Deep delve into dark place from a Marathon day

Cancer memories are tied to events, and Marathon Monday is one of them for me. Here's something I wrote on my Newsmaxhealth.com "Surviving Cancer" blog four days after the bombing three years ago tomorrow. I recalled a great day when I jumped in to help a friend finish the race and a dark day when I was having graft failure after my first allogenic transplant and my second bone marrow transplant all together. (My first was autologous, which did not involve donor cells.)

In grieving over the Boston Marathon bombing tragedy, I have been thinking about my own connection to the race.

I "ran" the marathon once, thrilled to be there on a bright, festive Patriot’s Day. The word "ran" is in quotes because I ran only four miles, although I did cross the finish line. No, I was not doing a Rosie Ruiz thing, sneaking in partway and pretending to have run the whole race. A friend who was actually running the marathon asked me to do what many runners asked their runner friends to do: jump in near the end and run with them for support.

Sharing her excitement, I dropped her off in Hopkinton, where the race starts, and then drove into Boston. She told me where to find her and at what time, and sure enough, along she came just when she said she would.

I jumped in, feeling a little conspicuous but game. I wanted to cheer her on, so I said things like, "You're doing great," "You're almost there," etc. I think I was annoying her. "I can't really talk now," she said. I realized she just wanted me to run, so I stopped talking. We crossed the finish line and someone put a Mylar sheath on top of me.

I tried to protest that I wasn't a runner, but the volunteer was on to the next person before I could get the words out. I was thrilled for my friend’s triumph and got caught up in the joy of the event.

A few years later on another Patriot’s Day, I went to Boston from my home in Western Massachusetts in a vastly different state of mind.

I wasn’t running anywhere this time. It was after my first leukemia relapse and second bone marrow transplant. I had a high fever and was feeling awful. A friend drove me to the clinic at the Dana-Farber Cancer Institute. My nurse practitioner told me that I needed to be admitted to the hospital.

I had nothing with me, so my valiant chauffeur went to my sister’s house in nearby Newton and picked up a few things to wear – comfortable yoga pants and T-shirts.

They put me in a hospital room where the window faced a brick wall. The darkness fit my mood. My doctor came in and said I hadn't relapsed again, but my bone marrow was almost empty. It was my introduction to "graft failure." The donor cells had moved out. They would have to address the cause of my fever first. Then I would have more chemotherapy and another bone marrow transplant.

All of this really happened

When talking to Dana-Farber's assistant VP for Gift Planning Alice Zaff at the recent Chefs for Jimmy, I told her I would send her the link to what Dr. Alyea and Melissa wrote about me in the fall 2014 e-newsletter, Advances in Hematologic Malignancies.

I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).

There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.

I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.

Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."

They didn't even get around to talking about the kidney failure and the coma.

It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).

Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long."  That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.

God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.