Yesterday morning, a comment was left on my May 3rd blog entry. It was left in response to a comment I made on another blog. What follows below is a public apology. And hopefully an explanation that can help heal any wounds that may have been inflicted by words.
I am SO sorry for the pain you feel, SO SORRY that your sister's life was taken by this dread disease, so very sorry if my words caused even the slightest of pain. There are times that words are simply inadequate to express feelings. This is one of those times. I am glad you took the time to come to this blog and share your feelings. If my comment was taken as an attack on Heather rather than an attack on the way I have come to feel about being held up as a "brand" to add to someone's bottom line, I am deeply apologetic.
I am resentful of the billions raised (and wasted) and decades of what amounts to truly meaningless research. If we weren't so accepting of the status quo (breast cancer is a "good cancer" and "early detection is a cure"), perhaps the right research might have been funded. Secondarily, there is a lack of public awareness of how misguided and downright unscrupulous some people (organizations) have become. Slapping a pink ribbon on anything and sending little or no money at ANY charity surely appears to be the rule rather than the exception. Having the recipient charities fund what amounts to stupidity rather than actually use the funds to help wo(men) in need or direct money toward research when research is the only way things will ever change is deplorable.
Yes, we must be careful with our words and using the story of any one individual to bring attention to what I have come to call pinkpocrisy without knowing anything about the individual's life, can be exceptionally hurtful. I would imagine that it was incredibly painful to be blindsided by an article that appears to taint Heather's legacy just as you marked the one year anniversary of her death. To see such an article for the first time, I understand your outrage. I do. I can't say I blame you, either. Heather wasn't anyone's cause. Heather was your sister. Your 27 year old sister who only lived about 14 months after she was diagnosed.
Please know, from the bottom of my heart....those of us who are determined to make lots of noise are doing so in memory of all of those who have been taken from us and in honor of those who are living with metastatic disease. Including Heather. Especially Heather. I am hoping to make a difference, to change the conversation, to see my friends with mets live long lives and die of ANYTHING except breast cancer.
I have a "family cluster" of disease and a daughter who is the driving force behind my efforts. The fact that my mom and I had identical treatment despite the nineteen year gap between our diagnoses drives me. My mom's FIRST round of breast cancer was in 1987. Heather was likely just a baby. Her second bout of breast cancer was after I completed my primary treatment. Heather was diagnosed around the same time as my younger sister.
Seeing a journalist say "everyone knows breast cancer, if detected early enough, is curable," drives me because not only is that an inaccurate statement, in some ways it lays blame at the feet of those like Heather, whose disease progressed quickly and aggressively. Seeing a journalist say "in the battle against cancer one is a survivor if you survive the first night after being told you have the disease" drives me as that too is an inaccurate statement. Those who are metastatic patients do not refer to themselves as survivors. They are terminal cancer patients. The vast majority of them will not survive the disease. The vast majority of them will die of breast cancer.
The misrepresentation of the words survive and cure drive me to raise a deeper awareness and understanding. Words like cure, prevent, early detection guarantee, survivor (and others) have no place in the same sentence as breast cancer YET. The sea of pink is, in my most humble and delicately stated opinion, our biggest obstacle toward meaningful change. Like you are, and like Heather was, intimately aware of the ways in which this disease steals lives, the rest of the world must be made aware. Heather was not a pink ribbon. Heather was a BEAUTIFUL young woman with a bright future whose life was stolen. There are few people in the world who have stood in your shoes, Coli. You remained at your sister's side and saw first hand what most in this world refuse to acknowledge.
So did Anthony Moro. It was his wife, Rachel, who left the first comment on the blog where Heather's story appeared. Her blog, The Cancer Culture Chronicles is filled with information about the misuse of funds, meaningless research. Rachel's comments are scattered all over this blog and they are my most cherished comments. She kicked and screamed about the pinkpocrisy because she knew Heather's life should not end at the tender age of 27. Rachel died in February. Rachel's life should not have ended at the age of 41. That's far too young, too. My friend died just days before Rachel. She was 39. Her daughter is 8.
Again, I am deeply and profoundly sorry if my words upset you in even the slightest way. It most certainly was not my intent. My intent is to make sure all the Heathers and Rachels of the world are not forgotten. My intent is to stand shoulder to shoulder with my dear friends who are living with metastatic disease. I want them around for a long, long time. My intent is to do everything I can to protect my daughter. I've said this a number of times throughout this blog. I don't ever want to be in my mom's shoes. She stood beside me when the doctor told me I had cancer.
I hope my words here have brought some measure of comfort and perhaps a slightly clearer understanding that my actions and my motivation come from a place of pure love. And dogged determination.
In my thoughts,