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.