Hey everyone, I'm happy to report that we had a really nice Christmas.
Just before the holiday, Sam's team discontinued this awful anti-fungal drug he was on, and started him on a new one. When they did, he started feeling better right away. His liver and kidney functions have returned to normal (or closer to normal), the nodules on his lungs are shrinking, and his energy and apetite have bounced right back. And, we are both sleeping much better too. The drug they stopped was a 14-hour home infusion that involved waking up a number of times throughout the night to keep it going. Whew - I'm so glad it's done!
Anyway, this recovery period finally feels like just that... recovery. I'm happy to say that within the last week or so, we've made the most of it! We've made and eaten tons of great food, gone to walk around new parks with Birkie, watched movies, checked out new neighborhoods in Seattle, hung out with family, eaten more great food.... etc.
Just this afternoon, Sam's doctor gave him a call to say goodbye and that next week she'll be "passing him off" to the transplant team. We're sad to say goodbye to her, but this is a good thing! It means that his complications have cleared up enough that he's ready to move onto the transplant team and toward the next step in his treatment process.
Next week, he'll start a series of tests to ensure his body can handle the transplant process. If all goes well, he'll be admitted back to UW Hospital (Washington, not Wisconsin) to get some new, leukemia-fighting stem cells.
Due to the timing of this, Sam'll be down for the count during his birthday once again this year, which means I'd like to bring back the #31forSam challenge! Click here to check out the page and learn more.
I'll admit that, of course, I'm extremely nervous about what lies ahead in the hospital. But, we know from experience that it's important to be 'in the moment' and cherish each day before we have to deal with all that again. I'm so grateful for this time we've had, and plan to make the most of the next few days.
I know you all love to hear good news, so I wanted to share!
Now we're headed out for a little hike with Birkie... Hope everyone is having happy holidays.
When Sam and I met and first started dating, he was recovering from A.L.L. - his first leukemia treatment. He was still on maintenance chemotherapy and steriods, so he was weak and puffy. But he had this very Sam-like drive to get. the. f*ck. back. OUT THERE - at any cost. (If you know Sam, you know that "Sam-like" is really the best descriptor of this drive.) So of course, while still on chemo, he decided to take me on a 35 mile bike ride out to Paoli and back. It had been YEARS since I'd been on a bike any further than from my apartment to The Chocolate Shoppe (Madison's finest Ice Creamery) and back. I was not in shape and wouldn't have considered myself "active" or "outdoorsy." But you know, I wanted him to think I was cool, and fit, and all such things. Plus, he was still on chemo for christ sake! So I said yes to this ride idea. (I was also broke, so I called one of my parents and asked them to buy me a bike helmet.)
Anyway, Sam gets all suited up in his road biking kit: clip-in shoes, spandex bike shorts, bike jersey, gloves, glasses, etc, and then tunes up his fancy carbon fiber road bike. You get the picture.
I, of course, don't have any of that... or a bike, except for the one that's rusted and locked onto a bikerack somewhere in Madison - and I had no idea what the code on that lock may be. It's probably still there now.
"Not to worry," Sam said. He pulled out a single-speed mountain bike for me to ride along with him for our 35-mile inaugural ride together.
I now know how ridiculous it is to set out with a fancy road bike and a single speed mountain bike and expect to ride "together" for any distance, but that day I just rode along as fast as I could, and he knew my ignorance made us the pefect pair as he got back into biking shape after treatment. It worked out perfectly. We both had a fabulous ride, and cheerfully and exhaustedly ate loads of pizza when we were done.
Eventually I'll have to admit to you that I haven't been blogging because this round of treatment is sucking too much to tell you honestly how I feel about it like I did last time. I guess that's right now, huh?
Last time, I was learning how to be a caregiver and how to process hard things. I was learning a new medical language. Now, I'm familiar with all of it and I guess I'm a tad bitter about needing to use these skills again on a daily basis. I think that knowing that my bitterness might shine through on the blog has been keeping me from writing because it's difficult to admit to not handling things well.
I've also told you a story of "normal" Sam and Jenny time because I so desperately miss "normal Sam and Jenny" that even typing out that sentence hurts my soul and stings my eyes.
Back to now. Sam has been out of the hospital for three whole weeks - in a row! This time period is supposed to be his chance to allow his body to recover before going into the intense transplant process. While some recovery has happened, the past few weeks have been full of ups and downs. One complication will recover or resolve, and then something else pops up. Because of the rollercoaster, it hasn't been the rejuvinating time he needs. I won't say, "the rejuvinating time that we were hoping for," because I think we're smart enough not to get our hopes up anymore and just roll with the punches.
Anyway, more concerningly, due to the rollercoaster, the "recovery time" also hasn't instilled much confidence in us or his doctors about how the transplant will go. Luckily, there is still time for that confidence to build before we need to forge ahead.
Specifically, right now we are hoping that the nodules in his lungs (aka pulmonary pnumonia) go away. His liver and kidney functions are on the mend, so that is nice progress to see.
I'll end this scattered post by saying that while there is a lot we both wish were different this holiday season, there's a lot to be grateful for too and I'd be remiss not to mention it. First, he was WAY more sick this time last year, so Christmas is already looking up in comparison. Second, we'll be with his family, and what more can you really ask for than to be with family? We also are fortunate to have health insurance, and a support network that is what I consider to be an indelible army of warriors, pray-ers, partiers, joksters and saints. A.k.a. someone is ALWAYS there for any mood, need or occasion :)
Thank you for being there and reliving stories with me. Happy holidays, everyone. We love you.
Well folks, it's time for another edition of the good, the bad and the ugly. Brace yourselves, this post will likely be more on the technical side for those wanting to follow along with the details.
If you're thinking, 'geez, I'm sick of these technical, boring, medical mumbo-jumbo updates.' Let me tell 'ya: ME TOO! (Not that anyone says "mumbo jumbo" anymore.)
I wish I had something else to share with you guys. But our life these days is full of treatments, tests, drugs and waiting... and not a whole lot else. It's not fun at all, but luckily we have all your friendship, support and the hope of getting back to our glorious life and all of you at the end of this that keeps us going.
Ok. here goes:
Sam's bone marrow biopsy came back, and it told us he is in remission! (More accurately, he is in "remission without count recovery" at 0.1% blasts. You're allowed up to 5% to still be considered in remission, so this is not perfect but still very good.) The chemo did what it was supposed to do, and what the chemo in Wisconsin was unable to do. Considering any other result would have meant the end of his treatment, we are thrilled they were able to get him in remission. Hip, hip, hooray!
Along these same lines, his blood counts have continued to recover, meaning his immune system is coming back. He's no longer at low levels where any little infection will make him dangerously sick. As his immune system came back, most of the problems he was admitted for last weekend have improved. The first question out of Sam's mouth when he heard his improved neutrophil count today: "Can I eat sushi yet?" (They said yes.) Since his counts have recovered very well, he was released from the hospital yesterday, and we are staying back at the apartment in Seattle with the Weises.
There's more! Today we found out that they were able to find a donor for Sam's double cord blood transplant. So, when he's ready, they'll be ready for him. I am amazed and immensely grateful that a mystery team of people worked to make this happen, and a two mothers we've never met made a donation of their umbilical cords after giving birth. YAY. for. that.
While this is all really great, unfortunately he has a ways to go before he is ready for the transplant. I wish we had been more in the mood to celebrate all the good news, but there is always so much piled on that we're feeling overwhelmed and it's hard to stop and smell the roses. We try to as much as we can. But, you know, it's just a lot.
Anyway, his liver function levels are still not healthy and he likely still has a fungal infection in his lungs. (They'll check in with a CT scan on Monday to see how his lungs are doing. Hopefully they're already looking better.)
This is all important because they don't want him moving to transplant with either of these conditions, especially the liver issues. Since the drugs they have to give during the transplant are so harsh, he needs to have a healthy liver going in... meaning they can't start the transplant process until they see his levels come back to normal (or closer to normal) levels.
All this was feeling tough but tolerable until today it became increasingly clear he is still dealing with some pretty aggressive Graph Versus Host (GVH) disease. If you've been following along with Sam's journey, you probably remember that GVH is what had him in the hospital for over two months last winter and almost killed him. And then after he recovered and we moved back to Alaska, his GVH made a nasty resurgance this June that put him in the hospital, and then continued causing trouble the rest of the summer.
When we were in the hospital last week, the doctors suspected that the issues he's having with his GI tract, liver and eyes are due to GVH, but they weren't sure. Then today, he woke up with a rash on his cheeks, chest and back and his doctors confirmed it was consistent with GVH.
So now, not only will they not consider transplant until the liver, lungs and GVH have improved, we also know how quickly Sam's GVH got out of hand last time and how serious and scary and awful it is. They've given him drugs to begin treating the GVH right away, but they're the same ones that didn't work quickly last time (because there are no alternatives).
This is freaking us the f*ck out. When we considered going through this again, my primary fear was Sam having to ever experience the misery of GVH again. Now, potentially going through that again knowing that also it blocks the chance for his transplant sounds truly terrible.
So. If you have the time and the emotional capacity for adding one more thing to your list, please join us in hoping these drugs kick in right away the GVH doesn't get out of control and Sam can move to transplant as quickly as possible. As always, thankyouthankyouthankyou so much for the love.