Giving Breast Cancer Pink the Middle Finger

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Susan Rahn Stickit2Stage4 breast cancer

[by Susan Ashline]

In the thick of Breast Cancer Awareness Month, one woman living with the disease is engaged in hand-to-keyboard combat against the color pink.

I remember when Susan Rahn followed me on Twitter. As with all my new Twitter follows, I checked to make sure her account wasn’t spam, my only barrier to following back. It wasn’t.

But I didn’t want to follow her back.

Her cover photo was skeleton hands with the middle fingers sticking up, pink ribbons wrapped around the bones. Her Twitter handle: @Stickit2Stage4. Susan had metastatic breast cancer, which is cancer that has spread to other organs. And I saw death. My instinct was to distance myself. I wondered, briefly, how I would feel if I’d gotten to know her and she died. I didn’t want to risk feeling hurt. Twitter suggests followers based on who you follow, and I anticipated an onslaught of follows from women who were waging a futile fight for their lives. I foresaw my breath squeezed out by a digital feed full of doom. And most of Susan’s tweets were about metastatic breast cancer. I thought – I have nothing to offer her.

Eventually – hesitatingly – I did follow her back.

Still, I ignored her.

In August, I found myself at the New York State Fair facing a wall of women captured in photo frames with pink matte board, smiling and lively. But most were no longer alive – they were dead. It was a breast cancer victim/survivor display that I stared at unflinchingly, reading the women’s profiles and silently wishing each back to life.

A week later, I saw Susan’s tweet: “Wearing a color does nothing. Try REAL actions. Make a meal, clean – that is support.”Susan Rahn Twiitter breast cancer awareness tweet

That made sense. I could do that. I knew how to clean.

I messaged Susan through Twitter, offering to clean. She replied – swiftly – with a rant against what she called “the pinkification” of breast cancer. “Who does that help?” she wrote. “So I tweet and call out the BS for what it is, in the hopes that I can maybe change the landscape of the public’s perception of breast cancer.” She ended with, “I deeply appreciate your offer. I promise to let you know if I do need help. I’m sure my time is coming.”

The corners of my mouth instantly mirrored the frown-face emoji that punctuated her last sentence.

I had been under the impression a portion of proceeds from sales of pink items went to breast cancer research, and I told her so.

She said that was a myth, “And if money does happen to go to research, less than 2% goes to fund research for metastatic breast cancer; the cancer that kills.” She wrote that 113 women die every day from breast cancer; a projected 40,450 men and women in the U.S. this year. “Those are the same numbers as the height of the AIDS epidemic, but no one puts any urgency on breast cancer research because they focus on awareness.”

I offered to write about Susan’s war on the pinkification of breast cancer. I could do that. I knew how to write.

No sooner did she accept my offer, that I got a message from Jeff Rahn, another of my Twitter followers: “As you probably picked up on, Susan is very passionate about the various ‘pink scams’ out there and is trying so hard to get actual research instead of awareness campaigns. We are all aware.”

She was his wife, he said, and a great mom and step-mom. And he thanked me for reaching out to her. “Just acknowledging a terminally ill person means more than you can imagine. So often they are forgotten.”

When I called Susan for the interview, I confessed my reluctance to follow her on Twitter. I wondered aloud whether my reaction to shut her out was not uncommon, and perhaps the reason her message, of the need for more emphasis on research, wasn’t reaching the general population.

“Which is why I’m so loud and obnoxious,” said Susan, acknowledging my reaction wasn’t a surprise.  Social media users labeled her angry and bitter, she said. “They think I’m angry and bitter because of my diagnosis. But ya know what? Anger and bitterness gets sh*t done.”

Susan said she feels awareness campaigns are partly to blame for the instinct to block out those who are terminal. “The message has been that breast cancer is a treatable and curable disease. If you catch it early, like if you catch a cold, you deal with the symptoms, treat it and go on with your life. But that’s not the case, because 6-10% of women – like me – get diagnosed with stage four from day one. And you don’t necessarily have to have any prior family history.”

Maybe I’d shut the door on Susan’s Twitter page because she represented what I feared – that she could be me.

Lingering rib pain led to Susan’s diagnosis of stage four breast cancer just months after getting a clean read from a routine mammogram. She was a newlywed, not quite a year into her second marriage. She had one son, her only biological child. Genetic testing turned up no markers for breast cancer. She was 43 years old.

She was told she had months to live. It was August 2013.

Susan continues to fight for her life – and the lives of others – by advocating for metastatic breast cancer research. She is the editor of a newly-formed digital magazine, The Underbelly: Illuminating Breast Cancer’s Darker Side (TheUnderbelly.org), which launched an October Twitter campaign (#WhyIsThisPink) to make the consumer aware that many merchants collecting money from selling pink items are simply lining their own pockets.

“It’s okay if something’s pink, as long as the money is going to the right place,” said Susan, who hopes The Underbelly will draw an audience well beyond Breast Cancer Awareness Month. “We want to bring the ugliness and the things that people don’t want to talk about into the light. It’s not all pink and fun, and it’s not a sorority. The narrative needs to change.”

Author’s note: I’ve since learned a lot about breast cancer pink. Susan’s opinion doesn’t stand alone – far from it. Voices can be heard all over the internet calling for an end to the “pink” campaign and a focus on dollars for research to find a cure. The pink campaign was successful in raising awareness. Now, it’s time to move it forward. #BreastCancerRealityCheck

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‘Twas a Flu-Filled Nightmare

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Originally published in the Democrat and Chronicle.

Sick on Christmas Eve
‘Twas a nightmare before Christmas when all through the house, my 5-year-old was vomiting, some flung on my blouse.

Reed couldn’t get nestled all snug in his bed, so he lay near the toilet while mom stroked his head.

The bucket was placed on the floor with care, too late for projectile that hit Teddy Bear.

And I holding Spray Nine, removing its cap, wouldn’t dream of settling down and taking a nap.

When from under his covers there arose such a clatter, my blessed boy’s cries had me worry, “What’s the matter?”

Away to his side, I flew like a flash, rubbed his back, kissed his face, while is complexion turned ash.

Dwelling on reindeer and new fallen snow, Reed feared his sickness would make Santa a no-show.

When what to our wondering minds it would appear – a hiatus to headache and upchuck was near.

More rapid than lightning my efforts became, I needed some meds but – what was the name?

To the top of the medicine cabinet – Tylenol! “Now dash away! Dash away! Fever and all!”

So to the TV for Christmas movies he flew, but I ordered him to bed – rest was what he should do.

Dressed in Sponge Bob jammies from his head to his foot, Reed’s clothes were all covered with – well, you know what.

A bundle of toys he hoped for in this shack, and I dreaded I’d catch flu before I could make Santa’s snack.

Cookie dough I reached for up on the shelf, and that’s when it hit me – I wasn’t feeling myself.

I spoke not a word, but went straight to work, disinfecting surfaces where germs tend to lurk.

And laying a tissue aside of his nose and giving a nod, made Reed take several blows.

He sprang back to bed at the command of my whistle, awoke 4 a.m., asked, “Santa bring my launcher with missile?”

But I heard him exclaim, ‘ere he opened his gifts wrapped tight, “You were right, I needed sleep. I didn’t feel good last night.”

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Daughter, Mom Bond Over Race

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Originally published in the Democrat and Chronicle. 

Warrior Dash Windham New York
We might be cool, or just crazy.

I roped my 16-year-old daughter into joining me on an extreme event described as “3.2 hellish miles” of jumping over fire walls, climbing on cargo nets, scrambling under barbed wire and through pitch black pipes filled with mud, among other madness.

And I’m actually paying money to do it.

Not to suffer alone, I rallied friends, trying to get other common sense challenged athletes to join us.

The event – and training for it – will be great mother and daughter bonding. But how do we train for walking planks over a gulley and scaling slate walls? The first part of the Warrior Dash is running straight up a ski slope. I set the treadmill incline to the highest position and began to run. That lasted about two minutes before I lost balance and nearly fell off.

A friend offered to whip a rope at my feet to simulate the part of the race that involves speed stepping over hundreds of tires.

Perhaps I should follow training tips straight from the event’s website: “Find the dirtiest pond in your neighborhood and snorkel in it – in your slippers, without goggles.”

But more than likely you’ll find me running up and down Cobbs Hill with attached ankle weights – red-faced and panting.

My 6-year-old son saw video of the race and is pleading with us not to do it, afraid we’ll die by flames. Most people don’t even believe we signed up.

How can I get naysayers to understand the feeling of elation when I cross the finish line and course officials place a warrior helmet on my head (it’s really just a fuzzy Viking hat; but I’m all for the symbolism)?

It’ll be fun! Or, just plain foolish.

Besides, where else can you get a complimentary post-race shower in the form of a hose down by fire fighters? Or feelings of camaraderie associated with being surrounded by fellow mud covered martyrs eating turkey legs, dressed in clown suits and throwing hatchets into tree stumps?

We are – after all – warriors!

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