Tuesday, July 03, 2007

Well, Shut My Mouth

It's update time.

My appointment went well today. The big scary test results I was anticipating are not back yet, but my blood counts are up enough that they are not too worried that the donor cells might not be winning the battle with my old, busted ones (whatever ones were left post-chemo that is). So it was a good day.

On the flip side, however, I've decided to limit the number of posts I do on this whole process, both in number and content. At first I found it to be a fun way to share all the weird, interesting and kooky things that go along with stem cell transplants. Certainly, there was a definite element of tracking my progress, but my intention was less to have a weekly health journal and more to attempt to find the humor, oddity, ridiculousness and inspiration in such a situation. But now I feel like I've crossed the line into "Dear Health Diary" territory and it's not where my best work lies. It's also not where my sanity lies.

A stem cell transplant is very much a marathon rather than a sprint, so while weekly blood counts and general health improvements are important milestones, they really aren't the core "stuff" of getting through it all. And focusing on them just serves to make me superstitious, anxious and obsessed with too much granular detail. My counts are up. Yay! But there are still about nine very real ways I could die unexpectedly by October. So it's less helpful for me to focus on weekly counts than it is to focus on more interval-type milestones. The chimerism test was indeed one of those big milestones. If that comes back too much less than 100% I've got a lot of 'splainin to do; so it made sense to write about it. But reporting in weekly is having a negative effect on me for a couple of reasons:

First, if I rejoice over every 10K jump in a blood count and think life is peachy, then I also have to get emotionally involved in whatever feelings a 10K decline would engender. And I'm seriously not interested in doing that. Like they say in Hollywood, "Don't believe your own press." If I get all giddy about the weekly good news, then I have to get upset if I get a week of bad news. I rode that rollercoaster for several months last year, and it's a ride I never want to go on again. I'd rather just accept every result for what it is: a result. Not a great one, not a bad one, just a result that will, cumulatively, point the way to next steps.

Second, some days I just get tired of being a disease. As ridiculous as it sounds from someone who just spent months blogging about it, I don't always want to talk about it. In fact, most days, I pretty much don't want to talk about it. I just want to be me, albeit with my current limitations, rather than the person you feel you have to talk hematology with. And, in all fairness, in putting it out here, I've invited people to talk about it with me with no real ability to say, "Not today, thanks." Or in the case of the person who said, "I'm sure everything will go well; but what if it doesn't?" there really was no response to be given. How do you say, "Wow. That is a line of thought we just don't engage in, thank you." or "None of your business" when I've been shilling my story for months now online for the world to read? (well, at least for the ten of you!) I might think that's an invasive question, but I'm thinking that me posting all this stuff on here gives the impression that it's not, that I'm really cool with being public about everything. The truth is that I'm not. There is a whole slice of my mental and emotional world that I don't blog about (duh) because the journey through a transplant (or any major disease or procedure for that matter) is a very personal thing. You can be surrounded by people who love you and help you, but there is a very real element of the process that no one can help you with. You can talk with your loved ones about what to do should things not go well, but to mentally prepare yourself for that possibility without allowing it to feel like a probability is a very solitary journey. Kind of like my response to people who asked if I'd "really thought this through" before the transplant: "Um, hi. If it fails, I'll be the one dead. I'll be the one leaving my kid without a mother. You can cross any worries about me not having given this the appropriate attention right off your list." Believe me, you don't sign up for chemo and stem cells without having gone to all the dark places you have to go beforehand, especially if you have kids. But, even having written that, I'm not particularly interested to have that detailed discussion with anyone, online or off.

So I'm going to stick to politics and smut for the foreseeable future, with periodic, relevant updates thrown in, but only if they include something funny or stupid to make them relevant to the blog. And in the meantime, tell me all about you, what's up with you, how life is with you. And I swear you don't have to ask me even once how I'm doing. Seriously. If there's anything to tell, I swear I'll share. Besides, as the Baby Daddy pointed out, "who's gonna buy your book if you've already written it all online?"

Good point.

4 comments:

Anonymous said...

e - luv ya.....and understand. Can't wait for the book to come out.

You ever watch 'Studio 60 on the Sunset Strip'? Great writing from Aaron Sorkin although I don't necessaril agree with his politics - fantastic show.

- Friends from the Constitution state

Vigilante said...

Happy Birthday, America! And Happy Independence Day to you, E, & all your readers!

And, speaking for the latter, I'm sure we enjoy you writing as political and smutty as you wish!

JPjr said...

smut, smut, when do we get smut?!?!?!?

Vigilante said...

E just posted up a concrete PENIS for Pete's sake. What more do you need?