Welcome back! I had originally planned to have a post go up between these two field note updates, but I decided to take a little break and just focus on my day-to-day, and I couldn’t be more glad that I did.
Now that I am back in the groove though, I am excited to update you all on the past month or two. It has been a period of reassuring progress in many areas, and it seems that with every week that goes by, the ground I am standing on feels more and more solid.
So, without further ado, let’s jump in.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Medical
Blood Counts
As always, we’ll start by going over my blood counts. My most recent appointment actually took place on day +302, so I decided to provide the data from that visit so you all have the most up-to-date counts.
As you can see, we are still heading in a very positive direction. With the exception of my white blood cell count, my other two main cell lines have continued to flourish within the “normal” range.
Below is a little more data breaking down the specifics of my red and white blood cell counts. Specifically my hemoglobin, hematocrit, and neutrophil counts.
Seeing my neutrophil count climb as of late has been especially reassuring, as it means my immune system is becoming more and more capable as time passes.
Metabolic Panel
You may recall from one of my previous updates that we were actively monitoring my AST and ALT levels, as both had been coming in slightly above what would be considered “normal”. Both of these values relate to the health and function of my liver, so we have been keeping tabs on them, as any further increase could indicate mild liver GVHD or some other issue.
While my AST level did increase a little, my doctor was not concerned whatsoever at my most recent appointment. It is still only slightly above the “normal” range, and none of my other metabolic results suggest any progressing issue. At this point, it appears to be little more than normal fluctuation.
We’ll continue to monitor these values, of course, but the consistent reassurance I have received from my team, along with my recent results, has allowed me to remain fairly positive about the numbers we’ve been seeing.
Vaccinations
Because my recovery has been largely uneventful so far, we were able to remain faithful to the initial vaccination timeline that I was provided, and I received five more vaccinations on day +274, roughly nine months post-transplant. The full timeline can be found below.
True to the schedule, I received the following vaccines: DTaP, HiB, IPV, PCV21, and Shingrix.
To elaborate, those are diphtheria, tetanus, and pertussis (DTaP); Haemophilus influenzae type B (HiB); polio (IPV); 21-valent pneumococcal conjugate (PCV21); and shingles (Shingrix).
While getting multiple shots at a single appointment was not fun, there is a real mental benefit, at least for me, to being revaccinated on schedule. It means that things are going well, that my team believes my body can handle it, and that I now have a few more layers of protection working for me when I am out in the world.
That said, be prepared not to feel well for a little while after this particular set of vaccinations. I cannot pinpoint any one vaccine in particular, as it may have simply been the combination of all five, but I experienced some chills that first night and general fatigue that persisted for about a week or two afterward.
Some of these vaccines initiate a fairly strong immune response, and for someone who has been fortunate enough to reach this point in the recovery process without many issues, this was really the first time my body had to respond in a strong way.
The symptoms eventually passed though, and I am grateful for the experience, as I now feel a bit more prepared for what I may encounter around the one-year mark, when I am due to receive seven additional vaccines.
Physical
On the physical front, there are not a whole lot of new issues to report. There is one lingering issue that I will be covering, as well as a new issue that appeared during this time but has since subsided.
Issues
Dry skin. I have talked about it at length in many of my previous updates, but it is still persisting and, dare I say, not getting better the way I had hoped it would be by now.
The main problem areas are still my face and scalp. While I have been using a liberal amount of moisturizer, I just can’t seem to use enough for my skin to be satisfied. It is an issue that is relatively common in the post-transplant space, so I am not overly concerned, but I am, if I am being honest, a bit annoyed at this point.
The plan as of right now is to continue to monitor and keep using moisturizer until my skin is able to get better at retaining moisture, which I have been told usually starts to improve around the one-year mark. “Probably,” if I am to quote my doctor.
Patience, per usual, is the name of the game.
The new issue that cropped up during this time was likely related to the vaccinations I received and the immune response that followed. Oh, and my own stubbornness of course. Can’t forget that detail.
I experienced what I would describe as a “lag” in my vision for about a week or two after the vaccinations. It felt like every time I turned my head, my vision would need an extra split second or two to catch up.
It wasn’t quite vertigo, and I wasn’t experiencing any real dizziness or loss of balance, but there was one instance where I took an elevator and it took a solid thirty seconds or so after getting off to feel like I was on solid ground again.
I brought up both of these experiences with my care team at my recent appointment and, since it had resolved on its own and I didn’t experience any severe symptoms, they chalked it up to the recent strong immune response and general fatigue, which I think makes a lot of sense.
I didn’t exactly adjust my fitness routine too much during the time I was experiencing these issues, so I probably didn’t do myself any favors there.
I share this with you all with the hope that when it comes time for you to get re-vaccinated post-transplant, that you give yourself time to rest afterward. Your body will thank you. I was stubborn about it, and my body absolutely found a way to let me know.
Hair
I got a haircut! As I hinted at in the last update, my hair finally got to the point where I could justify a trip to the barber. Below are two photos that were taken on day +300.
And here are the photos from the previous update that were taken on day +247.
Now that I am back in the routine of getting haircuts, this will likely be the last of the hair updates that are included in these posts.
I still have a ways to go in terms of thickness, but it is growing in really well, and it is nice to not feel the need to wear a hat everywhere anymore.
Mental
The last month or so has been full of little excursions here and there that have really made me feel like I am living some sort of “normal” life again. A trip up to Massachusetts to watch my brother run a local race, a night out at the movies, my first half-marathon, a day trip to NYC to see an art exhibit, and more.
Having all these little events on the calendar has honestly done wonders for my mental health. I remember a few months back when I started to plan what I had hoped the back half of the year could look like, should things keep going well, and as slowly as some of those days passed in between now and then, they passed all the same. Now I am finally starting to execute on the plans I laid out all those months ago.
What a feeling.
When I was telling my family about my day trip to NYC a week or two ago, which I will elaborate on a bit later, I mentioned that while I made an effort to do a lot of fun things last year, they were all slightly overshadowed by the fact that my transplant was looming on the horizon.
I enjoyed those excursions and events a lot, but it was hard to put the transplant out of my mind, as there were so many unknowns ahead.
Roughly ten months on, there are still many unknowns, but the transplant itself is in the rearview now, and I can already notice the difference in my ability to be truly present in the things that I do. The things that I get to do because the transplant has been doing what we hoped it would.
All I can hope for now is that it continues to go well, because I am really starting to enjoy myself again, and I can finally feel the weight of the last year and a half or so getting a little lighter to hold.
Exercise
Cardio
“Consistency compounds” is a phrase I have heard going around for a few years now, and it immediately became a favorite of mine after I first heard it.
Nowhere is that more evident in my life currently than with my running. As you know, I started slowly reintroducing running to my life around two months post-transplant. Since then, I have kept at it week to week, really finding my stride around the new year after returning home and coming off immunosuppression.
About a week ago, I got to test the seven to eight months of work I had put in at my first half-marathon post-transplant. Data from that run can be found below.
This race was not initially on my calendar earlier this year, as I didn’t think I would be in a healthy enough spot to handle the exposure of being around a larger group of people, but I ended up just going for it and I am very glad I did.
I went out at a pace I had no right to believe I could hold for 13.1 miles, and after about two miles, I decided to actually speed up because my body felt like it could handle it.
This was my fourth year in a row attending this race, and I managed to shave four minutes off my previous best time on that course at only ten months post-transplant. Still don’t really have the words to describe how that feels.
As it stands, my next half-marathon will be in September, and I plan on discussing what that could look like, along with what my other race plans are, in August when I put out the one-year health and fitness update. There is still a lot of work to be done between now and then though.
Work that I fully recognize is a privilege to be able to do.
Before moving on to strength training, I will share a few graphs from my Strava account of what my running and walking mileage trends have looked like recently, just to give you all a more holistic view of what my body has been able to handle lately.
Strength Training
A trend you may have noticed by now is that I usually spend a lot more time talking about cardio than I do about strength training, and that is because I genuinely enjoy one of those activities and simply tolerate the other.
Putting that fact aside, I still recognize the importance of strength training, especially as someone with the running goals I have and as someone who has been through treatment, which can have all sorts of negative impacts on muscle mass, bone density, etc.
Strength work is the foundation that can make just about every aspect of daily life post-transplant a little easier, and I have been doing my best to stay consistent week to week with my exercises.
For a full breakdown, I would recommend going back and checking out my Six-Month Health & Fitness post, as my routine has not really changed since then.
I have been making progress with the weights and resistance I use for a lot of the exercises, but there is still plenty of room for growth and many ways in which I hope to improve upon my strength training habits in the coming months.
Right now, it is still roughly five days a week rotating between chest and shoulders, back and biceps, and legs, mainly calisthenics mixed with dumbbell-focused exercises.
I have found the simpler I keep things, the better, and I imagine that same logic could also help you get started or maintain any exercise-related habit you are trying to build post-transplant.
Social
The “social” section may be a more permanent fixture in these updates moving forward, as I think it is beneficial to share what I have been up to and what I have been able to do in terms of real world outings at different points in the recovery process.
The big event we already covered was the half-marathon I ran a week or two ago. Being an outdoor event, I was not really overly concerned about exposure, and there turned out to be plenty of space once the race got started.
In addition to that, I also took my first real solo trip post-transplant down to NYC in late May to see a Keith Haring exhibit that was on display at the Brant Foundation in SoHo. This was definitely a more demanding day, but I made sure to prepare as best as I could by bringing a mask, sunscreen, hand sanitizer, etc.
I took the train from New Haven, and then spent the rest of the day getting my steps in all around the city. I covered roughly thirteen to fourteen miles avoiding public transportation and walking around the busier areas of the city, which was easier said than done, as it seemed like NYC summer was officially kicking off that weekend.
I got to see some really great art, watch the penalty shootout of the Champions League final in a bar full of Arsenal fans (tough day for them), take some great photos, and just genuinely enjoy being in the city for a day.
Looking ahead, I have an extremely busy summer planned for myself. Free weekends are going to be few and far between, but at the end of the day, we proceeded with the transplant when we did so I could get on with living my life, and I am doing my best to honor that.
As it stands, I feel well and I have some semblance of my health back. I am not going to be reckless with that, but I am not going to say no to opportunities that get me out of the house and push me towards real life again.
Closing Thoughts
I have said it a few times before, but I still surprise myself every update with just how far I have come in such a short amount of time. We are quickly approaching the one-year mark, and I am already back to doing a lot of things that I, quite frankly, did not think would be possible at this point before my transplant.
I am grateful for that fact everyday.
With that in mind, now feels like a good time to announce the next cadence change with these updates. The next formal update will come around the one-year mark, day +365 or so, and after that we will likely move to quarterly-style Field Note updates.
There will be occasional posts in between, but I am hoping there will be less and less medical details to go over as more time passes, hence the natural shift to quarterly updates.
This will allow for a little more space to explore some creative writing, as well as space to talk about certain topics or events I end up taking part in as my life settles more and more.
I am really excited for that.
From the start, continuity has always been one of the main goals for this blog: talking about the before, during, and after of going through a stem cell transplant.
The “after” is the part that I had a really hard time finding detailed examples of in my research prior to transplant, so my hope is that by sharing my own long-term experience, I can help fill that gap for the next patient wondering what their life could look like on the other side of this treatment.
So, with that said, here’s to the next chapter.
Talk Soon,
– Ethan
Resources
External links directly referenced in this article:
- Hemoglobin
- Hematocrit
- Neutrophil
- AST
- ALT
- Graft vs. Host Disease (GVHD)
- DTaP
- HiB
- IPV
- PCV21
- Shingrix
- Strava
- Keith Haring
- Brant Foundation
Long Way From Home 
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