Just like that, I’ve reached day +50. Medically, there isn’t much significance to this milestone, but mentally it feels really good.
Most of the heavier post-transplant restrictions, barring any major setbacks, should start to lift around day +100, so being halfway there already is encouraging.
Anyway, it’s been about two to three weeks since my last update. I have finished my stay at the Hope Lodge, and moved in with my brother and his fiancée. I’ll be here for another month or so before hopefully returning home for good. It feels great to be out of the city and back in a more familiar environment.
As for this post’s format, I’ll be keeping the sections mostly the same, with a few omissions, but the writing will serve as more of a summary of the days noted in the title rather than a day-by-day account like before.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Medical
The first of my follow-ups, which took place on day +36, went very well. All of my cell counts were trending upward, and we also received the results from the chimerism test that had been done at the previous appointment. The test measures the percentage of cells in your body post-transplant that originate from the donor’s DNA versus your own.
Ideally, the results should show a very high percentage of donor DNA. Since I underwent a myeloablative chemo regimen before transplant, the odds of having any of my original bone marrow left were slim to none (which is what we want), and thankfully, the results confirmed that.
Of the three cell lines tested, I scored 100% in two and a 76% in the other. According to my doctor, a result around 70% is completely normal for that particular cell line at this stage of recovery, and it should continue to rise as more cells are produced over time.
During this visit, I also completed a urinalysis, as I’m still experiencing some blood and general irritation. The test came back negative for any infection, so we’ll continue to monitor the issue. My team isn’t currently concerned.
My next follow-up, a week later, was more of a mixed bag in terms of cell counts, but my doctor was very happy to see my neutrophil count climbing. Neutrophils are a crucial part of the immune system, and while mine will remain weak for a while, it’s encouraging to see that number move in the right direction.
Some of my other counts dipped slightly while others rose alongside the neutrophils. All part of the process. My doctor even said I was doing well during that visit, and as someone who tends to stress over the small details, that was comforting to hear.
The last follow-up, on day +49, was largely uneventful, which is the ideal outcome for these visits. Both my red and white cell counts increased, while my platelets dropped a bit. Around this stage of recovery, platelets often dip before beginning a steadier climb. I can’t quite remember why that happens, but I appreciated the heads-up from my team, as it’ll help ease my mind if I see them continue to fluctuate before rebounding.
Physical
A couple of minor points to discuss here. Some are lingering issues I’ve been dealing with, while others are new things that have cropped up, but luckily, nothing my care team is overly concerned about. Still, I want to share the details in case anyone reading experiences something similar and finds it worrying.
First, as I mentioned earlier, I’ve had blood in my urine ever since the hospital. Due to the chemotherapy I received, I developed what’s known as hemorrhagic cystitis. I would not recommend it. At its worst, it was extremely painful. Every trip to the bathroom felt like an ordeal, made worse by the fact that the best treatment is simply to drink a ton of water.
Eventually, as the chemo cleared from my system, things improved a lot. That said, when I’m even slightly dehydrated, I still notice trace amounts of blood in my urine. At 50+ days post-transplant, that ideally shouldn’t still be happening, at least not because of the chemo or the hemorrhagic cystitis.
The leading theory now is that it may be a reaction to one of my medications. It’s not a common side effect, but again, not one my team seems overly concerned about. The plan is to keep monitoring it, which I’m comfortable with. Remembering the level of discomfort I had early on makes what I’m dealing with now feel very manageable.
Moving on, another odd development has been a change in the consistency of my saliva. Either it’s actually different, or I’m just noticing it more now that my sense of taste is coming back. It’s nothing major, but it does feel thicker and tends to coat whatever I eat, leaving an aftertaste that hangs around longer than I’d like. Worrisome? No. Annoying? Absolutely.
Lastly, around day +34, I woke up with some puffiness under my eyes and what I initially thought was an inflamed lymph node. Turns out, it may have been one of my salivary glands. The swelling lasted a couple of days before subsiding. Whether or not it’s related to the changes in my saliva, I can’t say for sure, but it’s my best guess.
Mental
Overall, my mental wellbeing during this stretch was pretty solid. That’s not to say there weren’t setbacks or days where I felt sad, frustrated, or anxious, but for the most part, I’ve tried to make the best of things.
The hardest part has been returning to Dana-Farber week after week for follow-up appointments. Even though things have been going well, I’ve noticed that my mood tends to hinge on how those visits go and whether my counts are trending in the right direction.
I’ve gotten better at managing the anxiety that comes with appointments, but I’d be lying if I said I was completely stress-free on clinic days. Those visits tend to set the tone for the next week. Whether I’ll spend the following days calm and confident that things are on track, or stuck in my head, worrying more than I’d like to.
During this period, we also wrapped up our roughly two-week stay at the AstraZeneca Hope Lodge. I’ll share a more detailed overview of that experience at some point, but for now, I’ll just say that we made it work. It wasn’t perfect, but unless you live close by, post-transplant lodging usually comes with some comfort trade-offs. That said, I’ll always be grateful that places like this exist for patients
Exercise
When my Dad first arrived at the Hope Lodge to begin his two-week rotation as my main caregiver, I joked with him, “Welcome to bootcamp.” Slight exaggeration, maybe, but at that point we had already been logging a decent number of steps each day, and I was determined to keep that trend going.
An average day consisted of around 5–9k steps. Not huge numbers by most standards, but for someone who had struggled to walk a city block just a few weeks earlier, it felt like real progress. We’d walk quite a bit around the Lodge during the day, up and down stairs, around the property, and then in the evenings we’d usually do a longer hike around town.
Because of the progress I had made with walking, I knew that when I arrived at my brother’s place on day +45, I would want to give running a try. I hadn’t run since early August, so those first couple of runs back were equal parts exciting and humbling.
Regardless, I’m just glad to be moving again. It’s going to take a long time to rebuild my fitness to where it was pre-transplant, but I’ll get there one run at a time. These were the first steps down that path.
Closing Thoughts
As I mentioned at the beginning, the day +50 milestone may not carry much medical significance, but I’m happy to have reached it in relatively good health. I’m now staying in a more comfortable environment, running again, and starting to regain some strength.
All in all, I can’t complain much about where I am in my recovery.
Until next time.
Talk Soon,
– Ethan
Resources
Links directly referenced in this article:
- https://www.nicklauschildrens.org/treatments/chimerism-test#:~:text=A%20chimerism%20test%20is%20a,donor’s%20and%20patient’s%20genetic%20material.
- https://www.cancer.gov/publications/dictionaries/cancer-terms/def/myeloablative-chemotherapy
- https://my.clevelandclinic.org/health/diagnostics/17893-urinalysis
- https://my.clevelandclinic.org/health/diseases/24164-hemorrhagic-cystitis
- https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge/boston.html
Long Way From Home 
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