Why Did I Get a Fatal Lymphoma? Cancer Reunites Two Siblings
Published in Patient Power, August 24, 2021
At age 55, I had it all—or thought I did. I was happily married and at the top of my career as a medical writer. But one morning I awoke with blinding back pain. Google diagnosed a kidney infection. I booked a doctor’s appointment, resentful of the disruption. I had an annual research report to complete that day for a major medical center client.
Thirty minutes after I’d entered my doctor’s office, she showed me an X-ray. My torso was covered with bright spots resembling glistening hailstones scattered on a sidewalk after a storm.
I had mantle cell lymphoma (MCL), which is considered incurable. MCL patients have an average life expectancy of three years. At diagnosis, I was stage IV and my bone marrow was a cancerous mush. I had so little oxygen in my bloodstream that a heart attack was imminent.
After months of intensive inpatient chemo, I was emaciated, bald, but—against all odds—in remission. The bad news? MCL has a nasty habit of coming right back. To prevent a quick recurrence, I needed a stem cell transplant. With each sibling, there is a 25% chance of a match.
I had two brothers, but neither of them was a match, and there was no one in the international database of donors who matched me either. I couldn’t believe that one or both of my brothers couldn’t donate. But I had a third brother I hadn’t mentioned to my oncologist. Johnny was the youngest. I hadn’t seen him in 30 years, hadn’t spoken to him in 20. I had no idea where he was, if he was. When I told my oncologist about him, she took in a sharp breath and said, “Find him. You must.”
Easier said than done.
An abusive mother and an alcoholic father created a traumatizing childhood, especially for Johnny, who was unwanted. Right after high school graduation, he moved out of our mother’s Los Angeles home and headed for nearby Huntington Beach, California. We communicated infrequently. Phone calls were strained. At seven years apart, we had almost nothing in common. Whereas I had a university degree, a career, a husband, real estate, and a daughter, Johnny supported himself doing odd jobs at a local apartment building and grew and sold psilocybin mushrooms. He also dealt hashish and peyote.
Out of love and sincere concern, I encouraged him to find a job that did not carry the risk of prison. He gently told me that my suggestion made him feel judged. After that phone call, he disappeared.
Twenty years later, when my husband, Dan, and I were desperate to find him, I scoured every social media site. I called all his old phone numbers. My brothers searched his surfing spots and asked around, but he was gone.
Then one day, my friend, Anne, called. She was breathless, and said, “I’ve heard about something that might help find your brother.”
I gripped the phone, listening to her words rush over each other. “A woman I know is freaking out about this search engine that finds people and publishes their names, addresses, and phone numbers online.” She told me she was going to search for Johnny.
We hung up. I felt no spark of hope, just confusion, even fear at the possibility of seeing my little brother again and learning what had become of him.
The next afternoon Anne was at my door holding neatly typed papers. The sight of my brother’s name over and over felt like a weight sinking from my heart to my stomach. If my brother’s phone number was in those pages, I’d just a crossed threshold, a point of no return toward a reunion that I feared would be painful for both of us.
I walked into my office and put the pages face down in a wicker basket under a stack of folders. I didn’t mention them to Dan when he came home.
Two days later I pulled out the list and stepped into the backyard and a steely blue day. A chilly February breeze fluttered the leaves of our fan palm tree and the papers in my hand. Of course, I’d been thinking about the list; I just couldn’t face it. So many names and phone numbers. I wanted something big from someone I didn’t know anymore, someone who might be dead, or addicted, or in prison.
There were over forty names on the list with addresses and phone numbers. All of the contacts were in Southern California, which both frightened and encouraged me, as that’s where Johnny lived the last time we spoke. The third page contained only one entry with no address, but from the phone number I figured it couldn’t be him. The area code was for Sonoma County, just north of where I live now in Marin.
I wondered: Did I deserve his help? Could I have done more for him when he was a little boy being abused by our parents? I was back to the same old question without an answer.
But I owed my husband and daughter, Anne, and my oncologist to call the names. I straightened my shoulders and decided what to say. “Hi, my name is Susan. Do you have a sister with that name?”
With trembling fingers, I dialed the first number, and the second, and then all forty from the first two pages. People answered. Some were kind, some brusque. No one had a sister named Susan. I left messages on machines. If they were returned, no one had a sister named Susan. I put the list back in the basket and at dinner told Dan. Another dead end.
The next day, I had a pre-transplant appointment at Stanford Hospital, but before Dan and I left, I called the last number on the list. It rang and rang. No answer. No machine.
Twenty-one tubes of blood—my personal best—were taken from me at the clinic that morning, but I wondered, Why do I keep coming back? I have no donor.
When we got home, I was exhausted and climbed into bed. But my compulsion for thoroughness got the better of me. The sun was down. I turned on my bedside lamp and picked up Anne’s list, certain that my effort would be useless.
I dialed the last number again. Again, it rang and rang. No answer. I hung up, then waited and thought, Just one more time. I redialed and my cellphone buzzed in my hand.
With his gentle hello, I knew immediately it was Johnny.
But there is more to this story. And maybe that’s where the gifts of illness enter.
For decades, Johnny had an unlisted number. Then he began receiving threatening phone calls. He asked the phone company for a new unlisted number, but someone made a mistake and listed it. It was during this one week when his number was erroneously published that Anne did her search. Without the rant of a friend of a friend, without threatening phone calls, without a mistake by the phone company, I would never have found him.
And, the final amazement, he agreed to be tested and was a match.
His stem cells and the new immune system they created have kept me alive and well for 15 years. My oncologist still calls me her miracle patient.
How did all these pieces come together in a perfect choreography to save my life?
I don’t know, but I have a suspicion that finding Johnny—perhaps even getting cancer—is about forgiveness. Forgiving our parents for their abuse and abandonment and forgiving myself for not having done more for my little brother, even though I was just a kid too trying to save my own life. Johnny and I are now reunited and I can help him, financially and as a loving sister. That’s one beautiful, unimagined gift of a lymphoma I was not expected to survive.
Time might reveal more about why I got cancer and why my life was saved by an estranged brother. But today I am deeply grateful for a glorious second chance and that is enough for me.
Don’t give up hope. The inexplicable, the unanticipated, may be a part of your patient journey too.