tuesday, December 7, 2010 5:55 PM, CST
Hi, everyone! Well, we think chemo went as good as can be expected today. Jesse and I are home resting comfortably, thinking about what we're going to eat for dinner. We're leaning towards a pizza homemade and gifted to us in a care package from our sweet, dear friends Jay and Jes Radniecki! A fantastic convenience, we are so grateful for.
On that note, Jesse is not feeling any nausea as of yet. They gave two anti-nausea meds intravenously prior to chemo, and sent us home with two prescriptions we filled that Jesse is to take over the next three days to keep the nausea at bay. As Jesse put earlier this evening in response to my 70th or 71st time asking if he was feeling okay, "I'm feeling anti-nauseated." ;)
In addition to the anti-nausea meds, Jesse received the two intravenous chemo drugs; one a 20-minute manual injection, the other a two-hour drip. The third, Jesse will start tomorrow, and it is pill form. He will have to swallow four pills in the morning and five pills in the evening everyday. We also learned our upcoming chemo regimen today, which was nice! Jesse will only be receiving intravenous chemo once every three weeks! Okay, I usually try to keep the exclamation points to a minimum, but we decided to mention our upcoming trip booked to the Bahamas the second week in February, and the nurse said we should be able to schedule treatments around it. So we can go! Depending on if Jesse feels up to it.
So far, the only side effect Jesse says he is definitely experiencing is extra sensitivity to cold. They said he might experience this. The most severe effect is breathing in this "wonderful" Minnesota winter air too fast, as it can cause the sensation that his throat is closing up. Fortunately, this is easily avoided by using a scarf or putting his hand over his mouth while breathing outside. Associated with this, he also feels the extra sensitivity in his fingers. He wore gloves tonight but took them off in the car a bit before it was warmed up. He said it felt like his whole hand fell asleep with that tingling/burning feeling, which he didn't like very much. Again, fortunately, it is fairly easily avoided by wearing gloves outside and making me get anything for him he needs out of the freezer! Thankfully, he won't have that problem in the Bahamas either. ;)
We arrived to start at 1:00 today and finished up just a few minutes before 5. The nurse had a little trouble finding a good vein and mentioned having a port-a-cath placed, but agreed to wait and see how it goes next time. After he was started, the hours went by pretty fast. I read a book most of the time. Jesse watched CNN a bit. We noted the irony of Jesse starting his battle with cancer being on the anniversary of Pearl Harbor. Then of course, Mrs. Elizabeth Edwards lost her battle with cancer today. That was depressing! I could tell it didn't bring Jesse down one bit, as he went dancing off to the bathroom singing, "Don't you wish your girlfriend was hot like me." I told him if he didn't stop (because I didn't want the song in my head!), I was going to post it to his website! So that's what he gets. ;-) Staying hydrated is a big part of being at your best for chemo treatments, and we know Jesse did a good job because he probably peed six times during the course of our treatment today!
Let's see...what else? Oh, I want to quick thank my mother for her previous post about my knowing what's best. I've been reminding Jesse all day! He says he wants to talk to you, Mom. ;) Oh, other than our next chemo treatment scheduled for three weeks from today, we are meeting with the doctor before that; two weeks from today to touch base. We plan to bring up the Bahamas again, get the rest of the chemo treatments scheduled, and get the next PET scan scheduled somewhere after Jesse's second treatment to be sure this chemo is working for him. I'm sure we'll post again in the next couple days, and keep you all posted on how Jesse's feeling. We can't thank you enough...all of you following us, thinking of us, supporting us. We love you! Talk to you soon.
On that note, Jesse is not feeling any nausea as of yet. They gave two anti-nausea meds intravenously prior to chemo, and sent us home with two prescriptions we filled that Jesse is to take over the next three days to keep the nausea at bay. As Jesse put earlier this evening in response to my 70th or 71st time asking if he was feeling okay, "I'm feeling anti-nauseated." ;)
In addition to the anti-nausea meds, Jesse received the two intravenous chemo drugs; one a 20-minute manual injection, the other a two-hour drip. The third, Jesse will start tomorrow, and it is pill form. He will have to swallow four pills in the morning and five pills in the evening everyday. We also learned our upcoming chemo regimen today, which was nice! Jesse will only be receiving intravenous chemo once every three weeks! Okay, I usually try to keep the exclamation points to a minimum, but we decided to mention our upcoming trip booked to the Bahamas the second week in February, and the nurse said we should be able to schedule treatments around it. So we can go! Depending on if Jesse feels up to it.
So far, the only side effect Jesse says he is definitely experiencing is extra sensitivity to cold. They said he might experience this. The most severe effect is breathing in this "wonderful" Minnesota winter air too fast, as it can cause the sensation that his throat is closing up. Fortunately, this is easily avoided by using a scarf or putting his hand over his mouth while breathing outside. Associated with this, he also feels the extra sensitivity in his fingers. He wore gloves tonight but took them off in the car a bit before it was warmed up. He said it felt like his whole hand fell asleep with that tingling/burning feeling, which he didn't like very much. Again, fortunately, it is fairly easily avoided by wearing gloves outside and making me get anything for him he needs out of the freezer! Thankfully, he won't have that problem in the Bahamas either. ;)
We arrived to start at 1:00 today and finished up just a few minutes before 5. The nurse had a little trouble finding a good vein and mentioned having a port-a-cath placed, but agreed to wait and see how it goes next time. After he was started, the hours went by pretty fast. I read a book most of the time. Jesse watched CNN a bit. We noted the irony of Jesse starting his battle with cancer being on the anniversary of Pearl Harbor. Then of course, Mrs. Elizabeth Edwards lost her battle with cancer today. That was depressing! I could tell it didn't bring Jesse down one bit, as he went dancing off to the bathroom singing, "Don't you wish your girlfriend was hot like me." I told him if he didn't stop (because I didn't want the song in my head!), I was going to post it to his website! So that's what he gets. ;-) Staying hydrated is a big part of being at your best for chemo treatments, and we know Jesse did a good job because he probably peed six times during the course of our treatment today!
Let's see...what else? Oh, I want to quick thank my mother for her previous post about my knowing what's best. I've been reminding Jesse all day! He says he wants to talk to you, Mom. ;) Oh, other than our next chemo treatment scheduled for three weeks from today, we are meeting with the doctor before that; two weeks from today to touch base. We plan to bring up the Bahamas again, get the rest of the chemo treatments scheduled, and get the next PET scan scheduled somewhere after Jesse's second treatment to be sure this chemo is working for him. I'm sure we'll post again in the next couple days, and keep you all posted on how Jesse's feeling. We can't thank you enough...all of you following us, thinking of us, supporting us. We love you! Talk to you soon.
Friday, December 3, 2010 5:16 PM, CST
Shoot! I just lost my whole first entry. Okay, here we go again...
Hi, everyone. We can't thank you enough for all your positive vibes and reinforcing comments. Keep them coming! As we mentioned in our last update, we had our second opinion appointment at Mayo today. It started off a little rough when the lady at the business office window asked for $5000 deposit to allow us to be seen today. Yikes! Thankfully, we talked her down with a little explanation, and we made contact with Jesse's insurance provider who covered another chunk of that for us.
Once we saw the doctor, he told us he was in agreement with the treatment plan that our Regions doctor has laid out for us. He said he would start Jesse on the same combination of chemotherapy drugs, so on Tuesday, Jesse will start his first cycle of chemotherapy. He's been put on a three-drug cocktail; two intravenous and one in pill form. From what we understand, Jesse will receive a treatment cycle once weekly for three consecutive weeks. He'll have the fourth week off and start another three-week course following. After his third month of treatment, the doctors will give Jesse another PET scan to see if the cancer has shrunk. If not, we try a different combination of chemotherapy drugs. If so, we start talking about surgery. Until then, its hard to prepare for much else, so we're focusing on the chemo and making sure Jesse is as comfortable as possible through it.
Jesse and I feel so strongly that the power of thought or belief is over half this battle. We hope the cancer will be so far gone at that next scan; they won't even be able to see it! Thank you for continuing to hope, pray, love, and most importanly, thank you for believing.
Thankfully, the last few days have been better for Jesse. After taking some of the nutritionist's suggestions and recommendations, Jesse is physically feeling better, which is so wonderful. Less pain is good! Also, after our appointment today, we managed to track down a Ninja Master Prep. For those of you who don't know this, we can now blend, chop, and crush just about anything! Including fingers! Don't worry, we had a band-aid readily available after the mishap (thanks Kally & Kayla!), and obviously, I'd only repeat the story here because it was more funny than anything. ;) Anyway, I'm confident Jesse's nutritionist will be very proud of our investment, and I fully support anything that makes him feel better.
Well, we'll most likely be back in touch Tuesday with how things went. Jesse's spirits are high, and I'm so proud of him for that. I also want to thank you all, as you are a large part of that for him. We're taking one day at a time, and that helps us get by for now.
Hi, everyone. We can't thank you enough for all your positive vibes and reinforcing comments. Keep them coming! As we mentioned in our last update, we had our second opinion appointment at Mayo today. It started off a little rough when the lady at the business office window asked for $5000 deposit to allow us to be seen today. Yikes! Thankfully, we talked her down with a little explanation, and we made contact with Jesse's insurance provider who covered another chunk of that for us.
Once we saw the doctor, he told us he was in agreement with the treatment plan that our Regions doctor has laid out for us. He said he would start Jesse on the same combination of chemotherapy drugs, so on Tuesday, Jesse will start his first cycle of chemotherapy. He's been put on a three-drug cocktail; two intravenous and one in pill form. From what we understand, Jesse will receive a treatment cycle once weekly for three consecutive weeks. He'll have the fourth week off and start another three-week course following. After his third month of treatment, the doctors will give Jesse another PET scan to see if the cancer has shrunk. If not, we try a different combination of chemotherapy drugs. If so, we start talking about surgery. Until then, its hard to prepare for much else, so we're focusing on the chemo and making sure Jesse is as comfortable as possible through it.
Jesse and I feel so strongly that the power of thought or belief is over half this battle. We hope the cancer will be so far gone at that next scan; they won't even be able to see it! Thank you for continuing to hope, pray, love, and most importanly, thank you for believing.
Thankfully, the last few days have been better for Jesse. After taking some of the nutritionist's suggestions and recommendations, Jesse is physically feeling better, which is so wonderful. Less pain is good! Also, after our appointment today, we managed to track down a Ninja Master Prep. For those of you who don't know this, we can now blend, chop, and crush just about anything! Including fingers! Don't worry, we had a band-aid readily available after the mishap (thanks Kally & Kayla!), and obviously, I'd only repeat the story here because it was more funny than anything. ;) Anyway, I'm confident Jesse's nutritionist will be very proud of our investment, and I fully support anything that makes him feel better.
Well, we'll most likely be back in touch Tuesday with how things went. Jesse's spirits are high, and I'm so proud of him for that. I also want to thank you all, as you are a large part of that for him. We're taking one day at a time, and that helps us get by for now.
Monday, November 29, 2010 4:53 PM, CST
We just got home from today's appointments and I would like to first thank everyone for their thoughts, prayers and words of encouragement. Over the past few days, when I find myself struggling to keep positive, I re-read what everyone has written, so thank you.
Karlyn and I met with the doctor first to discuss the test results of the PET scan. Good news is that the cancer has not spread outside of my stomach and the surrounding lymph nodes. That basically means they would classify it between Stage 2 and 3. We had a long discussion with the doctor about treatment options and chemo is the first step with a re-evaluation prior to surgery. We were initially set to begin chemo tomorrow, but we have decided to hold off for one more week for 2 reasons. First, now that I have all my test results, I have an appointment for another opinion at Mayo on Friday. Second, Karlyn and I have decided to make arraingements to preserve my fertility, which was recomended prior to starting chemo.
I need to mention that I have great confidence in my doctor at Regions and the second opinion was just as much his idea as ours. He believes it will help both Karlyn and I as we move forward in this process, knowing we have all the information we need.
We also met with a nutritionist today about tips on foods to eat and ways to stay healthly once chemo begins. It was good information, which is especially important for me because I have struggled so much with eating recently.
Our last appointment was a chemo class, which was basically an overview of the process and what to expect during chemo. More information than I really wanted to know right now since I will be waiting one more week for it to begin.
There was probably a lot of information that I did not capture in this journal, but I am sure Karlyn will add her perspective very soon. Thank you again for the thouhgts and prayers.
Karlyn and I met with the doctor first to discuss the test results of the PET scan. Good news is that the cancer has not spread outside of my stomach and the surrounding lymph nodes. That basically means they would classify it between Stage 2 and 3. We had a long discussion with the doctor about treatment options and chemo is the first step with a re-evaluation prior to surgery. We were initially set to begin chemo tomorrow, but we have decided to hold off for one more week for 2 reasons. First, now that I have all my test results, I have an appointment for another opinion at Mayo on Friday. Second, Karlyn and I have decided to make arraingements to preserve my fertility, which was recomended prior to starting chemo.
I need to mention that I have great confidence in my doctor at Regions and the second opinion was just as much his idea as ours. He believes it will help both Karlyn and I as we move forward in this process, knowing we have all the information we need.
We also met with a nutritionist today about tips on foods to eat and ways to stay healthly once chemo begins. It was good information, which is especially important for me because I have struggled so much with eating recently.
Our last appointment was a chemo class, which was basically an overview of the process and what to expect during chemo. More information than I really wanted to know right now since I will be waiting one more week for it to begin.
There was probably a lot of information that I did not capture in this journal, but I am sure Karlyn will add her perspective very soon. Thank you again for the thouhgts and prayers.
Friday, November 26, 2010 4:20 PM, CST
Thanksgiving was a blast. We had a great time visiting Jesse's family in Eyota, especially getting to see his cousin, Tanner, who traveled home from his military base. Of course, our niece, Sienna, was having a great time, and we were all thoroughly entertained by Jesse's cousin, Kason, who is now 14 months old. What a cute stinker! We also lost Jaxyn in the pantry briefly, when he was closed in there accidentally! That was pretty funny.
We headed over to Kasson for an untraditional Thanksgiving meal of steak and crab in the Smith kitchen! Jesse's dad and step-mom were able to join us there as well, which was so great. After dinner, we busted out the board game, Cranium, which I highly recommend to all of you, even if you think you don't like board games. ;)
This morning was an early one, as we were up at 6:45 on our day off and not to shop for black Friday! The MUGA test went as expected, but we don't have any results until the doctor calls. As I type this journal entry, we still haven't heard from him. Again, we meet with him Monday at 11:30 to go over everything, so we will definitely have some more answers by then, even if he does not call over the weekend.
After an early morning, its been a lazy day for us. Caught up on some household stuff. Planning to head south Saturday to spend time with Sam, Jesse's dad, and on Sunday, our niece Brooklyn will be baptized, so definitely looking forward to more time with family. Will most likely post again Monday evening. ;-)
We headed over to Kasson for an untraditional Thanksgiving meal of steak and crab in the Smith kitchen! Jesse's dad and step-mom were able to join us there as well, which was so great. After dinner, we busted out the board game, Cranium, which I highly recommend to all of you, even if you think you don't like board games. ;)
This morning was an early one, as we were up at 6:45 on our day off and not to shop for black Friday! The MUGA test went as expected, but we don't have any results until the doctor calls. As I type this journal entry, we still haven't heard from him. Again, we meet with him Monday at 11:30 to go over everything, so we will definitely have some more answers by then, even if he does not call over the weekend.
After an early morning, its been a lazy day for us. Caught up on some household stuff. Planning to head south Saturday to spend time with Sam, Jesse's dad, and on Sunday, our niece Brooklyn will be baptized, so definitely looking forward to more time with family. Will most likely post again Monday evening. ;-)
Thursday, November 25, 2010 11:19 AM, CST
We are on our way to Eyota for our first Thanksgiving meal of two today. We are thinking the oncologist will call tomorrow with PET scan results, but we meet with him face to face on Monday, November 29 regardless. Tomorrow morning, Jesse has his second test to evaluate his heart function in preparation to start chemo, which is called a MUGA. We will need to be in St. Paul at 8 am for this test. We will probably post an update again once we've received PET scan results.
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