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Cancer, COVID-19, science and learning to trust

4 Apr


Photo courtesy of Robert Hood / Fred Hutch News Service

I’ve been too busy writing lately so I haven’t had much time to write. Does that make sense?

Here’s the deal (as our fabulous new President would say – and what a blessing to be able to say that right?), I’ve been working on a novel. Like for the past two years and then some. Through all of 2019 and the ankle break that kept me stuck inside for nearly five months. Through all of 2020 and this pandemic, which has kept us all stuck inside and away from each other and life’s many wonderful distractions and is still, I’m sad to say, not over by a long shot.

And here’s the thing. I just finished it, the book. Title is #IMPATIENT. It’s a dark romp about cancer and other stuff. Like crime and friendship and the whole cancer industrial complex. It’s in the hands of a few trusted readers at the moment. As soon as they’ve found, and I’ve fixed, all the plot holes and bad science and insipid dialogue, it’ll be off to the agent. I hope.

And then I’ll need to figure out what to work on next — in the realm of fiction, anyway.

In the realm of nonfiction, there’s the all too real world of cancer and COVID-19, both of which I write about for my job-job at Fred Hutch. For the record, I didn’t come to science or the field of science writing intentionally. I was a writer, sure, but science wasn’t my subject. I sort of stumbled into it after being diagnosed and treated for breast cancer. I wanted to learn more about how cancer operated, how it all worked, so I could do my part to take it down.

With all the incredible sciencing going on with COVID-19 (along with the conspiracy theories and vaccine hesitancy), I decided to write about my complicated relationship with science and how I learned to trust it with my life after being diagnosed with cancer. Because I’d never felt healthier in my life than when they told me I had stage 3 lobular. Here’s some of it:

When somebody in a white coat tells you something you don’t want to hear, it’s easy to decide they’re full of beans — especially when nothing seems amiss.

I’d never felt healthier in my life than the day I was diagnosed with cancer (10 years ago this month). I had no fatigue, no lingering cough, no unexplained weight loss, not even a dang lump. All I had was a tiny tuck on one breast. But the doctors said they both had to go. They said I was stage 3 and needed chemo and radiation and then would have to take hormone-squelching drugs for the next 10 years.

Getting that news was like having a piano fall out of the sky and land on my head. You may recognize the feeling from last March when a concert grand called SARS-CoV-2 landed on all of ours. Part of me desperately wanted to ignore the surgeon, the scans, the histopathology, those microscopic images of my suffering tissue. That part wanted to run off to Mexico and bury my feet — and my head — in the sand.

Instead, I talked to friends and family and to other women who’d been down this road. Then I took a deep breath and trusted the science, even though I only understood a fraction of it. And I soon discovered cancer treatment was much less awful than I’d anticipated. Top-notch anti-emetics meant zero nausea; problematic low white cell counts were boosted with a belly shot of Neulasta (and no, not the kind you did in college). My regular jogs, which I thought of as therapy, actually were, according to the epidemiological studies I was now reading on the reg.

I was swayed. Science was something I needed to stay alive. 

FULL LINK: https://www.fredhutch.org/en/news/center-news/2021/02/learning-to-trust-science-with-your-life.html

Here’s the whole essay Learning to Trust Science with Your Life published a few weeks ago. Feel free to take a read. As always, take care and thanks for stopping by. I imagine I’ll have much more to share in days to come. 😉

Cancer patients and the COVID-19 vaccines

17 Jan
Everybody should get vaccinated – even cancer patients and chorus girls!

In my latest for Fred Hutch, the cancer/virus/disease research center where I work, I dig into some of the questions I’ve seen swirling around on Twitter and Facebook as to whether cancer patients should get one of the two new “double-whammy” vaccines from Pfizer and Moderna.

Short answer: yes and as soon as possible (with a couple of caveats).

Definitely talk to your oncologist about your immune system if you’re currently getting any kind of immunocompromising treatment, such as chemotherapy. (Anti-hormones, which many of us are on for years, don’t qualify as immunocompromising.) You’ll also probably want to get the shots timed so your immune system is at its strongest. People with active cancer (I take this to mean stage 4, newly Dx’d folx) and those in active treatment should be prioritized, per Hutch public health researcher / oncologist Dr. Gary Lyman, since the complications from COVID-19 can be a lot worse for these peeps.

And YES, you still have to mask up after getting vaccinated: we don’t yet know if vaccinated people can infect others or not. BUT we sure know a lot more than we did last year when this creepy zoonotic virus first raised its spiky crowned head. And just so you’re aware, 3 out of every 4 new or emerging infectious diseases in people come from animals.

If you really want to dig in to the COVID-19 vaccine and specifics about mRNA, transplant patients, etc., you can hear a lot more from infectious disease (ID) and cancer experts like Gary and Dr. Steve Pergam on this ASCO/IDSA webinar.

Let me know if you have questions and I’ll try to follow up with more resources. In the meantime, #MaskUp #KeepYourDistance and #JustKeepSwimming

Cancer patients and the COVID-19 vaccines

The initial batch of COVID-19 vaccines are now available in the U.S. following incredibly fast — “warp speed” — development and testing.

Not so incredibly, there’s a lot of confusion among cancer patients — as well as their oncologists and caregivers — as to whether the vaccine is a good idea or a bad idea for somebody dealing with cancer.

The two Food and Drug Administration-approved vaccines from Moderna and Pfizer-BioNTech, each requiring two shots a few weeks apart, were more than 94% effective at keeping this new coronavirus in check in testing on thousands of volunteers in clinical trials. But only a handful of the clinical-trial participants were cancer patients.

Other COVID-19 vaccines are in development and will be available in the months ahead. Additional trials involving subpopulations (think children, pregnant women, people with health issues) are also in the works.  

But what do we do now that states are ramping up the vaccination efforts to eligible groups?

Patients with cancer are particularly vulnerable to COVID-19 because of the immunocompromising nature of cancer treatments. On top of that, progressing cancer itself depletes the immune system and leaves patients susceptible to infection.

Does that mean cancer patients should be first in line for their shot — or last? If they’re in treatment, could a vaccine make them sicker? What about those with metastatic disease who are always in treatment — can they get it? And are survivors the same as the general public? 

Full story here: https://www.fredhutch.org/en/news/center-news/2021/01/cancer-patients-covid19-vaccine-coronavirus.html

Coronacrazy coverage of COVID-19’s impact on cancer patients and POC

7 Jun

cancer and covid

Cancer and COVID-19: double trouble. Illustration by Kimberly Carney, Fred Hutch News Service

Like a lot of people, I’ve been consuming a ton of COVID-19 news and new research. And because it’s my job, I’ve been writing about it for the masses.

Two things seem very clear.

One, the novel coronavirus is more deadly to cancer patients who are older, who have other health conditions — think diabetes and hypertension — and who have active disease.

Here’s a piece I wrote for Fred Hutch that breaks it all down. It’s based on new data just out from the COVID-19 & Cancer Consortium, or CCC19.

Published in The Lancet, CCC19’s data comes from a crowdsourced cancer/COVID-19 patient registry which was put together by a handful of Twitter-savvy cancer researchers in a matter of weeks. Since then, it’s morphed into huge international collaboration with more than 2,000 patients and hundreds of clinicians, researchers and research institutions, all working to gather, analyze and disseminate crucial cancer/COVID-19 outcomes in near-real time.

Here’s a snippet and a link to the full story.

What happens when cancer patients get COVID?

Large new observational study of nearly 1,000 patients breaks down who’s most at risk with coronavirus, highlights need for additional care

The first large observational study of nearly 1,000 cancer patients who contracted COVID-19 was published today by The Lancet and simultaneously announced at a virtual ASCO 2020, the large annual meeting of the American Society of Clinical Oncology.

The findings, gleaned from over 100 institutions participating in the international COVID-19 & Cancer Consortium, or CCC19, patient registry, underscore how deadly the new coronavirus can be for patients with active cancer and other underlying health conditions.

“If you have active cancer and are older or have multiple comorbid conditions that require therapy, you are likely at much greater risk from complications of COVID-19,” said co-senior author Dr. Gary Lyman of Fred Hutchinson Cancer Research Center.

“That’s one of the major findings and one of the most concerning findings. However, the risk is greatest in those with progressive disease and poor performance status and less when the cancer is stable or responding.”

The second thing, and this will come as no surprise to anybody who’s been paying attention to the Black Lives Matter speakers the last few days, COVID-19 is also disproportionately deadly to people of color.

It hits African-Americans, Hispanics, Indigenous people and other people of color much harder, just like cancer and chronic conditions like diabetes, hypertension, cardiovascular disease, etc.

With COVID-19, though, it goes deeper: it’s hitting black and brown populations harder because they’re more likely to be essential workers. They’re the ones working elbow-to-elbow in fruit and meat-packing plants. They’re the ones nursing COVID-19 patients in clinics and ERs. COVID-19 has exposed who’s privileged enough to safely shelter at home, safely work at home. And who isn’t.

It’s a new disease that’s underscored an age-old foe: racism and the systemic racism that’s baked into every one of our institutions.

Again, a snippet and a link to the full monty. Thanks, as always for the read. This is an important one.

COVID and cancer expose society’s health care gaps

Fred Hutch researchers work to disrupt health disparities and misinformation as coronavirus ravages the medically underserved

Disease hits black and brown people harder. Same for indigenous people, folks in rural areas, members of the LGBTQ community and others who are medically underserved. It’s what the research shows and what many of us have experienced firsthand.

These disparities aren’t the result of genetic predispositions, but societal ones. It’s the person’s socioeconomic status, their insurance and immigration status, the neighborhood where they live and whether they have access to (and can afford) health care, nutritious food, social support. It’s how people treat them based on their looks or their heritage. These are the things that truly dictate who gets sick and who dies.

It’s true for cancer, for cardiovascular disease and diabetes and in these times, for COVID-19.

“The disparities we see in COVID-19 are very consistent with most forms of cancer and most health conditions in the U.S.,” said Dr. Christopher Li, an epidemiologist with Fred Hutchinson Cancer Research Center at a recent Hutch Town Hall on health disparities.

And it’s crucial, especially as racial inequality has launched yet another national crisis, to understand them “within the context of the significant economic and social differences that exist in our society,” he said.

Finally, one last story from April (yes, I’m the world’s slowest blogger) on Treating Cancer in the Shadow of Coronavirus. It outlines what oncologists and cancer policymakers are doing to keep newly diagnosed cancer patients and those in treatment safe from infection with COVID-19.

Stay well, my friends. Keep wearing those masks, keep washing those hands, keeping lifting up the voices of those who matter and just keep swimming.

Coronavirus: what cancer patients need to know

8 Mar

CORONAVIRUS INFOGRAPHIC2So now there’s a pandemic. And my workplace and our scientists are right in the thick of it. I interviewed a couple of friends and Fred Hutch experts: one in infectious disease (Dr. Steve Pergam) and one in public health, health policy, outcomes AND oncology (Dr. Gary Lyman) to find out who’s most at risk for contracting COVID19.

That’s the brand new coronavirus that apparently leapt from some type of animal to somebody in China and now the infection has spread from there to Italy, Japan, Iran, South Korea, Thailand, you name it and now Seattle, where I’ve lived my entire “adult” life.

As it turns out, we’re now the country’s COVID19 epicenter. Not really all that much better than our previous reputation as Serial Killer Central.

Anyway, these two devoted scientists shared great data on COVID19 and who it picks on the most. They also had some great tips on little things we can do to boost our immune system (get that sleep!) and keep this new beast at bay.

Here’s their advice for cancer patients (past and present) and other folks with underlying health conditions (think COPD, heart disease, diabetes, HIV).

Wash your hands and read on.

Coronavirus: what cancer patients need to know: Advice for cancer patients, survivors and caregivers on who’s most at risk for COVID-19 and what you can do to stay healthy


FULL LINK: https://www.fredhutch.org/en/news/center-news/2020/03/coronavirus-what-cancer-patients-need-to-know.html

I’m having a moment

21 Apr

TalkIBC momentDiscovered a new Twitter tool that I’m geeking out about a little. It’s called ‘Moments’ and it lets you string a bunch of tweets together — yours and others’ — to create a short story.  It’s a bit like Storify, which recently lost its battle with cancer … er … capitalism. RIP, brave fighter! ; )

Anyway, I’ve put a couple of cancer advocacy Moments together and am going to attempt to share them here. The first is from Lung Force Day at the University of Washington back in March, a very informative sweep of the latest in lung cancer screening stats; smoking cessation apps; electronic vaping and Diane Maping (sorry, couldn’t resist). ; )

It was also a lovely opportunity to see the UW’s glorious cherry blossoms and hobnob with the area’s lung cancer oncs, surgeons, radiologists, researchers and (maybe) one patient advocate? Let’s fix that.

cherry blossoms

Big shout out to Fred Hutch’s Jonathan Bricker and SCCA’s Donna Manders, who are both doing amazing work to help cancer patients get through treatment; kick their smoking habit and sidestep the creepy lung cancer shame and blame game. Remember, if you have lungs, you can get lung cancer. And even if people smoke, they don’t “deserve” to get fricking cancer. Nicotine is super addictive.

Ditto for a lot of the other things we do that give us this craptastic cluster of diseases: drinking too much alcohol; suntanning; sitting on the couch watching TV and eating crap food all the time instead of exercising.

Just sayin’.

lung force day snipHere’s my Lung Force Moment. Please excuse the typos, blurry slides and lack of chronology. You can reorder your tweets but I’m too damn lazy — the sun’s shining and it’s time for Miss Public Health Sciences to go practice what she preaches. ; )

Hope the information is helpful!

My second Twitter Moment is from the Inflammatory Breast Cancer talk that Houston area patient advocate Terry Arnold — aka @TalkIBC — gave in Seattle at the swanky, restyled Cancer Pathways (formerly Gilda’s Club) on Capitol Hill. Terry is an IBC patient who went through seven kinds of hell trying to get a doctor to correctly diagnose her big red swollen feverish boob back in 2007.

Seriously, health care? What a shitshow.

Terry shared her diagnosis story and her path to advocacy (so far, her nonprofit IBCNetwork Foundation has raised $1M for IBC research) and some incredibly infuriating (and darkly hilarious) stories and slides of stupid things her five doctors told her before MD Anderson took one look at her and figured it out (FYI, they actually have an IBC clinic). None of the other docs would believe it was cancer. One guy told her her boobs were aging at a different rate, FFS.

After giving a Patient Perspective talk to 30 or so young docs at Seattle Cancer Care Alliance, Terry brought it (and how!) to the breast cancer patient community, along with Drs. Julie Gralow (onc), Sara Javid (surgeon) and Diana Lam (rad onc).

The breakdown: IBC comes on fast and aggressive; presents as a red, swollen, feverish breast, sometimes with orange peel skin; is often misdiagnosed / mistaken for mastitis and thus diagnosed later; and it’s more prevalent in young women and African-Americans. It’s a tricky one, a rare one (but data is incomplete so it may be more prevalent than we think) and it’s absolutely treatable. One day, hopefully very soon, it will be beatable.

Here’s my TalkIBC Moment along with heartfelt thanks to all the patients and docs and researchers working to take this mofo down. Please share with your networks so more women — and more importantly more doctors! — learn about this creepy breast cancer subtype.

As always, thanks for the read. Cheers and enjoy the day.

Terry and her crazy diagnoses

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Your spring breast cancer advocacy roundup from Seattle

1 Apr

spring flowersIt’s been a busy few months in Cancer Advocacy Land and it’s going to get even busier as we head full on into spring. I’ll be lending my patient voice to a couple of Seattle conferences on cancer care cost, health equity/health disparities and policy in late April and early May. And my BC buddy Terry Arnold of the IBC Network is coming up from Texas to talk about inflammatory breast cancer at Cancer Pathways (formerly Gilda’s Club, Seattle) on April 19. As an oddball BC patient myself (diagnosed with ILC), I look forward to learning more about this subtype.

Speaking of BC subtypes, make sure you check out the great new lobular breast cancer website (here’s my Fred Hutch story on ILC). Invasive lobular carcinoma (ILC) is the weird one where your cancer cells don’t have enough ‘glue’ to stick together so instead of a lump, they march through your tissues like creepy little ants. The upshot, lobular cells and ‘tumors’ grow more like a mesh or tree branch, which means in addition to not always making the standard lump, bump or “hard pea,” they’re hard to image. Mammograms can miss them; PET and CTs can miss them. Still a little unsure about MRI’s efficacy with ILC but would love to hear from radiologists/patient advocates on that point. ILC also pops up in some odd places when it metastasizes: your GI tract, your ovaries, the linings around your organs, even your eyeball area. It’s a freak.

But knowledge is power, right? Thanks to lobular buddy Leigh Pate’s efforts (and that of all the Lob Mob), this great new site offers resources and links and new clinical trials and much more information than I can fit into this “short-and-sweet” blog posts. Please go here: Lobular Breast Cancer Alliance, read up on the cancer, its metastatic spread pattern and how it differs from other ER+ BCs, and make sure your oncologist knows that you’re a special unicorn and needed to be treated as such. If you’re interested, there’s also info there on how you can join the Metastatic Breast Cancer Project and/or attend a lobular cancer research conference back in Boston this summer.

Good stuff is also happening with the Lymphedema Treatment Act, an “active bill” in the current Congress designed to help cancer patients who develop lymphedema after some or all of their lymph nodes are removed during cancer surgery. Breast Cancer patients are particularly vulnerable to this: full axillary lymph node dissection was standard of care for decades. In recent years, research has advised against this (thanks for your part in this, Gary Lyman!), so moving forward, breast cancer surgeons shouldn’t be harvesting healthy lymph nodes like ripe raspberries come summer.

This lymphedema legislation – which could still use your support! – will serve patients who’ve had their nodes taken and gone on to suffer swelling, pain, infection and other complications because their insurance wouldn’t pay for a compression sleeve and they couldn’t afford it to by it on their own. The bipartisan LTA, sponsored by Washington’s Rep. Dave Reichert; Senator Maria Cantwell (also of Washington), Senator Chuck Grassley, from Iowa, and many more, will do the following:

The Lymphedema Treatment Act (LTA) will improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies. Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow. 

Read more about the specific goals of the LTA here. Read my story on this common cancer surgery side effect here.

Science / advocacy quick hits: Went to the two-day Life Sciences Innovation Northwest Conference this last March 27-28 and heard about a bunch of cool new biotech startups, including one from Fred Hutch researcher VK Gadi (and others) that definitely warrants follow-up. SEngine Precision Medicine takes cancer cells from patients’ tumors or cancery fluid (think ascites), grows tiny little organoids with them, then tests out dozens (100s?) of drugs to see if any of them work. If they don’t work on the organoid and its particular mutations, then they don’t bother giving them to the patient and putting ‘em through all that rigmarole for nothing. If it does work on the organoid, then beautiful things begin to happen. I realize I’m being a bit of a breathless fan girl here but it’s a new and very targeted approach and I have a couple of (hundred) friends who could use a miracle. I’ll keep you posted. slide one - doublewhammiedAlso went to Portland mid-March for Komen Oregon and SW Washington’s Breast Cancer Issues conference. Was great to connect with some sisters to the south and hear about all the great health equity work that Komen Oregon is doing for people of color, for rural cancer patients and all the others who keep falling between the health care cracks. Was very honored that they asked me to share my story as the conference final speaker. Here’s a link to my talk (yes, I’m a hambone). Just doing what I can, while I can, to bring the information to the people. And kick cancer’s sorry ass, one bad joke at a time.

Thanks for the read, people. Happy Easter, April Fool’s (I blogged!) and love to you all.

Meet the #LobMob of breast cancer

18 Feb

lobular breast cancer patients

Illustration by Kimberly Carney / Fred Hutch News Service

Finally got a chance to write about lobular breast cancer, my particular flavor, and profile rock star patient advocate (and friend) Leigh Pate.

Leigh was diagnosed about the same time as me; she’s also a lobular gal and has already done a bit of advocacy around lymphedema, that really annoying swollen arm thing that breast cancer patients get when surgeons take out some or all of our lymph nodes.

Leigh and I met first over the Interwebs and later over cocktails at The Triple Door in downtown Seattle where we talked about lymphedema (or milk arm, as it used to be known). Because, you know, cancer patients know how to party.

After she recovered from treatment (and took a moment to breathe), Leigh sort of leaned into cancer research, as many of us do. She realized quickly that invasive lobular is lumped in (no pun intended) with invasive ductal and treated identically — mainly because lobular is almost always estrogen receptor positive (ER+ in cancerspeak).

But lobular is a different animal entirely, down to its tiny biological bits. And it’s a hard one to catch early, because it doesn’t image as well as ductal. Particularly if you have dense breasts — that’s where that whole “doublewhammied” thing came from. That and the fact I had two tumors in both breasts. Another weird lobular trait: many women have tumors in both breasts and/or have more than one tumor per breast.

There are other differences. Lobular spreads to oddball places like the GI tract when it metastasizes. The cells travel single file, kind of like deadly little tree branches. This weird growth pattern means it doesn’t always make a lump (mine was a “tuck” that pulled from inside and crumpled in when I raised my left arm).

But again, the cancer has been cast as “just like ductal” for a long time. So not everybody knows these quirky differences. Not even patients or PCPs or sometimes not even oncologists. Women come in with weird abdominal symptoms and they’re told they have irritable bowel syndrome (because hey, don’t ALL women have IBS?). But no, they have stage 4 lobular cancer.

leigh pate - lob mob

Leigh Pate, lobular breast cancer patient/advocate. Photo by Robert Hood / Fred Hutch News Service

Anyway, tired of the status quo and encouraged by an uptick in scientific interest, Leigh and a bunch of her BC buddies (the #lobmob), put together the Lobular Breast Cancer Alliance to raise its profile — and eventually, they hope, funds for more research. The timing is perfect because there are some cool new  lobular studies being done right now (at Fred Hutch and elsewhere) and we can all help get the word out.

You can read my full story here, which includes some intriguing history regarding combined hormone therapy (HRT increases the risk of lobular, not ductal — I did not know this!). You can also see where scientists are looking, genetically, hormonally and otherwise, in order to shut this shitshow down.

As always, thanks for the read. Enjoy your day, peeps!

Get your geek on – and connect with cancer peeps – at the NW MBC conference

10 Sep

lady scientistBig doins in the world of mets these days. And by mets, I mean metastatic breast cancer, not the baseball team. And by big doins, I mean the upcoming Northwest Metastatic Breast Cancer conference, which is happening Friday and Saturday, September 22 and 23, in Seattle.

This party is being thrown with help from Komen Puget Sound and lots of other orgs. And it’s being held at Amazon Web Services which (for out-of-towners) is in South Lake Union not far from Fred Hutch, the cancer research cancer where I’ve been working these past (nearly) four years. And this thing is going to be the bomb.

Is it weird to be geeking out over a cancer conference? Yes, absolutely. But that’s how it is these days. I’ve gotten sciency, people, which is a pretty strange turn of events considering the bad taste for science my condescending 7th grade teacher Mr. Sargo left in my mouth.

Hmmm … is it too late to switch majors? Does this lab coat make my butt look big? ; )

This is the second annual NW MBC conference and it looks to be even bigger, better and more bad ass than last year’s inaugural event. The force behind it? Dynamic duo Beth Caldwell and Lynda Weatherby, two MBC patient advocates who’ve somehow managed to corral cancer peeps from nearly every MBC advocacy organization in the country to speak at the conference.

And then there are the researchers. There will be a handful of scientists from Fred Hutch; a few folks from Virginia Mason and Swedish, including the onc who treated me (sounds like a movie title, doesn’t it?); people from the Broad Institute/Harvard, birthplace of the Metastatic Breast Cancer Project.  And lots, lots more.

Topics include integrative oncology; inflammation; health disparities; financial toxicity; clinical trials; vaccines; and research, research and more research. There’s even going to a special session on filling in the mets recurrence data that’s currently missing from the SEER Cancer Registry (more on that here).

Breakout sessions will cover mets sites (liver, lung, brain, etc.) and cancer types (triple negative, HER2, etc.). There’s even going to be a session on lobular breast cancer (my particular flavor) with experts from the University of Pittsburgh.

As I always like to say, knowledge is power. Even more powerful? Free knowledge that might save your life — or the life of a friend! And this conference is free, folks. Here’s the full agenda.

Just so you can see what you’re getting into, here’s a link to a piece I wrote last year that talks a bit about the first conference. I’ll be covering it again this year. If you can make it, please come by and say hello (I’ll be the frazzled blonde furiously live tweeting and scribbling notes in a reporter’s notebook).

If you can’t make it, the word on the street is, it will be livestreamed. Check the Komen Puget Sound website and/or FB page for more details on that.

Peace out, peeps. I’m going to go measure my P-values.

What if people treated other cancers like they do breast cancer?

15 Sep

I’ve been recuperating at home the last week or so, healing up after my fourth and FINAL breast reconstruction surgery (just need to “dot the i’s” and I’m done, folks – high five!). Anyway, like any good invalid, I’ve spent most of my time watching Netflix, devouring books and reading social media posts from friends, colleagues and fellow cancer buddies.

I especially liked But Doctor I Hate Pink’s recent call-to-arms, Pinktober, Metastasized, a series of blog posts that takes on a few of the more inane “awareness” campaigns that have popped up so far.

As most women with breast cancer can tell you, the month of October is a huge pink clusterfuck. There are your Boob-A-Thons, your giant bouncing boob races, your Save The Ta-Ta’s wet T-shirt contests (because women who’ve been forced to have mastectomies love nothing more than having healthy normal breasts shoved in their faces). Stores sell everything from pink clogs to pink stun guns with a fraction of the profits going towards yet more “awareness” as opposed to research which could, hello, save women’s LIVES not just their boobs. Even the NFL, which has so clearly demonstrated its love of women in recent days, gets into the act with pink cleats and pom-poms. As I mentioned, a clusterfuck.

Follow the bouncing boob. More importantly, follow the money.

Follow the bouncing boob. More importantly, follow the money.

Particularly annoying are the wrong-headed campaigns encouraging women, including survivors and metavivors (women with metastasized breast cancer who are not exactly “surviving” this crap) to post cryptic and vaguely sexual status updates on Facebook (“I like it on the floor!”), don T-shirts adorned with vapid boob-related slogans or bedazzle their bras (provided they still have them) with lace and sequins, again all in the name of breast cancer awareness.

But Doctor I Hate Pink does a great job of taking on these egregious offenders in her posts (she’s also started a cool new #mycancerisnot4sale social media campaign to fight the pink profiteering). “After five years of being truly, horribly sick, I can tell you that [breast cancer] is not a cute, fun little disease that you can play with or have a party about,” she writes. “Breast Cancer is the most trivialized disease in history … Do they have a tighty whitey decorating party for anal cancer?  Let’s put a little brown glitter around the back end of the underwear, hey? Maybe some red sequins to show one of the signs that cancer lurks in that area? Yeah, let’s tell that cancer story through decoration.”

I love her feistiness and her humor and I especially love her point. You really don’t see other cancers – lung, liver, colon, bladder, prostate, anal, cervical, ovarian, etc. – being trivialized and/or sexualized in the same way that breast cancer has been over the last decade or so (although there is a rather interesting “put your cock in a sock” testicular cancer campaign currently rampaging through the interwebs).

What would it be like if other cancers were treated in the same ridiculous and demeaning fashion that some of these PR geniuses and clueless clods treat breast cancer? Read on to find out (with sincere apologies for those going through colon and testicular cancer). My edits are in italics. The rest is verbatim. As always, looking forward to your thoughts.

NATIONAL BRA (Breast Reconstruction Awareness) DAY promotion letter 

Testicles are so much more than just “the boys” or “gonads.” They’re fabulous. They make us feel sexy, whether we’re in our best outfit, lounging around in our favorite flannel PJs, or just bare butt naked (sic). This fall, we want to spread this sensation of beauty and testicle empowerment to testicular cancer patients and survivors, as well as men nationwide.

Many men who undergo orchidectomy aren’t adequately informed about reconstruction options and reimbursement.  In order to help raise awareness of these available options, we’re celebrating National TRA Day 2014 with a grassroots social media campaign using the hashtag #WHATSUNDERHERE.

Each participant receives a pair of boxer shorts with the #WHATSUNDERHERE hashtag on the front. In addition to the shorts, each kit comes with a set of cards with fun and thought-provoking sayings, such as: “Is Cancer Free,” “Looks Great Naked,” “Will Not Take Cancer Lying Down,” among others.

NATIONAL ‘NO BRA’ DAY – Facebook post from July 2011 

Colons are Fantastic… We all think so. And what better way to express the way we feel than to support a full day of colon freedom?? Humans are magnificent creatures, and so are their colons. Let us spend the day unleashing colons from their colon zoos.

Support breast cancer? Really? Does this hideous disease really need our SUPPORT?

Support breast cancer? Really? Does this hideous disease really need our SUPPORT?

People, free your colons for 24 hours by removing those dreadful (but at times oh-so-helpful) underpants. Our poop chutes should not be hidden! It is time that the world see what we were blessed with. Your colons might be colossal, adorable, miniature, full, jiggly, fancy, sensitive, glistening, bouncy, smooth, tender, still blossoming, rosy, plump, fun, silky, Jello-like, fierce, jolly, nice, naughty, cuddly… But the most used adjectives to describe your colons on this day should be joyous, wild, and spectacular.

Everyone can participate! If you don’t want to free your colon, then your job will be to support everyone else by rocking something brown. It can be a brown tie, brown boxers, brown socks, a brown Colon Cancer Awareness Ribbon, I ♥ Colons Bracelet…. If it is brown, it supports us. (Your support means quite a lot to us…)

**If wearing underpants on this day is absolutely necessary, you can definitely show your support by wearing something brown.**

Yay for colons!