Leukemia Research Foundation News

FACING IT by Robert Trebor

Can we ever realize how precious life is, while we’re living it?

The message light is blinking on my phone. “Mr. Trebor, this is Dr. Rodriguez from Kaiser. Your bone marrow biopsy results are in. Unfortunately you have Acute Myeloid Leukemia. It is aggressive and we need to start treatment immediately. Please acknowledge you’ve received this message.”

Uh…yes, yes. I received the WHAT?? WHAT??? I never… smoked …or did anything that would cause…maybe too much fast food, but really? Leukemia? My only reference is my sister’s friend Joanne, whose brother Ross died of leukemia at age 10. I saw him a month before, and he was fine.

And so my medical journey begins. Acute Myeloid leukemia is a blood cancer that multiplies thuggish, juvenile white cells, that take over everything else. Think of West Side Story (hum Prologue). Chemo will kill these delinquents, making me eligible for a stem-cell transplant, the only path to long-term survival. But it will tank my immune system. So I get antibiotics, anti-virals, anti-fungals and blood transfusions three times a day via catheter. I’m also hooked up to saline and other fluids, because everyone should be a pin cushion at least once in their life.

The cancer ward is filled with patients who are really sick and enervated. So natural ham that I am, I entertain the doctors and nurses with my leukemia song: ”Leukemia, leukemia, leukemia, you takea my blood cell and run Venezuela. Everybody!”

During this time of merriment and transfusions, a stem cell donor is found. Great! The donation will exchange my leukemic bone marrow for new cells, to help produce healthy blood. This is right around the High Holidays, and I ask if we can delay the transplant until after Yom Kippur. I would like a “refuah shlimach,” a complete healing prayer to fortify me. Can I take my meds orally and go to the synagogue? The doctors say I’m doing well, and yes, and I can attend. Being inscribed in the book of life this year takes on special meaning.

The day after services, they start the transplant protocol. I get my usual blood tests, wait an hour, and my doctor comes in.

“Mr. Trebor…you have relapsed. We cannot do the transplant until you’re back in remission. I’m sorry, we should have done this two weeks ago. We’ll try to find another chemo for you.” They try twice. Both fail.

I ask to see a rabbi and he comes to my room, a gentle soul.

“Why is God doing this to me? I just wanted a refuah to give me strength.”

He paused. “We don’t know. There are some questions for which there is no answer. Let me say the Shimah with you.”

“Shimah Yisroel adonai elhoheinu, adonai echod.”

It turns out I have a FLT3 mutation which is a marker for fast leukemia relapse. Because why have a sundae without a cherry on top? I’m not singing anymore. Without remission and transplant, I’ll be dead in four months. What the hell? I’m 59. I HAVE MORE TO DO! My doctor prescribes Prozac.

Can’t sleep. Angry. Thrashing in bed. One night I even dislodge the tubes. The hospital can do nothing more, so they send me home. Swell. A wider bed and better food.

I’m in my bed looking up, “Baruch Ata Adonai Eloheinu…”

What’s the prayer for survival?

“Second opinion” comes into my mind.

I remember an actor who survived leukemia, and he suggests I contact Elihu Estey in Seattle, one of the top leukemia specialists in the country. I’m stable enough to travel, and Estey does a full workup, including another painful bone-marrow biopsy.

“You have a bad case of leukemia. It’s in 70% of your white cells. I recommend G-CLAMS, five strong chemoes topped with 20,000mgs of statin, all at once. It could kill you, but probably won’t. If you die, it’ll be the leukemia.”

Kaiser agrees to administer this protocol. And it’s rough. Nausea. Night sweats Bodyaches. No appetite. No energy. Few jokes. But I go into remission, and it sticks. It will take two months to find a new donor. During this time, I run a low-grade fever, but if it rises above 100, the transplant won’t happen. Game over. I pray with the rabbi a few more times.

There will be years of difficult side effects after the transplant, which I’m still fighting everyday. But God didn’t reject me. I’m alive.


FDA Approves Iclusig Plus Chemo for Ph+ ALL

Blina may be effective in first-line treatment of Pediatric B-ALL

Pre-transplant gut microbiome may influence likelihood of GVHD