A Healthy Doctor Sam

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!

Thank you to all of you who have celebrated with us in so many ways.  

Day +20: What? So Soon?

If everything continues to progress as swimmingly as it has for the last few days, it looks like Dr Sam will be discharged on Friday.  He's taking all his meds by mouth, he's drinking like a fish (if fish drink juice and Gatorade), he's eating a bit, and his energy is steadily increasing.  The Hickman catheter will unfortunately be going home with him, but that's a small price to pay for being able to sleep in his own bed.  In the meantime, after a four week hiatus from eating, Sam has started ordering meals from the hospital room service.  But he's more excited for making meals at home this weekend, even if it all tastes like nothing.

I noticed the other day that the faucets in the bathrooms at Sloan-Kettering are, coincidentally or not, made by Sloan Valve.  Makes me chuckle.

Day +18: Four Week Anniversary at Sloan-Kettering

You might think the title of this post is a bit wonky--Day +18 marks four weeks?--but remember that we count the days since the transplant and Sam checked into the hospital ten days before the transplant.  So Monday marked four weeks since Sam arrived at his luxury suite at Sloan-Kettering.

On Day +18, Sam ate some mashed potatoes and drank some apple juice.  He also reduced his napping time by an estimated 60%.  (I estimated that myself.  Just now.  The margin of error is considerable.)  He's taking some pills orally now, so some of the IV bags littering his pole--notably the antibiotics--have been removed.  Sam's edema was significantly reduced and he was looking and feeling much more like himself.  And on Day +18, Sam also started thinking about going home as a realistic possibility that might actualize before, you know, Halloween.

It was a good day.  It's still hard to be cooped up in the tiny hospital room and to be bored but not quite up to reading or watching movies just yet, but it's great to be improving.  You'll remember that Sam has to hit three milestones before he will be sent home: no fevers, few or no transfusions, eating.  He hasn't had fevers in a week, likewise with transfusions, and he's starting to nibble a little.  For the next few days he will probably be focused on the delicate dance between his stomach, which remains skeptical of food and sometimes ejects it, and his will, which has set its sights on home and is eager to get there.

There's no way to know when the discharge date will arrive, and estimates are notoriously unreliable because they can change in an instant if Sam spikes a fever or fails to work his way up to a seven-course banquet feast.  The most optimistic prognosticators think perhaps at the end of this week; the staunch realists think perhaps at least a few days more than that.  The remaining hurdles are many and the road isn't going to be easy once Sam is back in Connecticut, but it all somehow matters less with the prospect of sleeping in his own bed without a IV pole dragging behind him in the not-too-distant future.

Day +14: A Little Frustration, A Little Progress

This is Alissa Elliott, reporting from New York, New York.

This is day +14 and Sam continues to make progress, even if it sometimes feels like two steps forward and one step back.  (Which is, by the way, the normal course of events for recovery from a bone marrow transplant.  It's never a steady trajectory, even in the best cases.)  Sam continues to be almost totally fever-free, for which he's very grateful, but now he has some distracting and annoying swelling in his legs and feet, which makes him uncomfortable, and occasional nose bleeds or waves of nausea, which can be a little exhausting.  Still, the signs of progress are unmistakable: his radiation burns are healing, the fevers have remained at bay, and he was able to swallow a little berry-flavored Propel Invigorating Water Beverage yesterday.  (Yeah, it's actually called a "water beverage," and no, it wasn't particularly invigorating.)

The progress toward recovery so far has made Sam hungry for more, because he's extremely excited to get home to his own bed, his own comforter, and freedom from the IV pole.  The milestones for the eventual return home are:

1. Being able to eat and drink.
2. Being consistently fever-free.
3. Not being transfusion dependent, which effectively means he doesn't need blood or platelets every day.

Sam's a ways off from achieving all three of those, but if you squint just a little bit you can see them all on the horizon.  His blood counts are rising, his temperature is almost always spot-on, and his mouth and esophagus are healing.  So keep squinting and we'll be there soon!

Day +10: A Step in the Right Direction

This is Alissa Elliott, your Liaison Officer, reporting on Dr Sam's status.  Yesterday was Day +10 and it was markedly better than Day +9 and most of the week that preceded it.  The big news: no fever! 

Sam spent yesterday morning groggy and napping, but by late afternoon he was a veritable ball of energy.  One of the great pleasures of his routine comes every fourth day, when the tubing for his IVs is changed.  It means that for a brief period he is an independent body, able to move through time and space without a pole dragging behind him.  And this freedom means... a real shower!  Happily, yesterday's energy coincided with one of those every-fourth-day days, so by late afternoon he was clean and chipper.  His cousin Emily stopped by and we watched a cavalcade of cooking shows on channel Thirteen, in which we learned many things about sticky toffee pudding, scones and clotted cream.

It may be early yet, but Day +11 already promises to be similar to Day +10 in all the best ways.  There are clearly still hard days ahead, but yesterday's bit of vim and vigor was refreshing and we're cautiously optimistic that the good days will keep increasing in number.

Day +8: Febrile and Miserabile

Please don't be startled, but this is Alissa writing and not Sam. Sam would like to be blogging, but he's a little worn out at the moment and asked me to step in as a guest blogger until his energy is back up.

Today, Thursday, was Day +8 and we are surely in the thick of things. Since Day +4 Sam has been battling persistent fevers of unknown origin, increasing mouth and esophageal pain, and an exhausted restlessness that has him up and out of bed regularly, and soon back in it for more naps. At any moment he feels pretty darn miserable, but miserable is the status quo. But despite occasionally nasty nausea and the chills that sometimes accompany the fevers, Sam's worst complaint is the precariousness of the situation. It feels like walking a tightrope in which a slightly elevated heart rate or decreased blood pressure feels like a loss of balance that might cause a tumble. Fortunately Sam's doctors and nurses are wonderful and attentive and capable, so he is stable and, as always, unflappably forward-looking.

Last week Sam started TPN, or dinner via IV, which is the closest thing to the Jetsons' meal-in-a-pill that modern medicine can offer. He still occasionally remembers food fondly and looks forward to eating again one day, but at the moment swallowing even a single Tylenol tablet is a bit of an ordeal so the TPN is appreciated.

Despite all the discomfort and fevers, Sam has had opportunity to cultivate a new hobby: lounging in what we euphemistically call his Barcalounger. It's more accurately described as a vinyl couch, on which we plant a big blanket for him to prop himself up on. It's a good, easy alternative to the bed and a very achievable destination when he wants to indulge his restlessness on a little walk to someplace not more than six feet away.

The reason Sam asked me to post for him while he's focused on generating some new bone marrow out of Normy's stem cells is that he knows there are a lot of people who are following his progress closely and who care about him very much. He doesn't want to leave you hanging! He's grateful for all the emails and blog comments, and he reads everything, even though he is not quite up to responding at the moment. Likewise, even though he only has the energy for short visits, he enjoys seeing visitors.

So until our Dr. Sam is feeling a little more perky, I'll stay at the reins and keep you updated on his status!

The Eyebrow Problem

Going bald has not really been a problem.

I know it must be incredibly hard for women who undergo chemo, and heck, even some guys might not like it. But as for me, I really haven't minded it. I have, after all, shaved my head by choice in the past.

As I've pointed out, however, it was losing the eyebrows that really bothered me more. A guy with a bald head is just a guy with a bald head. Some people even like that look. But a guy with a bald head and no eyebrows? Well, that look really made me feel less like Patrick Stewart and more like a cancer patient.

I was lucky in that my eyebrows hung on much longer than the rest of my hair did. But sure enough, over the last couple of months, they too have succumbed, and at the moment I have hardly anything left.

But there is nothing to fear! A solution is at hand!

While I am sure they will grow back in no time at all once I'm off chemo for good, in the meantime I have my friend Alissa to thank for this interim fix:

Everything I Can Do

So the battle against my lymphoma goes on, slowly, but surely...

With my first round of ICE chemotherapy, the doctors and nurses all told me that this would be much more intensive than the CHOP cycles. More nausea, more fatigue, etc... And I was quite worried about how bad it might be. Now that I'm almost done with that first ICE course, I'm happy to report that it wasn't so bad.

Yes, the nausea and the crummy feelings were more intense this time (not to mention the need for being hospitalized at the outset), but all of that lasted only about 5-6 days. For the most part, I've just coasted through the last couple of weeks, feeling rather good.

I've indeed grown more tired, but that's been pretty insidious. It's not so much that I feel fatigued, but more like I tend to take three-hour naps in the middle of the afternoon!

Slowly, this is taking its toll, but I'm hanging in there. I have less and less eyebrow by the day. My face is puffy and dry because of the steroids, and I have also lost my voice to a significant extent. Around the time of my last cycle of CHOP, I began to experience what felt like typical laryngitis. Except a couple of weeks went by, and it didn't go away. As soon as I opened my mouth at the next visit with Dr. H, he shook his head and lamented that this, too, was a side effect of chemo. Vincristine, the drug in CHOP which had given me the numbness and tingling in my fingers and toes, apparently also causes paralysis of the vocal chords in some cases. We're hopeful (but not certain) that this will improve over time, and and maybe go away completely.

It's really annoying, because more so than the bald head, my crumbling voice is what really flags me as someone who appears ill.

So getting back to the title of this post--Doing everything I can do in this battle. I'm trying to stay upbeat. I've made it a point to go for a walk each day (at least a couple of miles, if I can manage). I'm doing brain gymnastics by trying my hand at the New York Times crossword puzzles (at least early in the week). And not the least of all, I have this guy to beat up on:

That's not a ball of yarn, and those are not knitting pins.

It's a T-Cell voodoo doll, in its little jail cell, with a couple of good stabs in the gut! My mom has mandated that it is to get at least two pokes each morning.

For this I have to thank Mrs. Ann Elliott, my biggest fan in Oregon!

--

I'm getting admitted to Sloan-Kettering again tomorrow, for my second and final cycle of ICE. The cancer is in remission, and I've almost completed the primary chemotherapy course with very little fanfare.

At the same time, though, things are quickly ramping up for my biggest hurdle of all, and that is a bone marrow transplant. This is the hardest, riskiest, and frankly, scariest part of this process. And it's a little strange that I have to go through it even though the lymphoma has been successfully put into remission already. But it's also my best hope for making the remission a lasting one, and hopefully preventing me from having to deal with lymphoma for the rest of my life.

More to come on that in the next couple of weeks. For now, time to do some laundry and get a good night's sleep before my weekend at the hospital.

Mrs. Weiss

Ilana is one of my closest friends in the world.

Earlier this summer, on a random wednesday evening, I got word that I had been diagnosed with a malignant lymphoma. Burdened with this news, I sat home alone and tried to make sense of it. I looked at my old hematology text book from medical school, I searched for T-cell lymphomas on Medline. But of course, none of it helped.

Finally, at about half past midnight, when I couldn't hold it together anymore, I picked up the phone. It wasn't my mom, my family, other friends, or any colleagues that I called, but Ilana. Like so many times over the last decade, she has been an emotional pillar; and this time is no different. We talked, she listened, and she consoled. And she tried to deal with the news herself.

She probably wouldn't tell you this, but I simply sobbed through most of the conversation (I broke the "men don't cry" rule into about a million pieces).

In the middle of the tears, there's just one sentence that I recall uttering –

"I don't want to be sick, and I don't want to not make it to your wedding."

This past weekend, Doctor Sam was Healthy indeed, and I had the pleasure and honor of being there to celebrate as Miss Braun magically transformed into the new Mrs. Weiss.