Thursday, January 12, 2012

My response to Outside Magazine's article "It's Not About the Lab Rats"

Mr. Gifford,

I read this article just 1/2 hour after returning from my oncologist's & plastic surgeon's offices reviewing the next steps of my post-chemotherapy treatment. My heart is racing, I have tears in my eyes and an adrenaline surge that could get me up the Alpes d'Huez, despite having endured 5 months of chemo and off the bike. A chemotherapy treatment that was scheduled around my participation at the LIVESTRONG Challenge in October. You see, I've been a LIVESTRONG Leader and fundraiser for going on 3 years, now. Long before my diagnosis in July. Ironic, I know, that I'd be such an ardent advocate when I hadn't fought cancer myself. But I was a new cyclist, I had a mentor who was diagnosed a second time, just as Lance was launching his comeback, so I got involved.

And then I met the people in LIVESTRONG. Not just the staff, but the people who were moved by LIVESTRONG. The ones who had survived cancer. And the ones who supported those whose time ran out in their fight and were carried on the backs of LIVESTRONG Leaders, the staff and others affiliated with the organization. It was clear that, yes, as a marketing professional, I recognize that the organization is incredibly savvy, creating buzzwords and catch phrases that stick. But there is a reason they stick. Because they have meaning to us.

Do you want to know why every dollar donated to LIVESTRONG is so important, as opposed to pure clinical research? And why your arrogant article is worth nothing more than bird cage lining to a survivor? Of course, cancer needs to be eradicated, and the only way that the disease itself will disappear is through medical advances. But the effects of cancer on the people who have it, who have fought it, and those that surround that individual can never be erased by a new chemotherapy, a new surgical procedure, or a berry in the rainforest. The only way that kind of healing can happen is empowerment. Hope. A sense that there is something one can do when you're not in a research lab. When all you have are two legs, a heart, and the desire to do something.

Awareness. If it weren't for their awareness campaigns, I would have never gotten that mammogram in June. You see, I'm well below the 40-line. It would have been a few years before I had a routine mammogram. But it was reminders about taking care of myself, early detection etc, that LIVESTRONG promoted that made me, as a LIVESTRONG Leader, feel obligated to take the opportunity to have a free mammogram when the office park where I work held a health fair. Had it not been for LIVESTRONG's awareness campaigns, I wouldn't have done it. And the very tiny, but highly aggressive invasive breast cancer that was set so deeply in my breast, that no manual or routine breast exam would have detected until it was dangerously too late, would have never been detected in time for my relatively "simple" treatment. A treatment which included a double mastectomy (as I also discovered I had the BRCA II genetic mutation), a 2-week stay in the hospital with an infection and another surgery, 5 months of chemotherapy, and now, two more reconstructive surgeries and 5 years of hormone treatment.

That's where LIVESTRONG plays, in my opinion, the most valuable part in the fight against cancer. Lance never said, "I'm going to cure cancer." Find me one pamphlet that LIVESTRONG has issued that says, "Our mission is to find the cure for cancer." But it does say, and it does achieve, that it will give the cancer fighter, and those around them, the support, navigation, and motivation to find a reason in themselves to survive.

There is no doubt in my mind that if it weren't for EVERYTHING that LIVESTRONG does, from the silicone wristband I wore throughout every surgery, and gave very clear instruction to all nurses and techs that over my dead body were they to remove that band from my wrist while I was unconscious, that reminded me to be strong throughout this hellacious experience, to a Tweet from Lance and others who have been through this the day after my double mastectomy, that I would not have been able to come through this fight sane, hopeful, and with the tenacity to live on beyond cancer.

How DARE you write this, as though LIVESTRONG were nothing more than a whimsical revenue stream for a selfish man? Mr. Gifford, if you had seen the smiles on my children's faces in October when we met Lance, smiles like I hadn't seen on their faces since before I told them I had cancer in July, you wouldn't be questioning the work that LIVESTRONG does. Lance and the organization promises hope, drive, fight, and survivorship. And they deliver on that promise. My 13 year-old son, who has been through hell and back, rode 90 miles in October. Do you know why? Because, after seeing so many people fighting so hard throughout the Challenge, who had been through so much, and knowing how badly I wanted to ride beyond the 10 mile mark but couldn't, he explained, "I rode the 90 miles for my mom because she can't."

My 10-year old daughter was scared every day that cancer was going to kill me, despite reassurances from doctors, friends, family and me. It wasn't until she met Lance, she spoke with the staff at LIVESTRONG, who treated her like gold, and saw all those other mommies who had breast cancer, too, ride through the Yellow Mile and collect their yellow roses, that she realized I wasn't going to die, and that I'd be riding my bike, and living and loving life just like before. And that she didn't have to worry that I was going to die. That weight on her shoulders was too much, but it was LIVESTRONG that helped her lift that off of her shoulders and see how strong she, and I, were and that we'd make it through this.

Komen, by the way, whom you laud in the article, did NOTHING for us. I've long been skeptical of their "pinking" tactics, but when I was diagnosed, I decided to let bygones be bygones and reach out to my local office to see what support they might have, programs, etc. I called, left messages, emailed repeatedly. What was the response? They turned a blind eye to me when I reached out to them, looking for help, advice, and hope. All I got was a barrage of emails asking me to donate to them.

I pray that you never have to face this disease head on, personally. But if you do, try it without Lance,   LIVESTRONG or the programs and materials that they provide by your side for just one day and see how well you do. I guarantee you that not long after that day, you'll be wearing yellow silicone on your wrist soon enough. And, hopefully, publishing a retraction and an apology to those of us who feel so incredibly grateful for LIVESTRONG and to the 28 million living with cancer today that Lance and the good people at the LAF work so hard for every day.

- Rica Mendes
South Salem, NY

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I'm all about free speech, etc, but I have to ask that comments are respectful of other readers, the fact that I, and many of us who follow this blog, support LIVESTRONG, and that you reserve Lance or LIVESTRONG bashing for another forum. As of right now, I'm still allowing Anonymous postings, however, that may not be the case in the future. Thanks!