Friday, January 22, 2010

Isn't It Supposed to End Soon?

Four Neupogen shots a day for eight days made my bones hurt to where it a nightmare to walk and impossible to fall asleep. Two consecutive seven-hour days on the Aphoresis machine left my veins bruised, sore, swollen, and reminiscent of those of a junkie. But, for whatever reason, I managed to harvest 6.5 million stem cells for that rainy day when my body stops making its own again and I'm in need of a "rescue transplant."

The stem cell harvesting ordeal preceded this most recent 5-day round of chemo, which marked number twelve and ended this morning. I'm patiently awaiting the inevitable onslaught of nausea, dizziness and stomach pain to drive me into fetal position for a few days, but as of this moment my body is resisting admirably.

I don't know what it was that made me think these final few rounds would somehow be easier to handle than were the others. I've known all along that chemo isn't the kind of thing for which your body can build a tolerance. I've made it this far, though, and there's obviously no way I'm going to slow down now.

My doctor came to see me yesterday, friendly as always, but armed with a dose of reality that I sometimes don't want to hear. The plan is still to complete the two remaining rounds of chemo (two!) and then to have scans done to see how much tumor is still showing up, which will hopefully then be blasted by radiation. Before embarking for Bethesda and the vaccinations, the hope is to have the tumor in remission, but the reality remains that this may not be the case. Furthermore, these vaccines are still in their clinical trial phase, are not exactly specific to my diagnosis, and just can't be viewed as the final piece of my puzzle. Hopefully, they will help teach my immune system to fight the tumor should it reveal itself and begin to grow again, but were that the expectation, we would be viewing these vaccines as significantly medically reliable rather than on a clinical trial basis.

After the rest of the scheduled chemo, the radiation, and the vaccines, I may still need more chemo. There's a chance that small amounts of tumor may still linger, and the best way to ensure that they don't spread will probably be to hit them with more, lower-intensity chemo until nothing shows up in the scans anymore. I'm fine with that, you know, I'd rather keep going until this thing is really in remission than to have to wonder if and when it's ever going to start spreading throughout my bones again. And there's still a good chance, or so I'm told, that I could reach remission on schedule, but I just don't want to be too hopeful. And yeah, I'm pretty scared.

My California girl, the one who has continually reignited my passion and inspiration throughout this hellish process; the one who effortlessly reminded me that there are still things in this world worth looking forward to, hasn't been doing so well. She recently had a seizure, along with a brain hemorrhage, and since then has been coming and going in-and-out of consciousness every few days. When I get a phone call, it's both precious and painful beyond the expression of words. She still makes me laugh, and it can feel like there's nothing wrong and everything is just the way it was, but in the back of my mind I can never help but think that the very conversation we're having could be the last we ever speak. And she's just not something I'm ready to let go of yet. I have too far yet to go to imagine doing it all without her. It's been a week since I heard her voice, and it's another heavy weight I'm willing to bear, but it just hurts on top of everything else. Still, I've known all along that I can't save her, and I knew from the start that I might never feel her close to me, and those are facts I was willing to accept. I'll just never stop wishing things were different. And it's going to hurt, I know that, I just thought we'd ease one another's pain a while longer before I inherited it all for myself.

It's hard to say that I wouldn't trade away my circumstances, or at least certain aspects of them, were I given the chance. I wish my recovery were more of a certainty, though I believe I'll eventually prevail through my persistence. I wish she were able to accompany me for more of the journey, since it seems inevitable that her stay in my life will prove too short, though it will never be under-appreciated.

I obviously feel closer to the end, whenever that might be, than I have at any point thus far. It would just be nice to know that the nightmare will actually end, at some point, preferably in the near future, and that good things await me not so long after that. I still haven't found a reason or a purpose for all of it, and I'm not expecting one to appear. I've been through twelve rounds of chemo, and only two more are scheduled. The wonderful girl from California who changed my life was unscheduled, and I don't think I'll ever find a good reason why the joy she brought me can't last any longer than it will, or why she deserves her fate and I have mine. It just seems very arbitrary. But I guess that's the way it is, and there are no reasons which exist to explain it.

For some reason, though, it still feels like the more effort I put into this incessant, arbitrary injustice, the more likely it is that good things will happen. It still doesn't make total sense to me, but I've already decided to go after the things I want, and I feel way too close to having that chance to become lazy and complacent now.

1 comment:

  1. So sad that your beloved California girl is doing poorly and that it wrenches you. Terribly unfair. And fairness was never a promise. I like that your discovery of her was "unscheduled." Unscheduled is part of joy as it is part of loss, though I'd rather forget the latter along with you.

    Your fight and hope is still inspiring, but it makes me sad and mad that you have to go through any of this. And yes, I'm willing to believe, and I do see you, at the end of your patient (pun intended) labor rewarded with calm smooth sailing, the joy of holding your loved one and your happily adventureful life.