On Gratitude: Is It Too Dramatic To Say It?

I've started writing this post more than a dozen times in my head. The problem is that every time I dip my toes into the topic of gratitude, it feels like I'm swimming in a sea of cliches. I think that's why I struggled to write something to my anonymous stem cell donor for so long.  In the end, what I sent to my 20-year-old donor felt watered down by that same ocean. It's so hard, even for me who has been writing about cancer for years, to put the feelings in words. More than that, it's hard for me to even process the emotions floating around inside my head in order to first understand what I feel, and then turn those feelings into meaningful words.

It's also hindered by the fact that while I like to string together a few well-crafted sentences from time to time, I quietly step aside from melodrama. I tend to downplay things instead of pumping them up and have a somewhat pathological need for truth in storytelling. So much so, that I'll find myself self-censoring phrases like: "that was the best ever" and "you saved my life" because, if you say something was the best ever, it kinda feels like you can't say that again, unless you're constantly topping yourself and downgrading your previous best-ever experiences. Maybe I need to allow a little more drama to seep through. And maybe, even by my overly strict standards, it's still possible to say I've had plenty of drama these past nearly two years.

For here we are now two years out from when shit got real, as they say, and 16 months post transplant and just now, I'm  starting to understand this and the magnitude of what has rained down upon us since 2022. It's been a gradual process as I rowed against my mental thought current. See, for 10-11 years, I was a cancer patient  without ever really being sick. I didn't feel sick (except for a couple days over those 11 years immediately post chemo); I didn't look sick (never lost weigh dramatically, or lost hair); I didn't act sick. I exercised, traveled, worked - all regularly. So for all this time, I never thought of myself as sick. 

That all changed, of course in late July/early August of 2022. With a belly full of tumors and 10 days of unrelenting pain, it's not overly dramatic to say I was sick, really sick. Sick enough to be hospitalized for four days; sick enough to require immediate chemo and then, when that put me in full remission, still sick enough to try to wipe out my immune system completely, and replace it with donor stem cells.

So it's not dramatic to say that I was battling some serious health issues. Even after the rapid effects of the R-CHOP chemotherapy got me back on my feet, I was still staring down the prospects of an allogenic stem cell transplant. And it's hard to be in the hospital for four weeks, watching your white blood cells be obliterated to zero before they climb back up to a "safe" amount - and not be defined as sick. But this time it wasn't the lymphoma that was  making me sick, it was the treatment.

And of course the recovery, which lasted, in phases for a full year. Well what was that then? Sickness? Recovery? Normal? Was I sick when I was home but isolated in my room, unable to see anyone besides my family; when I couldn't leave the house except for the backyard; couldn't interact with my dogs; couldn't eat anything not prepared in my kitchen; couldn't contribute in any meaningful way to keeping the house in order (no lawn care, no cleaning supplies, no vacuuming)?

Was I sick when I had weeks of Graft Versus Host Disease (GVHD)-induced GI issues which were eventually controlled by an additional anti-rejection drug. Was I sick when I missed Matt's college graduation?  

Yeah, I was sick.

And yet, even now I still blanche when that word is used. It's come up recently in casual conversations  - more a reference to a point in time, like that time when Michael was overseas,  or remember back during the pandemic, or hey, we once lived a slightly different version of our lives. But I'm trying not to correct the term, and even use it myself. It is not dramatic. It's just accurate.

Maybe my mind has finally caught up with reality. Or now that I'm feeling good, my mind can afford to admit that there was a time when that wasn't so. And I'm grateful to be on the other side of that, but again, grateful seems too weak a word.

Every day. Every. Single. Day... my life is full of impossibilities - full of things I could not do as little as three, six, nine, or twelve months ago. Little daily activities like getting fresh bagels from our favorite store or eating restricted foods like deli meats or soft cheeses, or having a beer; social actions such as simply going to a store without a mask, or going to a restaurant with my family. Work things too - like having in-person meetings, taking the commuter rail into Boston. It's an endless list of things for which I'm truly grateful, culminating in a recent week long trip to Spain to visit Noah as he wrapped up his summer study program. Flying, European trains, eating out, going to crowded tourist destinations, staying in hotels? Unfathomable a year ago.

All of these things that make up some semblance of normal living were simply not possible. And so while I may shy away from declaring that I'm grateful to be alive, I'm quite comfortable to say how immensely grateful I am to be living.

And that's not being dramatic. 

--Michael

And now, some photos from Spain

La Sagrada Familia (or most of it)

Inside La Sagrada Familia (photos don't do it justice)

From the top of Barcelona

Madrid Plaza Mayor at just past 9 pm, relatively empty as the Spain-France match had already begun

My favorite Tapas dish: Olives infused with Campari

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. 

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

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. 

Day+ 142: No News is Good News

It's been more than a month since my last post and the old adage, "No news is good news" holds true. It's been a good month. While a month ago my taste buds were mostly back to normal, as Miracle Max might say, mostly normal is not completely normal.  These days, food tastes like it's supposed to, and except for the few restrictions that will remain for another six months or so (cold cuts, soft cheeses, raw honey, sushi, mainly), I'm pretty much eating like I used to. I've even managed to venture out to a few restaurants with outdoor dining. 

Even ice cream, which had been somewhat of a challenge for my system as I was, temporarily it seems, lactose intolerant, has worked its way back into my diet on a regular basis. And for me, that's about as normal as it gets.

While I've started running again, both pace and distance are frustrating. I realize I'm not even five months post transplant, but I look forward to the day when I can jog at something close to my pre-transplant pace for at least a couple of miles. We'll get there. Eventually. 

The big appointment coming up is on Wednesday when we go in for PET/CT scans. These are routine post-transplant scans. Today, I'm feeling pretty sanguine about it, but anytime we're looking inside me to see if there's anything growing, it's inevitably going to produce some anxiety. Two weeks ago, I had a bone marrow biopsy -- a little less fun than a PET/CT scan. The results seem like good news but I can't really understand the pathology report. We'll hear more about it on Wednesday when we see my NP after the scans.  The good news is that at Dana-Farber scan results are always available by the time you have your exam appointment. So between lab results, bone marrow results and scan results, we'll get a lot of info on Wednesday. 

Day +108 Give or Take

Colt State Park, Bristol, RI on a recent walk

I went to our local bagel store this morning. It was the first public indoor place I've gone to that's not a hospital in four months. It was a calculated risk: I'd be in the store less than five minutes, I would need to touch very few things, and I would be masked. But there would be maybe 10-15 unmasked people in a relatively small footprint. 

The transformation to normality happens in tiny increments, the progress of which can be hard to notice in the minute, like watching your kids grow up (pretty much there), or your hair come in (not yet). The past weeks have been good ones, driven largely by two related events. The GI issues that were affecting my daily life have subsided, and at +97 days, just shy of the advertised 100-day milestone, I was cleared for take out food. Together, this has meant more options for eating. In the last two weeks, we've had Chinese food, pizza, Thai food, and of course bagels. It's also given me the confidence to restore morning coffee to my daily routine. 

First Take Out Meal!

But it's not just the return of a more normal course of meals. I've been walking a bit more each day and noticing that the small inclines I encounter on my daily walks are no longer leaving me short of breath. I won't be running a 5K anytime soon (hopefully in 2024!) but I was able to slowly jog about a quarter-mile last weekend. 

As we come up on the four-month mark, it's tempting to accelerate the return to the way things were -- to begin to socialize more with friends and family, to do more around the house, to return to my office occasionally, to frequent non-crowded stores.  But on this marathon of recovery, we're only mid-way through the race. And I may be having a good couple of miles, so to speak, but there may be tougher stretches to come. My blood counts may wobble; we may need to make adjustments. 

So before we hit fast forward, we'll just pause and enjoy the subtle changes -  taking longer, faster walks; requiring fewer hours of sleep (in the first couple months, I needed about 10-12 hours a day!); having more energy; and of course, eating fresh bagels. 

Along the bike path in Barrington, RI on a recent walk

Day +95 - Ups and Downs

 Well, as Stacy summed up so well on our Caring Bridge site, it's been an up and down couple of weeks.

The down being that the GI issues which have been a constant side effect continued to the point where I had lost weight and was a bit dehydrated. It also threw some of my labs off. So that meant some IV fluids and a colonoscopy later in the week. The hunt was on for the cause of the persistent issues: perhaps a GI infection or perhaps GVHD (graft versus host disease) of the GI tract. We also reduced the amount of magnesium I was taking, in the event that was bothering my gut, too. 

The up being that post-colonoscopy I started feeling a bit better. And the pathology from the procedure confirmed no infection, but evidence of mild to moderate GVHD. So we've started on a mild steroid that targets the GI tract, and doesn't have the same immunosuppressive side effects that a stronger steroid (such as prednisone) has. And between these different interventions, these past 7-10 days have been about as good as I've felt in weeks, if not months. 

We return for a visit on Wednesday (day +97!) as we seem to be back to weekly visits for now, but hopefully we get good news that labs are continuing to improve, and we are clear to move off the neutropenic diet. That would mean bring on the take out food!  We'll see in a couple days.

I'd be lying, though if i didn't say the ups and downs have been a struggle. It's hard to see the light of progress through the gray down days. Hard not to obsess about every abnormal lab result. A little knowledge is a dangerous thing. But having weeks like I've had of late - which included a couple of outdoor meals in the backyard with family! -- really help shine the light bright enough to help cut through the darkness of the next valley.

I've also been struggling with cabin fever. Of course, we're practiced at the whole lock down thing, but during the pandemic, when everyone was locked down, we were all in it together. Now, I'm locked down while the rest of the world is unchained, free to dine out, go to stores, sporting events, meet in person, and generally carry on. Sometimes it's hard to watch the world go by but I know I'll get there. It's just going to take a few more months.

Day +80: Lazy Writing and Random Thoughts

 The posts are slowing down. The days are speeding up. I have a collection of ideas in my head but no coherent theme, so this post will live up to the blog title; it'll just be me thinking out loud. In fact, we may go the old-fashioned, lazy writer route: bullets.

• Sunday marks Day +80 since transplant and so we are less than three weeks from the potential return of pizza, bagels, and Thai take out. That wouldn't have excited me as much 2-3 weeks ago when a lot of food tasted either very salty or very cardboard-y. But now it's maybe 80-90% normal and so the idea of being able to do take out is extremely appealing, particularly because it might also mean the opportunity to go to a restaurant with outdoor seating.
   
• Equally important is that Day 100 marks a milestone when a neutropenic (low bacteria) diet is no longer necessary. I'm not sure what other doors open at day 100. I'm not going to be heading to a Taylor Swift concert anytime soon... or ever.  Crowds and colds are still dangerous to me. To give some perspective, at nine months post transplant, I start getting many of the vaccines that I had as a child... but with my old immune system. For the next six months, even if it's safer to go out, I still have no active Covid immunity, let alone any other immunity. So it will still be a while before I'm socializing in real life, and not on my laptop. Good thing masks are somewhat normalized now. 
  
  
• Speaking of colds, I had the thought the other day that one way to approach some of the lingering side effects is how some people approach a mild cold. There are some colds that knock you out; but for many, you just carry on about your life with a bit of it's-just-a-little-cold attitude. Maybe you drink a little more orange juice, try to get a little more sleep, but life goes on. 
  
  
• And then I had the polar opposite thought as I glanced at my blood count chart for the hospital. There was almost a full week when my white blood cells were barely detectable; where my platelets and red blood cells were so low that I needed transfusions. It's just over two months later and I'm living a pretty normal day-by-day existence, albeit with a few more pills and a lot more isolation. Sometimes I forget how far I've come in a relatively short time.
  
  
• It certainly helps with the isolation to have the boys home. Granted, it introduces the potential for more germs as they are out and about. But we're being careful and I've gone from seeing one person a day to three! And bonus: I like seeing these people!
  
  
• We head in to Dana-Farber on Monday for my now bi-weekly MD appointment. Hope the labs bring nothing interesting to report, but if anything odd turns up, I know my team will deal with it.

Day +65: Windy Roads, Coffee and Wings

This has been a big week. Yes, Matthew graduated from college. And yes Noah finished up his freshman year at Lehigh. And yes they’re both home. And that's great.

But that’s not what I’m talking about. 

This week I started having coffee again! Man, I missed coffee. But what makes it a big week is not just that I got to drink the coffee, but that it tastes like, well, coffee. Which is a big deal. For the better part of two months food just hasn’t tasted good with very limited exceptions. And that made eating more of a chore than something to look forward to. But somewhere around day 54 or 55, food started tasting more like its normal self, and my appetite simultaneously returned. I started looking forward to dinner instead of dreading just making it through it. And tonight was the culmination of that when Stacy used her new air fryer to make a variety of really tasty chicken wings. Yum. 

In the long serpentine path to recovery, it’s another corner to turn. I remember talking to my brother, maybe around day 35 or so and I was having a particularly challenging weekend. But the next day, it felt like my energy levels were climbing and I had turned a corner. Then last week, I started working and with that, I turned another corner. And now my taste buds are back and that’s yet another corner turned. I'm still a long way from recovered, and  the challenge with a winding road is that it’s really hard to see what corners like ahead. I know there are more to come but here at day 65 I feel like the path is perhaps straightening out a little bit.

Day +54: Balance

Life is a balancing act. So too, is managing my meds. It starts with tacrolimus, an important anti-Graft-Versus-Host Disease (GVHD) medicine. Of the seven different meds I'm currently on, this is probably the most important. Because we know kidneys (particularly my kidneys) are sometimes not a fan of tacrolimus, we've been adjusting the tacrolimus to see if my creatinine (a measure of kidney function) levels will return to normal.  So we adjust the daily dosage, check levels and see where we are. But if we drop the dosage too much, and then the tacrolimus level will fall too much.

So the last couple of weeks have been just making sure we've got things right. And it seems like things are moving in the right direction. Creatinine levels are coming down, and tacrolimus levels are within normal range. Meanwhile, potassium levels are hovering in the high but manageable range. 

We'll check it again at next Monday's appointment and we may even talk about going to biweekly appointments if my lab work supports that. We'll see. There's definitely a comfort level being able to see my NP each week, but the drive in, the waiting, the being surrounded by a bunch of people (all masked, of course), I could do without that weekly routine. And if the care team feels I'm good to go to a two-week schedule, then I trust them. 

In the meantime, importantly, my energy levels are doing real well. I still need a good 9-10 hours sleep. But there are also signs that my appetite and taste buds are slowly coming back. That helps everything. It makes eating less of a chore; it helps my digestive system; it gives me energy. 

So does working. I started on an official half-time schedule. It's great to have the social connection with all my colleagues again. And it's great to use my brain for something other than a crossword puzzle! Plus, it helps make the days pass quickly. But I've been careful to schedule some downtime each day so I don't overdo it, because here too, balance is key.

So far it's working out. 

 

Day +43 - Chimerism and other Lab Tests

Since being discharged from the hospital, I've been returning each week for bloodwork and an appointment with my care team (my nurse practitioner and/or oncologist). Dana-Farber is amazing at the speed in which they process lab results. There's usually an hour between lab appointment and exam, and before I'm called into exam, most of the major lab results are in. (Sometimes that's not a great thing as I see it immediately in my portal without the aid of the professionals to interpret the results.) In theory, a visit could be as short as 1.5 - 2 hours. Unfortunately, each week, that seems to get extended for some reason. The first week, we added about 3.5 hours to get  blood and platelets. The second week it was to be sure I had no fungal infection - so we added on a CT and MRI appointment. Last week, some elevated lab work led to a quick kidney ultrasound.

Whose Cells Are They Anyway?

We'll get to the lab work, but I wanted to start with the cool test - the molecular chimerism test. Biologists a out there, please correct me if I get this wrong, but as I understand it, using my donor's DNA and my DNA, they evaluate my T-cells, granulocytes and one other cell type (which escapes me now and is no longer available for me to see on my portal) to see what percentage are my cells versus my donor cells. Right now, my T-cells are 84% donor and my granulocytes are 99% donor - which is exactly where they're expected to be right now.  It's just over six weeks since the transplant and the stem cells are making a nice little home in my bone marrow, churning out all the cells they're supposed to. That's pretty damn cool!

What's neither cool nor exactly where they are supposed to be are my creatinine levels (measures kidney function) and my potassium level (too high). There are theories for both, and it all may be related. The creatinine might well be affected by the tacrolimus, an anti-rejection medicine, I'm taking to prevent Graft Versus Host Disease (GVHD). For some patients, it just seems to affect kidney function more than others. So what do we do? Well, we start by cutting the tacrolimus dosage by half and will evaluate at Monday's appointment to see if that's had an effect. If that doesn't move the needle, we'll talk about switching back to another anti-rejection medicine.

The high potassium may be related to the fact that my kidneys haven't exactly been bringing their A game. But it also might be something as simple as my diet. In a world where things weren't tasting so good, bananas and protein milk shakes (with bananas) were daily staples. Add in some of the other high-potassium foods I've been eating and that could be the answer. So we gulped down a lovely little medicine to help get rid of some of the potassium and changed the diet up. We'll see what the numbers say on Monday.

Keeping My Mind Active

In the meantime, it's been a good week. Since Monday, I've had good energy and have started returning to work 2-3 hours a day, something I'll continue for the next few weeks. It's been such a mental boost to do so. For one, it gives a little structure to my day to have a couple zoom meetings (though I hope not to go back to my 8-10 daily zooms anytime soon!). But more importantly, it gives me something to concentrate on; something for my mind to do. Since the first couple days in the hospital, boredom has been my constant companion, work is a welcome respite. 

We'll see what the numbers look like on Monday. If we have normal lab results, maybe we can have a quick day in Boston. It hasn't worked out that way yet for us. Maybe Monday will be a first.

--michael

Day +32: Seize the Dishes

Before Glennon Doyle became a best-selling author, podcaster, memoirist, and many other things, she was a blogger who started a blog called Momastery. Back in 2012, this post "Don't Carpe Diem" was making the rounds of social media in a pretty viral way.  I still love the essence of that post, which is that trying to seize the day puts a lot of pressure on you. And if you can just seize a couple of the magical moments that happen with your kids each day, that's a success.

I'm trying to adopt that philosophy as I move through the recovery process. Sometimes, I find those moments when Stacy and I are watching a movie together and life feels normal; or when I'm sitting out on the back patio with the dogs nearby and the breeze blowing; or, when I'm doing the dishes after dinner. Stacy typically handles most of the dinners that involve cooking, and not grilling out. And if she's going to cook, no matter how many pots and pans, she uses, then the least I can do is clean up the aftermath. But until the last few days, washing dishes seemed a bit out of reach for me. The other night, however, I was up for it and Stacy allowed it. And as I stood at the sink, scrubbing the remnants of bolognese from the pot, I felt one of those moments, and it felt good.    

32 days post transplant and it's not as if one day, I'm going to wake up one day and everything will be back to normal. Change comes imperceptibly, like the changing of the season. One day, you might notice the new buds forming on the maple tree outside your bedroom window, but you don't see all the steps that happened along the way to get those buds to bloom. 

I'll keep taking those little steps behind the scenes - if it's going for longer walks, working for a couple hours, or doing the dishes.

Day +27: A Week Home

Monday, I headed in for my second follow-up appointment. Like last week, I expected I'd get platelets and/or blood to boost my red blood cells. It's pretty par for the course, which describes much of this past week - routine. That doesn't mean it's been easy - it's a lot of daily cleaning for Stacy, not to mention taking care of the cat and dogs, which are mostly off limits to me for now, and taking care of me.

For me it's a lot of managing the ongoing side effects of my budding immune system and chemo-ravaged body. They've been pretty mild but sometimes not that mild, with occasional nausea, diminished appetite and altered taste buds. Not a great combo, but we're working through it and each day gets a tad better. For a couple days I had sinus congestion and a constant headache - a challenge when you can't take Advil or Tylenol. But that seemed to mostly clear on Sunday and so feeling better these last few days and here we are at day +26, more than a quarter of the way to day 100, a magical date when things open up a bit.

Even better news is that my blood counts have continued to climb and I needed no blood products yetserday! My platelet level jumped to 43k (10k is the level where they're thinking about giving you an infusion) and my hematocrit level also climbed sufficiently to avoid needing any red blood. Altogether it's good news and I continue to be on track. We are still trying to figure out why I have an elevated level of a marker for a fungal infection - it may very well be nothing, but we continue to investigate it - so we'll do some more scans next week just in case it's related to the sinus congestion, or if there's a fungal infection lurking somewhere in the body. My care team isn't worried and I'll try to follow their lead.

Try is the operative word. I'm working hard on acceptance and patience. Instead of hyper-focusing on every little twinge, I need to accept that this is a process - a long one, and not without it's stumbles and half-steps backward. And last night and this morning was definitely a step backwards. The sinus congestion and accompanying headache that had dissipated came back strong last night, bad enough to keep me up most of the night. I finally broke down around 3 am and took some Tylenol, which gave me a few hours of sleep. And I spoke to my NP today and am now on Flonase and Sudafed which is helping, and I have permission to take Tylenol as needed. 

As I slowly start to contemplate how I will start to add a few work hours to my daily routine, I need to remember that the milestones will come, slowly and surely. As always, it's hard to be rational when you're laying in bed with a washcloth on your eyes. Stacy's been amazing at constantly talking me off the ledge with little pep talks and rationality, reminding me to eat... little things. And it was only two weeks ago, my white blood cells were barely detectable and my platelets were at 6k. Now my white blood cells are halfway to normal levels, and my platelets are at 43k. It's a process. But it's progress.

Day + 19: Home at Last

 Man, it's good to be home. I was discharged from the hospital yesterday as my white blood cell counts continue to climb. Although I couldn't leave without a quick infusion of platelets. As I might have said before, white blood cells recover first and red blood cells and platelets lag behind. They'll eventually climb back.

Out of the Woods and Into the Forest

Coming home is a big step for sure and I'm feeling great but  still managing a few side effects, appetite, nausea and fatigue namely, but overall, I did really well with my first step in this long process. But it is a long process. The in-patient process - the chemo and the infusion of new stem cells is just the beginning of the journey. It's great to have tolerated the first step, but having cleared the woods, the forest looms as we begin the home isolation process. Maybe looms is too strong a word, but as I leave the protective enclave of floor 4C, as I enter the world ever so cautiously, we still have another 81 days (give or take) until we are clear of this next step. Day +100 is when things open up. The food precautions lift a little bit; the isolation requirement eases a bit; life starts to get a little more normal. But we were reminded of how even the little things can pose unforeseen challenges. Today, on my first day at home, I got a paper cut from opening a box of crackers. Not a big deal... unless you are very low on platelets which makes clotting a challenge; unless you are at risk for infection. Fortunately, we dealt with it, but it was a quick reminder that I need to be careful even in what were usually 

Things I Was Looking Forward To

Back on Day +4, I said that I was looking forward to when coming home were, in this order:

Cracking open a window; Going outside; Company; My dogs; My smart TV; Food. Fortunately, the weather cooperated and on my first day home, I was able to spend some time outside, with the dogs and Stacy, just chatting and enjoying the fresh air. We took a walk around the block -- much better than 28 laps around the floor. And Stacy cooked a chicken panang dish that we love with fresh vegetables and rice and it tasted great. Plus, a little Ben & Jerry's for dessert. Yum. And I'm writing this as I'm watching the Red Sox lose to the Pirates on a TV that I can actually see. So check, check, check, check, check. 

On the pictures at left, that's me and Buttercup - don't let her smile fool you. She's not overly happy to see me; she just loves to be outside and run. Below, Rocco, our needy child who is very happy to have me home.

Day +16: Here We Go

Yesterday, the much awaited white blood cell count growth began, moving up from 0.04 to 0.13 k/ul. (By contrast, normal range is 4.0 - 10.0.) Given that it had only inched up from 0.02 to 0.04 in two days, that's dramatic growth and made me more eager than ever to see what the counts would be here on day +16.

And sure enough the trend line continued this morning with the white blood cells climbing to 0.45. The key count is my absolute neutrophils which have gone from unmeasurable to 70 yesterday to 360 today. When I'm over 500 for two days, it's time to go home. Right now the plan is to be discharged on  Monday. The idea of going home in two days is as surreal as it is exciting, particular as my platelets were low enough to require an infusion again today. I'm told though that platelets are the last part of the immune system to generate, so it's not unusual to go home, knowing that I'll need a platelet infusion or two in the coming week(s).

As of today, I've been in the hospital for about three-and-a-half weeks. That means nearly 50 nurse shifts and at this point, I think I've been cared for by just about every nurse and patient care assistant (and a few student nurses) on the floor. I'm lucky to live close enough to Boston to be able to be treated by the caliber of nurses, PAs and physicians who have seen - and will continue to see -- me.

In addition to their calmness, professionalism, kindness and skill - which I have come to take for granted -  what I appreciate the most is their empathy, compassion and optimism. In the agonizing slowness of the hospital life, in the darkness that can make optimism hard to muster, it's incredibly uplifting to see and hear their smile behind their mask and to bask in their positive energy. 

My time on 4C may be winding down, but that positivity will stay with me. Here's to the next post coming from the home front. 

--michael 

Day +14: The Absurdity of it All

 I was sitting in my comfy hospital chair, reading a good book, when I noticed the tubing that protruded out from under my shirt. It has become normal for me to go about my business - read, write, walk, nap -- all while tethered to an infusion pole. The absurdity of it all is that this now passes for normal.

It's normal to be woken up at midnight and 5 am for vital signs. Normal for me to sleep with a mask by my bed. Normal to quantify my daily bodily functions. Normal to be taped up prior to a shower. Normal to wipe myself down with special antiseptic cloths after I shower. Normal to do laps in a tight corridor. Normal to not have breathed outside air for three weeks.

Those aren't meant as a litany of complaints, but rather an observation on the normalization of things that are not meant to be normal. 

Counts today inched up and we're starting to play the "When will Michael be discharged" game. The money is still on early next week, but it might be into middle of the week.  It all depends on the counts.