January 09, 2005
Lymphomaniac
So I’m starting this now to update my peeps and have an instaoutlet for talking about this whole lymphoma thing I’ve got going on. For those just tuning in, a recap.
It started with a cough. Okay, not really, it started months before the cough with back pain and tiredness that I just figured was my own fault for not eating right or breathing right or doing yoga right or sleeping right or being the right kind of person with the right kind of hair or whatever. I bought a new mattress and pushed through it. Then the cough came in like Octoberish. The annoying cough I get every fall and eat too many of those barley malt-sweetened cough drops for. Except this one wouldn’t go away. To the dismay of my co-workers and superheroesque boyfriend whom we’ll just call T for now. T nudged and nudged “go to a doctor.” But all-natural, allopathic-loathing me thought it would just go away. But still, it didn’t. So finally I hit the docfinder part of my insurance co’s website and found the closest doctors to my office and picked the one woman and finally went.
Dr. H listened to my chest, tapped my knees and told me I didn’t have pneumonia and that the cough would go away in a week. Her nurse took my blood. After the nurse handed me gauze to put over my needlehole, or her needlehole, really, I pressed to stop the blood and she said, “You people never press hard enough.” Anyway. I was sent home with a prescription for codeine-laced cough medicine that I would have killed for in high school.
Cough stayed. Two weeks later Dr. H calls, says that my bloodwork shows that my liver counts are high and I should get an abdominal ultrasound. I make the appointment for two weeks from then and in the meantime go to Dr. L, an acupuncturist-slash-MD. I bring my blood tests (which I had to ask Dr, H to hand over) and he keeps saying in his lovely South African accent, “Something’s wrong, something’s really wrong.” My liver counts are high, but my platelets are low, my sed level is high and, for the first time in my life, I’m anemic. Dr. L picks up the phone and gets me to an internist the next morning.
Dr. P the Park Avenue internist is my age, which is jarring, but he’s competent and nice with cut-on-the-bias shirts. And he sets up an ultrasound in way less time than two weeks, I think the next day. It’s weird because I mostly associate them the episode of Friends when Rachel pretends she can see her baby. The radiology place is on upper Park Avenue and The View is playing on the waiting room television (fact: most doctors’ waiting rooms now have televisions instead of magazines. I mean they have a few, but this one had two copies of the same issue of a 2001 Martha Stewart Living and some golf magazines. They all have golf magazines.) After a couple of hours, I go in to a tiny room with vertically striped wallpaper and a nurse has me put on a robe and rubs some ultrasound lube on my belly and rubs a kind of electric razor without the razor on it on my ribs and stomach, with the lights dim. There’s no Ross and I’m wondering if my liver will look ravaged and ragged or swollen and diseased. She says my liver looks fine. She says there are no gallstones – which was Dr. P’s best guess. So, then the doctor of this radiology place comes in. He’s late-fiftiesish, totally gray hair, white coat. The nurse stands next to him while he prods my lubed stomach. He’s prodding. He asks if I’m married. I pause, wondering what this has to do with my liver, but answer that I’m single. “Why,” he then asks, “are all the pretty girls single and all the ugly girls married?” I’m stunned, he’s still rubbing my belly, the nurse is silent. I fake some laughter and don’t answer. He turns to the nurse and says, “No, really. Why is that? I wonder that all the time.” And she says, with appropriate terseness, “I don’t usually ask.” My heart starts beating and I wonder if I should tell this guy to fuck off, but I’m mainly naked, and so I just decide to think of him as a dinosaur, an old guy who knows no better and feel a little sorry for him. He tells me then that he feels some lumps. In my belly. He’s shifted from Doctor Dino-flirt to doctor serious pretty quickly. He wants me to get a CAT scan, today. I get a quick chest X-ray from an older woman who is kindly and go back out and wait. When they call me in over an hour later it turns out Dr. Dino has strong-armed my insurance company and the CAT scan place into seeing me that day. When he gives me my ultrasound film he says, “Let’s hope this has a happy ending.” Not good, but I was still in so much denial. Deep, deep denial.
The denial didn’t lift when I moved to another depressing Park Avenue office (no TV this time) and was made to drink five glasses of nuclear lemonade. Then scanned.
The denial clung when Dr. P called a couple of days later wanting to talk to me about my results. In person. I mean I must have known on some level that doctors don’t just want to see your smiling face. If it’s no big deal, they tell you on the phone. If it’s a big deal, they seat you down and get graven faced and tell you bad things and you cry. But first, they examine you.
I went in – five o’clock on a Friday – and he took my temperature (over 100 degrees as it had been for the last month, pretty much constantly). When I asked about the test, he said he would tell me in a minute. This should have started to tip me off. Okay, I’m sure it did. I was nervous. But it wasn’t till we sat down and he talked for too long without telling me anything that I started to go cold in my limbs and feel fear. By the time he said, “I don’t mean to be the grim reaper, but…” I pretty much knew this wasn’t about gallstones or gas or my liver. By the time he got to the word cancer, I was already in the world of shock, where you’re ten steps outside your body waiting in glass until it’s safe to come home. Oh my god, I’m going to die, I thought. Oh my fucking god. And I didn’t get the photo montage of age three till now or anything but suddenly everything seemed very steep and sheer and immediate and ready to end. He kept talking, he paused. He directed me to tissues. Then he got to the “It’s very treatable” part. “Upwards of 95 percent.” But words like chemotherapy, lymphoma and everyone’s favorite C were spiraling in me like Dorothy’s Kansas house right before the Technicolor.
It was weird. It was rush hour. And the night was Technicolor. Sharp and clear and cold. November by now. Lights, people. I cried while I walked toward home. Knew the subway was out of the question. Knew a cab was an out-of-reach dream. Walked. And walked. Stopped at St. Bart’s church. The doors were open and there was light. I walked in, and it was cavernous. I went to day care there when I was little. In the basement. Had never been in the sanctuary. Huge, uncomforting, but quiet. Sat for a moment. Reeling, numbish. Left. Continued walking. Stopped again on Sixth Avenue in front of the Grace building. Big letters in front of me GRACE. Didn’t notice them then, though. I had to make phone calls. I told my boss when I left that I would be back to do some more work (we were on deadline), unless, I had told her, the news “was really bad.” I was kidding, mostly. But now, the night was ticking on and proofing pages was not what I was going to do and I needed to call. I did, finally, and told her I wouldn’t be back that night. I was crying and she asked what the doctor said and I told her I couldn’t talk about it yet. And then tried to call a friend, anyone who could come meet me and get me home. But no one was answering their phone, so I just kept walking. Walked the entire four miles or so home. Called T, asked him to come over. Told him. Told him they needed to do more tests to be ultra sure but that they were pretty sure. And because he’s great he told me it would be okay and held me and said we would get through this.
And so. There’s more. With really bad doctors and then good doctors and painful procedures and trips to the emergency room and a full-on biopsy surgery that gave me the tough-ass scar on my chest and moments of terror and revelation and then rains, torrents of love and support and the wig-buying tale. But I’ll save it for my memoirs or a more appropriately scaled blog-sized entry. Now, I’ve done two rounds of chemo, am gearing up for my third. Feeling better today than I have in a while. The lymphoma symptoms are all gone – the cough is gone, the fevers, night sweats, back pain, anemia. Gone. So is my hair. It started coming out in clumps so T and I gave each other buzzcuts on New Year’s Eve. Then I took a razor to the skin the other day and I look exotically alien. But this is New York, so I’ve been kind of shyly saying Fuck it, and leaving the Hasidic Jennifer Aniston-esque wig at home. There are hats of course and I need to wear one almost all the time. Who knew hair was so insulating?
Anyway, today I went to the Earth Room. You should go. 141 Wooster Street. It’s free. It’s 3,000 square feet or so of dirt. Just level, fresh, dark, dirt. An installation piece done in 1977. Same dirt since then. It’s so peaceful in there and smells so good. And on Sunday there’s a lovely young man named Brian at the desk and he will tell you all about the dirt. I’d been meaning to go for years. And at first it was disappointing, like, this is it? But the longer I stood and just took it in, the smell, the feel the texture, the light, the fact that what could be someone’s two million dollar loft apartment is completely filled with dirt, the more alive and calm I felt. It’s hilarious and beautiful and serious.
Thanks to P and B for putting this together, this blog thing. Thanks to everyone who’s been so wonderful with calls and care packages and love and support. Thanks.
Love.
