Sunday, June 26, 2011


The writer's kind, that is. I have started this post roughly 10 times, and while I have plenty I wanted to say I can't seem to put it into words. So I'll drop those things for now so that I can provide some sort of update.

Friday I spent an entire lovely day at the hospital, getting blood and platelets. My hemoglobin and platelet count both dropped off rather dramatically between blood draws on Monday and Thursday. My white counts are also continuing their stay in the basement. Which, unfortunately and to my great frustration, means I have to delay the chemo I was scheduled to start on Monday.

I hate sitting around waiting for the next round. Not only is it frustrating to have to wait on treatment, but I also now have even more time until I find out if these new drugs are even working. And every week of recovery adds to the length of this ordeal. At this rate I'll be in treatment until 2013. The one upside is that I usually feel pretty decent during these extra weeks, so I can log some "feeling halfway like a normal person" hours. As I like to call them.

There's a not-so-small problem with feeling better, however, which is namely that it tends to make me feel like shit. Sure, physically, I feel great: I can eat, I have energy, I get out of the house. Emotionally, mentally, I'm a wreck. See, when I'm getting chemo or dealing with the side effects, 95% of my mental energies are directed to coping with pain and illness. It's actually so mentally draining I find it difficult to read books, which for me, is pretty remarkable. I sleep for 10 or more hours, and I pass out easily by 9pm.

When I'm better, on the other hand, my mind's free and clear, and there's no good or healthy way to just stop thinking. So think I do, about all the things I'd really rather not. It's not as bad as it was a few weeks ago. I'm  no longer stuck in a spiral of thoughts of the worst that could happen, and I don't cry every single time I'm alone. Sure, thoughts of "What if I don't make it?" still sneak up on me, leaving me feeling as if I've been punched in the gut. But I'm getting better at chasing those thoughts away.

It's other thoughts which haunt me more now, thoughts of past and future. For "What if I don't make it?" isn't the worst question, it's "What if I don't get to do that?" What terrifies me is that I might lose my future, and I don't think I need to explain why that fear makes me question my past. Decisions I've made and convictions I've held, all of which I was so damn sure were right at the time, seem stupid or deeply misguided. It's the regrets from the years I've had and the possibilities from the ones I've yet to that plague me on these days when I'm feeling well, bringing tears to my eyes at random moments and keeping me up at night.

It's not easy to chase these thoughts away. But I devour books, sometimes several in one day, pulling anything that looks tolerable off the library shelves, since reading offers the best respite. I jump at any chance to leave the house, to do something, anything other than sitting alone with nothing to do. Lying in my bed at night, I try to pray instead of letting my mind dwell in grim places. And I wait, because I trust that this will all get better with time.

It's not easy, but it's all I can do.

Wednesday, June 8, 2011

Everything different

Turn up the lights in here baby, extra bright I want y'all to see this.  Turn up the lights in here baby, you know what I need, want you to see everything, want you to see all of the lights.

It shouldn't be, I suppose. Different, that is.

But it is. I almost wrote that I've been lying to myself, but that's not quite true, and not fair. After all, it was easy for me to ignore that I was facing an approximately 40% chance of failure, much, much higher odds of failure than I have ever dealt with in my life. After all, I could check a box for all the positive prognosticators: I had the mildest previous treatment possible, no radiation, it was a long time between remission and relapse. And things were working: my tumor shrunk, surgery removed it, just another few cycles and I would have minimal disease and I could get stem cell treatment with its high rates of success. This would suck beyond telling, but at the end, I'd be fine.

Then, a CT two weeks ago, meant to clear me for stem cell, showed that the disease in my liver had grown, and worse, spread to the lung. A PET scan a week later confirmed. Chemo hasn't done a damn thing to check the disease's growth since surgery.

So no stem cell transplant for now (they know it won't work with that much residual disease), and onto another chemo regimen.

And, oh yeah, the chances of my dying from this disease? Now greater than half. How much greater, exactly, I'm far too scared to ask. All my doctor offered was that this "didn't put [me] in any immediate danger," a less-comforting-than-it-was-probably-meant-to-be statement which doesn't incline one to ask further questions. But it's not the statistics that have me so rattled. It's the roadblock, the setback, the change of course. I've been spent hundreds of hours pouring over the charts of pediatric cancer survivors, and I struggle to recall more than a few cases where those survivors had their current treatment stop working. Survivors' treatment goes smoothly, like mine did the first time around.

I've never hated my knowledge--and my need for more of it--until now. My dad today told me he had looked up the use of these new drugs in Wilms, and my response was just a look and a "Why?" because he knew I had done the exact same thing and not exactly coped well with what I found. It's impossible to not get rattled by any Wilms relapse study, because they all repeat those charming survival statistics to stress the point that more research--their research--is needed. What gets to me most, though, is the use of the word "salvage" to describe chemotherapy regimens used after the first has failed. Not to out myself as an English major or anything, but the connotations of "salvage" don't exactly warm the heart. It's not a particularly hopeful word, one that seems to imply we're just trying to save pieces from a wreck.

And God how much I wish that doesn't turn out to be true. Every damn cell in my body is hoping, pleading that the treatment I received this week works, that I can move onto stem cell, that I get to grow up for real and be a doctor and have a family and travel the world and eat at the famous restaurants I can't afford right now and just fucking live.

Yet for the first time I find myself forced to confront the very real possibility that I might not. And everything is so very, very different. I'm not quite sure it will ever be the same again.