Archive for May, 2011
While I have had fun making fun of all the pink crap that purports to support breast cancer patients, I have avoided direct criticism of the Susan Komen Foundation. Until now.
It’s not just because they are one of the top two most trusted nonprofit brands and I want to stay in my readers’ good graces. I respect you too much to pander like that.
I have hesitated because of people like this:
I don’t know these women. I got their picture off Flickr.
They are completely fabulous though.
I know women who have felt transformed by the Three Day Walks, Komen’s signature event. I cannot overstate their symbolic power. They provide community. They make a natural place for a comeback from treatment or even grief. They are a way of giving cancer the middle finger. The feeling of unity and purpose at these events humbles me.
How can you criticize an organization that makes these experiences possible?
Friends, I have to speak up. While the unity may be 100% real, the purpose has become distorted. I feel that these women and the people who donate to them are being misled. I do not like to see people’s good intentions exploited.
I realize I’m a little late to the Komen critique party. Heck, there’s an entire blog dedicated to Komen oversight. Others have already pointed out how little of Komen’s money goes to research. More egregiously, they have trademarked the phrase For the Cure® and they sue smaller organizations for using it.
“For the Cure” trademarked? Maybe we’d cut them slack if they truly were about curing breast cancer. Instead, we learn that only 2% of their funding focuses on metastatic disease.
Let’s face it. If you don’t deal with metastatic disease, you are not focusing on The Cure. Since 20% of all survivors will get metastatic disease, regardless of stage at diagnosis, there is a 1 in 5 chance that this will become our problem, if it isn’t already. We need cures. Real ones, not just the kind you find on key chains.
The trademarking should have tipped us off. Trademarking is not about science. It’s about profit.
Komen has become a brand to such an extent that the reality of breast cancer has been lost.
A friend recently told me that Komen founder Nancy Brinker would be appearing on HSN. I assumed that meant Health Science Network.
Can you tell I am not a regular patron of the Home Shopping Network?
What was the straw that broke my back?
It’s Nancy’s latest product, Promise Me™ perfume.
My outrage is simple and comes in three parts: linking cancer to a perfume, the weird beauty breast cancer connection, and the misleading use of the money.
1. Many people in chemo, myself included, become incredibly chemically sensitive. I almost passed out when a woman at my gym sprayed perfume in the locker room. I was shaking and it took a half an hour for the episode to pass. The last thing I wanted to be near or around was any kind of fragrance. There is even evidence that fragrance may be carcinogenic — For the Cure® indeed!
2. Why do we have beauty products to raise funds and awareness for breast cancer alone? It is the only form of cancer that demands that we stay beautiful, even as we puke our guts out and lose our hair. Komen perpetuates this ideal.
I call shaved head. Or photoshop. She still has eyebrows.
Couldn’t they have photoshopped her eyebrows?
Breast cancer is the Beautiful Cancer. Can you imagine a brain cancer perfume? How about anal cancer? Why is there not the same dissonance with breast cancer? It’s all cancer, for crying out loud!
3. This “floriental” scented perfume costs $59.00. Of that, how much do you think goes to research? If you said $1.51, you are correct! (Thanks for the math, Uneasy Pink!)
Since Komen spends a minuscule fraction of that on researching metastatic disease, very little of your fifty-nine bucks is going toward a cure.
Hell hath no fury like a nauseous me involuntarily squirted with perfume, Komen. It’s on now.
To the fantastic walkers, I still love you. May I direct you to Susan Love’s Foundation’s Avon Walk? She is a breast oncologist focused on research.
(Yeah, I know. Avon. Beauty. But I still say it’s better…)
In the meantime, my fabulous online family has been coming up with better names for this perfume.
Who says breast cancer patients have no sense of humor?
Tags: advocacy, chemo, coping, courage, daily life, essay, komen, nausea
Posted in Survivorship | 115 Comments »
Yesterday, I ran on a shady paved trail through the park. The 5.8 mile path is a refuge in the heat, which was climbing toward 90˚.
I like running the same route week after week. Partly, I am a creature of habit. Also, running the same trail allows me to monitor my progress. I check in with my body. How fatigued am I? What pace can I go? How do I contend with this hill? How strong do I feel when I’m finished? I note all of these things and feel the runs getting easier, which is good for my confidence.
At the top of a big hill near the halfway point, I felt the fatigue setting in. The heat was draining me and I was sweating profusely.
Running helps me practice patience and compassion with myself, so I don’t tell myself to push on much of the time. I stopped to walk for a couple of minutes. After catching my breath, I felt much stronger and continued on my way.
It was time for a big descent. In the recent past, I have kept my pace steady, even on downhills. I don’t know what has been holding me back –– a fear of the speed, a fear of falling. I just haven’t been up to it.
With my renewed energy, I decided to let myself fly. It was a joy. I also felt hopeful that I might pick up some of the time I lost walking and make a good overall pace for this run.
As I rounded the curve, I saw a woman climbing over a wall separating my path with one of the many unpaved trails in the park.
She looked lost. She was about my age, dressed in running garb.
Pace be damned, I thought, letting go of the time I was making up. I stopped to see if she was okay.
She asked me how to find a certain trail. I told her that I am only familiar with the paved routes.
“We are about one mile from the exit,” I said. “If you want to run with me the rest of the way, I can drive you to your car.”
“Okay,” she smiled. “I think I’ll take you up on it. I’ve been running for about an hour and a half. I promise I don’t have a knife stashed anywhere.”
She continued with me on my flight down the hill. I took one of my earbuds out so I could converse.
“Are you training for anything?” I asked.
“No, I just like to run a lot,” she told me. “Are you?”
“I finished cancer treatment at the end of last year, so I’ve been doing half marathons like mad.”
She was unfazed.
“That’s great. What kind of cancer did you have?”
I told her.
“I had Hodgkins when I was pregnant with my fourth child. She’s 12 now.”
“I knew you were a cancer survivor! You didn’t blink when I told you. Usually people get really quiet and awkward.”
We ran the rest of the way down the hill, chatting about treatment, side-effects, fatigue, and children. I took her to her car, as I promised. She did not have a hidden knife, as she promised.
I realized, once again, what a unique bond survivors share. It’s as if we can enter the middle of a conversation and not have to provide all the explanation that other people require to make sense of our experience.
This is why our online community is so powerful. We are what my fellow blogger Feisty Blue Gecko aptly calls stranger-friends. We often understand each other in ways that our closest intimates cannot.
I hope to cross paths with my new stranger-friend some time soon.
Tags: coping, daily life, fatigue, hope, running, support
Posted in Survivorship | 19 Comments »
I’m sorry I haven’t posted in awhile. My regularly scheduled life has demanded much of me lately. I also have been contending with fatigue. It’s been a bit of a dance — keep on top of life and manage to rest and exercise.
It’s a little scary to have experienced a sense of ascension from the Cancer Pit and then feel it tug me back in. Aside from my own physical symptoms, last week two online friends died. Both were parents of young children. Both were around my age. Sarah had been in remission and faced a recurrence that ultimately killed her.
This is Sarah. She made a promise to herself that she would die with her hair.
Derek wrote about going through the same treatment as an online friend on the same timeline. His friend’s treatment worked, but his did not.
These events renewed my sense of urgency about improving our understanding of cancer –– not just breast cancer, but the ovarian cancer that killed Sarah and the colorectal cancer that killed Derek.
Last week, I also participated in my first clinical trial. I had learned about it through Susan Love’s remarkable project, The Army of Women (AoW). I had a doctor’s appointment anyway. It only involved drawing a few extra tablespoons of blood and a follow-up phone call. The researcher I spoke with said that AoW has made a huge difference in their ability to recruit enough subjects for their study. Across the board, she said, the participants have been eager to help.
I had intended to do another clinical trial at the end of my treatment, but it didn’t work. For that trial, I would take Metformin to prevent a recurrence. Because my tumors were hormone-receptor negative, I am not taking anything like Tamoxifen or Armidex to prevent recurrence. My chance of recurrence is around 20-30%.
My oncologist had explained to me why they were prescribing the diabetes drug to breast cancer survivors. They had done meta-analyses of survival and recurrence rates in breast cancer survivors. Metformin seemed to significantly lower recurrence rates when they looked at populational data, controlling for other factors like weight, age, and fitness. They thing it has to do with cortisol suppression.
I ended up not being able to do the clinical trial because the Metformin shipment got held up in Canada. By the time it arrived, I was no longer qualified because of my date of diagnosis. My doctor offered to prescribe it to me for off-label use.
I hesitated. There are potential gastrointestinal side effects to Metformin. And for those of you who are new to my blog, you may not realize that I am a Side-Effect Queen. No discomfort, however small, seems to pass me by.
Then Sarah and Derek died.
That was it.
I called my doctor and decided I couldn’t bank on my fitness, youth, and good attitude to prevent a recurrence. I felt better about doing something at a molecular level that might interfere with tumor formation.
I spoke with three breast oncologists who thought the Metformin was a good idea. My blogger buddies who went to the National Breast Cancer Coalition conference and reported that the Metformin trial seemed like the most promising thing out there in preventing recurrence.
I needed to make a choice. The consensus was that this seems like a good one.
Because if my cancer comes back, it will be metastatic.
Diarrhea or metastatic cancer?
I’m going to take Door Number 1, Bob.
Let’s hope I have made the right choice.
If you are a woman in the US or Canada, please sign up for the Army of Women. You don’t have to be a cancer survivor. There are a lot of clinical trials out there that just need participation. We need a better understanding of cancer. Knowledge is power.
Tags: changes, clinical trials, coping, fatigue, self-advocacy, survivorship
Posted in Survivorship, Treatment, Wellness | 20 Comments »