A Healthy Doctor Sam

Invitation

I received two pieces of mail from Sloan-Kettering yesterday.  Unfortunately, one of them is an $8,900 bill for just one day of office visits and procedures.  So far that amount has been denied by my insurance, although we're optimistically working on clearing things up with them.  And when I say "we", I actually mean my most wonderful wife, who seems to have an unlimited amount of patience for dealing with this sort of thing, when just looking at it makes me go crazy with anxiety!

The other piece of mail was much more pleasant, and almost makes you forget about the money:

Every year, Sloan-Kettering has a gathering of all of its bone marrow and stem cell transplant survivors, and starting this year I qualify for membership in this exclusive club.

Unfortunately, I won't be able to attend this time because I'm in Pittsburgh.  But Alissa and I will be back in New York for good this winter, and we're looking forward to being at next year's celebration and then every year thereafter!

Day +365: Transplantiversary in Pittsburgh

Do you remember back when the titles of the posts in this blog counted the days from my transplant?  The whole world seemed to revolve around when we would reach Day +100.  Then the hundredth day came and went, and I still didn't feel all that normal.  The road back was so excruciatingly slow at times, that it was hard to get a big picture appreciation of how well things were moving along.

Well, at some point I started feeling normal again, and we stopped counting the days.

But for this post, the count is back for a very special date.  Today, March 27th, is the anniversary of my transplant.  A year ago today, having been beaten down by lymphoma, chemo, and a lot of radiation, I lay in bed at Sloan-Kettering and watched an infusion of Normy's bone marrow stem cells drip into my Hickman catheter.  

You've already read about the most difficult parts of that journey (I myself just went back and read some of those old posts... I'm already forgetting just how bad things were...) so here are some recent examples of things falling back into place now:

- At the end of September, almost exactly 6 months after transplant, I returned to work, albeit a temporary job.

- You've all read about the engagement!  Part of the reason for no new posts recently is that I kind of liked the idea of Alissa's smiling face staying at the top of this page for a while.

- In late January, a mere 10 months after transplant and a year and a half after that lump in my neck derailed all plans, I returned to Pittsburgh and once again began my hand surgery fellowship.  I'm doing the fellowship 100% full time, with no restrictions and no difficulty (beyond what every fellow faces!)  In just two months here, I've done over 200 surgical procedures, and I start my third rotation of the year on Monday.  The staff here was amazing to me while I was gone, working tirelessly on my behalf to get my position reinstated, funded, and accredited, allowing me to return.  I'm on a bit of an unusual calendar with my January start, but as soon as things worked out we all wanted to jump and take advantage of it and not wait until the beginning of the academic year in August.  I've waited long enough!  I'm now counting down the months remaining in my fellowship, which is a very different sort of anticipation.

- Dr. P, My transplant oncologist at Sloan-Kettering, helped me find her counterpart in Pittsburgh to care for me locally while I'm here (though she'll still be my main doctor out of New York).  We'll refer to him as Dr. A.  I saw him a few weeks ago, and he sent me on my way to the zillion 1-year-check-up tests that I need at this point.  I spent this week getting a new PET/CT, a nuclear medicine esophageal motility study, pulmonary function tests, a cardiac MUGA scan, a brain MRI, and culminating with my official anniversary visit with Dr. A this morning, where I was informed that all the testing was normal and I had a clean bill.

I'm doing well being back in ordinary day-to-day life.  Even though I've felt pretty well for a while now, it wasn't until I returned to Pittsburgh and fellowship that I felt I had at last been able to pick up where I had left off, and that feeling is tremendous.  I'm still not perfect.  I'd say I'm at 85-90%.  I've had no major complications, but the list of the little and bothersome remains more than a handful.  Most of the symptoms I have today are attributable to signs of chronic graft-versus-host disease, which is the major long-term problem of bone marrow transplants.  My hair has thinned considerably, I have some difficulty swallowing, my mouth and gums are sensitive, I have patchy dry skin, persistent neuropathy in my feet, and swollen edematous legs.  Enough things to remind me I'm not young and in perfect health anymore, but nothing severe enough to require any treatment.  Just careful monitoring and regular doctor visits.  The only medication that I'm officially on is a daily multivitamin, and even that I must confess doesn't actually happen daily.

As for Alissa, she is living with my mom back in Connecticut, kept close to NYC by her job.  Luckily, she has been able to visit often.  We spent Persian new year together here in Pittsburgh, with a tiny little haft seen.  And this weekend she's back for the transplantiversary celebration.

We celebrated with a nice dinner out at restaurant ELEVEN, one of Pittsburgh's finest and just a few blocks from our apartment.  Chef Derek Stevens made a special tasting menu for the two of us, which was delightful.

So that's my one year anniversary, and everything that's been happening recently.  

There's a fun little wedding coming up in less than two months, so you might anticipate hearing news of that on this blog.  But otherwise, it's back to normal life and not much to report here!

Success

On January 3rd, I sat at home, just back from the doctor's office having found out that I had a relapse and spread of my lymphoma.  A week before that I had thought I was in remission, and now suddenly it was Stage 4B.  Very advanced, and having failed chemo once already, I knew at that point that my chances weren't good.

Also on that same day, Barack Obama had a huge victory in the Iowa Caucuses, the very first contest of the long presidential race.

As I watched the election returns that night, I felt excited that Obama won.  But at the same time, my mood was very grim.  I actually thought to myself, "so what.  It's not like I'll be around when either one of these folks becomes president..."

Now, ten months later, I'm very very excited that Barack Obama is the president-elect.  But it's also great that he's not the only successful one.

Did I Mention That I'm Back At Work?

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!

I mentioned in my last post that I was feeling better and better--in fact nearly back to normal strength--so my estimates of restarting work this winter were readjusted a bit, and here I am.

It's not hand surgery yet.  My fellowship plans remain on hold, while the wonderful folks in Pittsburgh are working on the bureaucracy that is in the way of me getting hired there again.  Hopefully we'll have good news on that front soon, but for now it's still pending.

In the meantime, I've temporarily rejoined the Einstein/Montefiore orthopaedic surgery department (where I had done my residency).  I'm not working as an attending, but rather a clinical fellow, which is a perfect scenario for me to get my skills back up to speed without suddenly being back out there on my own.  I have, after all, been professionally dormant for the last 15 months or so, and both my hands and my brain need some practice to get back up to full speed.

I'm managing to work full-time (that's "normal" full-time, not "doctor" full-time--I'm not doing any night or weekend calls just yet), and the energy level has been holding up well.  I'm really enjoying being back at work.  My skills are definitely rusty (and my dexterity is still recovering from the transplant), but I'm getting a chance to do a little bit of everything, and it's great.  Of course, I'm dead tired after a really long day in the O.R., but that was the case even before I got sick.

The commute from Connecticut tends to be about 45 minutes each way, which explains the early wake-up times.  Alissa has about an hour each way, and she and I are still trying out different transportation permutations for our commutes, so that we may figure out what combination is most ideal.

--

On the health front, I've now gotten back the results of my 6-month checkup.  PET and CT scans are totally clean, as is the bone marrow biopsy.  I saw Dr. P for my now monthly visit last week, and she slowly chopped the list of my medications shorter and shorter.  Gone are the immunosupressive drugs, steroids, antivirals, antacids, and minerals.  I'm now down to taking just a daily multivitamin and folic acid supplement.  Pretty good for 7 months from a transplant!

My immune function tests are still not back to normal yet, though they are creeping in the right direction (for you medical readers, CD4 count has broken the 200 mark, on the way up...)  So this means the restricted diet remains in place.  No sushi yet, though I'm eating salads at home.  I'll be re-tested next at the 9-month point.

A Very Long Year

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.

--

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.

A Milestone

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.

Day +63: New Shorts and More of the Same

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. 

Day +56: More Lazy Than Anything Else

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.

Day +41: The Missing Piece

This is Alissa again.  And again there isn't much to report.

Everything is progressing as expected--that is to say that it's progressing slowly but steadily--except for a cough and sore throat that sprouted up over the weekend.  Luckily at Sam's weekly check-in at MSKCC yesterday his lungs sounded "crystal clear" and his temperature is a balmy 98.6 degrees, so no one is too worried.  But a cough is still a cough and Sam's not exactly thrilled to have another complication to deal with, however minor it might seem at the moment.

The primary reason you're not seeing much of Sam here--other than the lack of news--is that he's still exhausted.  And the reason is that he doesn't quite have enough red blood cells to make him perky and vibrant.  You see, Sam used to be an exotic O-Negative, but Normy is a B-Negative and so now Sam is in the process of converting blood types from O-Neg to B-Neg.  Apparently that's a gradual transition that involves enough hemolysis that Sam's red blood cell counts are pretty low and that means low energy.  He had a blood transfusion yesterday--the first in many weeks--because his red blood cell count was a mite bit under the threshold.  His white blood cell and platelet counts were, however, still quite impressive and by every other measure Sam's doing great.  Oh, except for the fact that he lost another kilo of weight.  Oops!  We're treating that with Haagen-Dazs dulce de leche ice cream.

Lest you worry too much, let me assure you that Sam is starting to keep himself a little more entertained, lethargy notwithstanding.  Sam's been watching a lot of The Sopranos; we watched Monty Python and the Holy Grail over the weekend; and we finally finished a jigsaw puzzle that we started about two weeks ago.  The puzzle was actually a little traumatic, though, because we put the whole thing together... and then couldn't find the last piece!  We searched every corner of the room, under the rug, and in all the nooks and crannies and it's nowhere to be found.  So we finished 799 pieces of an 800 piece puzzle.

Thanks to everyone for the well-wishes and support.  Sam's grateful for it, even if he's not up to writing these blog posts at the moment.  Hang in there, and before you know it he'll be writing and calling and posting up a storm.

Day +34: Great Success!

First things first: This is Alissa.

Secondly, Sam and I apologize for the lack of updates lately.  I assure you that it's only because nothing is happening and it's hard to think of things to write about when each day is so much like the one before.  But when you compare Day +34 to Day +22, the positive developments stand out a bit more. 

The two things that Sam is struggling with most right now are eating and sleeping.  Unfortunately those are two pretty big things, but he's surprisingly stoic about it and inspiringly resiliant.  Sam eats miniature versions of the meals that his family and I eat, and he snacks on pudding cups and string cheese, but he still has enough nausea that he never really feels like he wants to eat.  And as for sleeping, that only comes in fits and starts and Sam never gets more than a few hours of rest at a time.

Eating and sleeping aside, everything is progressingly quite nicely.  At his weekly appointment with his transplant doctor yesterday, Sam's blood counts were all strong, and last week's bone marrow biopsy came back pristine and filled with at least 95% of Normy's cells... which is excellent news! 

But all of that good news pales in comparison to the highlight of our day yesterday: the removal of the Hickman catheter.  Oh sweet joy, now he can lay on his stomach, lift his right arm above his head, and play rugby!  (Okay, well, he can't play rugby.)

So the days continue to tick by, slowly but surely and without any major setbacks.  Sam is still wary of the road ahead, but he's feeling grateful and optimistic... though a little bit bored.