Highs in the Low Fifties

by Marion Winik

  Not long after that, it began—the Summer of Pancytopenia and Splenomegaly. Tests showed that I had very low red and white 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 had become such a pussy lately, with the naps and all.

  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 to 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 now 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-size 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 e-mails. When I answered the question “What brings you here today?,” all agreed 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. It was sort of like getting ready for a date. 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 people 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 long time ago. I was not the Young One anymore; I was the Old One. At this point I was the Old, Sick One.

  When I started to experience actual ill health, I remembered Tony and my mother 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—Munchausen 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 fifty-six,” I said suddenly. “Three years older than I am now.” My eyes filled with tears as I thought about how much younger my children were 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 in his eyes. After a moment, he said simply, “I very much want you to have a positive outcome, and I believe you will.”

  That fall, my red blood count improved 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 had hepatitis C, and it had caused cirrhosis. The good news was that there are new drugs with fewer side effects and greater success, and they were in trials right here in Baltimore.

  The bad news: It took me too long to smell the coffee, and my blood counts were too low to get into a trial. I would have to take the bad old drugs, and I would have to start soon. Probably I was not alone. Probably many other former badass demigods were 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. Spending our days swallowing pills, driving to blood tests, getting product recommendations in previously unknown aisles of the drugstore.

  Oh, guys. We are so busted.

  In January, I spent a couple of hours getting trained in the regime I would be following in the year ahead. Syringes, biohazard-disposal cans, pill sorters, and electronic alarms were involved. The first three months I would be on Telaprevir, a very strong but extremely effective medication that had to be taken every eight hours with 20 grams of fat. (This upset me as much as anything else, imagining myself ballooning up like a force-fed duck on its way to becoming foie gras.) But if you didn’t eat the fat, I was warned, the medicine couldn’t be absorbed, and you would get something known as “burning butt” or “poop of fire.”

  There was a huge stack of printed materials from the drug manufacturers to inform me about potential side effects. As I shoved them back into the box, a treatise titled “Dealing with Itching” caught my eye. How much could there be to say? Meanwhile, the doctor explained that many of the side effects were cumulative, particularly depression, which set in for roughly half the patients. With whom did I live? she asked. This person might have to be the arbiter of whether I needed antidepressants—whether I was becoming progressively crankier.

  Well, I wasn’t sure. Should a person’s eleven-year-old daughter really be in charge of this decision?

  That afternoon I gave myself my first Interferon shot, took my first handful of pills, ate my first avocado, cream cheese, and smoked salmon bagel. It wasn’t that bad. I was low on energy, headachy, a little feverish, but I’d been subpar for a year already, so it was no big shock. I took it in stride when a good friend presented me with a silver and turquoise Virgin Mary charm. A Miraculous Medal, she explained, representing Mary’s power to heal those who believe.

  As a Jewish atheist, I was not really one of them, but I clasped that thing on a silver chain around my neck in two seconds flat.

  A couple days later, Jane came home with news of an epidemic of head lice in her class—of course, raking her nails through her hair as she spoke.

  I blanched, knowing full well from experience with my older kids what an anti-lice campaign involved—like, ten times as much energy as I had.

  “Oh my God,” I said in a sepulchral tone. A few minutes later, when I asked her to put in her retainer, she said it might be in her lunchbox, and her lunchbox might be . . . in Ms. Lewis’s classroom?

  “Are you kidding me?” I screamed. I was already two $150 retainers into the orthodontic journey.

  “Look!” she said accusingly, surveying my crumbling face. “It’s happening already! You better call and get those pills.”

  Blood work taken two weeks after I started the drugs showed my viral load down from over three million to forty-three. Forty-frickin’-three. This was not an unusual result, but it was a very good one. I was almost cured.

  So, I thought, this is what I was so afraid of all those years? This little nothing treatment? Miracle Mary loves Jewish atheists! Let the joyous phone calls begin!

  The next afternoon, my right forearm began to feel sore. By the time I put Jane to bed, it had gotten quite serious. I didn’t have a moment free from agony until I gave in at 5:00 a.m. and called Ken to take me to the
emergency room.

  By then, the arm was swollen, and reddish areas were spreading. I was diagnosed with cellulitis, a tissue infection. They gave me a little morphine, a little Dilaudid, then sent me home with an antibiotic. Perhaps the reckless scratching caused by Telaprevir, plus my dirty fingernails, plus my depressed immune system from the Interferon, had added up to mad, crazy bacteria having an orgy in my arm. No one else came up with any better ideas.

  I guess I should have read “Dealing with Itching” more carefully.

  The next five days were bad. My arm ended up double its normal size, bright red, and burning hot. Layers of dermis had peeled off so that it looked skinned in some places, and spotted with boils in others. My son Hayes gagged the first time he saw it. Meanwhile, the antibiotic was ravaging my digestive system. Soon I couldn’t swallow and had something that felt like hydrochloric acid pouring out of my ass at ten-minute intervals. I had to take four of those pills every day and I shook with terror each time.

  Many dear people in my neighborhood were taking care of me—bringing me food and beverages, doing my errands, wrapping me in gauze, driving Jane around—but, as my arm continued to putrefy, all were increasingly insistent that I should go back to the hospital. But it’s the first week of classes! I told them. I can’t miss school! I can’t leave Jane! What about the dog? And finally: You are not the boss of me, Pam Stein!

  But, in fact, I was not doing anything for Jane but scaring her, and I was so weak I had to teach my undergraduate class flat on my back from my sickbed, via Skype. Immediately following, poor abused Pam took me to the doctor and then on to Johns Hopkins Hospital. The antibiotic was not the right one after all, and the infection was out of control.

  Crispin, who had been very sweet and concerned about me since my health troubles started, took time off from work to come down and stay with Jane and Beau. By now our transition to friends without benefits was well established, and we rarely had a cross word. However, living in my house while I was hospitalized reminded him of annoying things about me he had escaped from when our domestic union dissolved, so we did share some nostalgic moments of snarkery.

  For example, back in the day he had chafed under my hated regime of reusing plastic grocery bags to line my garbage can instead of purchasing real (and much roomier) kitchen trash bags. I had no Glad, and this made him sad. Having escaped from this nightmare three years earlier, and stocking his cabinets with every size, thickness, and closing style of plastic bag possible, he had forgotten about my stupid system. But now, shortly after I’d been admitted to Johns Hopkins, he found himself ransacking my house to find my trash bags. He called me in my hospital bed at about 7:30 am.

  “Where are your trash bags?” he demanded.

  “My trash bags?” I said. “Are you kidding? Isn’t this why we got divorced?” We started sputtering at each other immediately.

  “Your garbage is overflowing!” he accused me.

  “That’s not the bag’s fault!” I retorted. “That’s because you didn’t take it out!”

  Only the sudden beeping of my IV line put a stop to it.

  Trash bags, thermostats, and other technical difficulties aside, he was a lifesaver.

  After fighting so hard not to go there, I loved the hospital. The first object of my affection was my nurse Geri, a big, kind African-American woman who tried to speed the process for me as I waited for the phlebotomist to show up and draw the blood required before I could start medication. Soon enough, I was falling apart.

  “Can’t you just do it yourself?” I pleaded with the resident on the floor after about six hours. “You’re a doctor, right?” As she demurred—this was a complicated blood draw—Geri broke in and said, “I can do it.”

  That is just the beginning of what she did. She fixed everything, took care of everything, constantly soothed me with endearments and reassurances. After what I’d been through at home, I felt like I was at a spa.

  At night, Geri was replaced by the awesome Lucky—a spiky blonde with horn-rimmed glasses who had three months’ nursing experience to Geri’s decades’. Eventually I found out she had been a policy analyst in Washington until the corruption drove her out of there, screaming. She started nursing school at age forty.

  Lucky and Geri and I were bonded not only by their care for me, but by our shared project: my extraordinary roommate, Miss Simpson.

  Miss Simpson, a bone-thin African-American woman who sometimes looked like a twelve-year-old boy, and sometimes like a ninety-year-old crone, was very, very unhappy about being in the hospital, though she was rushed in with a fever of 105 degrees the same day as me. When anyone came to take her vitals or bring her meds, she screamed with fury. GET AWAY FROM ME. I DON’T WANT THAT! Our room was in an uproar around the clock, partly because she wouldn’t (or couldn’t) use her call button when her empty IV beeped, or when she needed to go to the bathroom.

  This was the beginning of our friendship.

  “Do you want me to call the nurse for you, Miss Simpson?” Amazingly, over the course of three days, we got to the point where I could crack jokes about her stubbornness.

  “I like Marion,” Miss Simpson announced one day, though she had never opened the curtain between our beds. “Where’s Marion? What’s Marion having for lunch? Why didn’t I get that? I want what Marion has!” Lucky said it was like a darn sorority in there.

  What impressed me most was the commitment to taking care of her. Miss Simpson refused a spinal tap. DON’T GIVE ME NONE OF YOUR EXPERIMENTAL TREATMENTS, JOHN HOPKINS! She put her foot down on a blood transfusion. YOU AIN’T GONNA GIVE ME AIDS, JOHN HOPKINS! (Actually, she already had AIDS, but maybe she thought I didn’t know that.) No matter how she acted, and she did a fair job of simulating demonic possession, the staff just regrouped and strategized. They brought in her long-suffering sons, her social worker, her doctor. They waited two hours and came back. They smothered her with darlings and dears. They got her well.

  Though my primary view was of the Miss Simpson scenario, I was also riveted by what I could make out of the hospital at large. I watched the troops come and go—the phlebotomists from many lands, the meal carts, the laundry wagons, the night nurses and the day nurses, the white-coated doctors on rounds, their pontifications booming up and down the hall, the flocks of nursing students in navy scrubs, the wheelchairs and gurneys rolling back and forth to radiology, the nutritionists and the visitors. Can I get an ice water for my dad, please?

  One afternoon I opened my eyes and there were two osteoporotic ladies standing next to my bed with bursting tote bags. Since I’d checked jewish as my religion when I was admitted, these representatives had come to bring me grape juice from Israel, challah rolls, and get-well cards from the children of their temple.

  “Wow,” I said. “This is great. I almost registered as atheist, but maybe now I’ll just stay Jewish.”

  “You should,” they told me firmly.

  On Friday night, Miss Simpson went home and weekend nurses replaced Geri and Lucky. These were sad farewells, and suddenly, the silence was unearthly. I was the last one on the island. But the truth was, my arm still looked like hell and I was happy to soak up a few more days of rest and nursing.

  Checking my e-mail one day, I found an interesting message. It was from a local scientist—a divorced, fifty-year-old father of two, who had been following my biweekly columns in the Baltimore Fishbowl. He had ordered and read a couple of my books as well. He went on charmingly about my writing, then said that he’d read in the most recent edition of the column that my search for a boyfriend in Baltimore had been a bust. He proposed that, if the position was still open, he take me out for a cup of coffee.

  I hopped right over to Google to see what I could see, and there he was, best-selling science author, Wikipedia entry and all. Though it was hard to type with my arm tethered to the IV pole in a vertical sling, I replied in s
hort order: “Why the hell not.” I said I’d let him know when I “got out of hosp.”

  Before I went home on Sunday, the attending physician brought me some big news. My viral load was down to zero. If I remained undetectable for six months after treatment, I would be considered cured.

  The Brainiac came over for tea shortly after I got home from hosp. Prior to our meeting, once I could type with all my fingers, I explained that after a long series of humiliating and idiotic experiences, I had placed a ban on dating and was no longer looking for a boyfriend. Due to the physical and psychological effects of my illness, getting a man was now about as important to me as getting a guinea pig. Yet I was so impressed with the Brainiac’s credentials and his generous e-mail that I could not resist meeting him.

  I was still fairly etiolated at that point, but over the next few months, I began to regain my strength. The Brainiac took me out to nice restaurants, charmed my friends, took afternoons off from the lab to go to the movies or hiking. At one of our dinners out, I ordered the first glass of wine I’d had in quite some time. It was excellent, and soon I had another. It’s not recommended to drink while on the treatment, but I seemed to sneak by. Good blood work, no liver lesions, no problem. Perhaps this is one of the many ways in which I am my mother’s daughter. Jane Winik was a stubborn devotee of her pleasures, which she refused to call addictions. She stopped eating three days before she died, but she smoked a cigarette that morning. She was a couple of months away from turning eighty. I hope to follow her model in that regard as well.

  As soon as the Brainiac appeared on the scene, people were asking about him. They were excited that I seemed to have a boyfriend. Somehow, though, I did not feel like I had a boyfriend. I wasn’t sure if it was a treatment side effect, or a chemistry problem, or him, or me, or just a slow burn.