MDS Becomes AML - Home Again & Glad of It

As the old song "Hello Stranger" would have it

It seems like a mighty long time
(shoo-bop shoo bop, my baby, ooh). 

After a month and three days (but who was counting) of being injected, poked, prodded, monitored, scanned and infused, it feels so good to be back in my own house, to sleep in my own bed, the be eating real food, and—thank goodness—to have access to Turner Classic Movies again.

Yes, there are still long periods of the day when I'm capable of doing little else but lie around in front of the TV, and there is no substitute for TCM, not only because of the classics it shows, but because it's ad-free. Just yesterday I watched all or part of three Gary Grant films. It doesn't get much better than that.

But, there are parts of the day during which I'm now rather functional. There's a lot of business to catch up on, and ski columns to continue to write. I'm trying to stay off the phone, which uses lots of time and too much energy, but am happy to read and reply to e-mails.

The important thing right now, beyond regaining strength and indulging in Penny's cooking so as to recoup some of the weight I've lost, is to adjust.

Adjust to the what?

The fact that this is an interim step, an island of calm, if you will, before the next storm. Because this is the situation as I understand it:

The initial chemo treatments seem to have put the leukemia into temporary remission. That in itself is not enough, however.

One choice (probably not to be taken) is to keep going with what's called "consolidation" chemo treatments, which means two or three 5-day, intensive treatments requiring 8-9 day hospital stays. That would drive the leukemia into something resembling long-term remission. But, even with the leukemia in remission, we'd still have the MDS to deal with—and that'll eventually cause a repeat of the leukemia or some other problem.

So, the only real choice is to undergo a bone marrow transplant.

Exactly when this will happen and how long the hospitalization will be I can't say. The first obstacle is to find a donor. The best possibility for a match is my brother—and that's only a 25 percent chance. But, he has been tested and we should know by next week if he is a match.

If he isn't, then a search must be done of the National Bone Marrow Donor Registry. That can take a couple of weeks or a few months. Once we have a donor, we'll proceed with the transplant, and if all goes well that will eliminate the MDS and put me back to being disease free.

If it doesn't work, frankly, I have no idea what happens.

We have an appointment with Dr. Transplant for this coming Monday. Hopefully, that will give us a better perspective on the timeline and possibilities for success.

So, there's some serious, intensive treatments still to come and endure. I honestly can't say I'm "ready." But, I can honestly say I'll answer the bell when it rings, and that I'll give it my best imitation of the Mohammed Ali rope-a-dope (or perhaps the Mike Tyson ear-bite technique) with full intention of persevering and coming out victorious in the end.

Not to sound melodramatic, but this is a life-and-death struggle. Yet, I remind myself daily that not so many years ago a diagnosis of AML was tantamount to a six-month death sentence. Given that, I'm already way ahead of the game, which makes it that much easier to gird the loins, let the docs do their thing, and expect to come out fine when it's all over.

Meanwhile, let's hope that the Hackensack University Hospital Bone Marrow Transplant Center has TCM on their TV's.