Stop Me If You've Heard This one Before

 Have you heard this one before? Stem cell transplant recipient walks into a bar...

No? Well maybe because there's no punch line there. Walking into a bar and actually having a drink, like many things for me these days is pretty normal, and very un-newsworthy. I've been to work; been to restaurants; been on public transportation; and even been to a conference with more than 700 people. I feel a bit like a zoo animal, who after being cared for in a sheltered, controlled enclave has been released into the wild - with equal parts excitement and trepidation. 

Of course, one of the first things I did was catch a nasty little cold, which I was kind enough to share with Stacy. Then about three weeks later, I discovered another, much less nasty cold. Welcome to the wild. I suspect that this is somewhat to be expected as my brand-new immune system builds itself back up. It makes me appreciate how many precautions we took for more than a year; and it also makes me appreciate how lucky I am to be able to return to living a relatively normal life. 

The "doughnut wall" at a
recent conference. If I'm safe for
 that, I'm safe for anything.  

I'm just about 14 months post transplant. My visits to my oncologist are now spaced out to every two months - and given the amount of poking and prodding at the last two visits, that's a good thing. At 12 months, I had a PET-CT scan, which is pretty painless with just the small pinch of an IV line inserted so they can shoot you up with radioactive material. But add in a full complement of seven immunization shots and there's a definite pin cushion feeling.  

Six weeks later, that was followed by an appointment with only 2 immunization shots, but the added fun of a routine bone marrow biopsy.  I'm not a fan of the phrase "routine bone marrow biopsy" but having had 3 or 4 of them now, they are a bit routine. Not fun, but not overly long procedures - and the combination of a little ativan, a little oxycodone, and some lidocaine and it's tolerable. That said, that painkilling combo did wipe me out that evening and in hindsight, walking two miles to the train station in the 75-degree weather might not have been a great plan. But here we are. 

More importantly, the PET-CT scan was clean. And I'm pretty sure my bone marrow results are also clean - although I'm not trained to read pathology reports, so I'm waiting to actually confirm that with my oncologist.

It's a bit of a weird time, if you want to know the truth, to quote Holden Caulfield. As I move from recovery to normal life, I continue to work to tame the anxious voices lurking in the shadows. When I was recovering, my focus was on the milestones - get stem cells engrafting so I can get out of the hospital; get to 100 days to enjoy take-out food again; get cleared to go out in public a bit; get GVHD under control and wean off anti-rejection drugs; get to a year. Now without that recovery focus, it can be tempting to fall into a state of worried wellness, longing for some guarantee that at some point post transplant, I'm in the clear. But the reality is that we are never in the clear -- which sounds a bit dark, but I don't mean it that way. It's just that there are no health guarantees and to wish for them is wasted effort. 

The transplant's got me to this point and with each passing day, week, and month, it ever so imperceptibly fades a little into the background, and life itself in the quotidian routines of living and working emerge into the fore.

I'll drink to that.

Approaching My First "Birthday"

It's been an adventurous few weeks, and I mean that in a good way. I'll get to that in a moment but first some thoughts on where we are.

In just shy of two weeks - 3/16/24 - I'll mark my first "birthday." One year post transplant. It's gone by quickly and crawled by all the same. Going back to the summer of 2022 when my indolent little follicular lymphoma transformed into a nastier not-so little diffuse large B-cell lymphoma, it's also been an adventure. Four rounds of chemotherapy, not counting the conditioning chemotherapy, brand new donor stem cells, four weeks in the hospital, 100 days of relative isolation, and 12 months of gradually lifting restrictions. But as I noted in my last post, I feel as close to normal as I've felt since this all began. And that is a good thing. A very good thing.

This is what I have to focus on. How I feel today and not how I felt or what might happen. That is what living in the present is all about. And really, that's the only place you can live, right? In a week, I'll get the usual bloodwork, plus PET/CT scans and 7 or so immunizations. And I'm understandably a little anxious about what the scans might say, but it will be what it will be. Meanwhile, back in the present, this weekend  I ran about a mile and a half without any issues and that's a marked improvement over where I was a month ago. And this comes after two trips each to New York City and Bethlehem, PA (Lehigh University) filled with a long list of first-in-a-years. The adventure began with a newly discovered need for Noah to visit the Spanish consulate office to submit paperwork in person for his summer study abroad/internship program in Barcelona.  

Because Noah goes to school in PA and his permanent residence in RI, we could go to the consulate in Boston (easy) or New York (less easy), except that Boston didn't have any appointments for more than a month. So a trip to New York was our only option (twice, it turns out, but that's another story).  While the teeming nature of the city can be a lot, it is the undisputed home of the best pizza and bagels, both of which made appearances on my menu in the last two weeks. And since Matt lives only an hour away from Noah, it gave me an excuse to visit him, too. So for the first time since I can remember, I enjoyed a couple of nice dinners at a restaurant indoors, made all the better by the company. (See photos below).

It was a lot of driving to be sure, but I've always loved road trips, and I love driving in Manhattan, and just being in New York City. More to the point, as my brother said, as much effort as this might have taken, it's great that I can do these things now. Not something I could have done even a few months ago. But something that is completely possible today. This too, feels a lot like living in the present.

I have to admit that this return to social activities is both exciting and a little bit jarring. After living in this state of mostly isolation, emerging from the protective cocoon as I've been doing over these past weeks is occasionally unsettling. I'm not quite jumping on mass transportation just yet, but even that too will happen soon enough. After all, someone has to go visit Noah in Barcelona this summer. Might as well be me.  

The boys at Matt's apartment

Noah, pre-dinner, at the
Apollo Grill in Bethlehem, PA

Matt, Noah and at
dinner (and yes a beer!)
 in Ardmore, PA

The Power of Belief

These last two weeks, as I've hit the 11-month post transplant mark, I'm feeling about as normal as I've felt in nearly a year. Part of this is due to a cautious return to limited social activity; part is due to the absence of any troubling symptoms. And part of it, I believe, is due to the power of belief.

Let's back it up a bit.

In the days leading into my last appointment, I was anxious about my lungs. The few times that I had run outside, on unusually mild days (in the 40s) in November or December, I was having some post-run issues. Nothing that would rush me to a doctor's office, but enough to be noticeable. I had my theories. So did Dr. Google. But at my last appointment a couple weeks ago, my lung performance tests were normal - slightly lower than they were pre-transplant, but within normal limits. And on seeing those results, and examining me, my doctor (not Dr. Google) had little concern.

So I did a little experiment. Last weekend was mild again and so I did a very short run/walk outside; this weekend I did a similarly short run on my treadmill. And the results: a little post-run cough/discomfort last week, nothing this week. With that, my self-diagnosis returned to cold-air intake -- which was what I initially thought it was until my imagination and the Internet got the best of me.

While I do think that the cold air and long absence from running may be part of the issue, I also think there's something to the fact that I had permission to believe that there was nothing wrong. There's a lot of power in that -- in believing you are okay, that you should be okay, and that you have permission to be okay. Believing isn't going to shrink 16 centimeters of tumors in your abdomen, but I do believe that it has a role, particularly in recovery.

There have been other contributing factors to my relative normalcy. Almost all the food restrictions that I was following have been lifted! Deli meats, soft cheeses, honey -- pretty much everything but perhaps sushi or raw oysters, which weren't going to show up on my shopping list anytime soon anyway -- all good, now. We celebrated with a fancy blue cheese from a small cheese shop here in town, and more than one delicious sandwich these past couple weeks.

Coinciding with open season on missed foods is the full return of my taste buds. I noted in the last couple of posts that food was tasting close to normal, but in some cases, still not 100%. We seemed to have traveled that last stretch of road to normal and everything's tasting great. Particularly the blue cheese.

That's good, because I was also cleared to eat at restaurants... indoors. There's still enough respiratory junk going around that I'm going to give it a couple more weeks before diving too deep into the dining scene, but it feels good to know it's possible. My next appointment is in mid-March as I approach the one-year mark. That means scans, blood work and a whole bunch of immunizations. I'm sure the scans will provoke some anxiety as they approach, but I'm going to give myself the power to believe they will be all clear.

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