When other people get leukemia

I read with interest the story in today's New York Times about how Dr. Susan Love's own illness has given new focus to her cause of fighting for the needs of people with cancer.

Love, 65, the surgeon, advocate and author of "Dr. Susan Love's Breast Book"was shocked to discover at a recent routine checkup that she had acute myelogenous leukemia. She had given a talk last spring chiding the research establishment for ignoring the needs of people with cancer, only to discover not too long after the talk that was a patient herself. She said she might have been less shocked if she had breast cancer because it is so common, "but getting leukemia was a world I didn't know."

Luckily, her younger sister was a match for a bone marrow transplant. She received the transplant after chemotherapy, and is now in remission. But she was in the hospital for seven weeks due to complications after the transplant.

Welcome to my world.

Whenever I hear about someone with leukemia, the word lights up for me like a blinking red light. I have to stop and read about it some more. People with other cancers have told me the same thing happens with their cancer. When someone with leukemia is doing well, I feel good about it. When I read about a death, I feel bad not only for the person who died, but I also feel a sense of dread for myself. I know people die of it, but when I see it, I am reminded of the seriousness, and I think, I could die. Now that I am so far out and doing so well (aside from all my stupid complications), it is less chilling, but it still affects me.

Here's another example. I was browsing through the last print edition of Newsweek (Dec. 31, 2012, so sad) and was reading editor Tina Brown's column about the last issue. She mentioned the loss of executive chairman Sidney Harmon, who died of complications of ... leukemia. I looked up his obituary, which said he had an active life and a short illness before his death at 92.

So...that I can take. But not the death of a young person. I am reminded of Iditarod champion Susan Butcher, who died in 2006 at 51 when she relapsed after a stem cell transplant for leukemia. I was in the hospital for some complication or other. My social worker, Mary Lou Hackett, said she had to tell everyone on the floor to turn off the TV.

Illness can make you super-sensitive

I decided that it was bad for my health to be on the computer late at night. It creates a buzz that makes it hard to sleep. It's difficult to put the computer away, because my new MacBook has a habit of following me around.

The other night, having succeeded in closing the computer, I reached for leftover sections of The New York Times and turned to Science Times from Tuesday. I should have just stayed in the blogosphere.

First I read a story about the wonders of blood. The writer, Natalie Angier, seemed to make light of the possibility of dying from blood disorders. I know I was being super-sensitive, but I got upset, and dashed off this letter to the Times:

"As a newspaper reporter myself (at a regional daily in Western Massachusetts) I understand the urge to write playfully about a serious or mundane topic that might seem dry otherwise. In her Basics piece about blood, Natalie Angier begins and ends with an attempt at humor that is upsetting for a blood cancer survivor like myself. I assume that anyone who has been treated for leukemia or lymphoma , or who is a hemophiliac, would react the same way if they read Angier's lead paragraph in which she writes that if you lose too much blood, "you must either get a transfusion or prepare to met your mortician," and her concluding line that, "Should a clot happen to cut off blood flow to a vital organ like the heart or brain, the only one playing the harp will be you." In the body of her story, she does a fine job describing the wonders of blood, about which I had already, unfortunately, learned way more than I ever needed to know when cancer afflicted mine. Angier should not have been flip when talking about the possibility of death faced by many with blood disorders."

At the paper, we often get complaints from people offended by one thing or another: short people, tall people, fat people, skinny people...we roll our eyes, saying you never know who you're going to offend next. I wonder if the Times editors are now rolling their eyes at me.

Next I turned to a piece about the new book by John Grogan, author of the book "Marley and Me." I had read "Marley and Me" in the hospital and really related to his story about a poorly-behaved, and lovable, labrador retriever. I was about half-way through reading about the new book when I came to the point where Grogan said he had been thinking about his father's death...from...leukemia. I didn't finish the story.

So much for a relaxing read before bed.

I get upset when I read about people dying from leukemia. Obviously I know it happens, but when it becomes personalized, it's extra-upsetting. It brings on the post-traumatic stress, big-time. I'm sure it happens to other people who've been through any number of things. Bang -- you read about it happening to someone else, and you feel more vulnerable.

My social worker, Mary Lou Hackett, had told me I'm not alone. When Susan Butcher, four time- Iditarod champion, died of leukemia in 2006 at age 51 (she relapsed post-transplant), I was hit especially hard. She said the news was on all the televisions in the Brigham and Women's Hospital floor where patients were being treated for leukemia, and the nurses told the patients to turn the TVs off.

Even writing that sets me off.

So what are you supposed to do? Try not to get "hijacked." Allow yourself to feel sad about what happened to someone else, and then try to remember that it did not (and hopefully will not) happen to you.

And then, go do something else.