Monday, October 3, 2011

That Damn Pink Ribbon

This is adapted from part of a blog I wrote for Team15Percent that I can't bring myself to publish there.  I thought maybe putting it somewhere would help.

I’ll never forget the conversation I had with my friend Taylor on April 1st. It was 2 days before her 23rd birthday. At that point, she'd been in the hospital 2 solid months after a surgery she was given a 15% chance of surviving. I remember where I was sitting, and how scared I was to call. I had been told it was bad news, and that I needed to hear it from her. At this point, Taylor was at the lowest of low points, with no hope she was getting out any time soon. I don’t remember the details of exactly what they had found where or why they suddenly realized they needed to do this biopsy, and to this day I don’t know how they had missed it up until this point. But the results that came back weren’t exactly a surprise, yet somehow couldn’t have been more shocking: Stage 4 Inflammatory Breast Cancer. The rarest, most deadly type of breast cancer.

I was with Taylor the night her grandmother died of IBC, a year ago last month. I knew how close they were… I knew how Taylor had been the one to go with her to treatments, how she’d fly across the country to be with her. How her grandma would come to Oklahoma and Taylor would drive her to Houston for treatment. She’d written me a beautiful letter last October during my Susan G. Komen 3-Day Walk about her grandmother and aunt’s journey, the clinical trials and medical advancements that had extended their lives. Anyone who knows Taylor knows that she’s crazy smart and educates herself about every detail, every statistic, every treatment option.

There’s part of this conversation that just haunts me to this day. She was talking about her grandma and her aunt. How she’d gone to so many doctor’s appointments with them, how she’d seen how this disease works. Taylor herself had two other types of Stage 4 cancer... she of all people should have been desensitized to the shock of it all by now. And I will never forget hearing her say “The minute that doctor told me, it was as if I had never heard of breast cancer before in my life.” Of all diseases… of all cancers… why THIS one? Shortly after that it was “I’m not wearing some damn pink ribbon.”

I can’t begin to imagine the overwhelming rush of emotions Taylor was going through that day… how to even wrap your head around surviving 2 cancers and being told you have a third, and it’s one that has already taken 2 members of your family. At various points in the conversation she was calm at others she was in hysterics. The emotion I remember most was her anger. She was SO mad.

“It’s completely ridiculous that it’s 2011 and people are still dying from this disease.” She’s SO right. Billions of dollars invested in research, the smartest people in the world are working on it, and yet still, cancer is winning.

There’s so much more I could say about the extreme highs and lows of the past few months. The details aren’t pretty. The things she has endured are gross and disgusting, they are humiliating and they are debilitating. My Facebook friends have learned more than they ever wanted to know about this disease through Taylor’s posts to my wall. Sometimes she’d get in a mood to talk, usually in the early hours of the morning, and she’d share the anguish of her day, which was always sprinkled with this insane snarky humor.

More than anything as we’d talk through how to tell her friends about her diagnosis, she’d say “I need to find a way to tell people what is going on. I want people to know how shitty this disease is. I want them to know that I survived anaplastic carcinoma and I survived lymphoma, but breast cancer is going to kill me. And people need to get off their asses and do something about it.”

Inflammatory Breast Cancer is rare.  To the point where she called our Nashville Komen affilliate to ask if there were any doctors in the area who specialized in it and it was like she was asking directions to the moon. The best they could offer her was "Ooooh, that's the really bad kind, right?  No one survives that."  M.D. Anderson has the only IBC clinic in the country, and she called them to consult on her case.  Even there they made her repeat her birthday back... and couldn't believe how young she was.  There's much more to this story - and anger, the frustration, her desperate will to live.

For now – I’ll share this perspective: Towards the end of April, she was given 10 weeks to live. She was suffering SO badly as the IBC spread rapidly throughout her body. I remember at the time telling her I thought 10 weeks sounded like an incredibly cruel amount of time to have to continue suffering as much as she was. One Thursday night in May, at 9 o’clock at night, she called to tell me goodbye. They had called in hospice, and she thought the end was coming soon. In July, she watched her 10th week go by on the calendar. And Saturday marked SIX MONTHS since her diagnosis.

When I signed up for my 2nd 3-Day, I really didn't think Taylor would still be here on earth by the time the event rolled around. On our longest training walk days, she'd text me encouragement, making funny jokes about doing laps around her hospital floor.  Several weeks ago, when things were on an upswing, she told me she planned to be in Atlanta to cheer for me, and had recruited her family members that live in the area to come out too. Instead, she's now fighting for her life in a hospital far away, enduring around the clock intravenous chemo that is kicking her ass, and robbing her of any quality of life for whatever days she has left.  She's so alone... just one lone trooper in an army of pink warriors.

For her, and for so many like her, we walk.  So that some day, NO ONE will ever again have to wear that damn pink ribbon.

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