After Relapse, Putting My Boxing Gloves On
When my doctor at the Dana-Farber Cancer Institute explained my treatment plan to me in 2003, he said that remission is not cure.
He said that after two years, you can break out the champagne. But only after five years can you use the word cure.
Two years arrived. But I only had coffee with friends, not wanting to jinx myself by celebrating too loudly. If through magical thinking I believed that by being humble I would make it to five years, it didn’t work.
Relapse hits after over 3 years
I relapsed after three-and-a-half years. My doctor said they would get me back on my feet. But I was on my feet! A partner and I had just won a doubles match at a regional tennis competition. I told him I felt fine. He said that without treatment, I wouldn’t be fine for long.
My transplant had been an autologous one, using my own new, clean stem cells, an “auto” for short.
Apparently, a leukemia cell, a bad actor, had snuck in.
This time I would get an allogeneic transplant – using donor cells – an “allo” for short. But first I would need to get chemotherapy again.
Preparing for transplant
I got the transplant, but six months later I got something called graft failure. This meant the donor had packed up his bags and left. I remember being admitted into the hospital into a dark room whose window opened onto an exterior wall. I felt as gloomy as the space. My doctor sat down and said that I although I hadn’t relapsed, my bone marrow was basically empty.
In an e-newsletter about my case, my caregivers wrote, “Chimerism had been 98% donor at the end of March 2008, but declined to 40% by the end of April 2008, consistent with late graft failure."1
So I got more chemotherapy and a third transplant, using the same donor, in June 2008.
Six months later, I relapsed again.
I wondered why they had used the same donor. They answered that they believed the graft failure was a fluke. I was naturally very upset, but there was nothing much to do about it except to go along with the plan. It called for a stronger chemotherapy followed by a stem cell transplant from a second donor.
When I was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, I sought out a nurse whose tough love had helped me the last time.
“You can have your pity party for a day, and then you’ll put your boxing gloves on,” she said.
So that’s what I did. I got more chemotherapy and got the transplant. I went into remission, but my system rebelled. I had multiple life-threatening infections and went into a coma induced by kidney failure.
When I woke up, I couldn’t speak or walk. My legs were so swollen they looked like tree trunks. It took two nurses to turn me over in bed. I was in the hospital for nearly four months.
Four transplants later
I have since learned that although three transplants are unusual, four transplants are rare.
This is a crazy story that I hesitate to tell, out of fear that it will freak new patients out. As a volunteer for Dana-Farber’s One-to-One program, in which survivors give support to newbies, I always say that the things that happened to me are not the norm.
They don’t seem to mind hearing about it.
Because here I am, nine years out from that fourth transplant, playing tennis like none of it ever happened, playing with the grandchildren I thought I’d never see, and enjoying other activities such as walking my dog, reading, writing, traveling, and telling my story.
What type of blood cancer are you or your loved one diagnosed with?