My older brother Dennis called me one spring day in 1994 to tell me his kids were doing well in school, that he and his wife were planning to visit her parents in Florida, and oh, by the way, he had leukemia. He was 49 years old.
Dennis started treatment at Danbury Hospital in Connecticut. His doctors decided that if his leukemia could be coaxed into remission with chemotherapy, he could be considered for a bone marrow transplant at Dana-Farber Cancer Institute in Boston.
Before his diagnosis, Dana-Farber was three long hours away, a place we never thought about. Now it was the only place we wanted to be.
A bone marrow transplant, also called a stem cell transplant, is a procedure that transplants healthy bone marrow (or stem cells) into a patient whose bone marrow is not working properly.
My younger sister Annie and I would be tested as potential bone marrow donors, but we were frightened by what a positive match would mean: surgery. I had only ever been in a hospital for the birth of my two babies, and the thought of a medical procedure such as this scared me.
My sister, who was not at all afraid of doctors, wanted desperately to be the best blood match for Dennis, partly so that I could be spared the anxiety. But we both knew, intuitively, that I would be the one, and indeed I was.
I felt guilty about being frightened, but I talked to a social worker at Dana-Farber who explained that this was okay: the emotions surrounding being chosen as a bone marrow donor were sometimes complicated.
People started congratulating me for my bravery. Others said they were envious of my opportunity to save a life, and that I was a hero. All this attention was overwhelming, especially when Dennis still had to survive the transplant.
To me, the heroes were my brother, for everything he had to endure, and Dr. Robert Soiffer, his doctor at Dana-Farber. My part was a mere drop in a very big bucket of bravery.
One morning in September, I arrived at Brigham and Women's Hospital in Boston to have some of my bone marrow removed for Dennis's transplant. This surgical procedure would involve drilling 18 holes into my hips.
Dr. Soiffer, then a new member of the clinical staff (now Chief of Hematologic Malignancies at Dana-Farber) told me I would have minor muscle soreness and could go home the next day.
He was right. And my matching marrow was in a bag, ready to save my brother. I allowed myself to feel incredibly happy about doing what was needed - a kind of happiness I had never known before.
Once Dennis had my bone marrow cells in his system, he had to remain in isolation for six weeks to prevent infection.
He finally walked out of his hospital room cured, just in time for my younger sister to be diagnosed with breast cancer at the age of 40. Thankfully, her treatment was also successful.
For the next 12 years we lived disease-free. And then it was my turn.
A routine mammogram led to the discovery of a breast tumor. Luckily it was small and detected early. I went through my treatments as bravely as I could, although during my first infusion I panicked until the chemotherapy nurses had me breathe into a paper bag to calm me down.
Eventually I became more accepting and took my medicine calmly. One year later, I was declared free to reboot my life.
Two years after my breast cancer diagnosis, I began to lose weight without trying. After many tests, and more than a decade after Dennis had dropped his leukemia bombshell, I called him with reciprocal bad news: I had been diagnosed with non-Hodgkin lymphoma, a blood cancer like his leukemia.
Again, we turned to Dana-Farber and Dr. Soiffer. There was never a question of going anywhere else for treatment, even though we lived three hours away. It was like coming home.
Dr. Soiffer guided me through treatments to put me into remission so I could have my own transplant. It was a complicated process, filled with terror, magic, disappointment, joy, luck, and humor. I ended up losing my spleen and my hair before finally being told I was ready for transplant.
This was an autologous transplant, meaning I did not require a donor: my own cells would be used. Luckily, I didn't have to have 18 holes in my hips this time. Peripheral blood stem cell donation is much more common than bone marrow extraction these days.
My cells were collected via a non-surgical procedure called apheresis, in which peripheral blood was removed from me (similar to a blood donation), stem cells were extracted from the blood, and the remaining blood components were returned to me.
I was placed in isolation and given high-dose chemotherapy. Any cancer cells lingering in my lymphatic system, and elsewhere, would hopefully be toast. Then came the magic part: They returned to me the stem cells I'd donated the week before.
This was called "day zero," because it was like being reborn. Although autologous transplants use a patient's own cells, they are still filled with risks and require many weeks of isolation to avoid infection.
With little else to do while alone in my room, I began to write a book.
Some deep place inside me knew that the story of the Dana-Farber/Stone Family relationship had to be told. I told it all in three weeks of non-stop keyboard pecking, while dressed only in sterile, ugly, blue hospital gowns.
Down to the Marrow is dedicated to Dr. Soiffer, the hero of our family's legends, as well as to the incredible staff at Dana-Farber, so dedicated to saving both my brother and myself with great humor and humility. It incorporates my experiences at Dana-Farber, my family's unusual history, and everything I'd learned about coping with the unknown over and over again.
Life is full of adventures, both pleasant and not so nice. Sometimes they're frustrating, because they seem not to have meaning attached. But even when their meaning is obscured, each adventure holds a lesson that it's our job to understand.
For me, the key to surviving the fear and worry surrounding my cancer treatment was in remembering those lessons and living what I learned.
Sometimes this meant immersing myself in the terrible fear until I found a solid bottom beneath the murk. Sometimes it meant giggling with good friends while my physicians did their thinking. Sometimes it meant being brave so someone else did not have to be.
When I finally stepped through the survival door, I thought I had received the ultimate gift. But something even more special arrived with my hard-earned extension of life. I think I am a better person now. I feel less needy, less worried about small things, less self-centered than I used to be.
Is it possible that I am not only someone who survived, but that I am also living proof that tough times can sometimes make us happier?
I walked out of the hospital a well person, thanks to Dr. Soiffer and Dana-Farber. Yes, I have miles to go before I will feel completely safe again, but I am well on my way.
Read more stories about the stem cell transplant patient experience
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