Hi everybody. It’s been a while since my last update so this one may be kinda long. For your reading pleasure I have taken the liberty of inserting handy “break points” so you don’t get tired or bored reading all the news. Let’s have one now, to practice.
BREAK POINT ONE: Look away from your monitor. Stand up. Go outside and breathe some fresh air. Squint at the sun. It’s good to be here isn’t it?
The biggest thing that happened recently is I just had my second bone marrow biopsy and aspiration. Some of you may remember that’s when they bore into your tail-bone with a big needle and take out a core sample of your marrow (like ice samples from the north pole) and then they suck out some aspirate (blood from inside yer bonz) to make slides with. Yeah, it hurts. But the good news is I soon after discovered the joy of Percacet (a mellow painkiller) and now I’m offering up my butt to anyone with a needle and some little white pills to trade. Alas, no takers yet.
When I had my first marrow biopsy at diagnosis it took them two tries and it hurt a lot. This last time it took them five tries. Five! Obviously they didn’t know I was such a hard ass. But my doctor quickly settled me down after they got it with, “your aspirate is mine.” They say humor heals, but that hurts.
BREAK POINT TWO: Pick up the phone. Call your parents. Just to say “Hi.”
The second biggest thing that happened recently is a new drug now being tested as a possible treatment, maybe even cure, for chronic myelogenous leukemia (CML). You can’t even imagine how exciting this is. Some of you may have heard about this on CCN, ABC News or in the papers. It’s a really big deal. (thanks to everyone who called to tell me about it) Here’s a link to a recent article if you’re interested in reading more.
What does this mean for me? Well, let’s just say that if this news had been released even one month later than it was I’d be in a Bone Marrow Transplant ward, bald, sickly and fighting hard for my life. Instead I’m hanging out, planning my Third Annual Martini Christmas Party and wondering what the hell I’m going to do for New Years. Lucky me eh? Right now the chemotherapy I’m on (interferon) appears to be working and working well. My docs are impressed. My blood counts are normal and when I get the biopsy results early next week I expect to show no signs of the disease. I need all of you to send vibes, pray for (whatever) good results. This is it.
The really great thing is how well I’m handling the shots. Just about everyone taking interferon is feeling pretty damn lousy about it. Depression, nausea, aches etc. are common side effects. I can say that as long as I keep my doses regular I generally feel pretty great most days. And my hair even seems to have slowed it’s departure from my head.
But, back to the new drug. It’s called STI-571 and my friend, and expert bone marrow transplant nurse, Kerry spoke to her old nurse manager at Dana/Farber who told her the thinking there is that STI-571 will soon replace BMT’s as the standard treatment for CML. No one is saying it’s a cure, just that it could be.
Can you believe it? It’s almost like God is saying to me, “I gave you this disease to wake you up. And now that you’re thinking better about, and appreciating the life I gave you, here’s a way out of the predicament I put you in. But don’t screw up, I’ll be watching you.”
Which leads us to…
BREAK POINT THREE: If you’re like me, you’ve spent most of your time focused on career and work. There’s so much more to life. Take a moment to think about it. Shift some priorities.
Friends, I have no idea what will happen next. I’m sort of in this phase where I’m letting life just wash over me. For now I’m just waiting for the biopsy results and keeping my fingers crossed. In the meantime, here are three things I like about having Leukemia:
- Being in better touch with friends and family.
- Learning to slow down and appreciate my time here.
- Exploring my own spirituality.
I hope this finds all of you happy and healthy and I wish great things for each of you as we head into the new year.