Breast Cancer awareness and education programs have always pissed me off. Fellow blogger Anna Rachnel's "What Do You Want?" post explains why better than I ever could.
We love you, Anna!
Wednesday, March 23, 2011
Tuesday, January 25, 2011
Komen Rots...
Been writing that a lot lately - mostly in response to other folks' links about Susan G. Komen for the cure (that's their official name) and their battle to trademark the "for the cure" part of their moniker. (read more about that here). Seems to me like they've totally lost focus about what the fight to eradicate breast cancer is all about.
For the record, I've never been a big fan of Komen. I applaud them for bringing breast cancer to the top of the cancer pile, but it doesn't end with awareness and pink ribbons. They raise gobs of money via their races, walks and product donations, but still, 40,000 women died last year from breast cancer. Each October, it gets harder and harder to walk through the store without getting pretty ticked off about all the pink ribbons on things like cookies, batteries, pens and clothing. Companies, it seems, have figured out that if they slap a pink ribbon on their label and mention in teeny five-point type that a "portion" of their proceeds from the product's sale will go to Komen, they will make a mint. They make a million, donate $10K to Komen who lumps it into their generic "research and education" pile and no one is the wiser, right?
But what the heck research is Komen funding? Treatment for women who have been diagnosed or ways to end BC forever? Both are important, but they are two totally different things. Spend more funding dollars on research for the cure and nobody would even need treatment.
Blogger Anna Rachnel breaks down how the money is spent in her recent "Komen by the Numbers" post. A former public accountant before being diagnosed with metastatic breast cancer, she crunches the numbers and gives a very clear picture on how little of Komen's funds have actually ended up in that "research" pile since the organization was founded in 1982. Shocking, to say the least, but not surprising.
My fear has always been that Komen would become THE face of BC fund-raising and other organizations like the National Breast Cancer Coalition, the American Cancer Society and the National Cancer Institute would get pushed aside while their donations get smaller and smaller. If Komen's trademark attempts are successful, I could totally see that happening.
Know that there are lots of survivors, relatives of survivors and even relatives of lost warriors who are not at all happy with how you do what you do, Komen. Know that we're watching you and blogging about your shenanigans as well. You really ought to be ashamed of what you're doing, but I suspect you aren't.
In that case, you really do rot.
For the record, I've never been a big fan of Komen. I applaud them for bringing breast cancer to the top of the cancer pile, but it doesn't end with awareness and pink ribbons. They raise gobs of money via their races, walks and product donations, but still, 40,000 women died last year from breast cancer. Each October, it gets harder and harder to walk through the store without getting pretty ticked off about all the pink ribbons on things like cookies, batteries, pens and clothing. Companies, it seems, have figured out that if they slap a pink ribbon on their label and mention in teeny five-point type that a "portion" of their proceeds from the product's sale will go to Komen, they will make a mint. They make a million, donate $10K to Komen who lumps it into their generic "research and education" pile and no one is the wiser, right?
But what the heck research is Komen funding? Treatment for women who have been diagnosed or ways to end BC forever? Both are important, but they are two totally different things. Spend more funding dollars on research for the cure and nobody would even need treatment.
Blogger Anna Rachnel breaks down how the money is spent in her recent "Komen by the Numbers" post. A former public accountant before being diagnosed with metastatic breast cancer, she crunches the numbers and gives a very clear picture on how little of Komen's funds have actually ended up in that "research" pile since the organization was founded in 1982. Shocking, to say the least, but not surprising.
My fear has always been that Komen would become THE face of BC fund-raising and other organizations like the National Breast Cancer Coalition, the American Cancer Society and the National Cancer Institute would get pushed aside while their donations get smaller and smaller. If Komen's trademark attempts are successful, I could totally see that happening.
Know that there are lots of survivors, relatives of survivors and even relatives of lost warriors who are not at all happy with how you do what you do, Komen. Know that we're watching you and blogging about your shenanigans as well. You really ought to be ashamed of what you're doing, but I suspect you aren't.
In that case, you really do rot.
Wednesday, December 29, 2010
On My Christmas Wish-list for 2011
Finally - someone has the nerve and knowledge to tell the truth about the pink-washing of America that goes on every October. Hats off to sociologist Gayle A. Sulik for her new book "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." I want this book! Really wish I could have gotten it this year for Christmas, though...
I found out about the book from another survivor's Facebook post about a book review that appeared on Slate.com. After you read the review, take a look at the comments below it that do everything from complain that breast cancer gets too much attention (compared to other cancers) to placing the blame for getting the disease smack on the laps of survivors. Sickening, really...
But I do agree with Sulik that we need to do a better job holding companies that make shit piles of money on the business of "racing for the cure" much more accountable for how they spend what they raise. To me, giving a CEO a $459K+ salary wastes too much of what is supposed to be for research (cough, cough, Komen). My son and I lived on 1/12 of that the year I was diagnosed while paying for my own health insurance (I was self-employed), treatment co-pays (like radiation which was $100 a week for six weeks) and hospital and doctor payments following surgery, so, yes, I think that is too much money to be giving a CEO of a non-profit agency that is supposed to be about raising cash to cure this stupid disease. But, that's just me...
The Fear That Just Won't Go Away...
For a few days now, I've had a nagging pain in my rib. Not only is it on the radiated side, but it is right where my bra tucks into my body under my right breast. Anything that touches that spot causes a dull ache, but it is also the same spot on my rib that has hurt off and on since radiation some almost six years ago.
OK - so I know the rules about "new" pains for cancer survivors: 1) call your doc if it lasts constantly for two weeks and 2) that cancer usually doesn't hurt, so if pain is involved, don't panic. Sounds logical and all, but logic tends to go out the window when the mind starts wandering in the middle of the night.
Of course I'm thinking "recurrence" - who wouldn't? I know it's only been two days, but still. So I worried and fretted and even thought about what chemo and surgery options I might have. It was even worse than scanxiety (that naggingly long time between blood-work, scans or other tests and getting the results). Sigh...
And why must this stuff always happen in the middle of the night or over holiday weekends? It was all I could do to not reach for my phone and log onto WebMD. At 3A.M. While holding my side. And planning my memorial service.
But I did stay in bed. I also grabbed the heating pad (which is always plugged in at the side of the bed due to aches, bumps and bruises from karate) and turned it on. The heat felt good, the pain went away and all was right with the world again. And it will be until the next nagging pain, I'm sure...
Cancer sucks, BTW...
OK - so I know the rules about "new" pains for cancer survivors: 1) call your doc if it lasts constantly for two weeks and 2) that cancer usually doesn't hurt, so if pain is involved, don't panic. Sounds logical and all, but logic tends to go out the window when the mind starts wandering in the middle of the night.
Of course I'm thinking "recurrence" - who wouldn't? I know it's only been two days, but still. So I worried and fretted and even thought about what chemo and surgery options I might have. It was even worse than scanxiety (that naggingly long time between blood-work, scans or other tests and getting the results). Sigh...
And why must this stuff always happen in the middle of the night or over holiday weekends? It was all I could do to not reach for my phone and log onto WebMD. At 3A.M. While holding my side. And planning my memorial service.
But I did stay in bed. I also grabbed the heating pad (which is always plugged in at the side of the bed due to aches, bumps and bruises from karate) and turned it on. The heat felt good, the pain went away and all was right with the world again. And it will be until the next nagging pain, I'm sure...
Cancer sucks, BTW...
Sunday, June 20, 2010
The Oncologist Visit That Wasn't
My oncologist is a breast cancer survivor as well. When I met her for the first office visit, she was sporting a wig and a lymphydema sleeve. As much as I like her, she does something no other onc I know does: insists on regular follow-up visits every three months well past the one and five year NED (no evidence of disease) marks. Other oncs drop to six month visits after a year then once a year after two NED years.
OK, so cancer isn't part of my daily thought process anymore, but every three months I hafta make an appointment, have blood drawn, weight taken and lymph nodes felt. The only other tests she's ordered is a bone density scan (and that was two years ago), so it isn't even a case of "scan-xiety" (the seemingly long amount of time between having a test done and getting the results). I just hate going to see her on principle alone.
I missed the last visit in April because I had something to do for work, I think. I was supposed to call the next week to reschedule, but I never did. Might as well wait until July and schedule it then, but I don't even want to do that. It's self-defeating and stupid, but, what can I say? I just don't wanna go!
Yep - that's me in the corner frowning and pouting, can't ya tell?
OK, so cancer isn't part of my daily thought process anymore, but every three months I hafta make an appointment, have blood drawn, weight taken and lymph nodes felt. The only other tests she's ordered is a bone density scan (and that was two years ago), so it isn't even a case of "scan-xiety" (the seemingly long amount of time between having a test done and getting the results). I just hate going to see her on principle alone.
I missed the last visit in April because I had something to do for work, I think. I was supposed to call the next week to reschedule, but I never did. Might as well wait until July and schedule it then, but I don't even want to do that. It's self-defeating and stupid, but, what can I say? I just don't wanna go!
Yep - that's me in the corner frowning and pouting, can't ya tell?
Thursday, December 31, 2009
2009: A Recap
In the last 12 months, I've lost four friends to breast cancer. Amazing women all, their deaths weren't really shocking as all were diagnosed Stage IV.
My diagnosis was Stage II, primarily based on the size of the tumor (about five centimeters or two inches). Not needing chemotherapy, my prognosis was good and I've been NED (No Evidence of Disease) since 2004. And as amazing as that sounds, it does nothing to alleviate the fear of someday being diagnosed Stage IV myself.
In many ways, having had cancer has made me extremely careful. Always into healthy eating and fitness, I've been even more careful about what I put into and on my body in the last five years. Still have some difficulty eating five fruits and veggies a day, but I strive for it.
But in many more ways, being a cancer survivor has made me reckless in ways that have shocked me. Whether it is texting or talking on the phone while driving too fast or throwing caution to the wind with my finances, it's almost like somewhere in the back of my mind is what I call a "live for today because it could come back tomorrow" mentality. That's the lasting legacy that cancer leaves in its wake. Although it sometimes takes a back seat to the more pressing issues of work, family and that nagging need to buy groceries, it's always there hovering around and floating through the transom of my mind - and it totally sucks...
Please let this be the year where major steps are made towards finding a cure...
My diagnosis was Stage II, primarily based on the size of the tumor (about five centimeters or two inches). Not needing chemotherapy, my prognosis was good and I've been NED (No Evidence of Disease) since 2004. And as amazing as that sounds, it does nothing to alleviate the fear of someday being diagnosed Stage IV myself.
In many ways, having had cancer has made me extremely careful. Always into healthy eating and fitness, I've been even more careful about what I put into and on my body in the last five years. Still have some difficulty eating five fruits and veggies a day, but I strive for it.
But in many more ways, being a cancer survivor has made me reckless in ways that have shocked me. Whether it is texting or talking on the phone while driving too fast or throwing caution to the wind with my finances, it's almost like somewhere in the back of my mind is what I call a "live for today because it could come back tomorrow" mentality. That's the lasting legacy that cancer leaves in its wake. Although it sometimes takes a back seat to the more pressing issues of work, family and that nagging need to buy groceries, it's always there hovering around and floating through the transom of my mind - and it totally sucks...
Please let this be the year where major steps are made towards finding a cure...
Monday, December 28, 2009
The Journey Continues
Five years ago yesterday, I was recovering from a re-excision to get closer margins after my bilateral. Three years ago yesterday, I was sitting in the waiting room of a NYC reconstruction surgeon before what turned out to be the worst consult I'd ever had. Today I was commenting to a friend about how, although I'm happy to still be among the land of the living, the scars on my chest are a constant reminder that this has been a helluva trip.
Cancer isn't something I think about 24-7 anymore, but still I've lost three friends in the past few months alone to this disease. As I type this, another is struggling to stay in the fight. So, yeah, it's not so totally all-consuming, but it's on my mind.
The reality is that lots has happened in the last five years. I survived the diagnosis, the treatment, reconstruction and all the craptacular stuff that came as a result. Feels good that I've been able to look cancer square in the eye and flip it the bird, so to speak, but another battle may be in the cards for me, who knows. That's the thing about this stupid disease, you just never know...
So, I wish this path was not one I'd hafta be on, but it is. Please continue to keep the breast cancer and other cancer survivors you know in prayer. The road can be a rocky one at times...
Cancer isn't something I think about 24-7 anymore, but still I've lost three friends in the past few months alone to this disease. As I type this, another is struggling to stay in the fight. So, yeah, it's not so totally all-consuming, but it's on my mind.
The reality is that lots has happened in the last five years. I survived the diagnosis, the treatment, reconstruction and all the craptacular stuff that came as a result. Feels good that I've been able to look cancer square in the eye and flip it the bird, so to speak, but another battle may be in the cards for me, who knows. That's the thing about this stupid disease, you just never know...
So, I wish this path was not one I'd hafta be on, but it is. Please continue to keep the breast cancer and other cancer survivors you know in prayer. The road can be a rocky one at times...
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