Thursday, May 31, 2012

Not quite there yet, but closer

So it seems this whole low platelet deal isn't a one-time thing.  I guess back when I started chemo I had a healthy reserve of platelets and I've been whittling away at them over the weeks and months and finally used up all my spares, leaving me with the bare minimum (or less).  Short version is that I've had to delay my chemo again.  This time I had about 83,000 platelets per microliter, better than last time but still only about half the lower normal limit and too low to start my chemo.  They're going to check my blood again next week before giving me the go-ahead.  At least they'd better, because all these office visit co-pays are starting to add up.  If I'd known it was going to be this expensive I never would have agreed to have cancer in the first place.  Anyway, we're likely going to change my treatment schedule to 5 days on, 4 weeks off, instead of just 3 weeks off.  The chemo has worn me down.  I need more time to recover.  It boggles my mind that just two months ago they were thinking of upping my dose by about 30%. 

Work's been hard.  Deadlines are deadlines and I hate making excuses for myself, even if they're really good ones, but I've had a lot of trouble focusing lately.  I know that I need to keep working, for the money, the insurance and for the sake of my own emotions.  I just never really expected it to be like this.  You ask someone, what would they do if they knew they didn't have long to live.  No one ever says, "well gee, I suppose I'd keep working a full-time office job."  I'm one seizure away from that no longer being an option.  Of course that seizure would end a lot of other things as well, including the sense of freedom and independence I get from being a mostly-functional adult with my own car, my own keys, and my own home.  I'm one seizure away from being a kid again, but I don't want to go back there.  I just wish I wasn't stuck in this limbo, this constant state of "quasi-dying," where sickness and despair makes it harder for me to work but work makes it possible for me to have anything other than sickness and despair.  If this had just hit me a few decades later, maybe I'd have enough in savings for an early retirement.  As if that's the only reason to wish cancer had waited a while longer.  The other day a co-worker of mine told me I was lucky to be fighting this while I'm still young and strong.  I couldn't help but sarcastically reply, "yeah, it would have sucked if I didn't get cancer until my fifties or sixties."  He admitted that yeah, that was a dumb thing for him to say, but I reassured him that I knew what he meant and appreciated the sentiment.

Over the weekend I visited my parents to celebrate my recent birthday (I should probably update those "29s," but for some reason they all look so much nicer than "30s").  It was stressful, to say the least.  They invited over a few other relatives, including some that are a bit too high-energy for me.  Strange, active people.  I put on a brave face and soldiered through it, for my mom's sake rather than my own.  I felt cornered, in part due to my position at their too-small table in their too-small kitchen, and also because I was the center of attention at a party better suited to someone a third my age.  By the end I'd had enough.  Over the last year I've developed a far greater capability to withstand discomfort, but I've also lost a lot of patience for utter nonsense.  I think there was supposed to be some sort of puppet show but I politely excused myself and slipped out to have a moment to rest.  I felt beyond exhausted and had trouble keeping my thoughts straight.  I had trouble forming opinions, and articulating them.  I didn't feel I was safe to drive, so I spent the night on an uncomfortable air mattress on the TV room floor.  My brother and his wife were using the bedroom I'd used during the month after my surgery, when I'd stayed with my parents.

I don't get to see either of them often enough.  My brother isn't an outwardly emotional person.  He doesn't like physical contact, or expressing things as scary and dangerous as feelings.  He shows his affection in other ways, and over this last year he's been there for me in every way he could, given that he lives half-way across the country.  We'd kept in touch through e-mail but this was the first time we'd met face-to-face since before my surgery.  I know that it must have been emotional for him.  I wonder what he thought I'd become, and how close I was to his expectations.  Did he feel relief that I am so close to what I used to be, or sorrow at the significance of my shaved scalp, and that scar over my brow?

He, his wife and I spent some time together.  That's all I'd really wanted.  Not some party with loud relatives, or "events," or "activities."  I just wanted to be with my brother and sister-in-law for a while. 

Maybe it's time for me to do something other than struggle for adequacy.  I can't retire, but I can take vacations.  That sounds like the sort of thing a 30-year-old does from time to time, right?

Thursday, May 24, 2012

Chemo sucks (finally)

Sorry I've been a bit absent as of late.  It's been busy at work and to be honest, I just haven't wanted to think about having cancer for a while.

Last month I had my usual finger stick and my doctor informed me that my platelet count was too low to start the month's round. 53,000 per microliter (normal is about 150,000-450,000). He told me that it's nothing to worry about, no real concern, but that he wanted me to wait a week to recover before starting my next round. A week later I'd rebounded to just shy of the lower end of normal, so he gave me the go-ahead on the lower dose. It was kind of a bummer, since I'd tolerated the chemo so well for so long. My other counts (RBCs and WBCs) were fine.

How he explained it to me, when a patient takes chemo it damages their bone marrow and reduces their ability to produce blood cells. Give the body some time to recover and it can usually repair about 99% of the damage. Now, that's the number he gave me so it's what I've got to work with. I have no idea how accurate that is. So even though the body can almost completely recover, there is a small amount of permanent damage. Then next time, the patient will recover to 99% of their new normal, for a little more permanent damage, which brings them to about 98.01% of their original baseline.

The makers of Temodar suggest that patients only take it for a maximum of 2 years, regardless of its effectiveness. 24 doses means their blood's about 21.4% compromised.

I've always hated math.

I saw a series called The Unusuals on Netflix that has an interesting take on brain cancer.  It's about a group of NYC detectives.  It's not a particularly great show - each character basically has exactly one character trait - but one of the characters has a brain tumor and shows a lot of the same symptoms and anxieties I've seen in myself and other patients.  He decides to try to ignore his tumor, because he doesn't want to end up a vegetable in a hospital even though his doctor tells him he'll be dead within months if he doesn't get it treated.  Throughout the nine episodes I watched (not sure if there are any more), he suffers hallucinations, changes in his sense of taste and smell, headaches, and of course all the fear and uncertainty such a diagnosis brings.  I think the show got canceled after that so I don't know if he ever does get it treated; the closest he got in the episodes I saw was sneaking into a hospital with the coroner for an MRI.

It's a good enough treatment of the disease that I wonder if it isn't based on some real life experience.  Worth a watch if you have Netflix streaming and nothing better to do.