Me in 2011, post double mastectomy and mid-chemo.
When I first started DoubleWhammied shortly after my breast cancer diagnosis in February 2011, it was because I needed a safe place to process all the mindblowingly weird stuff I was going through, to tear it up and work it out with equal parts rage, humor and F-bombs.
Cancer and its treatment were terra incognita for me back then – a large, black hole filled with fear and horrible misperceptions. I’d never known anyone who’d gone through breast cancer – or any cancer, for that matter – and was terrified that I was going to be disfigured and dead within months. At the very least, I thought I’d be transformed into some gaunt, sad scarecrow figure who shambled around the neighborhood, scattering children and dogs wherever I went.
A double mastectomy, three months of chemo, six weeks of radiation, four reconstruction surgeries and five years of tamoxifen later, I’m still here. The misperceptions – and the need to process – not so much.
Much has changed, in fact.
Instead of working as a freelance writer, penning pop health and humor pieces and dreaming of hitting that New York Times bestseller list, I’m writing public health news for Fred Hutchinson Cancer Research Center and advocating for patients in every way I possibly can. Helping people understand the disease, the treatment, the research and the progress that’s been made has become much more of a priority now.
Testifying in front of Washington State legislators in June 2015
In a nutshell, I want to help those who don’t have it, avoid it; help those who do have it, get rid of it, and hold out my hand to those lurching up the cancer road behind me as so many others held out their hand to help me when I first diagnosed.
These days, I’ve become a sort of “cancer whisperer,” tapped by friends and friends-of-friends and total strangers when they or someone they love is handed a scary, unexpected diagnosis. Cancer is no longer a swirling black hole of fear for me. As a recently diagnosed friend put it, “It doesn’t freak you out like it does everybody else.” Cancer is still scary, of course, especially when the time comes for me to go in and have my six month oncology check-ups, but it doesn’t hold the same power over me it once did.
I know a bit more about the biology of cancer now. And I know a lot more about how researchers are trying to outsmart it. I’m even working with some of those researchers, taking their studies, screening guidelines, policy recommendations, cancer prevention tips and more and translating what can often be confusing scientific-speak into something usable and understandable. I’m also sharing patient perspectives with them regarding the shortcomings of treatment and care, the gaping holes in communication (I’m still hearing about women not being told they’ll lose all sensation after mastectomy) and the shenanigans insurance companies try to pull on those who are too sick to advocate for themselves.
I’m “cancer whispering” through each and every one of my stories for Fred Hutch, trying to help the public understand that lung cancer isn’t just a smokers’ disease, that stage 4 breast cancer is very different from early stage breast cancer and that a person’s cancer isn’t over just because their treatment is.
In five years, I’ve basically gone from freaked out cancer neophyte to fledgling patient advocate, which seems to be a natural trajectory for many cancer patients. The more suffering you see (or experience), the more you feel compelled to help. Some people do this by holding fundraisers or creating cancer nonprofits and online cancer communities. Others attend ASCO or AACR and blog about new research or testify before lawmakers to increase awareness and funding or send cheek swabs to strangers in lab coats in order to expedite crucial research.
A few of them (I’m looking at you, Beth Caldwell), do it all.
I’m not much of a fundraiser or businessperson, but I do know how to tell stories. And share information. And connect people. So I’m doing that.
Me and the amazing Corrie Painter of the Metastatic Breast Cancer Project during her recent visit to Fred Hutch.
What that means for those of you reading this is that rather than blogging, I’m throwing most of my energy into my work at FredHutch.org these days. And while there aren’t as many F-bombs in the stories I write there, you will find a slew of stories and service pieces to help you and your loved ones navigate the crazy carnival ride that is cancer.
Not to mention a whole lot of science. Some of which is actually starting to make sense (well, maybe not that whole zinc finger thing). ; )
If you’re coming here for the first time as a newly diagnosed breast cancer patient, please feel free to start from the bottom of the blog and read up. You’ll find a ton of information about breast cancer surgery, chemo, radiation and reconstruction. There’s also good information, insights and inspiration in the many wonderful comments other cancer patients have left over the years. If you’re an old friend, this is just a note to let you know why the blog has long stretches of radio silence.
As always, thanks for the read and your ongoing support as the two of us – me and my spotty online persona DoubleWhammied – continue to morph and grow and carry on our mission of kicking cancer’s sorry ass one step, one story, one bad joke at a time.
Peace out and #FUcancer!
Double Whammied 