Suck it, cancer: On the first anniversary of my diagnosis
So I’ve got some sort of condition where my short-term memory doesn’t function as it should.
That was my first public comment on cancer, written a year ago from my hospital bed on the neurology floor at Brigham and Women’s Hospital in Boston. In nearby rooms were people recovering from strokes, brain injuries, and other attacks on the central nervous system, all of them terrifying.
It was written a few days after my admission to the Brigham. The day of my admission, I’d been to four places. First, my office. It was a Monday. That weekend, my fiancee Lindsay and I had been to New York to make our wedding plans. And on that Monday, I couldn’t remember anything about the weekend.
8:57 AM me: linds, something’s wrong
8:58 AM Lindsay: what do you mean?
me: my memory is all f’ed up
Lindsay: what is wrong?
call the DOCTOR NOW
tell them it is an emergency
how is it all f’ed up?
8:59 AM me: short term, i can’t remember anything
call the doctor
tell him that is what is happening
and it is frightening
me: i can’t tell you what we did this weekend
Lindsay: I know you can’t
when is our wedding date?
can you answer that?
9:00 AM me: no
Lindsay: call the doctor
do it now
tell them it is an emergency
9:08 AM Lindsay: hi?
9:11 AM me: hihi
went to the bathroom
Lindsay: did you call?
please call Andy
I am a mess
me: because of me?
9:12 AM Lindsay: call the doctor
tell him that you have no short term memory
to the point where we went away for the weekend to start wedding plans
and you can’t even remember with whom we met with
or the date we chose
this is very important
9:13 AM me: i will
linds, i’m scared
Lindsay: just do it now
me: who did we meet with?
Lindsay: THE PRIEST
9:14 AM THREE PEOPLE AT THREE DIFFERENT SITES
Westbury Manor, The Royalton, and Fox Hollow
we went with Gerard at the royalton
we are getting married October 4 2008
it is a Saturday
we are having an afternoon wedding
ANDY CALL FUCKING NOW
me: I DON’T REMEMBER ANY OF THIS WHAT’S HAPPENING
Lindsay: Call now
or I am breaking up with you
9:16 AM me: k, i have to step out of the office to make the call, i’ll brb
9:24 AM me: okay i made it but i don’t remembe where or when!
9:25 AM please tell me you are kidding
me: i’m not
Lindsay: call back
me: wait harvard vanguard
Lindsay: Andy this is serious
WRITE IT DOWN
this is awful
Lindsay: what did they say?
me: nothing i just have my appointment
9:31 AM Lindsay: when is it?
me: i’ll have to call back and ask
GO IN NOW
9:35 AM me: i wrote “Andrew: i’ll have to call back and ask”?
wtf is wrong with me
Lindsay: when is your appt?
you are stressing out which is making it worse
9:36 AM me: i don’t know when it is
Lindsay: CALL BACK NOW
ON YOUR FUCKING OFFICE PHONE
9:39 AM and tell me when it is
me: i’m on hold
Lindsay: I think honestly you should go to the ER
9:40 AM me: you think?
Lindsay: at this point, yes
Andy you can’t remember a phonecall you had three minutes ago
and you have had to call back twice
9:41 AM can someone drive you to the ER?
9:43 AM Andy?
me: i’m looking up hospitals
me: somerville hospital too
9:44 AM Lindsay: go to the best one pleaes
9:46 AM me: ok, let me wait until ann is free
she’s talking to someone now
9:47 AM i’m going to ask ann to drive me to somerville hospital
me: it’s closer and i can walk home from there
9:48 AM Lindsay: did you remember the time of your doctors appt?
me: i haven’t called
Lindsay: Andy please call
this is very important
me: let me go to the hospital first
9:49 AM Lindsay: call your doctors office and let them know
9:50 AM k, ann’s driving me
me: keep your phone nearby
Lindsay: give Ann my cell phone number
me: to somverille hospital
Going to Somerville Hospital, the second location that day, was a mistake and blessing. The ER staff there screwed up, telling me that my memory loss was due to the Ambien I’d been taking for insomnia. They released me, literally onto the street outside. When Lindsay drove down from her job in far-away Andover, she found me wandering around Highland Avenue by myself with no idea how I got there. She smartly drove me to my general practitioner (place number three), who stuck us in a cab straight to the Brigham (number four). That’s where the blessing came in, because the neurologist on call was Bill Abend, whom we now credit with saving my life (though I doubt he’d go as far). I was tested for a stoke, for epilepsy, for STDs, and, because I’d been to Ireland in the spring, I’m not kidding, for mad cow disease. Abend made the right call (see “The diagnosis” below).
At Brigham and Women’s Hospital
I remember exactly three things from my week-plus at the Brigham, during which I don’t remember visits from my priest and countless friends, the dozens of tests, don’t remember curious interns and nurses, and not even the eventual thoracic surgery. I don’t remember repeatedly ripping out my IV. I never knew until months later that Lindsay thought something had gone wrong in surgery, because they didn’t think to tell her I was out of surgery while they told my parents in a separate room that it went perfectly. I was, blissfully, unaware. The three things I do remember: I remember the strobe light from the EEG, when they checked me for seizures (you know those warnings about seizures printed on Nintendo games?); I remember feeling the tangible worry in Lindsay when she’d lie with me in my hospital bed; and I remember being told, on my last day there, that I could go home. Unlike Lindsay and my family, I don’t remember any of the uncertainty.
To Dr. Abend’s credit, he and his colleagues made a fast and accurate diagnosis, unusual considering what I had. Its process and effects are straightforward, but it’s very rare thing: a paraneoplastic syndrome, caused by a select number of cancers that, as you might tell from the roots of “paraneoplastic”, have effects beyond where the actual tumor is. I had Hodgkin’s lymphoma, a curable cancer occasionally associated with a paraneoplastic syndrome, in a few lymph nodes wrapped around my thymus. It sounds simple now. My immune system overreacted to the presence of strange cells, but instead of attacking the tumor, it got misdirected and attacked my hippocampus.
Think of my immune system as your friend who gets belligerent when he drinks—that big guy your friend really wants to fight (the tumor) laughed in his face and dismissed him, so your friend is going to pick a fight with the very next guy he runs into, even if it’s a brother (the hippocampus).
Now, there’s not much that your own immune system can do to your brain in a short amount of time, but it can leave scabs and block signals.
And that’s what happened with me.
New memories couldn’t make it past the scabs. Left unchecked or undiagnosed for too long, this can have permanent effects. You can have symptoms indistinguishable from multiple sclerosis, you can end up walking with a cane for the rest of your life, you can be institutionalized because you can’t remember anything new. But in my case, it was simply short-term memory loss.
Abend and others also made the informed suggestion—though the treatment entailed real risks—for me to receive IVIG: intravenous immunoglobin. I was pumped full of immunoglobin skimmed from blood donations, the idea being it would vacuum up the white blood cells messing with my head. While there was no dramatic improvement at the time, it stopped the decline immediately.
IVIG and thoracic surgery were my two main treatments in the hospital. Surgery, especially, had a fast effect. My memory impairment receded quickly after the tumor was taken out.
My cancer was originally staged as a 4. But when the thoracic surgeon cracked open my chest, the tumor was puny. Stage 1.
About the tumor’s being stage 1. That’s how profound the memory loss was—people with a head that messed up almost always have advanced cancers that have metastasized. Y’understand now what a blessing it was to not remember anything from the hospital besides a test, some snuggling, and being released? I’m told I had a vague idea of what was going on, but apparently I used it as a chance to make sure Lindsay’s and my family’s got a chance to enjoy each other’s company. I’d say hokey stuff like, “I’m so glad I could bring us all together!”
Life after the hospital was still tough. The insomnia didn’t go away, because my immune system hadn’t yet realized the cancer was gone. I had unbearable itchiness from the immune response, the kind that makes you wonder if it’s psychosomatic because scratching made it better for only a second. Surgery had left one of my lungs underinflated, meaning when I made a measly mile-long walk to Frank’s Steakhouse a month later, it was an accomplishment worthy of a mass email. And the surgeon happened to “disturb” (the polite term) one of my vocal chords, so that for months afterwards I sounded like Tom Waits. Even six months later at Christmas, back in D.C. drinking with friends at the Brickskeller, I had to resort to writing notes on napkins because my voice was so weak.
Despite the successful surgery, I had to undergo six months of chemo to make sure we wiped out every cancerous cell. It took about three and half hours every other week. A total of twelve sessions. ABVD.
I give my dad a lot of credit. He lived with us for four months, and he still came up to Boston to take me to the last few chemo sessions so Lindsay never had to miss work. We watched countless episodes of Law and Order together. He bought us a new TV. I played Wii on it to help get back into shape—a Wii I had ordered just before going into the hospital, that arrived while I was in the hospital, and that I officially claim not to remember ordering against Lindsay’s wishes. (That’s my story and I’m sticking to it.) My dad cooked. He drove us everywhere. When he first moved in, Lindsay felt cramped that we had another person in our small apartment all day. But when it came time for him to move back to D.C., she really missed him. So did I, so we’ve made sure to get him back here a few times since.
And about chemo itself. It affects every patient differently. My hair thinned out enough that I felt obliged to wear my Boston Braves hat all the time, but I didn’t have to shave off my hair:
On the other hand, I lost my eyelashes and eyebrows . . .
. . . so now when people see me and say, “Wow, you’re looking really healthy,” I’m pretty certain it’s a reaction to my now-ginormous eyebrows, because I didn’t lose weight or look altogether sickly. But a guy with no lashes or eyebrows is a weird-looking guy. Also, I didn’t get sick to my stomach during chemo or have any of the other typical side-effects. The lesser-known side-effects I did have, though. I had to give myself a shot to keep my white blood cell count up (ironic, given that it was the white blood cells that we needed to wipe out to get my memory back). My libido was non-existent. And whereas I thought I knew what constipation was, well, I didn’t. Sorry for the image, but we’re talking about straining and blood. And stool softeners only helped so much. Lindsay made fun of me. Because constipation is more the norm in her family, she especially made fun of me given that I was so unfamiliar with constipation that I incorrectly took a laxative once, not a softener. It makes me wonder why it was so difficult for the Apollo missions to find the right fuel for their rockets to the moon: they could have given three chemo patients one laxative each.
More credit is due to my oncologist’s office. Dr. Sharma is just the kind of doctor you want in this situation: caring but straightforward. The same goes for the chemo tech, Andrea, who was usually the one sticking me with the IV (not an easy thing with me, with my invisible veins), switching out my bags of drugs and saline, and keeping a smile on everyone’s faces. Her own life was complicated—she’d switched back to her maiden name halfway through my treatment, which I only knew because the last name on my patient bracelet had changed—but that didn’t keep her from keeping us upbeat, even as the dacarbazine stung my veins and the saline made me have to truck my six-foot-high IV-drip-on-wheels down the hall to the bathroom every half hour.
Dr. Sharma and Andrea also did one thing that I’ll appreciate for years. They put me in touch with another Hodgkin’s patient named Erica, who had started her chemo just as I was ending mine. Erica and I wrote a few emails to each other and talked on the phone and even met one day when I was in for a checkup and she was in for a session. It was quite something to be on the other side of chemo, standing in the doorway, me with a clean bill of health, while someone else was in the recliner getting pumped full of really un-fun drugs. Erica had a rougher time with chemo than I did, but she’s close to the same clean bill of health.
I think oncologists must be quietly hypercompetitive all while maintaining a love for their patients: to face cancer day after day as an opponent, to want to beat it into the ground, but to never oversell your ability to do so. If I were to owe two things in Dr. Sharma’s personality, as well as my own, to my treatment of Hodgkin’s, it would be her ability to keep things in perspective and a competitiveness that she keeps tamped down until she needs it. I share that. I’m told that when I was diagnosed at the Brigham, I was very involved in asking questions about next steps; I was already talking in terms of plans of attack.
And why not? This cancer was an enemy. It had messed with my life. My fiancee had lived apart from me in Toronto for two years for grad school, and as soon as she finally moves back and moves in, I get insomnia and scare everyone around me into thinking I might be dead in days, or, perhaps worse, live to 90 without the ability to make new memories or be like the guy in Momento who has to tattoo notes to himself to know what’s going on. This g.d. cancer made me call Lindsay “Lisa” in the hospital. And despite my ability to keep perspective, I broke down more times than I can count. I still break down every month or two, usually about things that are profoundly unfair, existentially, like Ted Kennedy’s cancer or Tim Russert’s death or, now, Tony Snow’s death or the fact that, just after I got out of the hospital, Lindsay got laid off, we still think because of the unscheduled time she had to spend to help me. And right after that, her grandmother passed away.
There are all sorts of reasons to think of cancer in militaristic terms, as something whose ass needs a kicking. I’m competitive, so this all played in my favor. I couldn’t wait for chemo to start. I never dreaded a session. I wanted those drugs, looked forward to that metallic taste in my mouth, wanted to feel like crap for the next two days. Every time the IV went in, even though I was cringing, on the inside I was thinking, “Suck it, cancer.”
There were also a couple times that I broke down out of some silly level of joy. One of those days was October 28, 2007, the night Jon Lester started and won the clinching game of the World Series. Lester, rightfully, is uncomfortable in his role as Official Cancer Survivor of the Boston Red Sox (no one seems to remember that Mike Lowell had cancer as well). But here’s this kid, younger than me, who gets scratched from a 2006 start because of a little pain in his back, and it turns out he has lymphoma. He took time off, and he beat it, and he came back to pitch the clinching game of the World Series. Every Boston-area cancer patient loves the guy and sees him as someone to emulate. Granted, cancers aren’t created equal—lymphoma is not brain cancer or childhood leukemia. Nevertheless. Lindsay and I love him especially because he made his first start back from cancer treatment the day I went into surgery last July. And Lester’s relationship with Sox manager Terry Francona hits me in the gut just as much. After Lester’s no-hitter this May, Francona, who has one son but seems to love Lester just about as much, said, “This probably isn’t fair to say, but I feel like my son graduated and my son threw a no-hitter. It’s probably selfish on my part to even say something like that. But I think it’s obvious how we feel about this kid.”
“Diagnosis,” the article
That time around the World Series victory was a good time for me. It coincided with getting in touch with a New York Times Magazine columnist, who wrote up my case. That in turn put me in touch with a Times employee whose partner is, to date, the only person I’ve encountered who had the same thing I did (the fancy term for that thing, by the way, is paraneoplastic limbic encephalitis). I still haven’t had a chance to meet these guys in person, but the medical similarities were pretty striking, right down to forgetting our partner’s name.
The Times article is the one big “outside” thing I’ve done with my cancer. Lindsay and I both want to put the experience behind us, but we both also feel an obligation to make something of it. In our case, it was making sure doctors know paraneoplastic syndromes exist—many don’t have a clue, as evidenced by the staff at Somerville Hospital and by the Times guy’s partner’s doctors, who allowed him to have permanent effects from his cancer before figuring out what was wrong.
Lindsay’s still holding out hope that my odd cancer and our efforts since then will be enough for us to get into the “Celebrations” section of the Sunday Times when our wedding happens this October, but already I’m happy enough with weedling my way into the Times Magazine. It’s something great to worry about, considering where I started exactly a week before I went to the hospital, in a post entitled “Slowly Getting Dumber”:
I haven’t posted a word since February, and I haven’t been reading. I’d always found reading and writing to be frustrating processes; they demand change. With work busy in the springtime, my fiancee’s moving in, friends’ weddings taking up the weekends, etc., etc., I simply wasn’t interested in mental change, in challenging my brain.
But wouldn’t you know it, I’m most assuredly getting dumber. Since I stopped reading and writing in the spring, I’m not as creative, thoughtful, or patient. And double those deficiencies because of a two-month-plus bout with insomnia—by taking Ambien I’m physically rested but not mentally, and my short-term memory is entirely shot.
My fiancee thinks the insomnia comes from stress, and she might be right in the sense that the longer the insomnia lasts, the less I’m able to process a day’s happenings and the more likely I am to be overwhelmed. But what hadn’t occurred to me until this week is that by not reading and writing, I’m cheating myself out of another method of processing life’s information.
So here’s a post. It’s not detailed and doesn’t refer to much. But maybe by getting back in the writing habit, I can stave off stupidity for just a bit longer.
Lindsay hates reading that post, hates it even when I refer to it. But it’s one of my favorite things to re-read on this, the anniversary of going to the hospital, because it shows just how far I’ve come—i.e., climbing back to 100% normal. I’m back to sleeping like a rock. My hair looks normal. I’m back to being totally manic about home improvement, so that I buy a new kitchen island and assemble it by staying up until 3am. Granted I have a new community of people in my life—several doctors who want to check on me every six months for who knows how long, fellow patients, the good people of I’m Too Young for This. But to go from sleepless nights, lost weeks, needles, MRIs, PET scans, and family-wide fear . . . to go from all that to having an end-of-chemo party with tons of friends from out of town, to booking our honeymoon (we’re going to Juneau!), reading great books and writing long blog posts, toasting to friends who just announced their pregnancies, all of this great stuff. To do all that in the course of one year, knowing it means we can face anything, face it down. Every moment has been worth it.
I’m a little naive by nature but not naive enough to think many people would think their cancer was worth it. At the I’m Too Young for This conference we attended earlier this year, we met women who’d had mastectomies; a man who beyond all reason blamed an ex for giving him penis lesions; and a woman who was told she would die, fell in love with a fellow patient who was was told he would live, but she lived and he died. And there’s stuff closer to home: my mother’s best friend died of cancer—I’ll never forget her pulling her wig off just to scare me for fun, credit due to her sense of humor. All of the survivors came away stronger in some way, but I doubt any of them would say it was worth it.
For me, in my narrow case, it was.
Postscript: On this anniversary I also happened to have a follow-up appointment with Dr. Abend. I can’t tell you what a pleasure it was to drive myself to Wellesley and chat with him for half an hour—maybe ten minutes about actual health questions. He’s one of many heroes in my life from the past year, along with my oncologist, Dr. Sharma; my surgeon, Dr. Lukanich; my family and in-laws, especially my father who lived with us for four months and my mother-in-law who took notes of every discussion in the hospital; my dear friends who came to the hospital, took me to Sox games, kept me on my toes, pitched in, and donated to charity as part of my end-of-chemo party last February; my priest, Fr. Anthony; and, of course, my love of loves, Lindsay, who did more to get me back to perfect health than anyone. Thank you all.