Half Way There!

Today, Thursday, is my Official Six Months Post-Transplant Day. Where DOES the time go, darlings?! To treat myself I've got two choices: I can either go hang out with 10 friends and their sick kids, eat supermarket sushi, have some of those free samples in the bakery aisle, and use the public lavatory.

OR

I can do what I've been doing for the past umpteen days: sitting my bunda at home and avoiding germs.

I think I'll go with the latter. It's just good sense, no?

Especially since, as last week's post indicated, being half way there doesn't mean my immune system is "half way better" or "50% improved." When I caught a cold last week and managed to fight it off pretty quickly I asked if maybe my immunity was coming back. The NP said kindly, "It could be." Then put her work hat back on and said, "But I doubt it. You're on a lot of powerful medicines designed to help suppress viruses. Without them you'd be in a lot of trouble even from a cold." E gets shut down by reality!

Regardless of my continuing house arrest, which is made more bearable by walks when not too cold and newly-arrived workout videos that are literally kicking my tuchis, I'm still and always glad to be here. It has been an amazing journey. Not one I'd ever have asked for, not one I wanted in my wildest nightmares to embark upon. But amazing nonetheless.

I've learned that sometimes the only way out is through. That friends are God's gift to us for good times but most especially for bad. That your children give you gray hair, they ensure you never sleep a full, restful night again, they blow open a hole in your heart that can only be filled by their good health and happiness, they take years off your life. But they also save your life too. On bad days when I was so sick and thinking guiltily to myself, "This would be so much easier if I didn't have to worry about a kid," that was really me admitting that the stakes were too high to give up without a bench-clearing brawl of a fight. It sure would have been easier to not feel the desperate, overwhelming urge to get better and stronger if Bambina hadn't been around. Knowing that she needed me to not only feel better but act like I was better, talk like I was better, and make HER know I was getting better was a massive and profound daily kick in the pants to get over myself.

Which brings me to the other thing I've learned: No amount of positive thinking will make bone marrow grow. It will not cure cancer. It will not heal a spinal cord. It will not, in and of itself, save you from a damn thing. But it will make the journey easier, more bearable, more hopeful, and sometimes more successful. I decided that this could be either the worst year of my life (plenty of reasons to think so) or the best prelude to a second chance at life that anyone has ever been lucky enough to capture. I've always kind of subscribed to the theory that you should never have a sh*t time when you can just as easily (or perhaps with just a wee bit of effort) have a smashing time. Chemo, fevers and this ongoing daily slog of a recovery put that theory to the test, but I'm pleased to say that 10 out of 10 stem-cell-recipients-named-E-who-write-a-blog-with-the-word-Haggis-in-it find it to be a theory worth supporting.

Just my 2 cents on Day 183.

Dayenu!

Happy Thanksgiving, Everyone!

It's been a rough week healthwise, but never so bad that I forget I'm standing on the shoulders of giants; that I am among the luckiest of the lucky ducks in the universe.

We're having a simple 3-person Thanksgiving dinner, but one nonetheless replete with gratitude and joy for, quite simply, the fact that I am here to eat it. Dayenu.

"Dayenu" is a Hebrew word meaning, "It would have been enough," taken from the Passover Seder. It's a means of expressing gratitude for all the little miracles that have to come together for the end result (the thing we usually say we're thankful for) to occur. It makes you stop and say thanks for all the little things that matter.

So in that regard, let me say Thank You:

For a stranger who agreed to give her stem cells to another stranger. Dayenu.

For doctors who have made it their lives' work to find cures for diseases. Dayenu.

For family and friends who love and support and care for me. Dayenu.

For parents who made me who I am; my mother who gives me love and support, and my father whose presence from beyond continues to light my path--especially when the way seems darkest. Dayenu.

Finally, for the two people who make my life worth living, in sickness or in health. Dayenu.

May you all have a truly blessed Thanksgiving.

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.