Wednesday, November 14, 2007

Gentle Reminder Indeed

November 28th will be the official Half-Way Day in my ongoing stem cell transplant saga.

In some ways it seems so soon. In others, I'm stunned I haven't pulled my hair out from cabin fever. To mark the occasion the good people at the National Marrow Donor Registry have sent me my 6 month newsletter full of "gentle" reminders. The most compelling one for me is this:

You may be feeling much better at this point and beginning to resume some daily activities. It is important to remember that your immune system remains suppressed regardless of how well you may be feeling. Do not let down your guard on infection and graft-versus-host prevention simply because you may be feeling better.

Who, me?

I'm glad the newsletter arrived because it is a sobering reminder that, my improving physical condition notwithstanding, I still have no real immune system. It said that the 6-9 month period can often be the most dangerous precisely because patients assume that "feeling better" equates with "doing better," and so start backsliding on the hygiene and infection-prevention controls we were so committed to back at Month 2. There is no doubt that between my ongoing immunosuppressive drugs, the additional immune suppression of being on the rituxan study, and the fact that we are approaching winter (= more incidence of illness), my immune system is still not at a point where it can be safely taxed by anything no matter how well I may be starting to look and feel. "Gentle" reminder, my a**!

It was also a very serious reminder about GVHD. About staying out of the sun as much as possible, putting SPF 30 on every centimeter of exposed skin, and being vigilant about looking for any changes that might indicate GVHD is on the way. I know that sun exposure can trigger GVHD, but I think I had kind of forgotten about the zero-tolerance nature of the sun prohibition. Not that I was going tanning or anything, but I may have been less than meticulous in applying sunscreen or about letting the sun hit me while riding in the car. The newsletter was a very not-gentle reminder that Sunlight Triggers GVHD. Really. Even For Me.

So that was the slap in the face part of my upcoming 6 month mark. To which I say, Keep 'Em Coming. If I may say so, I have been the model patient. I literally do everything--to the letter--that my doctor tells me to do. If he told me that running around the DFCI waiting area with pasties and a boa on would prevent GVHD, I'd be getting my kit off as we speak. The man does this for a living. And speaking of "living," I know that I am alive in November of 2007 only because of this transplant. It's weird and unpleasant to think about, but the stark reality of the matter is that I was exceedingly unwell in May 2007. There's a reason there was only a month between my initial consult and my transplant, and it ain't because Dana Farber had tons of open beds to fill. My doctor (and my donor) saved my life. So whatever he says to do, I'm doing. And this newsletter was a real smack on the forehead to stay vigilant, stay focused and to remember that half-way is just that: not out of the woods yet.

The sunshine-and-lollipops aspect of the 6 month mark is, obviously, that I'm still here (cue Barbra: "Good times and bum times, I've seen them all and my dear, I'm still here. Gold statues sometimes, sometimes a kick in the rear, but I'm here..."). I'm also more convinced than ever that "A friend may well be reckoned the masterpiece of nature." (Thank you, Ralph Waldo Emerson). When things go to sh*t, you know who your real friends are. You know them because they are sitting right there in the dung pile with you. I'm lucky to be able to say that I have lots of very stinky friends these days. I've never been more grateful, more appreciative, and more aware that life is too short to not look around and feel thankful every single day for what you have. Or, as that oracle of my generation, Ferris Bueller, once said, "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it."

Just be sure you use Purell and sunscreen.

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