An Against-the-Odds Story Can Be Yours
Susan Keller, Dr. Michael Craig, Johnny Shultz, and Andrea.
I had it all, or thought I did. At fifty-five—happy in my marriage and at the top of my career—I awoke one morning in damp, tangled sheets. Turning to dislodge my leg, a searing pain shot up my back. I moaned, gasped, then slowly sat. My husband had already left for work in San Francisco. Wincing as I stood, I made my way downstairs—holding tight onto the bannister—and walked to my home office. At my computer, I typed in back pain and my other oddball symptoms: shortness of breath, weight loss, and night sweats. In a nanosecond, Google diagnosed a kidney infection. A quick appointment, a bottle of antibiotics, and I’d be fine. In my internet search, I failed to include the lump on my neck.
Mid-morning, when I mentioned the persistent little knot to my internist, she ordered emergency blood tests and x-rays. Twenty minutes later, my chest x-ray—blazing with cancerous nodes—filled her computer screen.
“Likely lymphoma,” she mumbled. “I’m sorry.”
There was a heart, lungs, and stomach, but also filling the screen were bright spots that resembled glistening hailstones scattered on a sidewalk after a storm.
Lymphoma? No. Cancer happened to other people.
Without immediate transfusions, a heart attack was imminent; and within two hours I became an inpatient in a faded hospital gown. Vulnerable and weak, I’d been changed from the woman I am—who tries to be kind; who has good taste, or thinks she does; who doesn’t eat meat; who reads a lot; drinks a little too much; and wishes she weren’t so ambivalent about sex; that woman with those attributes and many more—into a medical record number, lab values, a diagnosis, and a course of treatment.
Tests revealed Mantle Cell Lymphoma (MCL), a rare and aggressive form of the disease. Ninety-eight percent of my bone marrow was a cancerous mush.
Inpatient Chemotherapy Was Full of Surprises
During treatment, I had to pee in a pink plastic “hat” to measure the number of dead cancer cells in my urine. I was as soggy as a sea cucumber from the fluids that dripped into me around the clock. I endured a psychotic drug reaction where I learned what “crawling out of one’s skin” means. And a near-fatal blood poisoning made me wonder about the shape, size, and sound of death. After an onslaught of chemo, I was emaciated, bald, and—against all odds—in remission.
But MCL has a nasty habit of coming right back; and to prevent a quick recurrence, I needed a stem cell transplant. But neither of my brothers were a match, nor was there anyone in the international database of donors.
Without a transplant my survival was unlikely. The only possible donor was Johnny, my brilliant, off-the-grid brother who had vanished thirty years earlier.
Finding him was nothing short of miraculous. That he was a genetic match and agreed to donate his stem cells was profoundly amazing.
I was admitted to Stanford Advanced Cancer Center for a tortuous ten days in the hospital having my immune system chemically eradicated and enduring daily doses of radiation to obliterate any remaining cancer cells that CT-PET scans might have missed.
After the stem cell transplant from Johnny, I was released to begin 100 days of recovery with my husband, Dan, as my trusty caregiver.
My Body Was Hideous
I couldn’t cook, clean, do laundry, drive, exercise, or have sex. Dan had to do all of this; well, except for the sex part (I guess). He didn’t reach for me. I didn’t blame him. Plastic tubes, known as a Hickman catheter, for taking blood and giving meds, sprouted from my chest; and my hairless, emaciated body was hideous. We’d had sex only once in the eight months since I’d gotten sick.
Every drop of water I drank (three liters a day) had to be boiled; and Dan did this graciously, reliably, and without complaint for more than three months. Also, with his usual meticulous attention to detail, he flushed my catheter tubes daily and cleaned them twice a week.
Bio: Blood Brother: A Memoir is Susan’s first book. She has a 30-year career as a medical writer and has won awards in national and regional poetry contests. Magazines including Psychology Today, CURE Magazine, Conquer: The Patient Voice, Patient Power, and Guideposts have all run articles about Susan’s journey with lymphoma. She has also been interviewed on the media, including Cure Talks Podcast.