A Cancer Story Can Be Yours

I had it all, or thought I had it. At 55 – happy in my marriage and at the peak of my career – I woke up one morning to damp, matted sheets. As I turned to dislodge my leg, a searing pain shot out from my back. I moaned, gasped, then slowly sat down. My husband had already gone to work in San Francisco. Wincing as I stood up, I walked down the stairs – holding onto the handrail tightly – and headed for my home office. On my computer, I typed in my back pain and other weird symptoms: shortness of breath, weight loss, and night sweats. In a nanosecond, Google diagnosed a kidney infection. A quick date, a bottle of antibiotics, and you’ll be fine. In my internet search, I failed to include the lump on my neck.

In the middle of the morning, when I mentioned the persistent knot to my internist, she ordered emergency blood tests and x-rays. Twenty minutes later, my chest x-ray – blazing with cancerous lymph nodes – filled her computer screen.

“Probably lymphoma,” she mumbled. “I am sorry.”

There was a heart, lungs, and stomach, but also filling the screen were dots of light that looked like glittering hailstones strewn across a sidewalk after a storm.

Lymphoma? No. Cancer has happened to other people.

Without immediate transfusions, a heart attack was imminent. In less than two hours, I became an inpatient in a faded hospital gown. Vulnerable and weak, I was no longer the woman I am – a woman who tries to be kind, has good taste (or thinks she has), doesn’t eat meat, reads a lot, drinks a little too much and wish they weren’t so ambivalent about sex – in a medical record number, lab values, diagnosis and treatment.

The tests revealed mantle cell lymphoma (MCL), a rare and aggressive disease. Ninety-eight percent of my bone marrow was cancerous mush.

Inpatient chemotherapy was full of surprises

During the 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 dripping inside me 24 hours a day. I endured a psychotic drug reaction where I learned what it means to “crawl out of your skin” . And almost fatal blood poisoning made me wonder about the shape, size and sound of death. After a chemo attack, I was emaciated, bald and – unexpectedly – in remission.

But MCL has a bad habit of coming back right away, and to prevent a quick recurrence, I needed a stem cell transplant. But none of my brothers were compatible, and there was no one in the international donor database.

Without a transplant, my survival was unlikely. The only possible donor was Johnny, my brilliant off-grid brother who had passed away 30 years earlier.

Finding him was simply miraculous. That he was genetically compatible and that he had agreed to donate his stem cells was deeply unbelievable.

I was admitted to Stanford Advanced Cancer Center for 10 torturous days where my immune system was chemically eradicated and I endured daily doses of radiation.

After the stem cell transplant, I was released to begin 100 days of recovery with my husband, Dan, as a faithful caregiver.

My ugly body

I couldn’t cook, clean, do laundry, drive, exercise, or have sex. Dan had to do all of this – well, except the sex part. He did not reach me. I didn’t blame him. Plastic tubes – a Hickman’s catheter – for drawing blood and administering medicine, were gushing out of my chest, and my hairless, emaciated body was hideous. We had only had sex once in the eight months since my diagnosis.

Every drop of water I drank (three liters per day) had to be boiled. Dan did it gracefully, reliably and without complaint for 100 days. Plus, with his meticulous attention to detail, he rinsed my catheter tubes daily and cleaned them twice a week.

So many heroes have entered my life during my year of treatment, and because of them I am now a 16 year old lymphoma survivor who almost certainly would have taken my life in under three.

Cancer is a great teacher and has helped me rebuild my family. Johnny is now back in my life, and while the 30 years that we have been apart and our very divergent life paths have created two deeply different people, I can now help him financially, love him from a distance, and express my sincere gratitude for her great gift of a second chance in life.

I hope my story convinces others – who have experienced cancer themselves or who love someone who has cancer – that miracles do happen. A story that goes against the grain can be everyone’s story.

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