Now, I could think about some new things

Hannah, who I never met, was the person most on my mind before my hysterectomy. She was my grandmother, or she would have been, but she died when my father was just 17. Too young to be a grandmother. Just a mom. When I was a child, my greatest awareness of her was that she’d been sick. We had some pieces of art that she’d made hanging on the walls, which in my mind I understood to have been constructed while she was in the hospital. Maybe they were? Maybe she made them at home. I didn’t understand illness, not like hers. Two of the pieces of art are pictures, still life fruit and flowers, rendered out of seeds glued on to some kind of backing. Probably came from kits. Detail-oriented work, and I suppose that tells me something about Hannah.

No one talked about her very much. My grandfather almost never mentioned her, until he passed eighty, and started to ruminate more. Then, he’d show me photos of when they first got married, when he was in basic training. They met in Gloversville, in upstate New York, where my grandmother’s family had settled to work in the leather industry, and my grandfather, who grew up in a nearby town, got a job as an optometrist.

According to my grandfather, he and Hannah went on a couple of dates, and then she saw him out at a diner with another girl. She was so mad, he said, seething with it, that she squeezed a water glass in her hand until it shattered. Was this true? Was this possible? Does this defy the laws of physics? No idea, but I love this story, perhaps the most of what I ever heard about her. It tells me something else.

What else do I know? Hannah gave birth to my dad when my grandfather was deployed to Myanmar. I didn’t want a baby! he told me, in his eighties, a very loving father and grandfather, but when he said it I could see a hint, in his face, of a frightened twenty-six-year-old man. Every day, Hannah showed my dad a photo of my grandfather, so the baby would recognize his father when he at last came home.

What else? Hannah was a heavy smoker. She was very beautiful and tall. In photos from those early days of marriage, she’s in a little white outfit and ankle socks, leaning on a car. She’s 24. She looks like a movie star. She was treated for cancer for the first time when she was 32. Her children were four and seven. She died ten years later. Given the era, the treatment available, it may have been something of a miracle that she survived that long. Maybe that’s just the kind of person she was.

Lynch syndrome is the thing that Hannah had. We know that now, because it was passed on, because my dad had it, because I have it. Because she got colon cancer so young. I don’t know if she also had gynecological cancer. Given the risk, with Lynch, it’s possible. It also seems possible that no one would have told her children about it, in that time and place. I haven’t told my children where I had surgery, or why. I said: I’m having an operation. I said: I’ll be home at the end of the day.

When Hannah died, she was at the hospital. My dad told me that he didn’t know there was anything different about that hospitalization. She’d been in and out of hospitals for most of his life. But this time, she didn’t come home. Instead, the children were told that they had to get ready for her funeral, because Jewish funerals happen fast. My dad didn’t go back to his mother’s grave until his father died, fifty years later, and was buried beside her. That was also when my father told me about the circumstances of his mother’s death, that he’d had no warning. He’d never told me that before.

Getting a healthy organ removed is — forgive my language, but sometimes it has its place — a fucked up thing to do. To have to do, or to choose to do because physicians have been urging you to do it for a decade. The first time I was told to have a hysterectomy, I was 33 years old, and I just stared at the genetic counsellor who had told me this, You should have a hysterectomy, and I said, I’m not going to do that right now. I was firm. I thought the genetic counsellor seemed annoyed, but as my therapist reminds me, I don’t know how anyone feels but me. Everything else is speculation.

Many people in the health care world are surprisingly blasé about hysterectomy. Shockingly, even. When I was pregnant with my daughter, at a prenatal appointment, the obstetrician remarked, Well, after you have this baby, we’ll castrate you. Then she laughed. What a thing to say. She was, otherwise, a good doctor. Or maybe this comment made her not a good doctor at all. I know that’s how I feel.

I didn’t have a hysterectomy, and I had my kids, and I had all of my years of my whole body. Lucky me. More than Hannah ever had, for sure. And then I had breast cancer, and I lost my breasts, and they offered to do the hysterectomy at the same time. I said, no thanks!

I waited a while. And then I was 43 years old, and I didn’t have too many excuses left. The average age of onset for gynecological cancer in women with the same gene that I have is 50, and ovarian cancer is vicious. There are no symptoms, and then it’s there, advanced, and it’s rare to survive. I knew all the facts. More than once, when I went for an appointment to discuss my situation, physicians asked me I was a doctor. What a compliment! But it was just because I had read a lot about my condition. I understood the reality, and the best option. Except that I just did not want to do it. I did not want to trade my ovaries for instant menopause. I did not want any more scars. I just wanted to leave my body alone.

But. More than that, I wanted to be alive for my children. Sometimes I think about how many years I’ll have with them, which is morbid, but in a body like mine, in my body, it’s a thought you can’t avoid. One thing I think about is that yes, if my kids want kids, I’d like to be alive to be a grandmother.

I scheduled the surgery. I read women on the internet saying that having their ovaries removed had ruined their lives. I threatened to cancel the surgery. I sobbed about the surgery, which is very out of character for me. I am a stoic person. I’ve had to be. I asked to see a doctor who specialized in hormones, and I asked again, and I asked again, until I saw one. I got a prescription.

Prior to my pre-operative appointment with the surgeon, I threw up from anxiety. This, for me, was out of character. Still, I got in the car and drove myself, alone, to the clinic, like this was just a fact of my life. I don’t know how Hannah felt. I can only speculate. But on the drive north, I thought: I bet Hannah would have loved to have had this opportunity to do this horrible thing!

Going into the surgery a few days later, I thought of Hannah again. Of what she’d lost. Of what I could give up. When I woke, when it was over, in the fug of anesthesia, I realized that there had not been a day for over a decade where I hadn’t wondered: Is it today? Do I have ovarian cancer today? I was free.

Now, I could think about some new things, like taking my kids to the pool in the summer. I scheduled the surgery in late March, so that by the time the pool opened, I’d be cleared to swim.

JHE

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PS

+ I had a wonderful conversation with Dr Louise Newson on her podcast, and you can watch/listen here.

+ I feel like if you read this newsletter you’ve probably already considered reading BREASTS, but obviously I’m going to keep suggesting it:

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