Not an outrage

Grey day. Gray day. I think they're different. Today was grey.

I received a gift today from my friend of fifty-odd years, Pat (Beal) Jacques. It's a beautiful hand-made fluffy boa-type scarf in a gorgeous aqua color with beads at the ends. I'm going to send her something as soon as I get around to it. (Have you seen those in the kitsch catalogues, the potholders with the words "Round Tuit" on them? Great gift for procrastinators...I...know a few :-) )

A new person has joined the main breast cancer list I belong to, bclist.org. I call it the main list because it's for anyone who has or has had breast cancer, at any stage, and their families and friends. The new list member is an M.D. named Wendy Harpham, who is the author of several books about cancer. She's a 17.5 year survivor of lymphoma, and has a sister who is a breast cancer survivor (survivor is her word of choice).

I find that I get very sensitive when I hear anything that faintly rings of "positive attitude" stuff. By implication, those who don't survive must have a pretty lousy attitude. The preponderance of scientific evidence is that, while it might make it easier to live on a day-to-day basis, a positive attitude does not affect the outcome of cancer. Nor, despite what you may have heard, does prayer.

Anyway, I've been hard-pressed to express what's been eating at me this winter (besides winter itself!), and I let myself tactfully respond to Wendy's initial postings. Now, before I go any further, let me say it turns out that Wendy's a pretty good egg (where the hell did that phrase come from? Some rabbit, I guess). And a pretty wise person as well. She does use the word survivor, which I don't like. I guess I'd have to call myself a soon-to-be-ex-survivor. And, despite coming back from the grim edge more than once, when Wendy's in remission, she says she "had" cancer. My response follows.

Wendy: "As soon as I am in remission, I prefer using past tense. Until my scans say I have cancer, as far as I'm concerned, I don't have cancer. That's what works for me."

May: "I think you're right that it's best that we use terms that work for us as individuals.

"However, the differences among different types of cancer (and the limitations of testing) also affect how we refer to where we're at, I think.

"For example, as a bc [breast cancer] mets [metastatic] patient, given what I know about my cancer, I now call myself NED [no evidence of disease]. What that means is that a PET/CT and a brain MRI given recently identify what, in the radiologist's and oncologist's best judgment, appear to be healing tissue or complete absence/disappearance of tumors. No cancer was seen.

"That happened once before, when both doctors felt that the tumor in my sternum had been eradicated and only recalcifying bone remained (which lights up on a PET/CT, in case I've thoroughly confused anyone). Later it became clear that the remaining cancer cells were growing again, and I had IMRT [Intensity Modulated Radiation Therapy], which the rad onc thought was at least 80% likely to destroy the tumor. When I was tested, it was uncertain whether the tumor was completely destroyed or not. However, there was a liver tumor, so Navelbine was added to my Herceptin and Zometa, and about four months later, PET/CT showed that that was gone, and the docs were now virtually sure the tumor in my sternum was gone.

"Do I say I 'had' cancer? Never. I believe I have circulating cancer cells, and probably tiny colonies have gained a footing at various places in my body. I'm three years past the mets diagnosis, and would be happy to know I had another three years.

"But that's reality with bc. These diseases are all different critters.

"By the way, unlike some people, I don't 'hate' my cancer, or cancer itself. I accept the reality that for various reasons, including aging, cells tend to do things that aren't necessarily in the best interest of the whole organism. That's just life."

My friend Marcy wrote to me: "I think people are lost in knowing what to say, so they whistle in the dark. They imagine they'll cheer others (and themselves) up if they point out this stuff with great sunniness. Instead, it feels alienating to have others trivialize the real odds."

I think what she said is exactly right.

And so, those were my two cents. For some reason I have to keep repeating this stuff, not just to others, but to myself. The danger of too much hope is a devastating bitterness, a bitterness that will suck all the tenderness and healing out of the last weeks and days of my life. And, as Ram Dass has said, "Death is not an outrage". As we live this beautiful life, we are all one day closer to its end, every day. I hope to enter into eternity with as much grace as I can, "to grow from the grass I love. If you want me again, look for me under your bootsoles".

With metta,
May