I am the opposite of those people who won’t take a sip from your glass or kiss you when you have a cold, who festoon the toilet seat with whorls of paper. I like to say I don’t believe in the germ theory of disease transmission, and if that’s not exactly true, I do feel an ounce of prevention is not much better than an ounce of dirt. Once I heard part of a radio interview with a 107-year-old Russian woman who attributed her longevity to never peeling her vegetables, eating yogurt and drinking vodka. She could have been my guru.
I was the Impervious One. I never missed a day of school or work due to illness. I tramped through Mexico with friends dropping left and right from turista and had nary a cramp. I never got the flu, rarely caught cold, escaped herpes and even AIDS — especially noteworthy since that’s what killed my first husband Tony in 1994. We had a great deal of unsafe contact, including the kind that produces two sons. My sister also failed to get AIDS in a similar situation, adding to my impression I was from a race of half-Russian demigods.
Not long after Tony died I went in for an annual check-up, and the bloodwork showed that my liver enzymes were elevated. This could have been because I had a few glasses of wine the night before, but further testing showed that I had antibodies to hepatitis C.
A lot of people have hepatitis C — 4 million in the U.S., 170 million worldwide. Many of them don’t know they have it, because they have no symptoms. You can be symptom-free for decades, or for life. On the other hand, you can develop liver scarring, which leads to cirrhosis, which can kill you.
How did all these people get hepatitis C? While about half of those diagnosed have a history of injecting drugs, and transfusion was a possibility before they started screening the blood supply in 1992, many people can’t figure out how they could have contracted it. Getting a tattoo or piercing, sharing a razor or toothbrush, and snorting drugs (blood can get on the straw) are possibilities.
Anyway, I was not in the Don’t Know group. I knew, all right. When I didn’t get AIDS from sharing needles in the early ’80s, I did pick up this little bug.
No big deal, I wasn’t worried about it. I had no symptoms and a biopsy showed that my liver was fine. I also didn’t worry about infecting other people, as heterosexual transmission is rare and I was no longer partying with syringes or rolled-up dollar bills. This somewhat reassured my second husband, but every once in a while he would knit his brow and go in for a test. Each time it turned out those faux pas with the toothbrush had left him unscathed.
In utero transmission was harder to dismiss, so when I got pregnant in 1999, I visited a gastroenterologist, the specialty that covers the liver. The risk was pretty low, it turned out, and my daughter Jane was born without the virus, as were her older brothers Hayes and Vince.
Once a year I repeated the blood tests; every five years, a biopsy. Each time they saw me, though my condition hadn’t changed, my doctor and his assistant urged me to treat. The treatment for hepatitis C is a form of chemotherapy which lasts from six months to a year, and at that time the chance of cure was about 50/50.
The interferon treatment was infamous for its side effects — depression, fatigue and flu-like symptoms (whatever they might be. Don’t ask me, the Impervious One.) One of my sister’s husbands, both of whom she met at NA meetings, relapsed on drugs and died in the middle of treatment. The husband who followed him, one of the most even-tempered and physically fit people I know, also had to treat. He became cranky, quit going to the gym and sometimes didn’t make it into work. He was cured, though. Others I knew were not.
Should I inject toxic drugs that would make me feel bad and might not work, when I felt just fine? I thought not. Well, the doctor reminded me, the Catch-22 was that if I waited until I didn’t feel fine, I would have less chance of cure.
Maybe I should quit drinking alcohol, the doctor went on. The recommended limit for those with hepatitis C is one drink per year. I found this extremely amusing, being the type who opened a bottle of wine when I started cooking dinner most nights. My drinking was somewhat curtailed by my second marriage to a recovering alcoholic, but by the late 2000s, he had relapsed, our marriage was on the rocks and I was taking my martinis straight up.
Before the Impervious One came the Unstoppable One: my mother, a talented athlete as well as a dedicated drinker and smoker. She had not been slowed down by a couple heart attacks, a quadruple bypass, a colostomy, a reverse colostomy, and non-Hodgkins lymphoma. She was still winning golf tournaments and celebrating with Beefeaters when she was diagnosed with lung cancer at 79.
She must have been afraid, but she rarely showed it. First she got tough, then furious and frustrated, then, very late in the game, she gave up. Two days before she died in April 2008, a bony shadow of the Jane Winik we loved, she stopped eating and drinking. The next morning, though, she asked for a cigarette.
If she had it to do over, I doubt she would have changed a thing. She was a stubborn devotee of her pleasures, which she refused to call addictions. For a woman born in 1928, she was irredeemably macho.
I am my mother’s daughter in so many ways.
In the wake of her death and the nearly simultaneous one of my 44-year-old friend Laurie (kidney cancer, four kids, peach of a gal) I was feeling more mortal than usual. Yet when a liver checkup showed the first signs of scarring and the doctor pressed me to begin treatment, I once again backed out. Now, instead of feeling too good to treat, I felt too bad. I didn’t think I could handle all the changes in my life — newly single, newly orphaned, about to move to Baltimore with my third-grader — plus the terrible, horrible, no good, very bad treatment. What’s more, with divorce would come changes in insurance coverage.
Faced with all this, the doctor reluctantly agreed: Maybe not now.
A couple of years went by, during which I began to have occasional pains in my upper right abdomen. I remembered from experience with a boyfriend who was a heavy drinker of Bushmill’s Irish Whiskey and often staggered around in the morning clutching his right side that this might be liver pain. I cut down my drinking, but the pangs didn’t stop. This past March, I made an appointment with a new doctor in Baltimore.
Not long after that, it began — The Summer of Pancytopenia and Splenomegaly. Tests showed that I had very low blood counts (that’s pancytopenia) and a spleen that was visibly and uncomfortably about three times the usual size (that’s splenomegaly). This explained why I was so tired sometimes, which I had been thinking was age or perimenopause or low-grade depression or maybe I was just turning lazy. Twice I had to leave my hot yoga class halfway through, which was unheard-of.
My doctor thought the changes in my condition were sudden enough that something else might be wrong besides hepatitis C. Two other liver doctors, a hematologist/oncologist, and a surgeon were enlisted to give their opinions. I had, over the next few months, two ultrasounds, a CT-scan, an endoscopy, a colonoscopy, a bone marrow biopsy, a liver biopsy, a spleen biopsy, an MRI, and scores of blood tests, giving my new health insurance quite a workout.
We baby boomers like to do things in packs, so I was not too surprised when my problems turned out be part of a trend. “We’re starting to see a lot of people like you,” said more than one of the doctors I visited. Many boomers had been walking around with hepatitis C since our salad days thirty years ago, and many were starting to experience the first signs.
The Summer of Pancytopenia and Splenomegaly wasn’t all bad. I enjoyed having smart, personable doctors pay so much attention to me, discuss me in conferences, ponder the mysteries of my condition, discuss whether I should have an operation to remove my now mini-fridge-sized spleen. I was a fascinating puzzle! The oncologist, a motherly Chinese woman, laughed at my jokes. A young, good-looking infectious disease fellow at Hopkins was impressed that I was a writer. The doctors seemed to care about me and even answered my emails. All agreed, when I answered the question “What brings you here today?” that I was an accomplished medical historian. I smiled. I was always good at using vocabulary words in a sentence.
I looked forward to my doctors’ appointments and often dressed up for them, either in blue to bring out my eyes, or in red, which I felt accentuated my health. Perhaps I was developing a strain of Munchausen syndrome, where people feign a disease because they enjoy the attention. Except I wasn’t feigning. And though I liked going to doctors, I was testy about the interest in my condition elsewhere.
I had been famous for being the person who never had the flu. Now I had neighbors and colleagues talking behind my back about my spleen biopsy. I had been through a disorienting identity loss like this before, actually. Because I skipped a couple of grades in school, I spent the first several decades of my life as the youngest person in every situation. So precocious and cute, like Doogie Howser.
My Doogie days were over a while ago, I’m afraid. And now I’m not just The Old One but also The Sick Person. Fortunately, these existential struggles are mitigated by the fact that I am often too tired to worry about it — sometimes so abruptly that I feel knocked to the couch, the lights in my head going out with a dizzy whoosh. I once would have considered taking a nap almost humiliating.
When I started to experience actual ill health, I remembered my first husband and my mother and my friend Laurie and other people whose last months on earth I had superintended while bouncing around like Jesus at the leper colony. Oh, this was fatigue. This was fever and chills. These were the infamous flu-like symptoms. At least, I thought, it was a course in empathy.
Most of the ways I thought about being sick — Munchhausen syndrome, course in empathy, etc. — were ways of being detached from it, my own version of my mother’s machismo. Sometimes though, I did feel the fear. Usually I avoided speaking of it, but one day as I was leaving the examining room of the good-looking young infectious disease fellow, I stopped on the threshold.
“My father died when he was 56,” I said suddenly. “Three years older than I am now.” My eyes filled with tears as I thought about how much younger my children are than I was then, my children that my father never saw, Hayes and Vince who would be without a mother or a father, Jane so very young. There was no way to put all this into words.
The doctor returned my gaze with clear sympathy and understanding. After a moment, he said simply, “I very much want you to have a positive outcome, and I believe you will.”
This meant a great deal.
By this fall, my anemia went away for reasons unknown and I started to feel better. Meanwhile, the myriad tests had ruled out lymphoma, liver cancer, tuberculosis and maybe things I never knew were on the list. I just have hepatitis C, and it has caused cirrhosis. The good news: There are new drugs with fewer side effects and greater success, and they are in trials right here in Baltimore.
The bad news: It took me too long to smell the coffee, and my blood counts seem to be too low to get into a trial. People with low blood counts can mess up the results. So to get the new drugs I might have to wait for FDA approval, probably two years. The company that makes one of these drugs was bought on November 21, 2011, for 11 billion dollars, so things will likely be moving right along.
But the doctors don’t want me to wait. One way or another, I will be treated soon and this time I welcome the opportunity. Because after this, there’s nothing left but the liver transplant list. (I wonder if you can get a fresh young Baptist liver and start from scratch.)
If the Catch-22 has caught me, at least I am not the only one. Many other former badass demigods are somewhere out there canceling their gym memberships and pursuing new hobbies, like napping, drinking decaffeinated tea, and watching all seven seasons of “The Gilmore Girls” in a couple of months.
Oh, guys. We are so busted.
Marion Winik writes “Bohemian Rhapsody,” a column about life, love, and the pursuit of self-awareness. Check out her heartbreakingly honest and funny essays twice a month on Baltimore Fishbowl