Let me just start off by saying that I don’t have high hopes of this post actually making sense to everyone, but bear with me because I’m pretty pissed off. But first a quick tangent to get the new readers up to speed: my husband had leukemia, he was diagnosed at the end of 2009, he had chemo, radiation therapy and a bone marrow transplant in 2010. And we thought he had beat it. In February 2011 he was re-diagnosed, he had more chemo and another bone marrow transplant. He’s been in remission since. And now back to the point of this post.
I’ve just recently found a way to watch Netflix in Italy (not available here) so I’ve been doing a LOT of the watching of tv shows. In fact, I’ve started watching Brothers and Sisters. It’s a decent show, funny at times, sad at times, Rob Lowe is in it… I’m about half way through season 4, and if I wasn’t so late to the party (it aired a couple of years ago, I think) I would contact the writers and tell them to go screw themselves. Or, you know, to do some research before writing stuff. Now, I’m not an idiot (most of the time), I know that tv shows aren’t real and much of the stuff they portray does not reflect reality, I also get that most of us watch tv to get away from reality not get slapped in the face with it. But still.
One of the characters, Kitty, has lymphoma, she has chemo, she loses her hair, she doesn’t seem to be getting better, the second round of chemo doesn’t work, so she has a bone marrow transplant. Three weeks later: she’s fine! In remission! In fact, she’s home with her baby! Her blood white cell count is up! And OMG a few months later she’s considering running for office. WOW!
To be honest I’m not sure why this pissed me off so much, I don’t think we’re actually going to have a zombie apocalypse nor do I believe that the vampires are among us, but these episodes hit a little too close to home.
The Husband had his second BM transplant over a year and a half ago, and he still hasn’t recuperated his energy. When you get a BM transplant you’re in a sterile room for weeks afterwards, once you get to go home your immune system is still so suppressed you have to wear a mask everywhere, even in your own home, your child gets a cold and you have to stay away from them, and you’re certainly not hugging and kissing all your family members with tears and soulful music moments before a transplant.
A year and a half later, and the Husband still has to take a crap load of meds to keep his immune system suppressed, because if he doesn’t his immune system will attack his body. He’s got scars all over his torso from GVHD (graft versus host disease) which happens when they adjust his meds, because his liver or his kidneys are overloaded, and he gets these horrible red splotches all over his skin, because his immune system, the transplanted bone marrow, doesn’t recognize the rest of his body. He gets tired, easily. His heart is stressed, as are his lungs, from the radiation therapy.
He’s better, of course, every day that passes he gets a little better, but he’s not fine. Not by any stretch of the imagination. His hair hasn’t even grown back. The first time around it was all back after six months, but the meds he’s taking now are keeping his hair from growing back, and he hates it. He hates being bald, because he didn’t become bald “naturally” he’s bald because of the disease, so every time he looks in the mirror he remembers how sick he was, and how unwell he still is.
A few months ago, he had some very bad stomach pains and he was nauseous, there was a stomach flu going around. He felt horrible for twenty-four hours, we had to call the doctor in the middle of the night. The doc gave him two shots but told him that if he wasn’t feeling better by morning he had to go to the hospital, that he should have, in fact, gone straight to the hospital. I have never seen anyone more terrified of anything in his life. He was shaking, not from the pain, but from the fear of having to go back in.
This is what it’s like a year and a half after a bone marrow transplant. You get better, slowly. You go on with your life, partially. You get stronger, hopefully. But you certainly aren’t back to normal. In fact, you can’t even see normal off out on the horizon. And you absolutely aren’t off running for office.