In 1997, I was 36 years old. My high school debate partner had just died of AIDs, and in the course of his death, his friends and I had gotten back together. Which is why I was talking with Rose.
Rose is very smart. She's got a degree from Berkeley in languages (fluent French and Italian), but she's always discounted it. When she was younger, she collected Barbie Dolls and wanted to be a trophy wife. I kid you not. That was a stated life goal. Although Rose can (conceivably) talk about philosophy and literature, she prefers fashion. One of those "friend of a friend" relationships where everyone is friendly, smiles a lot, and then escapes to their separate corners. (Seriously, I might try to stab myself in the temples if I had to discuss fashion for prolonged lengths of time.)
But after John's death, we started talking on the phone. About life stuff. One day, she told me that she was getting a mastectomy. At 39, she'd found a very small lump, and when she mentioned it, almost casually, to her doctor, she found her butt speeding into an extremely intense treatment program. As she told me, younger women diagnosed with breast cancer often have a very aggressive form of the disease -- and hers was very aggressive.
Two months later - when she was in the throes of treatment - I was diagnosed with infertility. It was handled in what I now think of wryly as a "boot camp central" way: I did a stimulation drug cycle, went in for testing, heard that my lining wasn't quite thick enough, got more drugs -- and when I went back, the doctor measured my lining, told me that "you'll never have children," gave me a drug to make me ovulate some time in the next few days, and waved goodbye. It took only about 12 minutes -- very efficient!
I called the doctor back, of course, and made him explain the "you'll never have children" part of things. My memory is a little fuzzy, but I believe that he was the doctor who compared my internal workings to a toilet. (Yes, he could have used one of those "sensitivity" classes.) "You know that little bar that tells the toilet when to stop filling up?" he said. "Well, yours is stuck on "full," so it tricks your body into thinking that you don't need more lining. Embryos live in lining. They cannot live in your body - there's not enough to eat.
His first treatment was to give me estrogen patches. Three of them. Estrogen, you see, is what makes your uterine lining get thick.
But I digress.
First off, yes, sure, infertility is hard. But not when it's put right up on the table next to a friend with aggressive breast cancer. Secondly, Rose just about bit my head off when she heard that I was pumping myself full of estrogen. "You're WHAT?" she yelled. "THAT STUFF MAKES CANCER!"
We both went through our respective treatments, and I learned some things:
First off, Rose was made of strong stuff. She didn't complain, didn't moan, just put her head down and fought. After her divorce, she was working for an extremely well-known (and nasty) designer who actually begrudged her her chemo treatments. She lived by herself in New York City, with very little money or friends, and it was heartbreaking to watch her fight.
Secondly, I realized that there are a lot of women with breast cancer who fly under the radar. They're someone's mom, grandmother, aunt, and they don't "do" the internet. They can't take advantage of the internet groups and support networks that the rest of us use, and the only advice that they get is from people that they see. I was part of a 400-strong internet group of forty-ish women with infertility, and the group blew my socks off. Founded by a Columbia professor of Linguistics, the group was full of highly educated, smart, very motivated women from all over the world. You could go onto that list and post all of your test results, what your doctor had prescribed, and so forth, and other women would tell you exactly what their doctors had used in the same situation, would send you the medical study that talked about the protocol, would send you contact information for their doctors, and so forth. I'm still in touch with friends I met there, and they live in DC, the south, Canada, Finland, South America, and Germany.
Rose, on the other hand, had one support group. Her group met in the cafeteria one floor above her doctor's office. All of the women went to the same doctor. And presumably, they talked about their feelings (because they were all getting their medical advice from the same doctor.)
I did what I could. I researched for her, send support packages, and so forth. And after I had my son, I spent two years of my time doing independent medical research for individuals. It was my personal way of "giving back." All of the work I did is on my website. Here's the medical page, and here's the overview page, which is aimed directly at people who have been diagnosed with something like cancer (or their friends).
So what happened? Rose's breast cancer metastacized to her spine. She fought, and began a new treatment regimen with a new drug called Herceptin.
It worked.
She became cancer-free (yes, even after having it on her bones), got a job and moved to Paris, and she's fine. She's symptom-free, and it's been years. Herceptin worked. Just like I hope it will work on Elizabeth Edwards. Because there really is hope.
I know that many of the svmoms met with Elizabeth Edwards this past year, and she sounds like quite a lady. I'm pretty amazed that they're still campaigning, but not surprised, and my heart goes out to her, her family, and everyone that this remarkable woman has touched.
There's just one thing. My friend Rose cannot afford to come back from France because she has to continue on Herceptin for the rest of her life. And it's too expensive here in America. She worked in France, and their National Health Insurance takes care of her. If Rose moves back to America, she won't be able to afford her medicine.
So... Elizabeth, once you've beaten this, and when your husband makes it into the oval office, could you do Rose a favor? Help to set things up so that our less-fortunate Americans can have access to the medicine that they need?
Thanks. With a big dash of energy-filled great vibes, luck, and wishes, from your friends (and fans) in the silicon valley.
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