In January 1985 I was hospitalized for 19 days in London with an unknown illness and an unexplainable low white cell count. In April 1985 doctors at the National Cancer Institute (NCI) finally diagnosed my condition—hairy cell leukemia (HCL), a rare disease made even more rare because I had an anomalous form and only 25 % of the 400 people currently diagnosed were women. When I saw my hematologist, he told me there was an HCL protocol—a trial program of experimental medicine—but I wasn’t sick enough to participate and wouldn’t recommend me.
An uncle who worked with drug manufacturers told me that in 1984 there’d been a conference on HCL and would send me the proceedings. When I read it I saw he had underlined in red ink: The disease is fatal. Those diagnosed generally have up to two years of life.
In May, I told a university colleague about the diagnosis, the protocol, and my doctor saying I wasn’t sick enough. She was visibly disgusted and said she knew a man at the National Institutes of Health (NIH) and would contact him. He knew a man at NCI who contacted the director of the HCL protocol to ask if I could call him to ask about participating. When I spoke with the director and told him about the diagnosis, he invited me to come to Frederick, MD, the NCI affiliate, to be tested to see if I was a candidate for participation.
At the hospital, I passed or failed (depending on your definition) every test, meaning all of my blood counts were life-threatening, despite the blood transfusions three months earlier. I was definitely sick enough to be invited to participate. In fact, I was almost out of time. The recommended medication was administered by a daily injection of interferon for nine months, after which they thought we’d be in remission.
I have always hated vaccinations and blood tests. Now I had a disease that involved needles continually taking out or giving me blood. Still, I wasn’t quite ready to die. Although I was visibly depressed the morning I had the first injection, the sight of my doctor, a handsome Black man wearing a goofy straw hat made me laugh. After checking my vital signs, he asked how I felt. I told him I was upset and anxious about the side effects of the interferon. “Would it be okay if I went for a walk?”
“Given that you’ve just had your first dose you need to be careful. Too much sun might make you dizzy. Do you have a hat?” I said no. He grinned. “Well then, I guess I’ll just have to give you mine.” I opened my mouth to protest. He laughed, put his hat on my head, and said, “You look great. Enjoy your walk but take it easy.”
The next day I had a new doctor. My handsome hat man had left to start a new job.
When the nurse told me I needed to give myself the daily injection I was ready to call it quits and live whatever life I had left to live. I was absolutely certain when I told her, “I can’t do tit”
The nurse, equally emphatic, said, “Yes, you can, and you will. What’s your option? Spend time and money to go to a doctor’s office every day and pay a nurse to give you a two-second injection you can give yourself at home? Don’t be silly.”
I felt anything but silly. “I can’t stand watching my blood being drawn, how am I supposed to give myself an injection. Impossible!”
The nurse, unimpressed by my certainty brought me a syringe and an orange. “You’re brave enough to challenge the doctors, questioning them about every aspect of your disease; how can you be afraid to give yourself a shot?”
“I’m a coward,” I said, filled with shame, absolutely sure there was no way I could give myself a daily injection.
“Practice on this.” She put an orange in my left hand and a syringe filled with water in my right. “Push the needle into the orange.” With her hovering over me, waiting, I plunged the needle into the orange so hard I broke it.
“Whoa! Take it easy,” she exclaimed. She gave me a new syringe and watched. This time I barely got the needle in. “It’s a matter of training. You’ll do fine, just practice,” she said as she left.
I jabbed the orange in frustration and anger, over and over until the juice spilled onto my hands and clothing. Why did the medication have to be injected? Why couldn’t it be a pill?
The next morning the nurse came with the syringe and bottle of interferon. I had no choice. She gave me instructions as to how to draw the interferon into the syringe. “Okay pinch a bit of your thigh and stick the needle in, then gently push the head of the syringe while you breathe. Don’t think, do it.”
I did. With such force a black and blue mark began to form. The nurse shook her head. “You’ll learn. I’ll get ice to put on the bruise.”
By the time I left the hospital a week later, I was doing pretty well, but it was always difficult. I had no idea I’d be giving myself injections for the next eight years, when a new chemotherapy drug became available. It never got easier.
What did you learn to do that you thought you couldn’t do?
Life tales from a woman different living in The City Different.