Hello! Even though this cadence change was planned and well thought out, it feels like it has been a while since I have sat down and offered you all a proper update. A state of the union address, if you will.
The last few months, compared to the early days of my recovery, have been so chaotically busy, but fulfilling on so many levels.
I had delayed this post in part because I wanted to have biopsy results in hand that I could share, and I now do. But the delay has dragged on a little longer than planned simply because my life has been so full.
All good things, I promise.
So, enough rambling. Let’s get started here.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Medical
I’ll get this out of the way now: this will probably be the longest section of the post. The eleven-twelve month appointments are chock-full of testing, so in the name of full transparency, I will be working my way through each of the major tests more or less one by one and reporting on their findings.
Blood Counts
Starting off like we usually do, here is a quick look at my most recent blood counts, which were recorded on day +369.
As you can see, I am currently in a bit of a lull in terms of recovering counts. My eleven-month appointment was when we recorded the first “dip,” which, if I am completely honest, was a fairly large source of anxiety heading into my one-year follow-up.
Thankfully, my counts remained unchanged at my last appointment, and while I would have much rather seen them pop back up a little, I am content with them remaining stable for the time being and not dropping any further.
“Normal fluctuation” is how my care team described it, and I smiled at that, as that is something that throughout this entire process, as I have said many times, I have struggled with accepting. I know that my counts will fluctuate, but actually seeing them swing back and forth is something I am still working on being okay with, even after all this time.
Here is a closer look at the specifics of my red and white counts, namely my hemoglobin (red), hematocrit (red), and neutrophil (white) counts before we move on.
Immune System Function
Next up, we have the health and function of my immune system. We did this test, known as “T-Cell Monitoring/Flow Cytometry,” around the seven-month mark as well, as I told my care team that I planned on starting to live my life a little more come summer. A plan I have largely succeeded in.
I’d share both results here, but there is really no point, as they are strikingly similar.
On the left side, under the names of the cells that were tested, you can see my counts, and the “range” that is provided on the right side is what they would typically like to see in a healthy adult.
You don’t have to be a wizard with numbers to tell that my counts are below the recommended ranges across the board here. That’s okay. According to my care team, immune system recovery usually takes the longest, and they were not at all surprised to see that my counts remained largely unchanged from the original test we did four-five months ago.
Because of that, for the time being, I will remain on the two anti-viral/bacterial medications that I am taking, and that may be the case up until around the two-year mark, based on what I have been told.
We’ll see, though. I have done a lot this summer, I mean a ton if I am honest, the majority of which would keep my care team up at night in terms of “exposure,” and my immune system has held up fine. I have yet to have even so much as a sore throat since transplant (post-transplant mucositis not included), which, to me at least, is reassuring that while my counts may still be low, my immune system is functioning well for where it’s at.
Metabolic Panel
Not much to report here, which I am thankful for. A few months back, we noticed a spike in both my AST and ALT levels, both of which relate to the health and function of my liver.
In the last update, I was happy to be able to share that both levels dipped back into “normal” territory, and after this last appointment, I can say that they appear to be staying there.
The metabolic panel also offers results on many other health markers, but since all of them have been within the normal range for a long time now, I don’t feel the need to share the entire report here.
Biopsy Results
I buried the lead here a bit to build suspense. Kidding. It just made sense in my head to start with some of the lighter stuff before diving into the headliner.
My last bone marrow biopsy occurred around the six-month mark. The results from that test reinforced the idea that I was on a positive trajectory overall, but still had a very small percentage (0.3%) of detectable GATA2 mutation in my marrow.
As of today, I do not.
But we are getting ahead of ourselves. Bone marrow biopsies test quite a few different things, so we’ll be covering the main portions today, specifically the pathology, chimerism, and rapid heme panel (RHP) results.
Pathology
Starting off with the pathology report. Essentially, this test reveals the makeup of my marrow in terms of what sort of cells, structure, and other findings are present.
I highlighted the important parts as best I could, but this loosely translates to “all three cell lines are developing normally, and while my cellularity (the volume of blood-forming cells compared to fat inside the marrow) is still low, there are no signs of myelodysplastic syndrome (MDS) or any other notable issues.”
I asked about the cellularity issue, as I had imagined that post-transplant, that percentage would steadily climb back to what would be considered more “normal” for someone my age (or my donor’s age). It was around this same percentage prior to transplant, which naturally made me a bit nervous as to why it hadn’t gone higher.
From what I was told, it does take quite a while for cellularity to recover, so it was not something that my care team noted as problematic in any way, which was reassuring. Even with that, it was nice to sort of have to go looking for an issue with the findings from this report. Very solid overall.
Chimerism
A chimerism test, in this setting, is a simple test done to measure what percentage of the DNA in the testing sample is from me, and what percentage of the sample contains donor DNA.
For some reason, the chimerism results never show up in MyChart, so I am unable to share a screenshot or anything to back up what I tell you. You guys are just going to have to trust me on this one.
There was supposed to be a small sample set aside to test the chimerism of both my blood and my marrow, but only my marrow was tested during this most recent biopsy.
The good news is that my marrow is 100% donor, meaning that there is a fairly high chance my blood, which is produced from said marrow, is also 100% donor. We’ll be testing that through a blood draw next appointment, but I am not losing sleep over it in the meantime.
Rapid Heme Panel
The test that was causing the most anxiety, and of course takes the longest to come back, is the Rapid Heme Panel (RHP). This test was developed by a team at Dana-Farber, and it’s essentially a rapid (“rapid” being a generous term) genetic test that is used to identify genetic mutations in the marrow.
Like I said earlier, the percentage of my GATA2 mutation was sitting around 0.3% six months ago. Nine months ago, it was 1.3%. Prior to transplant, it was 45-60%.
In my head, six additional months off immunosuppression meant that I had high hopes that my new immune system had finished the cleanup job that it started a year ago.
As you can see, it did.
As of today, I have no detectable mutations in marrow whatsoever, even after a fairly extensive manual review of the sample.
It’s the news I had hoped to hear, and it still hasn’t really settled in yet.
It’s not a guarantee that things will always be okay, not by a long shot, but it’s a promise that, at least for the time being, I can continue building a life for myself post-transplant. After a year and roughly nine months of hearing GATA2 this, or GATA2 that, I can finally say, “GATA who? Never met her.”
Just kidding. I made myself laugh typing that. Please forgive me. It’s priceless is what I am trying to say, just don’t ask my health insurance if they’d use the same word.
Before moving on, I do also just want to mention that I happened to physically be in the most ridiculous place I have ever been in my entire life when the RHP result came in, on my first real trip post-transplant.
I’ll be covering that more in the next post, but here is where I happened to be when the results came in.
Location guesses are welcome!
Pulmonary Function
In an effort to make my one-year follow-up a little less taxing, we decided to do the dreaded pulmonary function test (PFT) at my eleven-month appointment.
I gladly made the argument that I perform a self-administered PFT every time I step out the door to go for a run, but the PA only smiled and nodded as they closed the little vacuum-sealed door and I began my test.
As you can see from the notes, the findings were unremarkable and quite normal. I was a little peeved at the “Compared to prior testing done 12/2025, there has been no significant change” comment, as my fitness recovery since last December has been nothing short of pretty dang amazing, but I guess I can’t expect them to take my Strava data into consideration for their official report.
That said, if they have a suggestion box somewhere, you can bet I will find it and let them know.
Vaccinations
When I received my nine-month vaccinations, it took me a few weeks for me to feel normal again on my runs and such. I got fatigued more easily and definitely felt a difference, but my day-to-day was largely not affected much more than that.
I provide that context because the one-year vaccinations were Rough, and yes, the capital R is intentional. This time around, I received the following vaccinations: DTaP, Hib, IPV, PCV21, MCV4, Twinrix, and Shingrix.
Of that list, DTaP, Hib, IPV, PCV21, and Shingrix were second doses, and only MCV4 and Twinrix were new.
I noted to the PA that I struggled with the nine-month doses a little, and, to directly quote her, she responded by saying, “Well, if you struggled with those, you will definitely feel these.” Not exactly what you want to hear as you see them lining up seven different needles to jab into your arms.
The photo below is what my right arm looked like two days after the appointment. Both arms were fairly inflamed and very sensitive to the touch for about a week after.
The first two days were easily the worst I have felt since I was in the hospital undergoing my transplant, which I recognize in some ways is a gift to be able to say, but man oh man, was it not a fun chunk of days.
If you are moving through the recovery process now, just be aware that the one-year vaccinations might take it out of you, so prepare accordingly if you can.
Medications
To wrap up the medical section here, I thought it might be beneficial to give you all a quick medication overview. I haven’t had too many changes since coming off immunosuppression in January, but with the one-year milestone in the rearview, I was able to come off one of the vitamin supplements I was on, and it made me think that a quick catch-up on what I am still taking would be helpful.
So with that said, here is a shortlist of what I am still taking at this time.
- Multivitamin – Once a day
- Vitamin D3 – Once a day
- Acyclovir – Three times a day (antiviral)
- Bactrim – Once a day (antimicrobial)
- Alfuzosin – Once a day (muscle relaxer)
The alfuzosin is new and related to some of the urology issues I have been experiencing, but we’ll cover that in the next section.
All said, there is nothing drastic on that list of medications, which I really like. I’d love to whittle that list down even further over the coming year or so, but I also don’t mind staying on any of these as long as my care team thinks it is still in my best interest.
Physical
Phew. We made it through the medical part, folks. Take a deep breath, though, as there is still plenty more to come.
For this section, I’ll be focusing mainly on my physical health, and by that, I mean just talking through some of the issues that I have been experiencing as of late, as well as one minor resolution.
Issues
I am happy to report that there isn’t a whole ton that we need to cover here. Two essentially lingering issues that I have spoken about in the past that remain persistent at this time.
The first of which is dry skin. The issue is relatively present all over, but most noticeable on my face and scalp. It’s absolutely annoying, but not anything that impacts my quality of life in any real way.
I bring moisturizer and lip balm just about everywhere these days, and I have gotten so used to doing so that it doesn’t even feel like anything extra. Just like making sure I have my wallet and keys before I step out the door. Second nature at this point.
I had hoped to see more improvement around the one-year milestone, but it looks like it may linger on a little while longer at the very least. We’ll see just how long as things continue on here.
The second issue is a little more unique, as it relates to the Cytoxan that I received after my transplant and the plethora of issues that I have documented and spoken about since.
In my last update, I noted that I was having some more urology issues, none of which were concerning or resulted in any abnormal test results, but issues nonetheless. More functional, I guess you could say.
I saw my urologist back in early August to go over everything, and the consensus was fairly tame. We are operating under the assumption that the heat and my relative training load have angered an already sensitive area of my body that has been doing its best to fully recover from the hemorrhagic cystitis that I experienced shortly after receiving the Cytoxan.
In short, because of the amount I had been exercising and the sweat loss that naturally increases during the summer months, my body has had a harder time maintaining hydration. That leads to more concentrated urine and a more sensitive experience overall in everything that comes with that.
He also started me on a medication known as alfuzosin, which I mentioned earlier, that is essentially a medication that helps relax some of the muscles involved in the process of using the restroom. It has helped quite a bit, as with the issues I was experiencing, I felt a kind of hesitancy in that department.
I am hoping with the fall weather moving in that I naturally start to see an improvement in the symptoms I have been experiencing, but if not, I have no problem circling back with my urologist to see what else we can look into.
That’s kind of been a key lesson I think I have learned throughout this whole process, one that is usually reassuring, if not a bit anxiety-producing at first. I notice a symptom, panic a little, bring it up to my care team, and we test and find a solution if one is to be found.
It’s a cycle that is absolutely helped by the fact that I have a deep trust for the care team around me. No symptom will go untested should I bring it up.
My anxiety and I are grateful for that every day.
Resolutions
I also had a minor resolution of sorts over the last couple of months that I think is worth discussing. In addition to the skin dryness that I have been experiencing for a while, there was a good chunk of time where I’d experience occasional hotspots of irritated skin, where the affected area would become slightly more red and would require a light application of hydrocortisone to resolve.
That has not happened much at all lately, to the point where I can’t say for certain the last time that I had to use hydrocortisone anywhere on my body.
A small win, but a win nonetheless. To me, it implies that maybe my immune system is getting more and more settled into its new environment, and that is reassuring on many levels.
Mental
Mostly good, but not perfect. That’s how I’d describe my mental health over the last couple of months.
I talked about it in my recent Health & Fitness update, but the downshift in running mileage forced me to realize just how much I relied on my progress with running as a metric for my overall health. When I slowed down, I felt it mentally more than anything else.
It has gotten easier to manage over the last month or so, which I appreciate, but it’s also been aided by my busy schedule and the reduced amount of time I’ve had where I can just sit with myself.
I also incorrectly assumed that having clean biopsy results in my hand would resolve a lot of my lingering anxiety. It has certainly helped, I am not going to sit here and tell you otherwise, but I have still felt this sort of pit in my stomach, a tightness in my chest day to day, that I don’t think is physical so much as mental.
I can feel it go away in the moments that I am truly relaxed, which seem to be fewer and farther between than I’d like lately.
At my follow-up next month, I made sure to schedule an additional appointment with one of the transplant counselors at Dana-Farber, the same one that I spoke with prior to transplant, to try and talk through things a little.
In my appointment before my transplant, she mentioned the phrase “post-traumatic growth (PTG),” in the context that quite a few patients end up recovering and growing immensely from their respective experiences. I think I am falling pretty cleanly into that category so far. I look at my life recently, and what I have planned moving forward, and it feels like I am living and not just getting by.
I also don’t think it’s a straightforward thing, though. Kind of like being hungry, I guess you could say.
I can eat 3 square meals a day, snack freely, and still be hungry from time to time. The stress and anxiety of receiving a transplant, recovering, and trying to rebuild your life from the ground up kind of feels like that. I am hitting milestones, living my life as fully as I can, but that despair, I guess you can call it, is still very much there.
Learning to make room for it will be a lifelong lesson, I think, and realizing that a full life in my case may require that I learn to live with both the hope that things will continue the way they have and the despair that sometimes creeps up, and to use that to my advantage when I can.
Or at least get to the point where sitting with it doesn’t leave me spiraling.
Exercise
As always, I like to dedicate a little time to update you all on how I am doing on the exercise front. I recently went into a whole lot more detail in my One-Year Health & Fitness Update, which I would recommend checking out if you want a more detailed overview of everything.
For today, though, we’ll just be talking about the high-level habits and routines that I have been embodying lately.
Cardio
In the running department, progress has not been as linear as I would have told you I hoped would be the case after the very strong spring and early summer that I had. That’s okay. Due to the urology issues that I discussed earlier, I decided that it was likely in my best interest to scale back to maintenance mileage for the remainder of the summer.
It definitely has been.
Here is a screenshot of what my weekly mileage has looked like when it comes to running and walking over the last couple of weeks.
Note: These are from mid/late August, pulled from the One-Year Health & Fitness Update, and more representative of where I am currently at. Due to my one-year follow-up appointment, the recovery that followed, and the trip that I took shortly thereafter, mileage has varied a little more lately, to say the least!
While reducing mileage has gone against my wants and desires in more ways than one, I am still doing enough each week to maintain the fitness that I have built back up since transplant, and I know it is likely in my best interest for the time being, especially considering that I ideally will be diving into a full marathon block come January (more on that soon, I hope)!
That’s not to say that I haven’t enjoyed my reduction in mileage at all, though. It has allowed me, due to the lack of strain I am putting on my legs compared to what I usually do, to pull one-off, fast races seemingly out of nowhere, which is exactly what happened a couple of days after my one-year anniversary at this year’s Falmouth Road Race.
From the data posted above, you can see that I towed the “PR or ER” line very tightly, and luckily only PR’d. It was close at times, though.
Jokes aside, this race was a blast. I got to spend the weekend on the Cape with my brother and soon-to-be sister-in-law, and we all crushed our respective races on the big day.
The energy in Falmouth is unlike anything that I have experienced to date on race day. Our names are printed in large lettering on our bibs, and there is nothing quite like being completely run down, feeling like your legs have nothing left to give, but rallying when you hear dozens of random strangers cheering you on. It’s electric, and a feeling I will be looking for on every race day moving forward.
Strength Training
Consistency is easily the part of strength training that I have struggled with most this summer. Because of that, I don’t have much to say for this section.
My hope is that with the reduction in running mileage, I will have a little more energy each week to devote toward making sure my muscles are being stimulated enough to see the kind of growth I am hoping to see in the strength department.
I know deep down that strength training is the foundation that can only really improve and injury-proof my running, but I still struggle to make it a habit that is as locked in as my actual running.
It’s a cycle that I am doing my best to break from, and these upcoming months are lining up to be a perfect time to do that, I think.
Social
I am aware that “Social” is a bit of a catch-all in terms of a section header, but I think it covers exactly what I want this section to represent. Basically, a little update to what is going on in my life outside of medical and fitness-related updates.
I didn’t survive a transplant just to exercise and attend appointments after all!
It has been such a busy summer, and if you had told me a year ago, or even a couple of months ago in the spring when I was really feeling the isolation that comes with transplant recovery, that my June-August run would look like it has, I would have laughed at how unbelievable it sounded.
To the point that it’s hard to know even where to start, but I guess you can kind of tell what I’ve been up to based on the pictures I have decided to include throughout this entire post.
This summer, in no particular order, I have been to art exhibits, concert after concert, two World Cup games with my best friend, countless watch parties, one of my childhood best friends’ weddings, and on an international trip that has reignited what I hope is a lifelong habit of getting out into the world and seeing what’s what.
Even typing all that, I can’t help but smile and shake my head a little.
My life has been fuller than it has been in such a long time.
One of the reasons that I have been trying to do so much, outside of the clear and obvious, is that I recognize that I am still lacking in a few really important departments of my life. Namely, my social life.
While putting myself in more situations does not guarantee that I will meet people, it does greatly increase the odds, especially when I attend events that directly relate to things I love.
Sometimes I have to drag my introverted self kicking and screaming out the door, but I have yet to get out of the house and attend one of these events and regret it. Kind of like running in that respect. It may be tough some days to get out the door, and I may not love every moment of it, but I hardly ever regret doing it by the time I get back home.
Here’s to more of that growth moving forward, as uncomfortable as it can be sometimes.
Closing Thoughts
With these updates now being spread out a little more, I expect a lot of them may end up looking similar to this in terms of length. That said, there were a lot of important results to go over today, and the hope is that there will be less and less of that to go over as time passes.
I am grateful to be able to share the updates that I have today, though, and I recognize how much of a gift it is to be able to say the things that I am able to in terms of my current health.
I think that’s where some of my lingering fear and anxiety actually comes from. From things going as well as they have. I know what it feels like to have the rug pulled out from beneath me, and I am learning that it’s not a fear that just goes away altogether as soon as you receive the test results that you wanted.
But, it’s something I will be working on. Something that I get to work on because I am not immediately facing a medical crisis any longer.
So, with that said, I am going to wrap this update up with just a quick reminder that I’d love to hear from you guys. For whatever brought you here to this update today, whether you or someone close to you is prepping for a transplant, moving through recovery and has questions, or you just want to say hello, please don’t hesitate to reach out.
Either way…
Talk Soon,
– Ethan
Resources
External links directly referenced in this article:
- Hemoglobin
- Hematocrit
- Neutrophils
- T-Cell Monitoring/Flow Cytometry
- Mucositis
- AST
- ALT
- Metabolic Panel
- Bone Marrow Biopsy
- Pathology Report
- Chimerism
- Rapid Heme Panel (RHP)
- Myelodysplastic Syndrome (MDS)
- Bone Marrow Cellularity
- Immunosupression
- Pulmonary Function Test (PFT)
- Strava
- DTaP
- HiB
- IPV
- PCV21
- MCV4
- Twinrix
- Shingrix
- Multivitamin
- Vitamin D3
- Acyclovir
- Bactrim
- Alfuzosin
- Cytoxan
- Hemorrhagic Cystitis
- Hydrocortisone
- Post-Traumatic Growth (PTG)
- Falmouth Road Race
Long Way From Home 
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