The Emotion of Statistics

On inspire.com last week there was a Dutch woman, 37, who started with the same rare cancer as myself - primary vaginal adenocarcinoma, sounded like stage 4b. Two years later she has lung mets and cancer back in the vagina and lymph nodes. It will probably kill her, she didn't say if there was an estimate as to when. I felt a lot of compassion for her. She was pregnant when she was diagnosed and now has a two year old daughter. Hers is the closest to my situation I've come across. Assuming they couldn't do radiation right away because of her pregnancy. 

I haven't had anyone tell me I am going to live, or that I am going to die. Or that the treatment will work, or not work. Or any odds about anything. As I have said before, estimates based on studies are to help doctors make decisions about treatment for individual patients. They are not relevant to prognosis for a particular patient. Denise, who had breast cancer twice, said the other day that the prediction for her was 98% success rate. She ended up in the 2%.

But we rely on these numbers. On an almost instinctual level, high numbers (suggesting positive outcome) are relaxing. Is it more helpful to focus on the positive, to tell oneself that one will be part of the the statistic that lives/thrives/heals? I suppose it depends on how one does it. "Positive thinking" can be avoidant, and agressive. I don't try to think positively, or negatively. It's more that blanks automatically get filled in.

Alice has questions

I realize now what I think, that the current chemo will take care of the cancer in my lungs, and I'll be done with it all after that. There is virtually no basis for this view. True, I responded well to treatment last time. I take good care of myself. But the outcome is totally unknown. I don't even have any odds to trick myself with. I think it would be harder to do this if there were numbers: 30% chance of this, 70% chance of that. I fill in the blanks in my own way, mostly not consciously. And I fill them in in the way I do probably because on some level I still don't think of myself as someone who is a candidate for cancer. This whole ordeal still has got to be just a kind of blip on the screen of my life...

My thoughts about it have become more subtle in the...eight months since my diagnosis. At first and for some time, it was: I'm either going to live or I'm going to die. I was not aware of other possibilities. The subsequent dichotomy: if I live, I'm either going to struggle with cancer/treatment my whole life, or not. After treatment was over and I wasn't recovering quickly: Will I live without cancer, but be disabled by the treatment? Then most recently, I had a great deal of fear about what chemotherapy, not cancer, would do to my body. There's a lot of fear to deal with, all to do with future possibilities.

Denise said she takes time very day to acknowledge fear, just let it happen. I think she said in the shower after swimming, she lets it all happen. Then she puts it in an imaginary box until next time. If fear comes up during the day, she  tells herself to wait for the time to open the box. A creative way to deal with fear. All I do really is just try to be aware of thoughts, particularly of speculation. What if this happens? What if that happens? Slowly I see myself creating scenarios, see the suffering in this, and them go.

I'm getting better at not knowing and the freedom that brings. There's always a new thing not to know.

...Then what I am afraid of comes.
I live for a while in its sight.
What I fear in it leaves it,
and the fear of it leaves me.
It sings, and I hear its song.
-Wendell Berry