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. 

 

Day +12 - Are We Engrafting?

 Each day in the hospital passes slowly, tortoise-like in that you barely notice the day moving, but time passes quickly. It's hard to believe I've been here for 19 days. 

Starting on Day +5, I've been getting a shot of Granix which is aimed at boosting cell production, which has been decimated from the four days of chemo/conditioning I received before the stem cell infusion. Yesterday, after a good frozen food dinner, courtesy of my caregiver, chauffeur, and loving wife, and  my sixth shot of Granix, I started feeling markedly better in the evening. And it's got me wondering if I've turned the corner and my counts will start showing growth. If not, and this is how I feel with depleted counts, then that's good, too.

We'll find out soon enough when the morning labs come in...

A bag of platelets
being infused.

And the results are in. No, not engrafting yet. But in all honesty, I kind of knew they wouldn't be climbing yet. Dr. Soiffer and others thought it would be around day 14-16 when they start climbing so I'm still a couple days away from realistically hoping for a climb.  White blood cells dropped from 0.04 to 0.03 yesterday morning, and 0.02 today. My platelets also fell below the 10,000 mark to 6,000 meaning I'm getting an infusion of donated platelets as I write this. As I said in an earlier post, platelets have a very short shelf life, creating an ongoing need for fresh donations. If you ever thought about donating blood or platelets, know that they are always needed.  

There's a pun in here somewhere about time passing quickly, hare- like, and me losing my hair, but I can't find it. So will just share that  for the second time in the last six months, my hair be gone.

It started falling out in earnest two nights ago, so yesterday, my nurse Yasmine, the giver of my new stem cells, became barber Yasmine, taker of my hair. It'll grow back in a few months time, but for now sporting the buzz look and I might keep the look even when I have other hair options. 

Day +9 : Fancy Charts and Passing Time

 The recent exciting news was the posting of my Stem Cell Transplant Journey chart. It tracks my cell counts (white blood cells, absolute neutrophil count, hematocrit, and platelets). I'm trending downward as expected as the chemo does its trick. If you look closely enough, there was a slight uptick on Day +6 following the first of five Granix injections which aims to reduce the severity and duration of my neutropenia.

The low hematocrit and platelets will be treated with infusions. But for the white blood cells and absolute neutrophils, it's a waiting game for my blood counts to recover. Public service announcement: Platelets have a much shorter shelf life than whole blood, and they are always needed for patients like me. If you have ever donated blood or thought of it,  consider donating platelets. 

I started writing this post two days ago, and at that time I had written" I expect my counts to bottom out out over the next 2-4 days." And bottom out they did. Hematocrit and platelets continue to drop while my white blood cell count has dropped to 0.08 with my neutrophils at an undetectable level. 

And I feel the effects. The walking is more taxing, and as the day progresses, the fatigue builds a bit. 

The goal now,  is to stay healthy and wait for my counts, in particular my neutrophil count, to rebound. When it gets over 500 for two consecutive days, it's time to go home. Until then, I'm doing my best to make the days pass.

Get Out Of Bed

It's easy to stay in bed here. I can raise my head, raise my legs, control the lights, control the TV, call for the nurse, call for food. It's a one-stop kind of a place. But getting out of bed every day is key. For one, sitting in the chair and working on my laptop makes me feel less sick. And for another, keeping the bed reserved for sleeping helps me get a good* night's sleep (*good meaning only woken up once or twice in the wee hours of the morning for blood or vitals). 

It may seem counterintuitive but I find that keeping the TV off for a good part of the day helps. I've never been good at vegging out in front of the screen for long stretches and the same holds true in the hospital. So I try to avoid binge watching Seinfeld, The Office, or Modern Family which seem to be always on, and keep the TV off until after dinner when Jeopardy, and the sport du jour, comes on. Weekends, of course, have sports on all the time and so I take advantage of that and will watch whatever's on (although I might draw the line at watching cornhole tournaments on ESPN).

It ain't a lot but
gotta keep moving.

The Sound Of Music

I often forget to turn music on, and that's a mistake. The sound of music can have a profound effect on boredom and loneliness; even sad music can be uplifting. When the only constant noise in my quiet room is the cycling on and off of the HVAC unit, a little Spotify can do wonders to fill the space.

Of course, I also listen to music as I roam the halls of 4C. It's 95 feet from door to door. So picture your high school quarter mile track. Then take that track and divide it into fourteen even segments, that's the length of my corridor. 14 laps equals a quarter mile; 28 is a half; 56 is the full mile. 

It may not be a lot, but every day I'm trying to walk at least a mile. Mile by mile, lap by lap, step by step I'm getting closer to discharge.

When will that be? That's the $64,000 question. I'm hoping for next weekend, April 1-2, but it's a guess. Hopefully it's not beyond that.

Day +4: What I'm Looking Forward To

Today was a slightly more difficult day. Nothing serious, and mostly caused by the Cytoxan -- the chemo/immunosuppressant drug. Between the second day of it, and the medication to make sure I'm peeing 200ml/hour and then some (more than you probably need to know), sleep was at a premium last night. And the slight sleep deprivation and a somewhat persistent, if mild, nausea, made for a tad less comfort this afternoon. But my numbers continue to drop as expected and at some point soon they'll bottom out, and then we wait for them to climb back.

So I thought I'd spend some time thinking about a few of the things I'm looking forward to when I'm discharged.

1. Cracking open a window. Stacy has done an amazing job of turning our bedroom into a recovery room, and with the spring weather starting, it'll be nice to have windows open, fresh air, and the sounds of birds in the trees.
2. Going outside. Walking the 95 steps of 4C is, well, it sucks. No two ways about it. But I'm doing it because exercise is important. But to be able to walk around our circle in the spring weather sounds like heaven right now.
3. Company. Stacy and my family and everyone have been great about visiting, texting and calling. But it will be great when Stacy can pop upstairs for 5 minutes, instead of taking an hour plus trip in to see me.
4. My dogs! I'm not sure how we will deal with them as I have to be careful and make sure they don't lick me or scratch me. But we will find a way and it will be nice.
5. My smart TV. Watching Friends reruns on the small hospital TV with the detached speaker is all fine and good... for a while. It'll be nice to access our streaming services on a screen bigger than my laptop. 
6. Food. Non-hospital food, available in less than an hour. I'm well stocked now with my own provisions, but even still, if I want something like a protein shake - tonight's primary dinner - it's 45-60 minutes away.  

That's it for tonight. Just writing this list out makes me feel better. We'll get there. Thanks to everyone for their support. It's been a wonderful gift to receive.

--michael

Day +3: A Short Note On Compassion

I'm learning a lot about compassion. For the first ten years of my diagnosis, I was a very boring cancer patient, with normal labs and slow growing tumors. Except for about ten weeks spread out over those years, my cancer was for all intents and purposes, in the background. It loitered there unnoticed. That changed in July 2022, when it transformed, and decided it would like a little attention. 

And it's gotten plenty of it - an uncomfortable amount of it, if I'm honest.   

Over the years - and in particular since I lost my parents in 2016 and 2020, I've grown more grateful --for the family and friends I have, for the work I get to do, and in short, for the life I'm lucky enough to lead. Gratitude seems to grow alongside your gray hair and it feels relatively easy to be grateful, if harder to show your gratitude.  Compassion though seems a bit tougher. 

I've always tried to be a nice person. But that's just a steppingstone to compassion. Nice is giving up your seat on the subway to a person who needs it; compassion is knowing that the person in your seat needs help navigating the subway, and you help them. It's the difference from being polite but detached to being present and selfless. 

I've felt so much compassion -- from my care team, yes, but also importantly from my friends, family and colleagues -- that it's really hard for me to embrace the outpouring. I worry that I won't be able to reciprocate when the time comes; or that I'm not worthy of their compassion. These are silly thoughts, I recognize that,  and I'm not begging for validation here. Just an observation that it's a bit overpowering if wonderful to receive all this -- and that it pushes me to be more compassionate in all that I do. To borrow a bit from Jack Nicholson in As Good As It Gets, it makes me want to be a better man. 

***

On the more mundane front, I'm at day +3 (day zero being when the stem cells were infused) which has me tethered back to my friend the infusion pole. It's the start of a chemotherapy agent doing duty as an immunosuppressant. My counts are dropping as expected, and so we remain on course.  

Day +2: Life in the Hospital

 Time sees to float in a hospital. And not in a wispy-warm-summer-cloud-like way, but in a sailboat-on-open-seas-on-a-windless-day kind of way. You feel adrift - unanchored to the shores and responsibilities of daily life. Maybe that's why the care team writes the day and date on the little white board in my room. It's a tenuous grasp on the life that's happening outside. But here on the inside, we float on, with hope that the wind is at our back and pushing us to shore.

It's not that there isn't a schedule; hospitals are very much about schedules. Those may change from day-to-day or be modified by scheduled procedures or things like, oh, getting brand new stem cells,  but since my chemo infusion stopped, we've settled into a regular routine - and routines themselves are the backbone of a hospital stay.

Vitals, Drugs, and Round, Oh My

The main components are vitals, drugs and rounds. Over the next 1-2 weeks, my blood counts will bottom out as the full effects of the chemo take hold. So that may cause some change in the routine, as I'll likely need platelet and red blood cell transfusions, and will have less energy to do lengthy blog posts. But here's what a typical boring morning looks like for me. And I say boring in the most grateful way possible;  boring in a hospital is a good thing!  

0500 - 0600 Wake up from deep sleep. Scramble to find my mask before nurse makes it into the room. It's her/his last visit before the morning shift and she's here to check in and administer morning pills. Take my pills and stay awake because...

0600 Knock knock. Hi I'm here to take your vitals.  Every four hours without fail, the patient care assistant (PCA), aka nurses's aid, shows up to take my blood pressure, oxygen, heart rate, and temperature. She leaves. Mask off. Back to sleep before....

0730 - Knock Knock. Scramble for mask. New day shift nurse comes in, checks in and administers any pills that weren't ready to be given earlier. Does a quick listen of lungs, stomach. Departs. Debate for 30 or so minutes if I should leave my bed for the comfort of my chair. Decide to order some breakfast, in anticipation of being hungry in 45-60 minutes, because...

0830 - It takes that long for meals to make it up to rooms. Mmm, what passes for edible this morning - whole wheat blueberry pancakes and sausage pucks. Meh. But the banana and orange juice hit the spot. Either way, gotta get food in me. Food, sleep and exercise are important for recovery. A point that's reinforced by...

0930 - the attending physician during her rounds. She's accompanied by two physician assistants (PAs) during their morning visit. Today we talk about New Yorker versus New York Times crossword puzzles. And a little bit about my health too. I receive and A+ for my recovery. That seems to put a lot of pressure on me to maintain the grade, but still nice to be teacher's pet instead of class clown. Hmm, maybe I should get on the bike, but first, I should wait for... 

1000 Hello. I'm here to do your vitals. Sure c'mon in. I was just going to take a ...

1030  Quick spin on the vintage exercise bike in my room. Nothing too strenuous or anything that would work up a sweat and require...

1100 a shower. I call the nurse's station and my RN comes in to cover up my port for one of the highlights of my day, a nice hot shower. Aahhh, feels good but once dry I have to remember to also do the anti-bacterial wipe down, with these special warm wipes. Weird at first, but you get used to it. I'd like to say, just like hospital food, but I don't think I could ever get used to hospital food, especially when battling nausea - which is why there is a special menu for oncology patients that has a lot of calorie-dense food including protein shakes. It does the job but not the same as either home cooked or take out food, but still I have to...

1200 order lunch. Feeling bold, I thought I'd try for something off the fancy oncology menu - but the first three items I ask for are all out of stock. I resort to the one item on the menu that it's hard to screw up - a salad with grilled chicken, and...

1300 when it arrives, is actually pretty damn good. A great sign that my nausea is abating a bit. 

Antibiotic Challenges and Quiet Afternoons

The afternoon is a bit quieter. There are still the 4-hour vitals check, more meds and evening rounds from the PA, but usually more time to read, write, or watch whatever the sport du jour is. As I write this, I'm just waiting for the 11:00 pm vital check before I go to bed. If you're doing the math, you know that it should have been a 10 pm vitals visit, but we had a little schedule divergence today. I participated in a two-hour drug allergy challenge. I'm not sure that's the right name for it, but it was a chance to ensure I wasn't allergic to a particular class of antibiotic that I might have been allergic to. It's a lot of observation with the nurse in the room as they gradually up the dose. Good news: No allergic reaction and so that class of antibiotics is now safe for me. But it threw off the vitals schedule. 

And that, my friends, is what passes for excitement here in 4C-56 at 75 Francis Street. Look forward to be drifting back into the real world in a few weeks. 

Happy Birthday to Me

 The stem cells are in. Infused through my central line from 8:15 pm to 9:30 pm on Thursday, March 16th (my new birthday, or rebirthday). As everyone warned me, it was a bit anti-climatic. After blessing the cells (more on that later), a bag resembling tomato soup was hung on my IV line, and just like that, the stem cells that a 20-year female had donated yesterday, were now dripping into my veins. 

While I wasn't surprised at how mundane it was to hang a bag of stem cella, I was at least a little surprised at how I felt. It's equal parts relief and hope -- relief in that this long journey which began back in July 2022 with my transformed lymphoma re-diganosis has finally gotten to this point. I hadn't realized how this burden of waiting had weighed on me. When the cells started dripping, I felt a wave of lightness (not to be confused with light-headedness) wash over me. Sure, there will be days ahead when darkness will try to play its king-of-the-hill game with my psyche. But for now I'll embrace that lightness which shows up as a hope this is the beginning to an eventual life without lymphoma. That's our hope. 

We are not a church-going or temple-going family, but we had the Brigham chaplain offer a humanitarian blessing of the stem cells, which was nicer than I thought it would be, and not as uncomfortable as I thought it would be. The blessing included a passage about the love and support received -- and needed --  from family, friends and colleagues. It was a nice moment for me to think of the tremendous support and love I've felt - especially during these last few months. In the form of comments here on the blog, on Facebook, through text message, phone calls, and even Zoom meetings, it has been uplifting. 

The chaplain could have added nurses and doctors and my entire care team to that long list of supporters. It wouldn't be original of me to write about the incredible compassion and skill that my care team exudes but the trait that sticks out the most to me is that they seem unflappable. They display a calmness that is contagious - maybe the only thing you want to catch in a hospital. 

So what's next? Recovery. My counts (red blood cells, white blood cells, etc.) will continue to drop as the chemo continues to take hold. So there will be fatigue, which makes sense. Anemia - or low red blood cells often shows up as fatigue. And increased risk of infection - also makes sense, as you need white blood cells to fight off infection. So I'll be here at the Brigham for another 2+ weeks; expectation is that it's 13-16 days from today. But it all depends on how well, and how quickly my body recovers.  

So keep that positive energy coming my way, between it, my Ted Lasso Believe light, the Chaplain blessing, and the care of my transplant team, we'll get through this. 

Day -3 and counting

We all know that the road to recovery, any recovery, is not a straight line. Each day is filled with its ups and downs, its twists and curves. That's about how it goes here. As we are wrapping up the third day of chemo, the side effects have been minimal, but real and we're dealing with them (GI issues/mild nausea, if you were wondering). One of the hardest things is being constantly tethered to my IV pole. Although the chemo doesn't take all day, when it's not running, I'm getting fluids 24/7. And there are the physical challenges of the constant fluid intake -- namely that outtake matches intake so it's not a lot of consecutive hours of sleep -- but as always it's the mental challenges that is as or more difficult.

Everything takes longer with an infusion pole. From the simple act of getting up from my chair, to the more obstacle-like event of walking the 95 steps that take me from door-to-door in our pod unit -- it just takes more time. And that is frustrating, particularly for someone as impatient as me.  But there's only about 48 hours more of constant fluids, hopefully, then we might get a little break.

Next week is going to be hard, as the effects of the four days of the chemo may knock me out a bit, but then again, maybe it won't. 

Will update as I can.

Day -5

I'm torn between an update on the schedule and a general 'how-ya-doing" kind of post. So let's see where this goes. The second round of busulfan is infusing as we speak; for the next three days, this schedule continues - two rounds of busulan and one of fludarabine. 

The actual infusion is barely noticeable. It's just the side effects that you have to deal with and so far so good - no bad side effects yet and my appetite remains normal. But I know that as the chemo continues to build over the next four days, the side effects will likely start showing up. We'll just have to tackle them when they do. 

Cleary one of the biggest challenges will be boredom -- even with books and magazines to read shows to stream, sports to watch, games to play on the phone. And the adjustment hasn't been a gradual one. Work and life in general had been very busy these past few months, and in particular, these past few weeks. It's like going from 60 mph to zero in an instant - it's bound to cause a bit of a psychic jar. 

While I'm sure battling the boredom will be an ongoing fight, we'll get into the hospital routine and tackle it day by day. It's like going out for a long run - if you think at the start of it how far you have to go, you'll never make it to the end. So I'll treat this like I do on those long runs I used to run -- knowing I'm almost a quarter of the way through. And that after tomorrow, I'll be at the halfway part for the main chemo.  Then it's rest day and new stem cells. We'll get there, one step at a time.

Til tomorrow.

Here We Go

We'll do this one mostly by pictures. Port was placed today (I have a picture of that, too, but will spare you). It was a very easy procedure and all went well. Most of the day was just waiting around but by about 4:30 or so, I was in the room. It's not quite as big as the photo makes it out to be, but it's private, quiet, with a mini-fridge and a TV, a couch-ish area and a comfy chair besides the bed, and of course, a private bathroom. 

While I still have an appetite, and in the midst of lots of tests (taking some blood, COVID test, Mersa test, EK), was able to get a dinner order in.

And finally, after dinner, my belongings made it up to the room, including my cozy new blanket, lovingly handmade by my sister.

Chemo starts tomorrow so the road will get a bit harder. But we've found a place for my Believe light :)

The Transplant Schedule

 This is a little weird. Since 1989, I haven't taken more than two weeks off work. And yet, here I am with an open-ended leave that will last a couple months at least. I have two emails in my inbox. I have no meetings on my calendar. It feels like I'm leaving my job, or getting ready for a big vacation. After all, I have my suitcase packed for my 3+ week stay at the hospital. 

My bags are packed (almost),
and I'm ready to go (sort of)

But of course, this isn't a vacation. 

The Stem Cell Transplant calendar all centers around your transplant day. That's day zero. But the process starts before that. Tomorrow, I get my port placed and admitted to the Brigham. Then Saturday through Tuesday (days -5 through -2), it's chemotherapy or conditioning to eliminate any potentially lurking lymphoma cells that might not show up on PET/CT scans but could be hiding out, waiting to divide and conquer. 

Day -1 (Wednesday, the 15th) is a rest day. It's  also the drop date for season three of Ted Lasso, so there's that.  Then on the 16th, it's the new stem cell party. It's not an overly long process, and from what I understand, it's akin to getting an infusion of any blood product. Days +3 and +4 bring an infusion of cytoxan, an immunosuppressive treatment. After that, it's recovery as my immune system starts to build itself anew.  And if all goes to plan, about 13-16 days after transplant day, my immune system will be strong enough that I can be discharged and begin the home recovery period.

So definitely not a vacation, but maybe the prelude to a long-term vacation from lymphoma. And that's something I can believe in.

Caregiving and the Heaviness of It All

 Stacy was discharged from the hospital Monday night.

That's how I had intended to start this post. I'll get to that story shortly, but there's a lot rattling around my brain this week. I'm now five days from being admitted; five days from voluntarily turning my life upside down; five days from making myself feel like shit so I can hopefully feel better for a long time; five days from stepping away from my friends and colleagues who occupy so much of my time and account for so much of my identity; five days from making life so much harder for my family.  

That's been weighing on me a lot these past few days, with a physical heaviness that I could feel pushing down on my shoulders and back, and so loudly that it was sometimes hard to hear a casual conversation. 

Part of the weight is the uncertainty - I just don't know how I'll feel or how quickly I'll recover. Will I be able to work part time after two months? I don't know. When will I be able to walk my dog again? When will I be able to see people again? When will I feel "normal" again -- and not a new normal, just plain old normal? When will I be able to run again? I don't know any of that.

But part of the weight is the heaviness of the burden that this will put on my family. I got a brief glimpse of the caregiver role this past week when Stacy spent three days in Miriam Hospital  After experiencing intense abdominal and back pain that had us flashing back to the summer and my symptoms, and understandably freaking out a bit, a trip to the  ER led to a diagnosis of a whole lotta gallstones and an emergency gall bladder surgery for Stacy, and a taste of caregiving role for me. She was discharged last Monday night and is recovering well. But in the short time in the hospital and the ensuing week at home, I caught sight of the emotional burden of caregiving. And it's not light.

But here we are. We start down the path in five days. Some uncertainties will go away; others will emerge. And in the process, we will begin what we hope is the road to long-term recovery.

 

Test and Test again (and again)

As you might imagine, there's a lot of testing before you undertake a stem cell transplant. It's an intense procedure and before they put you through it, it's understandable that they want to make sure all your major organs are working well. 

And the joy of this start and stop and start process is that I got to do most of that testing twice, or even three times. The first time I went through the process was in late October in anticipation of a November auto stem cell transplant. When that plan changed , I got set up to go through the process all over again in late January. Fortunately, I did not have to do another bone marrow biopsy. 

Given how well I've been feeling, most of the tests were little more than an inconvenient interruption. Echocardiogram - long and annoying but hardly uncomfortable. EKG - short and easy. Lung volume test  - interesting the first time; annoying the second. Blood work, urinalysis, cheek swab -- check, check, check. All pretty routine, although collecting 16 vials of blood was a new record for me.  

And this second go round on all those tests didn't give me any pause for concern. I've felt healthy, wasn't feeling pain (save for my ongoing calf tightness), and I could actually feel myself getting better. So I knew I'd ace the heart and lung tests; was very confident that my blood work would reveal no surprises. (Sure enough I've found out twice that I'm HIV negative among other things). No, the only thing that kept me up at night was the PET/CT Scan. 

Of Two Minds

When it comes to anxiety over scans, I'm of two minds. I say that, almost literally. In the soothing light of the day, my rationale mind is in control. So when my back twinges with pain, I can logically connect it to too much time hunched over a computer, or relocating a backyard shed, or just the simple fact that I'm getting older. But in the unknown dark of night, my wilder imagination takes over, and I bully myself into believing that my harmless aches are harbingers of cancerous doom. After all, it was agonizing abdominal and back pain that presaged my six days in the hospital and the ensuing four rounds of chemo to put my transformed lymphoma into remission. 

So as the January 30th scan day approached like a storm rolling in from the west, nighttime thoughts turned to what if: what if it was back? Would I still be able to do the transplant? Would it be delayed to squeeze in some more chemo? How much chemo? Would it be off the table completely?

Inside A Scan

A PET scan is considered nuclear medicine. It involves being infused with a small amount of a radioactive tracer that collects in areas of your body that have higher metabolic activity. Some of these areas are normally highly metabolic; some are abnormal. Cancer cells would  be one of those abnormal areas. That makes sense since cancer is essentially a disease of uncontrolled cellular growth. 

So you get your little tracer injection, you wait an hour or so for it to collect in your body and then you slide into a CT (computed tomography) scanner to capture some images and see what lights up.

The PET/CT scan on January 30th was a problem from the start. When I showed up for the scan, they were running at least an hour behind. Given that I had seven other appointments that day, that wasn't great. After a little rearranging, we were able to shift around the schedule and I went to a few other appointments first, and eventually made it back for my PET/CT scan.

Typically it takes about 1-2 minutes to infuse the tracer into your IV. Except when it doesn't. On this day, in the middle of the infusion, the machine goes beep and the technician looks at the screen with a puzzled look on her face. She presses a few buttons but her puzzled look remains, so she excuses herself and returns a few minutes later with another technician. And they explain to me that it only gave me about two-thirds of the tracer and then shut down. They don't know why. Safe to say, neither do I. But they debate a few options - try to give me the remaining one-third by the machine or give me the remaining one-third manually. Both seemed like logical options. But in the end, they decided to just double the scanning time and that would somehow compensate for the lighter tracer dose.

Later that afternoon, when I saw Dr. S for my last appointment of the day, he could see the images from scans, but the actual report wasn't in from the radiologist. To his eye, it looked good. And for a moment, I was relieved, but I wouldn't be happy until the actual results were in.

The next day I saw the results in my electronic record with something I'd never seen before: It read:

Due to infiltration of radiotracer at the site of injection, the image quality is limited and requires repeat imaging. Patient will be not be charged for this study.

Do Over

We scheduled a new scan for Thursday, February 9th. Nine more days of waiting. Nine more days of trying to keep my nighttime imagination subordinate to my daytime rational thought. The scan itself on the 9th was routine - on time and with fully functioning equipment. And the rest of the day was very busy, keeping my mind off the results. When Friday rolled around, I found myself checking frequently for notification of the image results in my online patient portal.   

There's a debate in cancer communications about whether or not imaging results should be released to patients before they had a chance to talk to their physician. While lab results are visible almost immediately (and always before I see my oncologist), I'm a little wary of trying to read an imaging report, let alone the actual scans. So when I saw around 1 pm that the PET/CT results were in, instead of opening them, I emailed one of my oncologists. It took her all of about 20 minutes to get back to me, with the following: 

"The scans look perfect!" 

Hearing that, I felt brave enough to look at the actual results. 

In my head and neck, no abnormal FDG uptake (FDG being the tracer); in my chest, no abnormal FDG uptake; in my abdomen, no abnormal uptake; in my spleen, no abnormal uptake; in my musculoskeletal, no abnormal uptake.  The overall impression:

1. Unchanged prominent retroperitoneal and mesenteric lymph nodes, now with uptake similar to/less than blood pool. Deauville 2.

2. No new FDG avid lymphoma.

Perfect! I didn't really appreciate how much the uncertainty of the scans were hanging over me until I got the results. 

So now we are all systems go for the transplant process to begin on March 10th. I'll post in the next week or so about what the actual process looks like. Until then, will leave with this image of my small  celebratory dinner from Friday night.