Dance with the Reaper

I’ve has some non-cancer related stuff going on for a while and it has choked out my ability to write. I think I might be moving past it now, finally.

Thank you for being patient.

I had coffee with a new friend this morning. We spent two hours enmeshed in one of the more memorable getting-to-know-you conversations of my adult life.

I’m not gonna lie. I’m pretty psyched.

“I’m thinking of cutting off my hair and going all short and edgy,” I confessed.

Oh, my, g-d. I’m talking about my hair. She’s going to think I’m self-centered and superficial.

“When we do that, it’s always in reaction to something else,” she said. “What’s really going on?”

Whew.

I thought for a moment. “It’s this conservative morass we’re stuck living in. I just want to make it obvious that when you scratch the surface, I’m a radical.”

My new friend looked at me.

“Really, I am.”

She looked at me.

“All right, I have this old theory, a really old theory that I came up with when I was in my teens. If you really get to know someone who is heavily goth, or punk, or whatever, you find out that they’re quite often just a regular person with the same insecurities and anxieties as everyone else, and the look, goth, or punk, or whatever, is, to a large degree, compensating for just feeling extremely normal. I’ve typically had a very conservative look, compensating in the other direction. And I think I want to move away from that.”

“So you’re telling me that you’re a punk, a part of the counterculture?”

I thought about it. “Not quite punk. It’s more of a strong gothic streak.”

I blog about death.

“Is this new, after your illness? Or have you always been this way?”

I’m stunned.

“Always been this way. I was a goth little kid with a morbid sense of humor, a little Tuesday Adams. In the seventies. In retrospect it was hilarious.”

I think I’ve always known. When I heard the word cancer, I wasn’t surprised. It’s as if the first half of my life was one big opening act for me to live out the second half of it in this semi-undead state of post-life existence.

I’m  not a woo-woo kind of person, generally speaking, but I wonder how it is that I’ve always known this about myself, and I wonder what else I could find about myself if only I were open to listening.

On the way home from the hospital after our very first visit, I was reading the “chemo book” out loud to Chris. It was a depressing read except for one line: “For more information, check out our video, “How the Bowel Works,” which I could barely speak out loud for giggling like a nine-year-old.

It became a byword. Whenever we needed to add some levity, one or the other of us would suggest picking up that video from the MD Anderson library and we would snicker.

Today, eight rounds of chemotherapy and seven surgeries later, I still giggle, but I also know that a functioning digestive system is a miracle not to be taken for granted. And I’m thankful, every single time I step into the bathroom.

Happy Thanksgiving. Be sure to eat plenty of fiber.

Chris’s parents are visiting us for the holidays.

His mom is on a restricted diet — no gluten, no dairy, no eggs, no soy, and, worst of all, no chocolate. I can make enough food that we can all eat well for a few weeks. I’m sure I’ll lose weight.

Here’s what I’m thinking about.

How much do we all take for granted, being healthy. Being able to eat cheese, or bread, or (best of all!) cheese melted on bread. Fondue, the cheese kind and the chocolate kind. Of course I am happy to accommodate her dietary restrictions. I remember being intolerant to all kinds of foods when I was on chemotherapy or, worse, pregnant.

The thing that’s killing me is how much she appreciates it. From my point of view, of COURSE I will bend over backwards to meet her food needs. From her point of view, it’s a huge deal.

I think it’s a generational change in how we treat people with differences.

An article by Jane Brody in today’s New York Times hit me right between the eyes.

She says what I say, and what I wish more people would say, which is that cancer treatment often makes no sense at all. If someone is going to die anyway, why put them through hell on the way there?

Why indeed? Because no one wants to die. The article, which is worth a read, talks about the inability of so many cancer patients to admit that they are going to die, sooner.

It’s a hard thing to admit. It’s an even harder thing to know, and I think we put an unfair burden on our doctors to tell us what will happen to us. Because they can’t know.

Here is what they can, and do know: they know the outcomes of other patients with cancers similar to ours and treatment plans like the ones they are proposing for us. In my case, between 60 and 70 percent of women presenting with breast cancer like mine died within a few years. I’m obviously in the minority of women who didn’t, and I have always been grateful to my doctors for being open with me about my prognosis.

“I’m sorry,” my surgeon told me in a moment of complete candor I will treasure forever.

On the other hand, I was open to hearing bad news. I asked, and asked directly.

“How serious is my disease? Is it curable? Are we just going to make my last few months a living hell?”

“I hope not, but your disease is curable,” I was told.

Not everyone has my kind of outlook. I imagine most people wouldn’t want to know.

I think the only thing missing from Ms. Brody’s outstanding article is the concept of grace, and the acknowledgement that everyone is just doing the best they can in a bad situation.

Best post ever.

A physician talks about the pre-abortion sonogram law. “It’s time for a little old fashioned civil disobedience,” he says.

Thank you.

A friend of mine has a bad case of uterine fibroids and is about to have surgery to fix it. She’s understandably scared, of the surgery itself, of any complications with her possible future fertility, and because the doctors have thrown around the word malignancy, she’s freaking out just a wee little bit. In order to give her a morale boost, our mutual friend Moxie of Ask Moxie fame asked her readers to tell their stories about fibroids and fertility. So far so good: Moxie’s readers never fail to deliver — except for one woman who posted about raw food, herbs, and yadda bullshit yadda. And then, while researching plants for my garden I stumbled upon a link to a web site promising herbal cures for cancer. Oh my! If only I had known! Wormwood! I could have harvested some plants of uncertain potency but poisonous certainty, brewed them in unmeasured quantity, and drunk them — during the dark of the moon, perhaps — and cured my cancer that way. It feels like a sock in the gut.

Healthy food is healthy. Herbs are good — I have a huge herb garden, and that’s why I was googling plant names. Furthermore, research never hurt any one — so what’s the problem?  I am reminded of the six stages of learning according to Ibn al-Qayyim:

Firstly: Asking questions in a good manner.
Secondly: Remaining quiet and listening attentively.
Thirdly: Understanding well.
Fourthly: Memorising.
Fifthly: Teaching.
Sixthly – and it is its fruit: Acting upon the knowledge and keeping to its limits.

Call it bad science. Call it an epistemological fallacy. The persistent myth that modern medicine is wrong, that we should address our ills with commonly found garden plants fails on all six counts, and most importantly, the sixth: acting upon the knowledge and most especially keeping to its limits.

There is nothing wrong, per se, with an herbal tincture. What’s wrong is letting superstition stand in the way of science, and preying on gullible people who fear what they do not understand. Spreading the lie garden plants or, worse, proprietary and expensive herbal blends, will cure cancer jeopardizes people who don’t even know the right questions to ask but who will blindly trust someone who tells them what they want them to hear. It insults the tens of thousands of women and men who have devoted their lives to the study of disease and the quest for a cure. It insults the millions of women and men, including me, who have undergone treatment pushing us to the very brink of death so that we might have a chance at life. And most of all, it’s an abhomination of an an insult to the men and women, husbands and wives, sons and daughters, brothers and sisters who have lost their lives to cancer, implying that had they only but opened their minds they might have lived.

I know that people truly believe in the magic power of herbs — and I also acknowledge that plants play a key role in many forms of legitimate religious practice. I know that my lone voice will never change anyone’s mind. And I also know, because my doctors told me so, that a certain number of cancer cases, about 10% according to my doctor, do resolve themselves without any medical intervention.

But conflating the power of herbs with a magic cure for cancer takes us back to the dark ages when a cancer diagnosis was a death warrant.