This has been a, "no news is good news" stretch. Sam has continued to slowly improve and come back to life a little more. He has started to reconnect with a few friends and even get back into doing some work. His team at the hospital is starting to focus on getting him out of here, which after 43 days on B6/6 is really exciting!
We don't really know what the recovery looks like from here, but it is so good to start thinking about places we want to eat, trips we want to take, food we want to eat, beers we want to drink.... ok yeah, we're both super focused on food. After eating mostly cream of wheat for a number of months now, Sam thinks about food a lot. I'm pretty excited about the food tour of Madison that will take place once he's feeling up to it. After this nightmare, sitting down with Sam at a restaurant somewhere sounds like the best thing in the world!
Anyway, I'll be in touch again soon. Just wanted to post a quick update that Sam's still on the up and up.
Among mountain climbers there’s a saying that the summit is halfway. It’s a little-known fact that more climbers die descending the mountain after summiting than trying to go up. This old adage is to remind them that the goal is not to make the summit, but to make smart decisions and save enough energy to make it back to basecamp. Back to their friends and family where they can share stories of the adventure.
When I was discharged from the hospital following the transplant I felt like I was on the top of a mountain. I looked forward to each day getting a little better than the previous one.
I had forgotten that the summit is only halfway.
The descent was almost immediately met with the dark clouds of an unexpected storm. Rock slides, whiteouts and avalanches ensued and have battered and bruised my body so badly that I’ve been left pissing and shitting blood on the side of the mountain (I really wish this were just part of the metaphor).
It’s been 93 days and I’ve been stuck in the storm on the side of the mountain ever since. At times it’s felt hopeless to try to make it back to basecamp. It’s taken every ounce of energy and mental fortitude I have to take one step at a time down the mountain knowing that I would either make it down or die trying.
They say it’s always darkest before the dawn. The night before my 30th birthday, I lost so much blood that my heart rate jumped to 140 and blood pressure fell to just over 80/40. I couldn’t stand without completely losing my vision. My heart raced as I lay in bed as if I were climbing Hatcher Pass on my bike. I thought it might all be over.
Thanks to the tireless all-night work of nurses, doctors, and 7 blood donors I will never get to meet, they were able to get the bleeding to stop and get me filled back up with red blood.
Then this week, there was a slight break in the clouds.
On Monday the final results of the bone marrow biopsy came in and showed that I remain leukemia free and over 98 percent of my immune system is now my Dad’s – Hope. A reason to keep fighting, to keep putting one step in front of the other.
Then yesterday we got unexpectedly good news. The biopsy from a birthday colonoscopy (happy birthday?) showed “likely improvement and healing in the gut.” This is great and relieving news. After 33 days of laying in bed having doctors say they have no way of know if I am getting or will get better, we finally have evidence that the damage from the GVH is likely improving.
We still have a long, dangerous way to go. We’re not even close to the bottom and there are many technical sections ahead. The docs warn that I am still at an extremely high risk of infection and bleeding.
But this week brought us down to camp 4, where the altitude is a little lower and oxygen a bit thicker. Most importantly the hope and determination to get back to basecamp where friends and family await is stronger than ever.
A huge thank you for all of the support/prayers/good vibes and #30forsam love. It’s kept me going through days I could not have gotten through on my own.
Today is Sam's 30th birthday. It's a good thing he's not that into birthday celebrations, because we're 29 days into this hospital stay and feeling so far from celebrating. All your #30forSam posts and activities are definitely helping to lift the spirits though. Thank you!
I haven't updated in a while, so if you're interested in staying up on the medical details, read on.
As I noted in the last post, Sam's blood counts have been haywire and his doctors were worried that the leukemia had come back again. They did a bone marrow biopsy on Monday. Initial results came in on Tuesday and they showed no signs of leukemia. Phew! This was such good news. We are still awaiting final results on some additional testing from that biopsy that needs to be sent away and takes much longer. So we are still anxious for those final results and to be able to say for certain there's NO more leukemia, but we are happy with what we have seen so far.
And, I suppose I should say, I have a habit of only posting to this blog when major events happen, which tend to be negative. But Sam does have good days or afternoons or hours (we'll take it!), especially lately. Just yesterday, he was unhooked from his IV pole for a few hours and we got to walk outside! It was great.
Sam is in the hospital because of Graph Versus Host Disease, where his old cells recognize the new, transplanted cells as bad, and attacks them. This has impacted his GI tract very badly. It is really hard to talk about this because well, it's pretty disgusting. (In fact, if you are easily grossed out, you should probably just stop reading now. I warned you!) The main thing they are tracking is Sam's "output," which means we basically just talk about Sam's poo all day, every day. We have seen (or had been seeing, at least) gradual improvement since he came into the hospital for GVH 29 days ago. His upper GI has improved (no more vomiting), his GVH skin rash has cleared, and his lower-GI problems have ...fluctuated. Sometimes it seems better, sometimes not. The fluctuation makes it really difficult to tell whether he has made progress. The docs tell us over and over: this is a very slow healing process. So we are constantly unsure of whether he is actually getting better - just really slowly, or if he is stalled and they have not yet found the correct drug to treat this problem. After 29 days, it is very frustrating. And frankly, really scary.
In addition to GI problems, the fact that it has been 6+ months now is definitely setting in and we are trying really hard to remember real life and keep his spirits up. In the evenings, we turn on good music and lay in his bed together and think about fun things we'll do when we get the hell out of here. Restaurants, trips, meals to prepare, hikes to try, etc. It's keeping us sane.
More recently, the lower GI problems took another turn for the worse when he started loosing large amounts of blood when he went to the bathroom. (Like often over a cup of straight blood per time, and going very frequently). Loosing that much blood and fluid volume quickly wreaks havoc on the body, as you can imagine. You get a headache and instant anemia from blood loss. Your heart rate soars and blood pressure drops due to lack of fluids. It's really scary. Last night it got so bad that he needed 6 transfusions of blood and platelets (the cells that help clot the blood), plus two giant bags of fluids. Today he is still losing blood and his blood pressure remains too low. He is undergoing some tests this afternoon to see why this is still happening and if they will be able to fix it. Having doctors repeatedly tell you, "I don't envy your position" and, "if that happens, we'll have to put our heads together to come up with a solution" are not fun things to hear. I'll edit this post later with an update.
4:20pm Update: The tests they did today confirmed that his lower-GI has not improved with the treatment he's been given so far, and his team of Docs are taking the night to think through the new plan and check insurance coverage. Basically the, "if that happens, we'll have to put our heads together..." thing happened. On the plus side, the bleeding has stopped for now. In the meantime, they told him no food or water and to "rest the gut." and ...happy birthday?
What can you do?
Thank you so much for all the #30forsam plans. It is truly so cool to see, and brings a smile to Sam's face every time. Fun fact: Did you know that you make hemoglobin (red blood cells) when you exercise? Bags of red blood are what they have been giving Sam through his IV to help stabilize him and keep him alive. He has gotten SO many bags of them. If you want to help even more and are able to give blood, please consider donating blood again. It is SO important for patients like Sam and thousands of others. Thank you a million in advance!
Thanks for sticking with me through this long update, and sending continued healing prayers to Sam, and wisdom for his team of docs.
It has been a while since the last update, but honestly (and unfortunately) not much has changed. Sam remains in the hospital with Graph-versus-host disease (GVH), as the docs try to figure out whether the current treatment is making progress to fix it or not.
On the plus side, his overall demeanor has improved since he was first admitted. The skin rash and upper GI problems (vomiting) have eased up, and with that came the ability to eat tiny portions of food, stay awake a little longer, and go for short and slow (but much appreciated) walks on the floor and get a break from the room (aka "tiny house").
However, this bit of progress was hard-earned and honestly very difficult to celebrate since Sam is still so uncomfortable with the other lower GI symptoms he is dealing with due to the GVH. As of yesterday, his blood counts have fallen, which could be from the GVH and/or its treatment, but we might need to do another bone marrow biopsy this week to rule out that the low counts are caused by relapse of the leukemia. I don't know what to say about that and frankly don't even want to think about it so I'm just going to put that there and move on.
Emotionally, I think we are doing the best we can given the circumstances. Needless to say, Sam is going fairly stir crazy now that there is snow on the ground and there are not skis on his feet. Also, this has been one of the scarier stretches we've had in the hospital because of his overall condition and seeing such minimal improvement. Each night, we'd talk about what could have been considered better or worse that day for a while, until they eventually advised us to change from watching for improvement day-by-day to looking for trends over four-day stretches. It's setting in that even once we see the improvement we need to, it will be a very long road until those skis are back on Sam's feet.
As for me, I've been doing all I can to help keep Sam's spirits up and remind him that if anyone can conquer this, it's him: his soul, his determination. I have also been preparing for #30forsam (check out the hyperlink if you don't know what that means!), which is a great way to sneak away and address my stir-crazyness so I don't bring any of that frustration back into the room with me when I am with Sam. I've also been trying to teach myself that this cancer and GVH thing doesn't follow calendar years, or take breaks for Christmas, or ease up when winter break ends and it's time to go back to work. It just is. Day by day, little by little, it will get easier but progress takes time. I haven't quite mastered this serene peace of mind yet, but I am working on it and that will have to be good enough.
As always, thanks for the vibes and for sharing all your #30forSam plans with us.
Love from UW,
Jenny & Sam