The question nobody asks

Helen, are you going to die?
Because if you are going to die, I'm going to come see you first.
- Alice Sims -

What's the prognosis?
Jennifer and Karen


No. I'm not. Actively anyhow. Any more than you are.
And I'm often annoyed that you don't have the guts to ask me this, when I can see it in your eyes.

As you all know, I talk about cancer, breast cancer, boobies, cancer statistics..a LOT. I am immersed in the culture of cancer and cancer care, and the bigger argument about health care (EPIC FAIL!) which is still raging in this country.

Sometimes I wish I'd shut up. Sometimes I'm sure you wish I'd shut up. But this one, PLEASE let me answer it for you.

I am not actively dying any more than you are.

Cancer these days, including metastatic cancers, GI cancers, all those nasty things that your parents either whispered about or hid when you are a kid, are now much closer to a chronic disease than the mostly fatal disease that they were back then.

Yes, I'm more likely to die of cancer than you are. But I'm not much more likely than your friend who has diabetes to die of it within, oh, say the next two to five years.

OK. Statistics. If you are an American, you are most likely to die of heart disease. One in two. Fifty percent of deaths, flat across the board. If you've been told you have a heart issue, or high cholesterol, guess what? Your disease is just as likely to kill you as mine is to kill me. Uncontrolled, you may be worse off.

Number two killer of everyone is cancer, all types. Memory is that it's about one in three. Number three is diabetes and diabetes related problems.

But why doesn't a diagnosis of heart disease get the response that cancer does?

My favorite written cancer story is called Grace and Grit. Written by Ken Wilbur but about half authored by Treya Killam Wilbur, it's about their lives, and the five years where they lived with breast cancer, and eventually diabetes as well. She was diagnosed right before their honeymoon, and the two of them lived with it during their entire marriage. This sound familiar to anyone? Its authored by Wilbur, using a large number of quotations from Treya's diaries. Wilbur has been writing for years about the perennial philosophy, and so their story is woven in with his own early philosophy. But they also went through it in the 80's, when breast cancer was killing more and more women.

One of the things Wilbur nails is the difference between the disease and the illness . The disease is what is happening physically in my body, and what that does to me. I have some cells that won't behave, that have learned NOT to stop growing and dying, and sometimes their growth interferes with other stuff, so I have to try and control them.

The ILLNESS is the vast cloud of cultural beliefs, myths, and gobbledygook that surrounds the disease. Pink ribbons, for fuck's sake. (Gag me!) The idea that it's always a fatal disease. Pity, fear, misunderstanding, the fear that it's contageous. Asshattery. Sympathy, support. Misunderstanding. Judgement.

One difference from heart disease or diabetes is that often cancer patients look like shit. Chemotherapy can be fairly obvious, and believe me, we don't just look half dead, we feel half dead. And that's pretty much now it works. Chemo kills you part of the way, killing the cancer at the same time, and then we hope that your body and immune system can rebuild itself over time from half dead back to mostly alive, without the cancer. The basic structure of this has not changed since the 1950's, and it's how almost all western cancer treatments work - chemo and radiation in particular.

Radiation for the chest for me was worse that chemotherapy, but gamma knife surgery was a piece of cake, other than taking steroids. Right now, I look in the mirror, and it bugs the shit out of me. My face is puffed up from steroids, and I joke with wertperch. The last chemo I had, strangely attached to, yes, HAMSTER protein (Nanoparticle Albumen Bound paclitaxel, an experimental drug, for those of you who like the fancy stuff) must have backfired, and I am slowly turning into a hamster. Steroids make you puffy, and over time they can make you grow more hair, so no whisker jokes, please....)

I know, I know, I'm rambling, but I'm trying to get there.

I. Am. Not. Dying. Any more than you are. I am living with a disease that to some extent can take over your life, but truly not dying.



There are about 120 women with metastatic breast cancer who talk on a a popular web site, and one of the things we constantly bump up again is that people have trouble coping with the question they can't ask. How long have you got? What is the prognosis? HOW SOON ARE YOU GOING TO CROAK? In the four years that my mother was dealing with ovarian cancer, exactly one person asked her that, and in the almost six that I have, exactly no one, until last week. Clever Jennifer, a nurse, asked what IS the prognosis? Thank the STARS! And wertperch once in a while gets the pitiful "How long does she have?" Sometimes he answers, sometimes he walks away, depends on the particular social graces and timing

But you know what? I can see it in your eyes, the moment when you want to ask me that. And geez, go for it. What's the prognosis?

Fifty percent of people with metastatic breast cancer die within two years. (pre 2002 - 22 months.)
Forty percent of people SURVIVE for five years.
Eighteen and a half percent of people are alive after fifteen years. (pre 2002 - 3 percent.)

Now stop. And think VERY carefully about the bell curve that this forms.

Half of patients die within two years. All the rest, except ten percent, go at least five. Why?

That is what statistically is called a long tail. The top of the bell curve ramps up really fast, and then the slope down is long and gradual. WHY? The ILLNESS, not the disease. My friends, I am GOING for the long tail. Fifteen years, just stay out of my Amazon freight train way.

My oncologist says he can pretty much tell how someone is going to do in the first few months of treatment. Or the first time he meets someone. About half the patients give up at the moment of diagnosis. They think Cancer = Fatal =I'm going to croak.. and they proceed to croak, treatment or no treatment. The other half say, Right. I'm going to fight. What you got for me? And a sensible physician, like Dr. Rosenberg, says we are going to take a big bat, and we are going to hit that sucker HARD. (And man, did they.) And the fighters tend to go on and on. They repeat chemotherapy. They repeat radiation. They do hormone therapy. They do clinical trials. And in the most recent study, which ran from 2005 to 2010, proves that it works, people routinely live with breast cancer for 15 to 20 years, or longer.

Breast cancer, unlike, say, ovarian cancer is typically extremely responsive. With ovarian cancer or stomach cancer, still, if you have it, and then it RECURS, you are probably going to have a tough time. They are resistant to a lot of chemotherapy drugs, with only a five to ten percent response rate. So they stack them up, and still only 30 or 40% of patients get their cancer croaking instead of saying, HAH, I am in your base, ignoring your chemo! Whereas breast cancer has a ton of good chemo agents, and you can stack those suckers up. Gemzar. Cisplatinum, and all the other heavy metals. Thalidomide. Now, as you go down the line, the side effects get nastier, but still. THEN you can do clinical trials. Right now there's one trial, for 30 women, where they will CUSTOM design a drug for the particular protein in your PERSONAL tumors! Designer drugs! I don't qualify, but man, how cool is that? We could get Ralph Lauren to sign on and design the hospital gowns, and people would beat a path to the door. If I qualified, I'd sign up right now.

The down side is, no one knows this side of the story. So we often get, shall we say, a misguided reaction? More and more, the blog I'm writing is about the story, and the fact that NO ONE has done what we are doing, which is living with this stuff as a chronic disease, rather than a fatal one. AIDS is similar. It is no longer considered a fatal disease, because of amazing treatment developments. Some of the side affects of the treatment are nasty, and the sociocultulural illness structure is undoubtedly even worse than cancer. A stigma within a stigma. "What's the hardest part of telling your parents you have AIDS?" "Explaining to them that you are Haitian." Did you know your jammies don't go with your lesions? Well, at least I don't have CANCER. (It's possible those jokes are way out of date, and no one else will get them. From when AIDS was first appearing, about 30 years ago.)

We are, none of us, dying of cancer. We are living with it, our families are living with it, our children are living with it. Some days we cope with grace, sometimes we just cope. Elizabeth Edwards' death was hard on us. It was a reminder that in spite of how groovy we are, and our good attitudes (SMILE OR DIE) and our juicers and our raw food diets and our gin and margaritas on the sly, that this could get us, eventually. That we could do everything right, and still croak. And these gals are the tough ones - they are, like me, living with lesions in their chests, heads, livers, bones...pain, side effects, loss of function, etc. They have trouble getting in and out of their bathtubs. They might walk with a cane. But they are badasses, to a dame.

And man, do they have GUTS. Grace, AND grit.

But truly? There is nothing worse than no response. If you want to know, ask the question. A stupid question, or a silly one, in my book, is far better than nothing. And really, that is a polite way to do it - "What is the prognosis?" is just FINE. Just think about your timing, I'd sort of prefer you don't ask me in the grocery store. Two other useful questions - "How are you TODAY?" Is far better than "How are you?" You might illicit far more info than you want with the latter..and, "What's new?" Is great.

So there you go. Prognosis - good. Side effects, sort of gnarly at the moment, but whatever. I won't look like a hamster PERMANENTLY. Family drama, a little over the top, but winding down. Work, fantastic. Weather, lovely. Fine, thank you, how are you?

Love, grundoon