In the Flesh

September 10, 2008 at 3:09 pm (Uncategorized)

I know it seems like I’ve vanished into the ether. I haven’t. Quite the opposite, I’ve been wallowing in physicality. I’ve been preoccupied and occupied with my flesh and its (mal)functions.

As I wrote a while ago, I’ve started a new medical regimen recommended by a new doctor I saw at the University of Cincinnati. Ever since my sarcoidosis entered my nervous system last November, I’ve suffered from debilitating headaches and vertigo. I have committed to what I can only describe as a rigorous new protocol that involves twice-monthly chemotherapy (Cytoxan is the name of the juice I get), daily doses of thalidomide, continued monthly infusions of Remicade (the anti-TNF drug that is supposed to help with the inflammatory process related to sarcoidosis), and, just for the hell of it, I guess, my steady daily dose of prednisone (although the Cincinnati doc swore I could begin tapering off the prednisone as soon as my neurological symptoms improved.)

Like I said, none of this has proved to be ethereal. Chemo has made be acutely aware of my stomach, as well as my guts and bones. Susan Sontag wrote brilliantly in her essay, Illness as a Metaphor about the metaphors and myths that surround cancer and its treatment. She examined the rhetoric that imbues cancer (and later HIV/AIDS). Using a historical lens, she compared the images of nineteenth century tuberculosis patients with the modern patient and found that many of the cultural tropes remained the same: the wasted person melting away, poetically, of course.

I’ve written before that we—as patients and as a society—need to divorce sickness from the freight cars of baggage we carry with it. As I’m sure anyone who has had any medical condition that lingers for more than five minutes will attest, you get slammed in the head with this baggage when you have a chronic disease. An army of do-gooders crawls out of the woodwork to tell you to let go of your anger, that old pain makes you sick, that modern medicine will kill you, and on and on and on. It’s the same old tune that Sontag wrote about.

I hadn’t realized that I, too, was holding onto some of these misconceptions until I began chemo. I thought that I would feel a little upset in the tummy. I’m not too proud to admit that I even hoped that I might lose a couple of the many extra pounds I’ve gained during my four years on prednisone. True, there was a twenty percent chance I’d lose my hair. But I held in my mind a highly stylized vision of chemotherapy. I, too, would shed my excesses—fat, hair, disease—and emerge healed and cleansed.

Hah. Chemo doesn’t just make you nauseous. It makes your stomach feel like it has staged a rebellion against the rest of your organs. “We’re seceding!” scream my guts, “And we’re taking that large intestine with us!” Imagine me, a staunch Democrat, having to hear the rhetoric of states’ rights coming from my innards. The new generation of anti-nausea drugs like Zofran does a lot to calm down the revolution within. Unfortunately, they make my headache worse. When I’m dry-heaving bile, I opt for the headache, but still, it’s a crappy choice. Chemo also makes the rest of me hurt. I feel like I’ve got the flu. My bones ache; getting up to drink a glass of water seems like a journey to the South Pole. I’m so tired that sometimes even listening to a book on tape is too much effort. Instead of transcending my body, I am more deeply trapped in it. And this confinement doesn’t just last for the day or two after each treatment. It takes about a full week for me to return to “normal”—you know, back to the crushing headaches and the feeling that I’m living aboard a ship. So, now I view my life as one week “on” and one week “off.”

I’m giving the chemo six months. I even got a port installed in my chest, so that instead of having to start an IV on the veins in my hands the prednisone has turned into mush every time I go for treatment, the nurses can now just insert a needle into my pectorals. I push away the image of Uma Thurman in Pulp Fiction getting jabbed in the heart with a giant hypodermic filled with adrenaline. But the scene sticks (no pun intended), and every time I turn my head, I can feel that port lurking beneath my skin, keeping my mind attuned to my flesh.

Every evening, I get another dose of physicality when I take my thalidomide. Yes, it is indeed that thalidomide—the drug designed in the 1960s to stave on morning sickness in pregnant women that ended up causing thousands of babies to be born with serious birth defects. These “flipper babies” went on to live normal lives—or as normal a life as you can without arms or legs, and after a while doctors figured out that the drug worked well to treat certain types of cancer and auto-immune diseases. Of course, getting pregnant while taking thalidomide would be an exceptionally bad idea, and its manufacturer Celgene Corporation, does everything short of sterilizing me to insure I don’t get knocked up. I had to read a letter from an association of thalidomiders (what the adults who were born with the defects call themselves) in Canada. I had to sign and swear that every time I have sex, I’ll use two kinds of birth control (even though the sarcoidosis has shut down my pituitary gland and thus my ovaries), and every time I take a pill, I need to open a packet that contains a picture of a thalidomide baby and another version of the warning. Then, I have to push out each pill through a picture of a pregnant woman with a line through her; each pill is embossed with the same image. And every month, in addition to having my insurance company pay the Celgene Corporation $6,000 (I repeat, $6,000), I have to call the company and promise (again) that I’m having doubly safe sex.

It can be overwhelming—all this attention I pay to my reproductive system, my rebellious guts, my aching bones, and my throbbing head. But sickness isn’t sexy. So why should I have assumed that getting un-sick would be any less physical? I do try to engage my brain and my soul in the process of healing. As the Cytoxan drips into me, and as I swallow each thalidomide pill, I envision myself well. I imagine a day when my body won’t swallow up the rest of me, when I can spend a few hours lost in a book or a piece of music, not in my flesh.


  1. Sharon said,

    So sorry that you’re having to endure such bad side effects from the chemo on top of the symptoms of your illness. I really hope it helps you to get better.


  2. Dani said,

    Dear Rebecca,

    Here is my latest miracle which I hope can help you. I saw some naturopaths last week and told them in 60 minutes my life history, and said that I have been really sick since contracting “viral” pneumonia 5 years ago. I also think I have CMV as another naturopath did some vega testing and said I had it. So they made me a herbal tonic of astragalus and echinacea. I have only been taking it for 4 days but it is truly a miracle. The candida is clearing up, the brain fog is starting to lift, and although I haven’t perspired in 5 years, my sweat glands are staring to work. Also, my tummy aches are starting to settle down. So they have definitely done something to improve my immune system. “It’s interesting because Livingston always said that the key to curing chronic disease and cancer is to improve the function of the immune system.”

    So if you are able to, please find a good herbalist who can make you a tonic to help improve your immune system.

    Kind regards, and I won’t stop blogging until you get better, so there’s an incentive 🙂
    PS – Hildegard Von Bingen loved herbs and music – I find that when I am really tired and I cannot read, at least I can listen to music. So I think she was onto something. Hang in there – and get those herbs!!!!!!!

  3. Dani said,

    Whoops – Rebecca – I’ve just found this about echinacea ….

    “Roy, Echinacea is one thing sarc patients shouldn’t take as is stimulates part of the immune system that is already overactive in sarc. Even the medical profession agrees on this one.”

    However, “One Chinese preliminary trial also found that astragalus could decrease overactive immune function in people with systemic lupus erythematosus.61 However, much more research is needed to know whether astragalus is safe in lupus or any other autoimmune disease.”

    Then there are the interactions with all your other meds.

    I’ll get an astragalus tonic and let you know if things improve (I’m doing all these experiments because I am trying to help all my cousins with this silly disease).


    PS – I have traced my sarc back to a paternal great grandmother from County Kildare which was settled by those lovely Vikings. Now the question is, what did those Vikings do to cause all those DNA mutations?

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