Cures and treatment

The other day, I wrote about the argument that my neighbors were having about prevention vs. cure. Quite frankly, I think we need to have both at present because we aren't moving ahead on either front in very swift time. At least that's how it feels to me.

For a long time, I have supported the Susan G. Komen Foundation. When I lived in Connecticut, I ran or walked in every race except for the first year they held it. I raised as much money as I could because I believed in the work that they did.

One of the things that the Komen Foundation does is keeps a significant portion of the money raised in the community, in the community. Much of it goes to provide free mammograms for those who can't afford it. The organization also works hard to educate and serve women in groups who are largely missed, or have higher mortality rates. Breast cancer, for a variety of reasons, is often diagnosed late in the game among African Americans and Latinas and the Komen Foundation is recruiting women from these groups to speak to their "sisters" and help them understand that cancer, if detected early, can be cured, or at least isn't a death sentence.

Currently, the Komen Foundation is working on a petition for elected officials to sign a Breast Cancer Bill of Rights. It is as follows:

Breast Cancer Bill of Rights

Every woman deserves access to timely and affordable high-quality breast health care but not every woman has it. As a breast cancer advocate, I pledge to support the Breast Cancer Bill of Rights and its ten tenets:

1. EARLY DETECTION: Every woman has a right to access breast cancer screening tools that may save her life.
   
2. FINANCIAL STABILITY: Women who are diagnosed with breast cancer have a right to fight the disease without fear of bankruptcy.
   
3. ACCESS: Breast cancer patients and survivors have a right to health coverage.
   
4. TIMELY CARE: Every woman who has an abnormal mammogram has a right to a diagnosis and treatment, if needed, without delay.
   
5. HIGH QUALITY: Every woman has a right to high quality care, no matter where she seeks medical services.
   
6. STRONG SAFETY NET: Uninsured women have a right to a strong breast health care safety net.
   
7. RECONSTRUCTION: Breast cancer survivors have a right to insurance coverage for full mastectomy care, including reconstruction.
   
8. CLINICAL TRIALS: Breast cancer patients who participate in a clinical trial have a right to coverage for routine health care costs.
   
9. PATIENT EDUCATION: Every woman has a right to make informed choices and take control of her own health.
   
10. INNOVATION: All Americans have a right to a government that invests adequately in innovative cancer research.
    

I promise to protect our newly acquired rights in the Patient Protections and Affordable Care Act and keep fighting until the entire Breast Cancer Bill of Rights is enshrined in law and extended to all women.

You can sign up for the petition here. Find out more about the Susan G. Komen Foundation here.

Two branches of attack are better than one, and one is better than none.

Don't be Chicken! Participate!!!!

One of the websites I ran across a while ago is Dr. Susan Love's Army of Women. Now part of me balks at the title of this, as men get breast cancer too, but I do understand why this is the name.

One of the things that this website does is that it gathers volunteers for various research studies. Often, I don't qualify, but recently a study came across my email in-box which I did qualify for and which I feel passionately about. This is a study of women who developed breast cancer before the age of 40.

You don't have to be currently in treatment. You can be out of treatment for many years, like me. You can have recurrences, like me. I can't remember if it also calls for siblings and mothers of young breast cancer survivors or not... It does mean that you have to get some blood tests done.

To me, thats a small enough price to pay. When I look back, I shudder at the fact that I have spent more of my adult years fighting breast cancer than being healthy. I cringe at the fact that my daughter doesn't remember a mom who wasn't battling and that my husband only had three and a half years of marriage to a woman who wasn't ill, recovering or living under the shadow....I want the researchers to find out as much as they can so that others don't have to go through this.

Don't be chicken. Please, join the Army of Women. If something comes along that you can participate in, do. With this we might more quickly find a cure.

Silicone is My Friend

Pink beach morning glories seem like a good way to start. Something cheery for something I despise. When I first had my mastectomy, a friend who had it done before me said "Remember, silicone is your friend."

When given the option of having reconstructive surgery, I decided not to go that route. I didn't want to have more surgeries. I didn't want to use the muscles which were designed to do one thing be used for making a fake breast. It just didn't seem worth it. I didn't want to use either silicone or saline implants....so, I use a prosthesis.

I hate going in to get new ones. A couple of weeks ago, the seam on my form gave way. My husband fixed it with some of his super-duper chemicals from work (he's in the aerospace industry). While it cured, I dropped back to using my old one which had been repaired from an incident with the cat....lots of little pin-pricks are the result of her being overly rambunctious.

Last week, I accidently dropped it...and it split in two oozing silicone out. The other one with it's seam repaired I was sure wasn't going to last very long, so since the prosthesis place was having a "customer appreciation" day in honor of Valentines day, I went in to get a new one.

After 11 years of this, you'd think I'd be used to it. I hate it. It's getting better, because not all the bras are industrial strength ones....they're getting prettier, but still. . . Insult was added to injury when my FSA card didn't work. When I finally got done with the transaction, I called the insurance company which administers the flex spending account, and discovered that for some reason the shop, which only sells items for women who are undergoing chemo-therapy and who have had mastectomies and lumpectomies, is catagorized as "clothing for men and women, " instead of durable medical goods.

Still...my experience is better than one of my friends who had a double mastectomy last year. Her insult was that her insurance allowed her one prosthesis per year. One. Even though she had had a double mastectomy, she could only get one form. Obviously, someone wasn't thinking when they wrote up this provision.

Even with insurance, buying forms and mastectomy bras is expensive. Just for fun, I looked on ebay. Sure enough, you can get them there. Some are used. Some are new. And...I never realized that I shared my need with men who are cross dressers and drag queens....so some are....very colorful and anatomically correct.

As much as I don't like doing this....I have to repeat....thank God for silicone, and silicone is my friend.