Neutropenia

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.

Thrown

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."

ICE

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.

June 6th

I won't know anything until June 6th.

I do a PET scan on the 4th and then that's when I get the results. That has been the case since the day I walked out of my last radiation treatment. I won't know anything until June 6th.

If you think all this waiting around, wondering how shitty my future might be has worn on me, yea it has. I am fucking tired of it and my main emotional response has been anger.

Most of that anger has come out at work. Well, rephrase: most of that anger has been oriented towards work. I have been EXCEPTIONALLY AWESOME at not walking out and being like "Fuck you clowns" even though I have wanted to really bad like every day for a month and a half.

Something about being dealt a shitty hand... just makes my tolerance for bullshit go way down. This is what I've been working so hard for all my life? To slave away for shit pay at a dead end job and have everyone think I'm not good enough at it? But be too passive-aggressive to tell me because they don't want to shit on the guy who has cancer?

Anyway, I won't know anything until June 6th. But how do you feel Scott? Other than the fact that my first symptom (pain when I drink alcohol) has more or less returned, I feel fine, just fine. And that's what I tell people: I feel pretty good.

Well, that's a good sign right? I won't know anything until June 6th.

There are bad signs, and there is the absence of bad signs. Cancer doesn't have good signs.

I WON'T KNOW ANYTHING UNTIL JUNE 6TH.

100%: The Waiting is the Hardest Part

Actually, the chemo is the hardest part.

Plus, if I know my body, my luck, if there's more bad that's gonna happen, I won't have to wait for it too long.

Until then I am done and planning to not have cancer again any time soon.

90%: Eating Junk and Getting Drunk

I am drinking again and it is glorious.

A little dangerous, really, since I have a thirst to begin with and now I am making up for lost time. Everyone is very supportive of me stuffing my face with whatever I come across since 137 is not enough pounds for me to be. But is it also cool if I just get wasted every day for the next month?

Plenty of calories in beer.

Really, I am very conflicted and it's going to be a weird transition. First off the degree to which I missed drinking is a clear sign of a problem. It can't be healthy. Plus every time I've opened a beer in the last week (I had at least one Friday through Monday) I've thought "Is this a bad call? I still have cancer, maybe." I have weird, new guilt about things I used to do without much thought.

I mean what is the relationship between alcohol and my cancer? Alcohol definitely made me more symptomatic in the beginning -- made me feel worse. It seemed like alcohol + cancer was bad.

It all just goes back to not knowing where this cancer came from. If I go back to all the same old habits, eating junk and getting drunk, exercising practically never, will I just get cancer again? Did anything that I did or didn't do even have anything to do with my getting cancer in the first place? No one really knows.

It's one of those "if you don't change your direction, you will end up where you're headed" things. I don't want to get more cancer, if it's at all avoidable. I would like to work on healthier habits. But I don't want to feel anxious and guilty every time I indulge.

I'm not cool with living in fear that the cancer's coming back or believing deep down that getting cancer is somehow all my fault.

80%: The Nod

One time I was at chemo, I think just before it started turning to all kinds of shit, and I remember there was this other guy there getting started around the same time I was. None of my meds had come in from the pharmacy, so I was sneaking off to the bathroom to pee before the act became a dance with my -- what the fuck do you call those? -- stupid wheelie thing that is connected to all the tubes and machinery that I am plugged into.

Maybe I have the chrono wrong. Maybe I was on my way to puke. I'm already trying to blur out that whole phase of my life and apparently I am having some success.

Anyway, so I'm walking by this guy. He was like Skyping with someone in French on his laptop or something. Like how I was often watching HBO on my iPad or getting work done with it or reading on my Kindle or watching X-Files on the TV/DVD combo provided or some other awesome high tech convenience that makes chemo sound like riding on a train or sitting at a cafe.

It's not like in 50/50 where you sit next to two awesome old dudes who give you pot cookies. Not in my experience anyway. Not at MGH. People mostly go with loved ones and sometimes you wind up chatting with the people around you, but it's fleeting and more Tyler Durdenesque. Single serving friends, even the Mona Lisa is falling apart.

But this guy looked up and gave me a curt nod, which I returned.

That was when I realized I was a part of something now, a community of people with this absurd bond. It's hard to put into words, but it fits nicely into nods. The nod says something like "Yup, this sucks. Don't go dying or anything." And you don't have a clue who that guy is, but you feel the exact same way about him.

You meet people who had your cancer that you would otherwise have nothing in common with, no reason to think of them as more than an acquaintance or co-worker. But there it is, the cancer connection, running on a deeper level than you can process, almost unwanted.

At some point, maybe soon, if I'm lucky, the phrase "cancer survivor" will apply to me, will be a legitimate way I can describe myself.