Welcome back to our regularly scheduled programming. Today’s update brings with it largely good news.
While there are still a few minor inconveniences that we’ll be discussing, things are trending in a positive direction overall, and I am very happy with how the last month or so has gone.
So, without further ado, let’s get into the specifics.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Medical
Per usual, we are going to kick off this post with a quick recap of my blood counts.
Blood Counts
Pictured below are where my three main cell lines stand as of day +244, when my most recent appointment and blood draw took place.
As you can imagine, I am very pleased with the trend my counts seem to be following right now. I have learned from previous spikes not to assume they will continue to climb like they have recently, but seeing the numbers this time around definitely made me smile.
It has also been a few updates since I have shared some of the more specific red and white cell counts that my team focuses on, so below are screenshots of where my hemoglobin (red), hematocrit (red), and neutrophil (white) counts stand.
Again, things are trending in a really good direction overall. That said, it’s still a process, and there are still a few counts that are very much in their infancy and climbing more slowly than others.
In this case, I am referring to the results from a T-cell test that we did on day +218.
Immune System Function
A T-cell test is exactly what it sounds like: a blood test that measures the number of T-cells in your body. These cells, along with B-cells, make up the bulk of the cells responsible for fighting disease, bacteria, and infection.
Your immune system, essentially.
This test is usually performed closer to the one-year mark post-transplant, but we did it a little early because I basically told my team that “I am going to start living my life a bit more.” Because of that, we wanted to just get a sense of where things stand so I can plan a bit more effectively for the next couple of months.
Results from the T-cell portion of the test are pictured below.
And here are the results from the B-cell portion of the testing.
While my B-cells are faring relatively well, my T-cells are definitely lagging behind the rest of my counts. This is completely normal, as T-cells are often one of the last to recover post-transplant according to my team.
While a bit disappointing, it is still valuable information for us to have at this stage. I am doing well in large part because of the level of caution I have maintained since transplant, and this test all but confirms that I need to continue weighing the risks versus benefits before choosing to participate in real-world activities.
Not quite open season for me yet.
Metabolic Panel
I don’t typically cover my metabolic panel results, mainly because there is usually nothing to discuss. That is not quite the case this time around. The results from my last two metabolic panels show slightly elevated AST and ALT levels. Both of these relate to the health and function of my liver.
I’ll start by saying that my care team is not overly concerned. The numbers are only slightly above what they would consider normal, and many of the other markers they look at relating to liver function, like bilirubin and alkaline phosphatase, are within a healthy range.
Also, In the month or so between my last two appointments, the numbers have not changed in any meaningful way, which suggests this is not a worsening issue at the moment.
There are many factors that can influence these counts. Exercise is just one of them, and if you have been following along for a while, you know that my activity level has only been increasing since the start of the year. That lines up pretty well with the rise in both my AST and ALT levels that you can see in the data pictured above.
That said, my team will absolutely keep an eye on these levels moving forward, as any further increase could be an early sign of liver GVHD, which could require some intervention to manage.
Physical
Moving on to the physical side of things. In the grand scheme of it all, I am feeling well. There is nothing going on that truly affects my quality of life in any major way, but there are a few things worth discussing today.
Issues
Since none of these issues are particularly burdensome, I am going to move through them fairly quickly to try and keep things flowing.
First up, I am still having some skin reactions/dryness here and there. The reactions have been contained to a shortlist of recurring areas that have been easily contained and treated with hydrocortisone. Just a little bit of redness in those areas really, and they have all gone away fairly quickly after applying the topical cream.
The general skin dryness, on the other hand, has been more persistent. It is especially noticeable on my face and scalp, and while moisturizer now has its own category in the monthly budget, it only does so much. My care team assured me this is common, and that it is mostly a waiting game, with many patients seeing improvement closer to the one-year mark.
Second, I am still experiencing occasional discomfort while urinating. As I have discussed previously, I experienced some hemorrhagic cystitis after receiving Cytoxan in the hospital. While my most recent urinalysis came back completely normal, and we have clear scans from a few months back, I still feel a dull ache in that area at times. It is not particularly concerning, just a minor lingering inconvenience.
Third, I have started to notice some very mild mouth reactions. My team does not currently think it is GVHD, as it does not match what they typically see in oral GVHD cases. In my case, there is some minor inflammation under my tongue in the form of these tiny little bumps, possibly mucoceles, according to my care team. They do not affect my diet or eating in any meaningful way, but they are slightly noticeable when I do eat or drink certain foods.
Last but not least, there are the slightly elevated liver counts that we already discussed in the previous section. On their own, none of these issues are particularly concerning. Even taken together, they are still not especially alarming.
Things are not going off the rails here, but you can see why my team wants to keep an eye on all of these issues to make sure nothing develops into something that needs intervention. Right now, none of these rise to that level, and the hope is that it stays that way moving forward.
Resolutions
While not as long of a list as the ongoing issues discussed above, there is one thing that had been lingering and is finally starting to clear up, and that is the swelling.
I started experiencing mild edema after returning to work last October, around the two to three month mark. Essentially, it was just some fluid retention in my legs, which made sense given the shift from being relatively sedentary with my feet up most of the day to sitting at a desk for eight plus hours at a time.
While not painful at all, it was noticeable. That is part of why I am so glad it has finally started to resolve itself.
It seems my lymphatic system has finally started to catch up, and it is now moving fluid much more efficiently throughout my body. Over the past few weeks, I have hardly noticed any swelling at all.
A small victory, but a victory nonetheless.
Hair
Looking rough, but growing like wildfire. Below are two photos, both of which were taken on day +250.
And here are the photos from the last update. These were taken on day +199.
It is now at the point where I expect I will be getting my first formal haircut before my next update goes live, and I genuinely cannot wait.
In terms of post-transplant milestones, getting my first haircut may not be as significant to my care team as some of the more medical specific goals that we have, but it is absolutely a personal milestone that I will be celebrating.
After eight to nine difficult months, it will be nice to look in the mirror and finally see someone a bit more familiar.
Mental
My mental health over this stretch has admittedly been a mixed bag. Mostly good, but definitely a few periods where I have felt more down or anxious about everything.
I think the source of this comes from the disconnect between how I am feeling physically and what I am currently able to do at roughly eight months post-transplant.
From the start, I think I have done a good job of accepting the reality of my situation. I understand that everything we had to do, and the extended recovery period I have been navigating, has been necessary for my long-term wellbeing. I have not fought that at all.
That said, I have been feeling well and have been more eager to start living my life a bit more again. The feeling is not dissimilar to how many of us felt after the first few months of COVID had passed. The lockdowns and precautions started to get a bit old, and I find myself in a similar sort of situation now.
Ready to start doing more things, but knowing deep down that it is not quite in my best interest yet.
It is a difficult spot to be in, but I have been doing my best to handle it in a productive way. Right now, that looks like slowly reintroducing myself to real world activities, planning ahead for the rest of the year, and trying to appreciate the slower days as much as I can.
What I am trying to say is that patience is the lesson I am being taught right now, and while I am far from a perfect student, I am trying my best to learn nonetheless.
Exercise
My exercise habits over the past few weeks can best be described as maintenance. I have not really been pushing the envelope in any of the main areas I typically focus on, and it has been more about finding balance than anything else.
Cardio
That said, I have still been out and about quite a bit. Below are screenshots from my Strava account that show what my last full week of training looked like, along with the overall trend for the past month or so.
As you can see, I reduced both my walking and running mileage for a couple of weeks there. I think I was just a bit burnt out and needed to take things easier for a little while.
This past week was a good one though. I walked a bit more than usual and finally broke through the thirty-mile week barrier for running. If I am being honest, I don’t think I have hit thirty plus miles in a week since training for my first marathon back in 2024, so it felt good to be able to just casually do that at eight months post-transplant.
While I am very happy with that, I did learn the hard way earlier last week that my body does not really remember how to train in the heat. So, over the next few weeks, I am going to try my best to maintain higher mileage to hopefully help my body adjust to the warmer weather a bit more quickly.
Unfortunately, I think the discomfort that comes with that is just gonna be one of those things I will need to push through until my body adapts.
Strength Training
My strength training also took a bit of a detour during this period. I had been at it pretty hard since January, so again I am chalking it up to just needing a bit of a break. The plan now is to ease back into it and get back to a level of consistency that I am happy with and that will progress me towards my goals.
For a more detailed breakdown of what I have been doing strength-wise, I would recommend checking out my Post-Transplant Health & Fitness: Six Month Update. My routine and overall training philosophy have not changed since then.
Social
As I have hinted at throughout this post, I have started to ease back into real-world activities a bit. Nothing major, just small outings here and there that have helped me get used to being a functioning member of society again.
I still have a long way to go on that front I think.
Before I get into it though, I want to be clear that I am only doing these things because of how my recovery has been progressing. I have tried to take my counts, my care team’s recommendations, and my day-to-day energy levels into consideration to make decisions that respect my recovery while still allowing me to live my life a bit more than I have been up to this point.
I hope that makes sense. If you are in a similar stage of recovery, please be cautious and make sure to weigh the risks versus benefits of each outing before jumping fully back in.
Entertainment
While I am really not doing a ton in terms of outings, I have found a lot of joy recently in taking myself out to the movies.
I love movies. I always have. I think it stems from the deep appreciation I have for stories in general. I love to read, play video games, watch movies, etc. If something sounds like it has even a halfway interesting plot, I am usually in.
Stories have helped me a lot over the past year. More than just about anything else really. It is something I could easily write about at length, and maybe I will in a future post, but for now I’ll just tell you something you probably already know if you have ever picked up a really great book or watched a really formative movie, and that’s that stories absolutely hold power.
It lies in their ability to take you out of your own troubles for a little while, and even more importantly, their ability to offer you a different perspective or way of thinking about things.
Because of that, getting back to the theater has been therapeutic in a lot of ways for me. It’s something I can do each month that gets me out of my apartment, exposes me to the outside world a bit, and helps me feel a little more like a normal human being again.
Hard to put a price on that.
Connection
The one “big” outing I had during this period was attending the Young Adult Cancer Conference that was put on by Dana-Farber’s Young Adult Program (YAP).
The event this year was hosted at the Omni Hotel in the Boston Seaport area. It was essentially a day full of activities and workshops meant to bring young adult cancer patients in the Boston area together. Below are screenshots of the itinerary to give you a better sense of what the conference actually consisted of.
I will be the first to admit that I am far from the most outgoing person. When it comes to events like this, I am usually pretty skeptical and often try to avoid them. This time, I chose not to follow that instinct, and I am really glad I didn’t.
Something that I realized as I was going through the transplant process was that connection really is everything. I had some awareness that I was lacking in that area before all this but it took going through everything to make it really apparent and impossible for me to ignore any longer.
I told myself that once I got through everything, I would start doing things a little differently. Seek out the connection that I knew that I was missing a bit from my life. Attending this conference was my first real step toward following through on that.
While I am not going to labor on about the whole day, I will say that I had a really nice time and there is absolutely something to be said for being in a room full of people roughly your age who have gone through, if not the exact same thing, then something very similar.
Connection in a setting like that is hard to avoid.
Closing Thoughts
Well, there we have it, over 250 days of recovery in the books already. Like I have said a few times throughout this post, I am feeling really well and am very happy with where I am right now.
It has not all been perfect, but if you had told me before all of this started that I would be doing this well at eight months post-transplant, I think I would have been over the moon.
Here’s to even better days ahead.
Talk Soon,
– Ethan
Resources
External links directly referenced in this article:
- Hemoglobin
- Hematocrit
- Neutrophils
- T-Cell Test
- T-Cells
- B-Cells
- Metabolic Panel
- AST
- ALT
- Bilirubin
- Alkaline Phosphatase
- Graft-Versus-Host Disease (GVHD)
- Hydrocortisone
- Hemorrhagic Cystitis
- Cytoxan
- Urinalysis
- Mucoceles
- Edema
- Lymphatic System
- Strava
- Dana-Farber’s Young Adult Program
Long Way From Home 
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