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.

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."
http://www.youtube.com/watch?v=lfPgsNN2EbA

Summer 2012

Ages since I posted last.   I went back to teaching in the spring and between classes, dissertations, administrative duties, writing and Skip's cancer, I stopped reading (except for class)-- and stopped writing here.  A few desultory notes in my hard journal, but even that book has huge gaps.  The only personal journal I've been keeping regularly is the one that tracks the progress of Skip's disease and the main events of our daily lives.

The last CT- scan shows that the cancer is stable (not getting better, but not spreading either), but the rhythm of our lives tells me that something has shifted.  Skip's reaction to the chemo treatments has gotten more severe and it lasts for longer periods of time. We had our first night-fever-scare trip to the Emergency just last weekend.  And he is coughing more.

Walks are more difficult and the past week I've been going on our daily post-dinner evening walk alone.  Sweet smell of honeysuckle by one house and our favorite garden, the one that reminds us both of the summer we spent in Provence, has beautiful purple clematis blooming on the fence.  The house and yard seem neglected- and the last time Skip and I walked together, we wondered whatever had happened to the lovely shy man who used to live there all year round.  The cats at the neighborhood Siamese rescue center still come running to greet me.  Mimi with her little ghost face is the most talkative.  Tough Rami is more aloof, and I like to think he misses Skip.

 I've started reading again and hope to have something bookish to post very soon.

Lost Bracelets

Since Skip's diagnosis, I've lost a pair of favorite sunglasses and one cloisonné bangle bracelet.

I broke the clasps of two other, favorite bracelets-- and now have gone back to wearing a sturdy copper bangle that my friend Ellie gave me years and years ago, the night before she left the U.S to move to Germany. Every day it seems I forget at least one item I need to take to work with me. The sign of too much to think about, my shrink says. But then I already knew that.

The teaching week is over. Gray and cold has settled in after weeks of balmy, near California weather. My classes are going well, but I'm scrambling to keep up with the reading. And this week my advanced pedagogy class was stressful. I showed David Mamet's Oleanna, and afterward people seemed almost too stunned to speak. A few random comments-- good observations, but not exactly a discussion. After the screening, some of us went out for food and wine/beer. The ostensible reason was to continue discussion of the film, but nobody really had the heart. So we quickly moved on to other topics--teaching, recent films, the upcoming Cinema Studies conference. It was a nice evening-- but it pushes back discussion of Oleanna

by another week.

More tests next week. The next CT scan that will tell us if the cancer has progressed.

weather and lesions

Amazing mornings all week. Sunday I woke up to great streaks of purple and gray in the sky, and a murder of crows perched on the dark tree branches. Later, 2 peregrine falcons came in-- so dramatic and stern that even our resident buck was subdued. He stood absolutely still until they had gone. Then this morning, incredible low fog-- reminded me of the romantic gothic landscapes Sally Mann photographs in her beloved Virginia. I just got a shipment of some fast speed b&w film yesterday-- so once I got muffins in the oven, I put on my leather jacket, grabbed my camera and went outside. Very mild weather and the trees were gorgeous in the fog. Spent about 20 minutes taking pics. A nice respite from some of the rigors of the week-- a week that's been very overshadowed by cancer concerns. New lesions on the top of Skip's skull-- at least new to us-- were confirmed by an X-ray Monday. He now has cancer in 6 areas of his body, that we know of: lung, liver, spine, chest cavity, base of skull and top of skull. Daunting. And so this week for the first time in weeks, I've been waking up with a face wet from tears. Apparently, I'm crying in my sleep.

I've been re-reading Artaud for an independent study I'm doing with a student. His Theater of Cruelty still as exhilarating as it was when I first read it-- back in my undergrad days. "The world is hungry and not concerned with culture" and "what is most important...is...to extract from what is called culture, ideas whose compelling force is identical with that of hunger." A challenge to all us working in the field of cultural aesthetics and politics.

unbirthday party

Woke up this morning to a mini-icestorm. Paper thin sheets of ice covering deck and driveway. Skip went out to get the paper, but came back exhausted from the effort. Some friends are supposed to be coming for dinner tonight. I have no idea if they'll actually brave the cold and slippery roads, but I put on some Coltrane, made espresso, and began marinating chicken for a lemon-olive tagine in case. Now my fingers are yellow from turmeric and saffron threads, and I keep an anxious window-watch, waiting for the sand/salt truck to come. Very quiet outside. Much too cold for the yappy dogs who usually vex my Saturday mornings. No wind--just grey, still, cold.

It's been an interesting transition back into the rat race of teaching and service that marks the beginning of every spring term. My classes are fine, although I've already had at least one discussion that troubled a number of students. Luckily, they talked to me about it, so I can do some damage control before the next class. Mainly it's been hard to get a handle on my class prep schedule. Find myself struggling to keep up with the reading-- even more so than usual. Probably because my "other" world-- the world of Skip's illness--always shimmers in the background. I imagine it like a stage scrim-- a sort of ghost world separated from my day-to-day distracted life by a sort of reflective skin, a permeable membrane. Easy to get caught up in memories and, sometimes, raw emotion. Lump in my throat the other day while talking to a student about theater theory, because I mentioned a play Skip and I worked on once. Not sure how in the world I'm going to be able to discuss Artaud with him without sobbing.

Skip's doing well. Back at work in the studio after a very fatiguing and fatigued post-chemo week last week. One more good week before he gets hammered with another treatment. He's reading On the Road, and understandably dreaming of open spaces. Says he keeps hearing Kerouac's voice as he reads-- slowly, slowly-- through that crazy stream-of-consciousness prose.

New Year; New Treatments

It's been about a week since Skip had his maintenance chemo treatment-- which consists of one drug instead of two. And the week has been all too sadly familiar. The first two days were okay and then extreme fatigue and listlessness set in. I think I was overly optimistic, thinking that alimta alone would be much easier for Skip to handle; it has been somewhat easier, but there is nothing like the dramatic difference in energy and drive. I had imagined. So a difficult week, since we both have to readjust our expectations. I had been planning to go to The Society of Cinema and Media Studies conference in March, but I don't think I am going to be comfortable leaving him alone for three days, even with friends to help us. Sorry to miss the conference and especially sorry to miss seeing friends and former students, but these long naps are worrisome, and there are times-- when he's too quiet for too long-- that I check, heart in throat, to make sure he's all right.

The balmy warm days of last week have given way to true winter as the Canadian cold front has snaked down to us at last. Snowy and cold, so we've been making lots of fires. Yesterday, Skip opened the paper and saw a terrible picture of a house completely destroyed by a woodstove flue fire. He blanched ( hard to do since he's a bit pale these days) and went to the hardware store to buy a creosote log-- and we spent the evening "cleaning" the flue while watching Raoul Ruiz's strange 4 hour epic Mysteries of Lisbon-- the only film adaptation I've seen that actually feels like a 19th century novel. Amazing long shots through portals-- and shots that open up from pictures and puppet theatres into actual live-action scenes. These coupled with a camera trick that makes everyone look as though they're puppets on strings gives a strange claustrophobic feeling even in the panoramic scenes. Very effective.

Skip's been re-reading Cat's Cradle by Kurt Vonnegut, and I sadly took most of my leisure reading back to the library. I'm teaching again and, like the students, have a full load of required texts. I did keep a volume of Philip K. Dick stories, which we're both reading at bedtime. Started with "The Adjustment Bureau". We watched the film, starring Matt Damon, a few weeks ago, and I was curious about the original story, since the film seemed so un-Dick-like in so many ways. More romantic than Dick and not nearly sly enough. (For people who don't know the story, the premise is that the world is kept on track-- and things happen as they do-- because of the corporate machinations of an adjustment team. Usually we don't see the men-in-black because all runs smoothely. But occasionally there's a glitch. We're in the wrong place at the wrong time; we meet someone we're not supposed to meet. And then they have t go into high gear and erase our memory banks). I'm about half way through the story now and so far it's much funnier than the film. It's a dog's failure to sound the alarm that starts all the bizarre adjustment glitches in the story-- and the scene in which the "clerk" in black confers with Fido is super, deadpan mordant humor.