Day +100 is one of the major milestones in the transplant process, and I’m very happy to say I’ve finally reached it.
This milestone comes with the loosening of some restrictions, which is great, but also with the added anxiety of more testing, tapering key medications, and everything else that comes next.
I’ve made a point of celebrating the wins as they happen though, which has helped ease some of that anxiety. Overall, I’m happy and healthy enough for where I am right now. What more could I ask for?
Let’s get into it.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Medical
I had four appointments during this stretch. Instead of listing the individual counts from each visit like I’ve done before, I thought it would be more helpful to show how my three main cell lines have been trending over the last few months through this “early recovery” phase. This should give a clearer picture of what I mean when I say progress is far from linear and that a full count rebound can and will take time.
As you can see, there hasn’t been much movement as of late. No big gains, but no real setbacks either. I’m grateful for that, even if it’s a little frustrating to have my new cells taking their sweet time. Since my care team isn’t worried, neither am I, but it has been an exercise in patience that’s for sure.
During this first visit, we ran through any lingering or new issues like we always do. I’d been dealing with some light leg swelling since returning to work, likely just fluid pooling from sitting most of the day, and the occasional bit of blood in my urine still.
The frequency of those episodes has been decreasing, which I’m happy about, but since they were still happening, my team decided to schedule an ultrasound after my next appointment to check my kidneys and bladder.
On day +85, I had that appointment. Three big things came out of it. I scheduled my first post-transplant biopsy for day +99, started talking through a plan to taper the main graft-versus host-disease (GVHD) drug I’ve been on since the transplant (tacrolimus), and had the ultrasound. The results are below:
As you can imagine, seeing the phrase “may be a mass” on a report isn’t ideal. The thing is, the language on these reports often sounds more alarming than it’s meant to be. In plain terms, the ultrasound showed a small area of bladder wall thickening on one side, and the imaging just isn’t detailed enough to say what it is. “May be a mass” is simply the wording they use when they can’t be certain.
I have an appointment with a urologist on day +116 to look into it more closely. After going over the results on the phone with my team, and again during my day +92 visit, I feel a bit more at ease about the situation.
Since the appointment is still a ways off, we discussed some of the positives that we can lean on while waiting for a specialist’s input. After receiving cytoxan in the hospital, I developed hemorrhagic cystitis, which I have spoken about before. That condition has been known to cause deep ulcerations in the bladder, which can later show up as bladder wall thickening when the tissue heals or forms scar tissue. This is relatively common. My urinalysis results have also been moving in the right direction, with less blood each time we test. I also have no other symptoms right now.
I am doing my best to stay optimistic, and I genuinely believe my history and current symptoms suggest something healing rather than some worsening issue. We will see though.
My last appointment during this stretch was on day +99, and it was a big one. It marked my first bone marrow biopsy since the transplant. I don’t have the results yet, so I can’t share anything in this post, but I’m hopeful.
We made the decisions that we did to give me the best shot at having none of my original marrow left over post-transplant. The ideal outcome is that the biopsy comes back showing no remaining GATA2 mutated cells in my marrow. If it does show up though, we already have a plan.
The first step, if the mutation is still present, would be to speed up the taper of the GVHD medication I’ve been on since the transplant. Normally, they would do that slowly to lower the risk of a stronger GVHD flare from occurring. But, the drawback with that is that this drug also suppresses my new immune system, preventing it from really doing much of anything.
Theoretically, my new immune system should be able to recognize any of my old cells as not belonging. The idea here would be to loosen the reins a bit earlier and let my new immune system do what it is meant to do and clear out anything that shouldn’t be there.
That plan should work. If it doesn’t though, my team would reach back out to my donor for more cells, and I would start on an infusion schedule of said cells to give my body a bit of a boost. The good news is that this wouldn’t require more chemotherapy, since the donor’s cells are already fully engrafted and technically my “primary system.” No additional conditioning would be needed.
All that said, I’m hoping that we don’t have to delve into the “backup” plans at all, and that I can just share some good news with you all in the next update. Time will tell though.
Physical
Overall, I’ve been doing well physically during this stretch. As I mentioned earlier, I’ve had some light swelling in my lower legs and the occasional bit of blood in my urine still, but outside of those issues and a minor GVHD flare-up that I’ll get into, nothing has really been out of the ordinary or overly concerning.
I first noticed the leg swelling shortly after returning to work. I work from home and spend most of the day sitting. After months of mostly resting in bed or on the couch, with short bursts of activity, switching to long stretches of sitting at a desk seems to have led to some fluid pooling in my legs. There’s been no pain or redness associated with the swelling though, which is a positive sign.
The swelling usually starts shortly after I begin my workday and resolves overnight or after a couple of hours of keeping my legs elevated. That pattern is another reason my care team feels comfortable that this isn’t anything more concerning at this time.
As for the blood in my urine, it has been improving week by week. When it does show up, it usually happens earlier in the day after coffee if I have not had enough water beforehand or after exercise. Those patterns feel reassuring to me, but like I said, I will know more after my appointment with the urologist on day +116.
The only other thing that came up during this stretch was a small GVHD flare. I noticed a bit of redness on both sides of my neck before my appointment on day +85. It was only really visible in certain lighting though, nothing all that alarming. My doctor took a look and decided to prescribe me some hydrocortisone to use.
After a couple of days, it faded. Whether it was truly GVHD or not is hard to know, but my doctor felt it matched some common patterns they often see. We are keeping an eye on it, but it has not returned since it went away.
Mental
On one hand, I have a lot of positives to lean on from this stretch. On the other hand, I am still very nervous. Nervous about the biopsy results, nervous about what the urologist might find, and so on. The anxiety comes in waves, and I have been doing my best to ride it out when it shows up.
Part of why I think it’s been tougher is because I had really settled into the early recovery phase over the last couple of months. I’ve been making slow progress and feeling a bit more like myself each week. My appointments each week were really just a blood draw and quick discussion about any issues I had been having, nothing more heavy than that.
All the testing I have gone through during this stretch though, along with what is still ahead, has shaken me up a bit again.
The stakes are high. They have been the whole time, but this is the first stretch really since my time in the hospital where it has been really hard to ignore. There is a plan if the treatment did not work exactly the way we wanted it to, but I really hope it did. It has been a long couple of months, a long year, and the results that come back in the next few weeks carry a lot of weight. It determines whether I get to exhale a little or have to take on even more uncertainty.
Aside from the anxiety, I did hit a big positive milestone during this stretch that I would like to share. On day +92, I finally moved back to my apartment in Connecticut. Being home for the first time in three months has been incredible. Back in my own space. Back where I feel most comfortable.
It has been restorative so far, and I can only hope it continues to be in the weeks ahead.
Exercise
Much like my blood counts, my physical progress has also stagnated a bit as of late. I was hoping things would move more linearly, but just like everything else so far, it fluctuates.
I’ve kept my weekly running mileage around six to ten miles. The runs have gotten easier in some ways, but my legs still feel pretty heavy after the first half mile or so, and from there it becomes more of a mental game about how much discomfort I want to push through that day.
Even so, I did manage a four mile run during this time, which I’m proud of. It’s my longest post-transplant run so far. Details are below:
Outside of running, I have been trying to get at least one walk in each day, mostly just to keep my legs moving. Now that I am back home, I also have access to an exercise bike again, and I am looking forward to getting more miles in that way as the colder weather sets in.
I’m hoping to report more progress next time, though that will depend on my recovery continuing to trend in the right direction and my cold tolerance improving.
All in all, I am still just glad to be moving and getting better, even if the pace of that improvement is slower than I would like.
Closing Thoughts
My next update will come around the day +150 mark. By then, I should have more actual details to share with you regarding the results of my biopsy as well as the urology appointment and whatever may follow from there.
As I said earlier, I feel more positive than negative about things right now, but I am looking forward to hopefully having some concrete data to support that feeling.
Talk Soon,
– Ethan
Resources
Links directly referenced in this article:
- https://my.clevelandclinic.org/health/diseases/10255-graft-vs-host-disease-an-overview-in-bone-marrow-transplant
- https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/description/drg-20068314
- https://www.mayoclinic.org/drugs-supplements/cyclophosphamide-oral-route-intravenous-route/description/drg-20063307
- https://my.clevelandclinic.org/health/diseases/24164-hemorrhagic-cystitis
- https://my.clevelandclinic.org/health/diagnostics/17893-urinalysis
- https://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/about/pac-20393117
- https://medlineplus.gov/druginfo/meds/a682793.html
Long Way From Home 
Leave a comment