Thursday, July 26, 2012

Zap City Redux

The last time I posted we were waiting for test results.  We saw the oncologist Tuesday and the
news is not good.  The MRI shows that the cancer has spread to multiple spots throughout Skip's brain-- too many for a discrete targeted radiation treatment. (Chemo doesn't cross the blood-brain barrier, which is why the cancer is having such a party up there).  Dr. Dayton has recommended total brain irradiation, and we have an appointment today to see the radiation oncologist.  After an initial consultation, there will probably be a series of 14 or 15 treatments, much like the ones he had on his spine last year.  He'll also be taking steroids throughout this whole thing-- lots of steroids. "They'll make you ravenous," the doc enthused.  "And a little aggressive." (- I immediately thought of  Nicholas Ray's Bigger than Life, a film about steroid-induced psychosis, and shuddered.).

The hope is that the radiation will halt the metastasis (the spreading of the cancer)--there are possible side effects, some of them quite nasty. But the doc said that the worst ones don't kick in until about 2 years after treatment. And he was pretty blunt in saying that with treatment Skip would at least HAVE 2 years that he wouldn't otherwise have.  So, it's a way of buying time.

I'll post again when I know more.  I've been listening to John Zorn and Marc Ribot's Jazz in Marciac 2010 concert for the past 2 days, trying to catch a thread connecting me to what I think of as my normal life.  My friend Jenny called to say that she wants to come visit (probably after Aug 15 when she's done teaching).  As soon as she offered, I burst into tears, great racking sobs--I didn't realize how exhausted I am.

Saturday, July 21, 2012

Coming Down Again

The ups and downs of living with cancer (either your own or someone else's) is frequently described as an emotional roller coaster ride.  I don't really like that analogy because it implies that somewhere in the dips and heights and creaky jolts, there are thrills to be had.  Fun.

For me, the ups and downs have more resembled the junk pyramid.  In the early days, when we spent so much time waiting for doctors to call, waiting for appointments, waiting for test results, I kept thinking of Lou Reed's song "Waiting for my Man"- -a junky's lament about waiting for his dealer--"the first thing you learn is you always gotta wait." I kept thinking of Burroughs' observation that drugs are the perfect commodity, and that drug trade is built on the principles of monopoly: "always catch the buyer hungry and always make him wait."  In the cancer zone, this basic principle applies to legit, legal treatment as much as it applies to the illegal drug trade Burroughs was describing.  It's hard at times not to be cynical.

Right now, Skip is on a hiatus from the "maintenance" chemo therapy he'd been having.  His balance had gotten very bad and he was tired-- too tired to work or do much-- most of the time. A horrible heaviness in his legs made it difficult to walk, so I took more and more of my evening walks alone.  His eyes and nose ran constantly; the incessant tearing made it difficult to read.  The steady nasal drip was just annoying and, on the few occasions when he could go back to ceramics, made it extremely difficult to work.  Fuzzy head; chemo brain. Hard for him to remember words or  names.  Hard at times to make connections.  He was cold most of the time.

In the wider scheme of things he was certainly doing much better than the other people we saw at
the infusion center. No severe weight loss.  No nausea.  For the most part, he has been able to eat just about anything, so he's maintained his weight.  He's kept his hair.  But his world kept shrinking, as one by one the things he could no longer do began to outweigh and outnumber the things he could still manage.  So when he went in for chemo three weeks ago, he talked to the doc about altering the regimen.  And the doc agreed to halt chemo until Skip regained some strength and the cancer resumed progress (it hasn't been spreading since we began chemo treatment in Sept).  Dr. D was worried about the difficulty Skip had maintaining balance, though. And he said that if Skip's balance didn't improve within 2 weeks, we should have an MRI to see if the cancer has spread to Skip's brain.

So, this week, S. had his usual CT-scan to check the progress (or-as we hope-lack thereof) of the cancer-- and he also had an MRI of his brain.  Between the dyes injected into his system and the general ups and downs of his condition, though, it's been a stressful week.  He couldn't really eat much at all for days--just soup.  And he's been sleeping a lot.  Yesterday he seemed to rally.  Asked for pork chops, of all things, for dinner.  So I had hopes that today he'd feel more energetic, possibly able to go see a film with friends. But this morning he's lethargic again.  When I gave him some fruit to eat, he had to think about each mouthful he took.  Such a slow, deliberate way of bringing spoon to mouth-- like an alien trying to puzzle out the odd customs of a barbaric race.

So we're back to the down end of the cycle.  And it's not like the whizzing rush of a race down the tracks.  Much more like the Rolling Stones drug lament "Coming Down Again."