Friday, June 29, 2012


You get to feel like your luck is pretty bad.

Seriously. When some doctor tells you "you've got cancer," it's pretty hard not to feel unlucky. I know plenty of 30-somethings who don't have cancer, why the fuck should I? Hell I know lots of 50-somethings who have lived cancer free lives, so I must not have the greatest luck to be where I am.

I've written before about how cancer lowers your expectations, redefines normal and adjusts all the scales. Everything becomes relative to the big C. Like how "lucky" I am to have Hodgkin's and not some inoperable, fatal spine tumor or something.

But even within the relative luck of Hodgkin's, the not serious cancer, things are pretty unlucky and serious.

ICE chemo does not discriminate between good cells and cancer cells, so it hits your blood counts hard. Patients often enter a state called neutropenia; a neutropenic person lacks white blood cells, most importantly a kind of white blood cell called neutrophils, which fight infection. This does not necessarily happen to everyone, but it definitely happened to me. I had to give myself a shot (a cancer first) to minimize the window of neutropenic time.

Many neutropenic patients go about their lives just fine until their counts recover. Avoiding bacteria and disease is key. This is of course not 100% possible since bacteria live everywhere. Neutropenia is like taking off your armor in battle and relying on the other guys to miss. It's a game for luckier folks than I.

A week ago I ran a fever that spiked at 101.5. In my state, there was no way to avoid being hospitalized, pumped full of broad-spectrum antibiotics, and put into a bubble until my counts recovered. (OK, it's not a literal bubble, just a room I can't leave.)

Finally decide to take some vacation time and I spend half of it in the hospital knowing I'll be back Independence Day for more chemo. And this round will crush my cells, so I could just be trapped in this cycle until superchemo. An infection this time does not mean there will be another one later.

You know, if I'm lucky.

Friday, June 15, 2012


The summer of 2002. I had just stumbled out of my sophomore year at UMass and I'd never felt emptier.

I kept trying to piece together that most ultimate of phenomenological questions: How did I get here? Heidegger has a concept that translates to something like "thrownness" to describe the relationship of the subject to time. How we are thrown into the present moment, and while it is the very nature of, the essence of consciousness to provide an answer to the question, to construct our world not just in space but in time, in narrative, when we try to suspend those processes we begin to experience not the constructed, floating opera but the raw opening into life that the present really is.

Mostly then I was wondering: who was that guy? Walking the Longfellow Bridge over the Charles River, heading to Mass General to get some tests done, listening to Tori Amos on my discman (it was 2002, remember), she was singing "This is not, this is not really happening. You bet your life it is. You bet your life." Those were the two strongest sentiments I had about the situation I was in: this is not happening, and you bet your life.

Today, there's no escaping that this is really happening. There's no narrative, just, like Bishop says, "everything connected by 'and' and 'and.'" This is the now I've been thrown in and there's only so much strength the past has to offer.

Back then, my doctrine of "wait and see" had ceased to be a mantra for remaining open to life. It had become an excuse not to change. I didn't much like myself and I was scared of being alone. Any situation that made me feel more interesting or brought some company into my life I would not reject. "Wait and see" had become a way to let wounds fester, not to lift a finger to stop myself and others from getting hurt. A way to take stupid risks under the guise of playing it safe.

I find myself thinking of that guy today as I cross the same bridge back to the same hospital, no longer the scary mass of unknown and alien sickness it was then, but an even bigger monster that has swallowed me. I have to make a home in the belly of this beast, avoid false hopes as readily as despair, and keep telling myself "wait and see, wait and see."

Friday, June 8, 2012


So by now I've probably told most of you the bad news, but here's the skinny:

My PET scan showed uptake in some lymph nodes along my ribcage just under the field of radiation. The cancer they blasted with radiation is gone, but some sneaky bastard cancer has cropped up where they didn't radiate at all.

Ordinarily they would biopsy to confirm that it's Hodgkin's even though it's pretty obviously Hodgkin's, but this cancer is in a bad spot under my ribs and close to my heart. The surgery is riskier than it's worth, so in true House style we skip straight to treatment, which means back to chemo.

The bitch of it is -- yes, that's actually NOT THE BITCH OF IT yet -- this new chemo, ICE, is even more nasty than ABVD, and because they want to infuse it very slowly, they are actually hospitalizing me for three days to get it done.

I'll be at MGH Wed-Fri if you want to come visit. I promise to have my ass hanging out of a hospital gown.

My oncologist says I have to do this at least three times, spaced about three weeks apart.

You know, I have all these things I've been waiting to do -- waiting to feel better, waiting to be healthy. It occurs to me now that I should do as many of them as I can, quickly. There might be a bigger lesson there but I'm choosing to ignore it.