I’ve got one of those rare diseases with a long name: cutaneous T-cell non-Hodgkin’s lymphoma, or mycosis fungoides. It could kill me, but with a lifetime of treatment, it should not.
My disease is not my story, though. My story is even scarier—and can happen to anyone. It’s about my nightmarish search for a doctor who could not only figure out what was wrong with me, but also treat me like more than just another cog in a dysfunctional health care system.
Let’s start in the middle. One day, after months of medical missteps on the part of my “knowledgeable” doctor, she sat across from me at her desk and was about to do something she loved—order another test. I’d had many already, even for things I didn’t have, like gynecological problems. She smiled and spoke into the phone. “Let’s make sure there’s not some big old tumor sitting inside her,” she said to the lab technician.
Tumor? My worst fear. I was outraged. After months of waiting for results of tests looking for one kind of cancer, she was now suggesting that maybe something else was growing inside me.
And that smile? What was wrong with her? And what was wrong with me for keeping her as my doctor? It was a catalytic moment. I’d had enough. Enough of the calypso music that she played in her office so inappropriately (Tumors? Let’s dance!). Enough of the phone calls from other patients she took in front of me. Enough of the physicals that never happened.
I saw it all, clearly and for the first time. I had spent a year and a half in a world of misdiagnoses, unnecessary tests and doctors who sometimes were not only a bit dim, but less than enlightened in the sensitivity department.
In the process, I had been transformed from a funny, happy mother of two who led a writing salon (the Writing Mamas at Book Passage) into a scared, anxious 46-year-old who didn’t know whom to trust. I tried to hide my problems from friends and colleagues. I was living parallel lives, and neither was going well.
The whole thing began with a blotchy rash on my thigh. “It’s cellulitis,” said my doctor. She prescribed steroid shots, which I got for more than a year. The rash persisted.
Then she gave me dermatologists’ names. One said it was nothing, but wondered was I interested in laser resurfacing?
I returned to my doctor’s office and saw her physician’s assistant. “I don’t know what it is,” she said.
“I do,” I said. “It’s cellulities.”
“That is not cellulitis,” the assistant said and brought in another doctor. He didn’t know what it was either.
That doctor sent me to an old-school dermatologist who he promised wouldn’t try to sell me Botox (not that I didn’t want it). He took a biopsy. The results would take up to 10 weeks, he said. “Be
patient,” he said. “These things take time.”
There were more biopsies, then at last a report—inconclusive. “Suggestive of, but not definitive for” lymphoma, it said.
The Anxiety of Uncertainty
The thought of cancer and the unfinished diagnosis preoccupied me. I had trouble staying focused in my roles of attentive wife and involved mother. I had writer’s block. I couldn’t get my mind off the disease spreading through my body—whatever it was.
I couldn’t sleep, so I got medication. I wouldn’t eat, thinking, irrationally, that food would make the disease grow bigger. I started exercising an hour and a half a day.
My arms tingled; my hands felt like claws. I told my doctor. “It’s the way you hold yourself,” she said.
Sometimes I couldn’t breathe well. I was fatigued. You’re worrying too much, my doctor said.
Finally, while I was driving on 101 one day, my heart grabbed at my chest. My breathing tightened. I could barely grip the steering wheel. My mind raced to visions of a crash. I could see the wreckage. My four-year-old daughter, Mimi, was in the back seat.
“Off! Off!” I thought. “I have to get off the road.” Thinking of Mimi every moment, I made it to the exit. I punched in the number of a friend, who called 911.
The paramedics determined I was suffering from panic—a full-blown anxiety attack at 60 miles an hour. My wonderful friends came. One took Mimi; the other took me.
Once she got me home, my friend called my doctor. The doctor was busy and could only see me after 5 o’clock. So, I waited, only to have her tell me, once again, that I was stressing out. A lymphoma diagnosis takes a long time to confirm, she said. I would have to learn to wait.
I could not. I told her I had been looking on the Internet—something doctors hate to hear—and found a nearby hospital that specialized in lymphomas. Against her advice, I went.
Just like that, it was confirmed. I had an early stage of cutaneous T-cell lymphoma. It begins in the lymph system and appears first on the skin as a rash. Later, it can affect the lymph nodes, blood and organs. It grows slowly, is inoperable and can’t be cured. Only about 1,000 Americans are diagnosed with it each year. Most such people are first incorrectly diagnosed for years.
I began an 18-month chemotherapy trial at the hospital, and I realized I couldn’t fight this disease with my current doctor. I needed an involved medical partner, not a disinterested clinician. I asked around.
Two people I trust were effusive about one particular physician. I was determined she would be mine. I told her office receptionist that my doctor said I must see her. “Well,” said the receptionist, “if your doctor said that, then you have to see her.”
Suddenly, simply, I had a new doctor.
She is bright, she listens, she empathizes. She’s recommended specialists, all of whom have been exceptional. She suggested a psychiatrist to deal with the emotional aspects of cancer.
For the first time in years, I feel somewhat in control of my future—no matter how uncertain it might be.
I’m writing again, my humorous persona is back and I’m fulfilling a teenage fantasy—with a guitar.
“Acoustic, maybe?” my husband suggested.
“No, hon, it’s been a hard year,” I said. “Electric. I need to rock out.”
Today, I take my Stratocaster to lessons, sandwiched between a 13-year-old boy before me and a 16-year-old girl after me. I’m older than their mothers. I don’t care. I can play REM’s “Man on the Moon”!
Lately I’ve also been considering something else: laser resurfacing and Botox. After all, this is Marin.
How to Find a Good Doctor
1. Ask your wealthiest friend whom she sees. If the practice is closed, ask your friend to call on your behalf.
2. If the practice is still closed, inquire if there’s a waiting list, get your name on it and ask anyone you know in the medical field to make a courtesy call for you.
3. Ask doctors whom they see.
4. When you get a referral, ask why the doctor is good. Ask for specifics.
5. Use your instincts. Don’t worry about hurt feelings. Worry about who can make you well.