Another Anniversary
We celebrated the one year anniversary of my transplant with the last blog post, and today Alissa and I celebrate our one month wedding anniversary!
We celebrated the one year anniversary of my transplant with the last blog post, and today Alissa and I celebrate our one month wedding anniversary!
Yes, that's right. Back to seeing patients, back in the O.R., and back to waking up at 5:00 A.M.
It's just that I've been so busy doing it that I haven't had a chance to sit down and write an update for you here!
As I write this, I am on board a jetBlue flight from Chicago to New York. I just spent four days at a meeting of the American Society for Surgery of the Hand, held at the Hyatt Regency.
About 14 months ago, I was also on a jetBlue flight from Chicago, having just taken my orthopaedic surgery board exam at that very same Hyatt hotel. It was while sitting on that flight home last year that I ran my fingers through my hair and noticed a walnut-sized lump on my neck.
That lump turned out to be a big deal, to say the least, and the next year played out very differently than I had planned.
The last time I wrote an update here was when I was at Day 100 following the transplant. At that time, I celebrated the slow incremental improvements, but still lamented just how slow and incremental they were.
Well, I'm here to tell you that things have really turned around...
Indeed, over the last six weeks or so, my recovery has accelerated tremendously. My energy level is now about 90% of normal... Not only am I strong enough to get through the day without napping, but well enough to go to the gym, ride my bike seven miles, go see the U.S. Open, and even take a four-day trip to Chicago on my own.
In the eating department, my appetite is basically normal now (not as voracious as it once was, back in the day, but hey, I'm not a young boy anymore...). Every now and then I'll have some nausea or an upset stomach, but in general I eat pretty normally. Taste is normalizing too. I can taste just about everything correctly now, and I'm no longer super-sensitive to acidic and spicy things. Indeed, just as I had guessed, it seems that my recovery is trailing a few months behind that of Grant Achatz... Alas, most of the dietary restrictions still remain: still no uncooked or undercooked foods, though I am now allowed to eat salads and fruits, if we wash them at home ourselves. I've gained about 10 lbs. since my low-point, which puts me back in a nice normal range, although a bit lower than where I started (I'm fine with that!)
I'm strong enough overall that I am starting to think about when I may be able to go back to work. In an ideal world, I would go right back to my hand surgery fellowship in Pittsburgh. In real life though, my position was for 2007-2008, and given how far in advance these things are given out, the spots are now full for the next two years. My fellowship staff have been incredibly supportive of me during the past year, and we are very much working together right now to see if there's some way for me to get approval to squeeze in.
The trip to Chicago was fun. I got to see lots of new research in the field, and hear lectures by the leaders in hand surgery. Every time I go to one of these meetings I come back excited and energized about my work. This time, that feeling was especially poignant as I'm excited to go back to work.
Oh, and two other good things about this trip to Chicago: I ate a ton of deep dish pizza, and I didn't find any lumps on the flight back.
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This week marks the 6-month point since my transplant. On Monday I have a set of CT and PET scans, and on Thursday I have a bone marrow biopsy and a visit with Dr. P. I'm less anxious about these scans than about the ones I had at the 3-month point--time spent feeling well definitely boosts my confidence--but nonetheless, I'm looking forward to the day when I'll really stop worrying.
Well folks, it's here. Today is my 100th day post-transplant.
As I've said all along, this is an important milestone. Most of the horrid complications of a transplant are likely to occur in the first 100 days, and having gotten through them safely is important.
Also, supposedly I'm going to start feeling better faster, now that three months have passed.
The way things stand, the recovery has been slow. Eating is still hard--while my taste buds are slowly improving, the dry mouth and appetite are not much better yet. My weight is stable at around 160 pounds; which means I've stopped losing weight, but I haven't yet scrounged up enough calories to start gaining back. I'm not significantly stronger yet either, but have been doing okay. I stopped taking the Valcyte (CMV drug), which had been holding down my blood counts--so those should be going up nicely. Soon, hopefully.
I've started exercising; I go to the gym three times a week, with hopes of slowly building up some strength. Though like with everything else, there aren't any dramatic results in that department just yet :-)
A few weeks ago I took a short trip to Pittsburgh to check on things. I had not been back to my apartment since about six months prior, before my relapse. Thankfully everything was still in order. I'm going again this week, and will stay a few days longer. I'll be getting a chance to see my colleagues at the UPMC hand surgery fellows' graduation, which I'm very much looking forward to.
I'm also looking forward to eventually figuring out my own path back to work and hopefully back to hand surgery, though that's a process which is going to take quite a bit more than a hundred days. For now, the goal is to have the energy to get through each day, be less tired, eat more, and just do more.
Yes, it's Sam again.
You've all admonished me in person or by email for not posting here myself, but the truth is that not much has been happening the last several weeks, and when not much is happening, Alissa is better than I am at telling the story so she kept beating me to it.
It's been the same slow recovery here; I'm not exactly getting better day-by-day, but maybe week-by-week. I'm 2/3rds of the way to the magical Day 100, and I'm definitely feeling better now than I did, say, in early May. But I'm still no champ yet. While things are good when I'm up, I still get tired very easily. I go out of the house when I can, and I've even begun to drive myself places again, but still I can't get through the day without a three hour nap. My blood counts remain a bit low (mainly as a side effect of the expensive CMV drug I'm on), and I remain anemic. I've gotten a blood transfusion every couple of weeks or so, but scraped by this week without one.
But I'm writing, as the title of the post says, because there's finally some news to report: I had my first set of CT and PET scans this week since the transplant, and today I got word that they are all normal. This recovery from the transplant is such an ordeal that it's easy to forget about the lymphoma that started it all, but obviously that is always a fear, and so this scan result is excellent news. Not that I was hoping for anything else, but 70 days is the longest stretch I've had in remission this whole time. Here's hoping it lasts for good.
In other news, we had a whole bunch of family and cousins visiting this past weekend--totally full house. On Sunday, everybody participated in the Hope in Motion walk and run event here in Stamford, to benefit the Bennett Cancer Center at the Stamford Hospital. Our friends and family were out in full force, and made a strong showing both in the 5K run and the 5K walk. Here is a group shot of our running team before the race. Click on for more pictures!

That's me in the center, in the funny-looking hat that's now become my signature sun protectant! And no, I didn't walk or run. Only supervised and photographed, and sat in the shade...
Lastly, I woke up from a nap today to find an unexpected FedEx package waiting for me. Upon opening it, I was flabbergasted to discover that a group of my friends from college had conspired to get me a Nintendo Wii as a surprise present! Needless to say, this blog post was significantly delayed tonight by the opening of my little care package and a few rounds of Wii Tennis. A big thank you to all, once again. This should help greatly both with the boredom at home and also the total lack of physical activity!
It's hard to know exactly what to write, because there's not all that much happening.
When it comes to food, Sam continues to make a commendable effort to eat three meals and a bowl of ice cream every day, even though he still can't really taste anything and has a pretty restricted diet anyway. He's not supposed eat anything uncooked or that might be secretly harboring any nasty bacteria, so that means no fresh fruit, no raw vegetables, and no salad. And because he can't be out and about with the population at large (who are, in all likelihood, carriers of countless virulent bugs and invidious viruses), there's no eating out permitted yet. And yet, despite all these things conspiring against him, Sam's still not shrinking any smaller at the moment. Though he doesn't plan to stay at these current proportions for long, he bought some stylish new shorts for summer from Old Navy. Of course, he can't go out in the sun in them (sun exposure is forbidden after total body irradiation), but a little frolicking in the shade with a hat on might be permitted.
Everything else continues at the usual slow pace. Sam's still on CMV prophylaxis and a large array of other pills, most of which are in standard amber prescription containers, except for the Reglan, which came from the Target pharmacy and is therefore in a fancy, high-design ClearRx bottle. The major weekly activity is still the trip to the hospital for follow-up, but next week we get a double-dose because Sam will be having his first post-transplant PET and CAT scans... just to make sure everything is still neat and tidy. There's no reason to be worried about them, but it's a little bit anxiety-producing, for me at least.
So in the meantime Sam will continue his regimen of hanging out and napping and napping and hanging out.
I am delighted to be here to make the happy pronouncement that the only reason you aren't seeing posts from Dr Sam himself is that he is lazy!
The last week has been great. His counts are good, his weight is up, and his energy is steadily increasing. He's been busy, even going out to run errands... and driving himself. (This puts my job as chaffeur in jeopardy, but luckily I have a day job.) Last weekend we went into the city to bake homemade macaroni and cheese and garlic-sauteed broccoli with his cousin Emily and another friend... and stayed out until nearly midnight.
We're still only a little bit more than halfway to Day +100, but already Sam is feeling and acting much more like himself. He still has plenty of limitations, but it's starting to feel like the time is easier to pass. And that's a pretty nice development.
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