Last week I and many others were bludgeoned with the news that Jody Schoger’s breast cancer had metastasized — after Jody had no evidence of disease for 15 years. Jody is one of the founders and co-moderators of the now-famous #BCSM chats, a breast cancer support tweetchat group that is more than just a group.
We are a family.
For information on #BCSM, see Jackie Fox’s excellent post here.
I haven’t recovered from Jody’s news yet. I’m not sure I ever will.
I’m not sure I even want to.
Truth is, we who have had cancer are not “done” with cancer. Ever.
Lately, I’ve been reflecting how my view of breast cancer has evolved over the years. When my chemotherapy and radiation treatments ended in 2001, I embraced the idea that I defeated cancer. I was still shell-shocked from diagnosis and treatment, but I believed I was tenacious enough and fierce enough to accomplish the deed.
So much so, that I participated in my first Susan G. Komen Race for the Cure only two months out of treatment. I walked it, but I reaped the same benefits as the runners. At the finish line people were handing out pink roses — without removing the thorns. A prickly situation for anyone with lymphedema. Oh, and I received a medal for being a survivor.
I had such a wonderful, empowering time that I decided to run the Susan G. Komen Race for the Cure the following year. And run it I did. I was a reminder to the world what victory looked like — and I’m not talking about my snail-like pace. I remember crossing the finish line to the crowds cheering for me because I was a survivor, identified by my pink tee shirt.
I also became a sound bite that day.
A newswoman with a microphone and cameraman stopped me after I crossed the finish line, all sweaty but glowing, to quickly interview me. I said then, “Just over a year ago, I was so sick from chemotherapy and radiation. Now I’m running in this race. It’s simply amazing.” I felt joy and camaraderie from this experience. I was being honest. That was my truth back then.
And my sound bite made the news that evening.
Around 2004-2005, I started writing an immense amount of poetry after a 20-year poetry-writing hiatus and the death of my good friend to metastatic breast cancer. Much of the poems expressed anger about the positive haze surrounding “the good cancer,” as many insensitive people call it, and about other breast-cancer-related issues I was royally pissed off about.
Then I got a medical scare in 2006 that led to a prophylactic double mastectomy.
And my world once again changed. Once again came apart.
Besides the scare and damage to my psyche each time I must go to a doctor, I know that my cancer from 12 years ago can metastasize. Twelve years doesn’t equal a cancer success story. Neither does 25 or 35 for that matter.
Jody’s situation is like all too many others’ breast cancer situations. It could happen to you. It could happen to me.
We in the breast cancer world are never “done” with breast cancer.
But I have been done with Komen for quite some time. I am disgusted by the pink ribbon and cause marketing taking precedence over funding for research, which saves lives. Komen’s event is called Race for the Cure. Well, the race is real, but where’s the cure?
Peggy Orenstein’s brilliant New York Times essay on breast cancer is a must-read. So is Gayle Sulik’s book Pink Ribbon Blues. These writings, as well as those of bloggers, such as Nancy Stordahl, further opened my eyes to the damage of the pink ribbon. Awareness means nothing. We are already aware, but without sufficient funding for research, breast cancer will continue to metastasize and will continue to steal lives.
I’ve changed my photo caption for my head shot from “survivor” to “thriver” to now “breast cancer self-advocate.” I no longer know what to call myself. I now know that I’m not cured, as my surgeon once told me. I’m not in remission, as so many people tell me.
I have no evidence of disease. Which is good enough — for now.
In the meantime, our community surrounds Jody with love and support.
But we know we are never “done” with breast cancer.
And breast cancer is never done with us.
Have your views on breast cancer changed over time?
What is the best way to ensure that research dollars are going to metastatic breast cancer?
Tags: breast cancer, pink ribbon, Susan G. Komen Race for the Cure