Sunday, February 12, 2012

A Few Choice Words: Bonnie Erbe & Komen

In her column, "Komen 'Race for the Cure' a Misnomer," Bonnie Erbe has articulated a few of the things that bother me so much about that organization: 
"But the "race for the cure" is a misnomer. After 30 years and literally billions of dollars collected in donations, there still is no cure for breast cancer nor is there one on the horizon."
"Then there's the bit about funding breast cancer research. In its last fiscal year, the foundation spent a paltry 20 percent of its almost $400 million take on research. To call its signature event "the race for the cure" is false advertising. It should more appropriately be called "the race to pay Susan G. Komen executives huge salaries and give them permanent sinecures," or something of that nature."

Friday, February 10, 2012

Goodbye Rachel and Susan

On Monday, 02/06/2012, the #BCSM community lost two wonderful women: Rachel Moro and Susan Niebur. In a twist of cruel and bitter irony, they died within hours of each other, on the very day we gather for our tweetchat. That evening's chat was no doubt some kind of online interaction history in the making, as we came together to honor them, grieve, and support each other. Here is some food for thought:

Both Rachel and Susan were brilliant writers, and their work is a must read for anyone interested in Breast Cancer. Susan's blog is Toddler Planet and on Twitter @whymommy. Rachel's blog is The Cancer Culture Chronicles and on Twitter: @ccchronicles.

ADDENDUM: Here is the link to the Transcript of the #BCSM Chat in Rachel and Susan's honor.

Return of the Fatigue Monster

I have been battling the Fatigue Monster for the past five days, and when he (FYI, I arbitrarily designated this Monster as a male of the species; it could just as easily have gone the other way) hits hard —he must have copped some serious roids lately—I get to feeling like I must have had me a good ole round of chemo, just without the nausea. 
If you’ve been there, this might sound familiar: every cell in your entire body hurts and aches, on top of which you could swear someone yoked you to an anvil when you weren’t looking, because walking has somehow been replaced by the excruciating dragging around of your now pathetic, humiliated self.
And, of course, nothing really helps you feel better fast enough, not Advil, not a nap, not a “walk,” not caffeine, not fresh organic food, green tea or mac ‘n cheese, not chocolate, not Western medicine, not Integrative or Complementary either, not yoga, not meditation, not anything. The Fatigue Monster has prevailed and you are now its lowly slave.
This becomes all the harder to bear when you are already two years out of chemo, and one year out of a couple of major surgeries: You feel like you should be so much better by now. And if you’re anything like me, you have always been a striver, a do-er, a putter of much pressure on yourself… a person whose will and tenacity had made it seem like you could get through all sorts of unusually harsh life-events and come back to The You You Thought You Knew—you know, the one with all that determination, energy, good cheer, and…. drumroll….. STAMINA. Aaaargh..
(January, 2012).

Twisted Path

I don't know why cancer hijacked my life three times.

I have pondered the question ad nauseam and on any given day can tell you that "there's a reason for everything," or that "%$@# happens" or both or neither.

I don't have a family history of cancer, I've always eaten on the healthier side (I actually liked broccoli as a kid) and have always been an active person. Ironically, each time I was diagnosed I was otherwise Healthy -- yes, definitely Captain Healthy with a capital H for emphasis.

And throughout these three episodes, the only thing that ever made me "sick" was the treatment to rid me of the lethal disease. That's one of the reasons why the term "hijacked" seems so appropriate.

Being sick, being a patient, spending hours and hours and hours in Doctors' offices, putting medication and chemicals in my system..... none of these things were ever on my radar or even on the most remote edges of any wishes, desires, dreams and/or plans I might have had for my life. The notion of a hand of cards makes some sense. I have been dealt some terrible ones.

It's complicated. I've had cancer three times--three primaries, i.e., each one brand new from scratch--but each time it was caught early. That's considered lucky.

But having a body that allowed tumors to form--that's not lucky. And having to go through treatment to remove it and prevent it from spreading, that's not lucky either. State of the art** treatment is still a brutal combination of Slash, Burn and Poison (surgery, radiation and chemotherapy), aka Torture. I consider it Barbaric.

Then again, being diagnosed early, having the most outstanding medical team, having access to treatment, that's lucky because it has now literally saved my life three times.

Surviving cancer as a young woman is lucky, but it's also "unlucky" because you have to live with the aftershocks and the uncertainty (will it come back?). And on and on it goes. As I said, it's complicated.

Having to stop your life to fight cancer--talk about a source of anger and frustration. But I know I have grown and learned and continue to do so because of it.

I know that the lessons are about things like acceptance, surrender, and the true meaning and purpose of inner strength amongst other Big Life Questions.

Cancer has been a catalyst for my examination of these concepts over the past 15 years, and I realize now that they have been in and around my consciousness for as long as I can remember.

I never wanted to be sick, but I have always wanted to understand life. What a twisted path.

--Thanksgiving, 2009: written about a month after my last round of chemo.

By The Way: I don't consider cancer to be a "gift," and I don't use the words "acceptance" and "surrender" lightly!

**I wrote this in 2009. Since then I have learned a lot about genetics and targeted treatments (such as Herceptin for the subset of Her2Neu positive breast cancers) that don't compromise your entire system, and the research that is being done in that area. I highly recommend the incredible Pulitzer Prize-winning book The Emperor of All Maladies, by Siddartha Mukherjee for a comprehensive history of cancer, the "War on Cancer" and great insight as to where research is headed.

The Shadow

Breast Cancer, like any other traumatic event, will not go very far out of its way to gift you with its very own brand of PTSD whether you like it or not.

A wise man I know calls one aspect of this "the shadow of cancer." As in, once you're done with treatment, you're never "really done," because you have no way of knowing if it will come back or if you'll get a brand new one, or .... not.

That is something you have to learn to manage, and 30 days of 24/7 ubiquitous pink can get in the way of that.

As a fellow traveler on the verge of tears said to me the other day, as we both left the oncology office, "I'm just trying to live my life, and everywhere I go, it's PINK."

This brave woman is in great health. She's 3 years out from her battle with BC, but that relentless shadow still terrifies her. (October, 2010)