Month 10 Post Transplant

The stereotype of the cancer patient is a fully bald, sickly, looking person, either in a hospital bed or gingerly walking through life and looking frail and vulnerable. That thought's been going through my head recently because it is of course not reality. It fits some patients - and I've looked at some photos from the early days of post transplant and I did look a little sick, and more than a little bald. With my hair (and weight) back, however,  there are few if any outward signs that I'm recovering from a stem cell transplant.  

As my day-to-day life slowly returns to normal, it becomes easier to disguise the effects and challenges of recovery. On the normal side, I can socialize outdoors, and we even were able to have a Christmas dinner with Stacy's parents! But that doesn't mean I'm not still physically vulnerable. I still can't dine at restaurants indoors, can't gather in a large group, and am masking in pretty much any indoor situation that doesn't involve my immediate family. I'm sill restricted from doing things that might kick up dust and other particles - like vacuuming, mowing the lawn, blowing leaves, etc. I can't spend a lot of time in our basement. I can't take public transportation. And there are some foods that remain off limits (deli meat, soft cheeses, sushi, e.g). 

I'm also dealing with a couple of mostly minor physical challenges - perpetually chapped lips and taste buds that, nearly 10 months out, are still not quite 100%. None of that concerns me. But I've been struggling a bit with lung stuff. That's my scientific description. In the summer, I had built up my running distance to a very slow, start-and-stop 2.5 miles. But in the last month or so, I haven't been able to run as I just don't have the wind. Walking our 100-pound not-so-well trained dog, mind you, doesn't faze me. 

At my next visit in the end of January, we'll do a lung volume test, which is standard protocol for the 9-12 month window post-transplant. I'm not sure what we will find, but I'd venture to guess that it won't be as good as it was pre-transplant. Now if the end result of all of this is that I can't run for a while, or even for a very long time, that's fine and I can live with that. But to be honest, I just don't know what this would mean if I do have diminished lung capacity. Is it typical post-transplant? Is it something that naturally resolves itself? Is it more of a permanent thing that needs to be addressed? How do we address it if we need to do so? 

This has all been running around inside my head these past few weeks. But I'm trying my best to not let thoughts spin out of control. It was great having both boys home for the holidays, and spending time with the extended family as well. 

As we close out the year, it's tempting to cast 2023 as an out-with-the-bad kind of year. And we've had our share of challenges. But we've also had our fair share of things to celebrate, not the least of which, of course, was my stem cell transplant. That's always the case; some years are better than others, but in  each year there is almost always bad mixed with good - darkness mixed with light. 

So rather than start the New Year with resolutions, I'll close instead with this quote I came across at Thanksgiving. It's a good reminder, and a simple but powerful thought.

“I am grateful for what I am and have. My thanksgiving is perpetual.”
-Henry David Thoreau

Here's to a year full of light. Happy New Year!

--michael

Day +240 or Eight Months Out

It may come as a bit of a surprise that I'm a somewhat superstitious soul. I blame that on my youth and my years as a long-suffering Mets fans. For the entirety of my time growing up in New York, with two rare successful exceptions in 1969 and 1973 when I was 7 and 11 respectively, the Mets were pretty abysmal. So to coax wins out of a team that lost as much or more than it won, there was a need to invoke some help from the baseball gods. And to appease them, you simply needed to follow the established superstition: when the Mets were up, you sat on the floor; when they were in the field, you sat on couch. 

Perfectly logical. 

I don't know how long I carried on the tradition, but it's probably worth pointing out that the Mets were dead last or second to last from 1977 to 1983. Who knows? Maybe I just had the whole superstition backwards. I remember watching them win the World Series in 1986 - I was in Vancouver at the time and I swear that I recall sitting on the floor as they rallied to come back from the brink of elimination in game six. So maybe it wasn't backwards, maybe the superstition just took a bit of time to take hold. Either way, I submit that as proof of my irrational superstition bona fides. 

This is what makes it hard to celebrate my milestones as success. In the back of my mind is the little superstitious voice saying, "don't jinx it." It is wholly irrational. But it's there. Wrapped up in this somewhat silly, but to some people very real notion of a jinx, is also the danger of trying to live in the future. I sometimes get caught up in thinking, well, if everything is good at 6 months, or a year or two years, well then, I'm good, right? But the honest truth is that once you've been diagnosed with cancer, for a long time, particularly when you're feeling well, you're going to be looking over your shoulder. 

By the time I had reached 10 years of survivorship from follicular lymphoma, I had stopped doing that for the most part -- I had stopped looking at the future with anxiety. Now that I'm only 8 months out from transplant, it has sort of reset the clock. And it may be some years before I get to that point again. But that's okay. It'd be unnatural for someone who went through what I've gone through not to think about what comes next. But I think I'm doing that in a somewhat balanced way. Yes, I'm still occasionally anxious about the future and how I will be doing in two months, in two years. But I'm enjoying the moment, the present day. I'm 8 months out and almost completely off the anti-rejection/anti-GVHD drugs that are immunosuppressive. And, as I said in last post, that means I can have the occasional beer -- like the one I had outside at our favorite little microbrew with Matt before he moved out.

Next month I start on the whole series of childhood vaccines and my immune system takes another step toward normalcy. It's a step in the right direction and it's all good. But I don't want to jinx it.

Month 7 Plus: Another Interesting Month

 And we thought last month was interesting. Ha!

All is good here in post-SCT land. We are now just past 7 months post transplant and everything seems to be going well, but it's been an eventful month in the family. We'll get to that, but first the health update.  My white cell counts have returned to normal as mysteriously as they had dropped. Do we know why? Nope. Are we concerned? Nah.  The rest of the bloodwork looked good, too, including the results of my Epstein Barr Virus test. We paid particular attention to that test this time around, he said, foreshadowing.

I continue to slowly taper off my two anti-rejection drugs (both the general one - tacrolimus; and the more targeted anti-GVHD drug that I was taking to address mild GVHD in my gut.) So that's good because less drugs are always better. And since the anti-rejection drugs are immuno-suppresant, less drugs are definitely better. It also means that I have been cleared to have the occasional beer or glass of wine. 

I'm also only seeing my NP or MD every four weeks, give or take and so that's good, too. 

And I was able to get both the Covid and Flu vaccine this year!  Of course, I got the Covid booster two weeks after Stacy and Matt got Covid, but fortunately through a lot of isolation, precautions, and a week by myself at a hotel, I managed to avoid Covid while the family recovered.  

So in general, except for the need to avoid crowds (particularly indoors), certain foods (soft cheeses, cold cuts, sushi, soft serve ice cream among them), and things that kick up dust and other particles (mowing the lawn, blowing leaves, vacuuming, etc.) life is returning to a mostly normal kind of pace. Even work, which was wildly busy for about eight weeks has returned to a normal busy kind of pace. 

Sunset on Sabattus Pond

That's why I'm able to write this from our temporary home away from home, up on Sabattus Pond  in Maine, where Stacy and I were finally able to go for a short getaway. We were supposed to be up here about three weeks ago, but instead Stacy was down with Noah at Lehigh, while he enjoyed a three-day stay at the local hospital. 

The diagnosis that finally came back was a severe case of mono (thus the relief of my negative Epstein Barr Virus test) complete with enlarged spleen and liver. The diagnosis was a huge relief. After the year and half of my health experiences, just the idea of my youngest headed to the ER was enough to crank up the PTSD meter.  Throw in a hematologist and oncologist consult, and it was a stressful few days, to say the least.

He had a rough go of it for a couple weeks, but Stacy was able to help him get back on his feet, and now he's pretty much back to his normal self.

And I'm happy to say, day by day, month by month, I'm getting there, too.

--Michael

Day +6 months (give or take) - It's Been a Month!

It's Sunday night and I'm sitting here on my nice sectional sofa here at the Residence Inn in Needham, MA. It's very nice. Spacious. Clean. And a nice place to spend a few days. We thought it was the safest option. Safest option, you might be wondering. 😕😕 What's that all about?  How did we get here?

Lest I bury the lede, I feel fine. But  it's been an adventurous couple of weeks. Last we checked in, I was waiting on CT results and confirmation of bone marrow scans. And after meeting with my team in early August, we confirmed that the bone marrow was clean, the scans looked good and the mutations we had seen pre-transplant - particularly the troublesome TP53 mutation, which is implicated in many cancers -- are no longer there. There's even the potential that I have a new mutation, from my donor, that might actually confer some benefit. Interesting. This swapping of genetic mutations amazes me a bit -- and it also confirms why we went with the donor-based transplant instead of my own stem cells. (I wrote about this when we first made the decision to do the donor transplant back in November. )

So all good, right? Well here's where things got interesting -- or stressful if you're actually going through it. 😟 After going in for the usual blood work and appointment on Monday, the 28th, the labs showed that my white blood cells had dropped unexpectedly, and we found out later in the week that my neutrophils were also very low. More labs on that Wednesday showed not a whole lot of improvement and my neutrophils were basically zero. So we got a little shot of neupogen,  which is supposed to give a shout out to my bone marrow to go ahead and do your job and start cranking out the WBCs. That seemed to work... or I just naturally recovered because by Sunday, when we tested again, they had recovered enough that we didn't get another neupogen shot. That was last Sunday and I continue to feel fine... even with a little houshold drama going on, which I'll get to later.

The question you are now asking is why?  My red blood cells, platelets, were all  fine, so why this singular dip in WBCs?  There are  ideas, but there is nothing definitive. I continue to feel fine. Energy is good, even as I work through what has turned out to be very busy period at work. Some prevailing theories: long-term use of Bactrim causing this rare-ish side effect (so we paused taking it for bit); or my favorite, the new mutation I picked up is causing a transient drop in white blood cells, something that has been seen before in other transplantees (although I don't know if that's one transplant recipient or many); or my least favorite, it's just some random insult to your immune system, which if we weren't drawing blood, we wouldn't even have noticed. 

Whatever the culprit, it'll be interesting to see what the lab results are this Wedneday, and hope to have a continued rebound in my WBCs so I can continue to fend off diseases... like Covid.

Because Covid is still a thing, y'all. Matt came back from a Labor Day weekend away with his friends and was sick from the moment his masked little face came into our house. He stayed mask on everywhere in the house and isolated to his room (and bathroom), which is good because he tested positive for Covid on Thursday and Stacy followed yesterday. The latter fact is crazy because she has been and was so very careful, but she was bringing him food and retrieving it, and they shared the same bathroom. I've fortunately had my own bathroom since coming home from transplant, so I'm thinking that helped. We're not out of the woods yet, but as they are feeling a bit better and able to fend for themselves, we thought isolating in a hotel for 4-5 days might be a safe option.

And safe options are what we want as we approach the six month post transplant date, which is officially next Saturday, the 16th. All this is a stark reminder of vulnerable I am, and how I have to remain very vigilant, particularly until my immune system grows up a bit.