Tuesday, May 6, 2014

Fantasies of being an Amazon

I tend to fantasize a lot: really a lot.

Not all of these fantasies are positive. For instance, if I have a crush on someone, I might spend just as much time imagining what it would be like to have a fight with him, as I would spend imagining romantic love scenes.

A big fantasy that's been occupying me recently has to do with having BRCA gene mutations. I heard about Angelina Jolie, about how she was told that she had an 87% chance of developing breast cancer, so she had a preventive double mastectomy. I knew that these mutations were associated with ovarian cancer as well as breast cancer. Two women in my gyn cancer support group who have these gene mutations have had ovarian cancer and not breast cancer, but are being followed for both breast cancer as well as recurrence of their ovarian cancer.  One of them takes tamoxifen.

I became convinced that I had these genes as well. My father's side of the family is all Ashkenazi Jewish, which is a risk factor.

My paternal grandmother had breast cancer, albeit with onset at age 68. I never knew her family. They may have all died in the Holocaust, or they may have been estranged somehow. My mother said that she thought that since that family had converted to Catholicism they did not like my grandmother marrying my grandfather. He wad officially Lutheran, but his sister married Georg Solmssen who was a prominent Jewish banker, so the Barschalls seemed more Jewish, our at least weren't Catholic. My Fahey later cast some doubt about the estrangement theory, as he says he remembered having some contact with members of his mother's family when he was a child. In any case, for whatever reason, my grandmother's family is a big question mark for me.

My father was an only child so there was limited information about genetics there also. Still, he had a male first cousin on his father's side, inner of the sons of the famous Georg Solmssen. That cousin had breast cancer in advanced age, though nevertheless lived to be ninety one. That cousin had a daughter who died of breast cancer fairly young, in her forties or fifties.

My mother's side of the family was fairly clear of cancer. They were WASPs. Women in my mother's family tend to die slow, lingering deaths with multiple strokes and/or Alzheimer's, making them into vegetables or childlike, before they went.

My father died of kidney cancer. He was 81 and it had metastasized all over his organs by the time it was discovered. He refused treatment and died three months later. He had been in a radiation accident in Los Alamos. His urine was radioactive after that accident. I attributed the cancer to the accident. He also had huge black, hairy lesions all over his back that he had refused to get treated for years, which were likely cancer. I suspected those were from alpha radiation to his skin. He claimed never to have had a tan or sunburn on his back.

He didn't think his cancer was from Los Alamos. Other physicists who got cancer had gotten it much earlier. He thought this was too much later. I attributed that opinion to denial. Los Alamos was the most wonderful, exciting thing that had ever happened to him. It gave his life meaning that, after being a refugee from the Holocaust, he could participate significantly in the war effort against Hitler; even though he was an enemy alien and even though,  ultimately,  the bomb was used against Japan instead. Many other physicists had gotten beryllium poisoning, and he hadn't. He couldn't stand to imagine that his work there had ultimately killed him.

In any case, I could have all sorts of strange mutations due to my father being in a radiation accident. I grew up with my mother being very nervous about xrays. "Your genes have been irradiated enough," she would say. I thought about that when I was having a catscan yesterday. I had the catscan anyway, but it worried me.

So, you see, I have been persuaded that I must have BRCA gene mutations, whether from my ancestry, or from the radiation accident.

And, I've been persuaded that, like Angelina Jolie, I was going to have to have a preventive double mastectomy.

Therefore, I've been fantasizing about life without breasts.

I've never liked wearing a bra. They hurt my back. They itch.

I don't like the idea of plastic implants. I've read that they have to be replaced every ten years. I don't relish the idea of more surgery in ten years, if it can be avoided.

I used to have long hair, which I cut off in 2004, after hair blowing in my eyes was a significant contributing factor in a serious auto accident. When my hair was long, I used to keep my barrettes, elastic bands,  and combs in a large glass jar. I noticed a vile, chemical smell every time I opened that jar, so I surmised that the plastic gadgets in there were outgassing something.

I read an article in Science News about a museum that held plastic artefacts. The museum noticed that, when the objects were about fifty years old, they disintegrated into toxic chemicals. The suspicion was that they had been slowly disintegrating for years, but had only been visibly affected at the end.

In my family cottage, we had some very old plastic plates that also started breaking spontaneously. I had a very old bottle brush in my kitchen. The plastic handle of that brush started breaking and I had to get an new one.

I already have two plastic devices surgically implanted in my body. I fear that the first one may have contributed to my cancer, though my doctor emphatically denies that this is possible. It's probably more likely that the low level hormone replacement I was doing was responsible, that and my chronic refusal to allocate enough time for sleep.

Still, the idea of more plastic devices in my body, for purely cosmetic purposes, struck me as scary.

Also, from a psychological perspective, the idea of being a breastless Amazon had a certain appeal. I've long had a lamentable tendency to get crushes on gay men. Maybe they would like me better with no breasts? Also I'm trying to become a performer. Maybe I would attract the attention of casting directors better if there were something really odd about me like that?

I had this whole scenario worked out in my brain. I had a long time to work on it. I was waiting five months to see a genetic counselor at Sloan Kettering. The Angelina Jolie effect has created quite a run on these folks recently.

I went to see her yesterday. She agreed that there was cause to test me. Also the new laws preventing discrimination based on the results of genetic testing, and preventing genetic testing results from being a preexisting condition for insurance purposes, would protect me from adverse effects.

Then we video conferenced with the doctor in New York City. That's an interesting twist in medicine now. I can get treatment in the suburbs here and video conference with a doctor who is elsewhere.

This is where reality intervened. He told me that my chemo for ovarian cancer will have killed cells that might tend to become cancerous in my breasts. Therefore, even if I have BRCA gene mutations, my risk of getting breast cancer, at least in the next five years, is now similar to that of the general population.

Moreover, they would not recommend any elective major surgery in the next year, as my body is already weakened, and my chances of recurrence of ovarian cancer are much higher than my chances of getting breast cancer. The weakening effect of surgery could make the treatment of any recurrence more problematic.

Therefore no preventive mastectomy.

Tempest in a teapot.


Addendum 6/5/14

Genetic testing reveals that I do indeed have a mutation on my BRCA2 gene which is typically found in Ashkenazi Jews.


Addendum February 2016

Now they're saying that maybe I should have the surgery if I'm still in remission 5 years out, so this may be reopened.  I've been thinking about it a lot, because one of my friends is having a mastectomy because they're gender fluid.

My breasts have been useful. I nursed my first son for 22 months and my second son for 36 months.  I found nursing to be an extraordinary experience. I was riveted by it.  I pumped at work. I was in La Leche League. 

Even I came to feel that breastfeeding explained my childhood obsession with vampires, that I had subliminally wanted to nurse a child all that time, hence the feeling that vampires were so fascinating.  I used to think, particularly of my older son, when he was still nursing, affectionately as my little vampire.

Of course, they're no longer useful in that way.  

I did read this article about a woman who developed a genetic treatment that would lengthen the telomeres in human cells.  This would in some sense, theoretically, make the treated person 20 years younger.  If I were suddenly 20 years younger maybe I would still want to nurse a child, even though I can no longer bear one, due to surgery for cancer.  But that all seems very unlikely.

So, back to the amazon fantasies, if I can resurrect them.  I just bought 4 bras recently.