June 21, 2005

My Mother Has Cancer

I sent the following email to my two grown sons and their mother last night. (Hyperlinks added.)


A couple of weeks ago (some time after my June 2 blog post about her health) my mother was taken to the emergency room with vomiting and other messy problems, and a workup showed that she had severe anemia. We were surprised, since a checkup less than a month before had shown only the beginnings of anemia. She also turned out to have an enlarged spleen, and I think the doctors immediately suspected she had some kind of lymphoma or leukemia. I think it must have flared up quite fast. She had a transfusion last week that effectively overcame the anemia, but a bone marrow transplant showed that she had mantle cell lymphoma (MCL), a relatively uncommon type of non-Hogkins lymphoma. This is a type of lymphoma with a poor prognosis; in fact it's considered incurable by current methods. In younger patients, aggressive chemotherapy can prolong life somewhat, but the average survival span is still only 3 years. My mother at 84 is far too frail to undergo chemotherapy. The treatment would kill her more quickly than the disease, and more painfully.

She's being looked after by a hematologist at Yale Medical Center, and today the doctor told her the news. My brothers and I knew about it a few days ago, but we wanted the doctor to be there when Mom heard about it -- both because he could answer questions, and because he could probably break the news more gently, more skillfully, than we could. (Andy tells me he seems like a good doctor and a decent person.) So we arranged the consultation for today when he was available. And I didn't want to tell people until my mother herself knew, so although I prepared John for it last night over the phone, I didn't tell all I knew.

As it turns out, the situation is a bit more hopeful than I would have said last night. For one thing, this is not a painful form of cancer. The major symptom as it progresses is fatigue due to anemia, and for a time -- probably some months -- periodic transfusions can again overcome that. She also may be receiving treatment with ritumixab, a monoclonal antibody that fights antigens found on the malignant cells. This could help prolong her useful life, and its side effects are usually minor.

The doctor didn't mention a time estimate today and Mom didn't ask, but last week the doctor told Andy that it might be a year or less. Given Mom's age, I think it might be less.

The good and surprising thing, though, is that her spirits are good, her attiitude is calm and accepting. She's always prided herself on being a good patient. She's been talking about getting her affairs together, and my brothers have had good, loving conversations with her. I'm going to fly out there in about three weeks to spend a few days with her.

Before she got the news, she was notably optimistic and looking forward to doing whatever had to be done to fight the disease. In fact, in her lifetime of negativism, I'd never known her to be so optimistic about anything. I was afraid she'd be devastated to learn that nothing can really be done. But she's remained as optimistic as can be under the circumstances. In her family, I think people have always responded better to bad news than to good. That has it uses.

She's at a rehab center now. She was getting exercises to strengthen her legs and arms in preparation for a hoped-for return to her assisted living center. We're not clear what's going to happen now as far as care. We may find her a private apartment with 24-hour care. At some point, when medicine and transfusions lose their effect and she grows weaker, she'll probably go to a hospice. That was explained to her, and according to Andy, she seemed to accept it -- possibly by blocking it out to some extent.

Her phone number at the rehab center is [deleted]. It's best to call her in the afternoon. She should be there a few more days. I'm sure she would love to hear from you.

A few facts about MCL:

• It represents about 0.24% of all cancers
• It strikes men much more than women, and usually people over 50
• It can remain dormant for an undetermined time before diagnosis, and is often discovered by accident
• No cause is known, but it's related to a chromosomal translocation -- a sort of mutation, but one that isn't inherited. There's speculation that this genetic problem is caused by exposure to chemicals such as pesticides, hair dye (my mother didn't dye her hair), etc.
• The diagnostic category of MCL is new, and still not universally established throughout the world

For more, see:
Lymphoma Information Network

I'll keep you informed as time goes on -- let you know her new addresses and phone numbers and how she's doing.