Back when I was first contemplating the pregnant woman hanging clothes in Sophia’s painting, I was also contemplating my own family history with fertility.
I’m the first in my family (as far as I know) to be diagnosed with a “reproductive” cancer. No history of breast cancer, ovarian, or uterine. The cancer in our family has been on the male side, skin cancer for the fair-skinned fisherman who was not a fan of sunscreen and lung cancer for the heavy smokers.
And yet, I remember learning when I was in college that “hysteria” meant “womb sickness,” and thinking that my family had a long history of hysterics. And when I first saw a therapist and was greeted with considerable fear and concern about the process, I wondered if there were women in my family history who had been locked up for their hysteria. I remember being glad I was born in the time I was, when we stopped putting hysterical women in asylums. The women in my family are all a little crazy.
Fertility has been a dangerous time for women in my family. There are at least two major cases of postpartum depression, one in my generation and one in my mother’s, that were so dramatic I can’t discuss them here. Menopause, too, has been marked by more-than-the-usual drama. These are family secrets, and at this time I’m not ready to reveal, but they do play on me.
The one and only risk factor I seem to have for ovarian cancer is that I am childless.
I have registered for genetic testing, to see if I have the BRCA gene. I don’t think I do– only 20% of ovarian cancers are because of the gene, and there’s no history. But it is important information for my sister and her daughters. It will be 4-6 months before I can get an appointment for the genetic counseling. I’m not sure how that can be, but I’d guess it’s because of an increased fear about the gene throughout the population.
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When I was first diagnosed, I couldn’t help but think how beautiful a word “ovary” was. And since I didn’t “need” my ovaries anymore, how easy it would be to just take them out. I still think it’s a beautiful word: ovary, ovarian, egg, fertility. Like hysteria, another beautiful word, that reminds me for some reason of Ophelia bedecked with flowers…. floating down the river. Sad, romantic, tragic words.
I got back home on Saturday and although I had a cold I needed to tend to (thank you Airborne, cold caps at night, and Tylenol now and then to make sure I didn’t get a fever), I was determined to use these last few days before treatment well.
The cold is almost entirely gone, and we have had some great eats. On Sunday night I pulled out a remaining jar of tomatoes and cooked up some sauce with green garlic (two bulbs that were growing too close to another so I pulled them early), garlic scapes, shallots, salt and olive oil. I was inspired by at NYTimes set of recipe suggestions (I can’t resist reading those) that talked about quick tomato sauce. She recommended cooking it only 10 minutes and using an immersion blender to turn it into sauce. Brilliant. But my pan was too shallow for the immersion blender, which is OK because we like it chunky. Pour over 3-cheese tortellini (frozen) and serve with a salad with radishes and the last of the year’s asparagus. So, so good to be home.
Last night I kind of pushed it, but I was glad I did. I was really craving cardamom rice for some reason– the kind in 
There’s usually a gap in garden produce now– the lettuce we’ll have until it bolts in the heat, and in past years I’d have beets, too– until the zucchini kick in. But I’m lucky this year in that the peas are doing well. Peas are a total gamble in this area. (Wait until next year when I employ my trusty greenhouse!)
Greetings from St. Mary’s College in South Bend, Indiana. Or, more specifically, the Inn at St. Mary’s, a beautiful hotel on the edge of campus where I’ve been staying since Sunday. I’m here all week giving talks on The Saint John’s Bible as part of a conference with keynote speaker Sandra Schneiders, IHM.
And yet, on Tuesday when I pushed a bit to get up and dressed and attend the liturgy and S. Sandra’s talk, it was clear I needed to pace myself. I got a ride back at the 10 a.m. break and took a nap. I am ready for another nap come 3:30.
Up until Memorial Day, my chemotherapy treatments were on Tuesdays and Thursdays were my worst days in terms of recovery. I called them my “down days.” I meant that I was down on the couch, not that I was feeling down, though Thursday evenings I usually wanted to start canceling any plans I’d made, feeling like I’d reached the point where I wouldn’t “recover” fully until after the chemotherapy was over. I made myself not make any decisions on Thursdays. Fridays were always better. Aside from the anemia fatigue, things did perk up on Friday.
But Thursday night I was apologizing to my body. It was a full week and a day since I’d had a treatment, and I was still “down” on the couch. I was full of regret. It felt like this time I’d gone too far– the triple dose was too much, and this damage might be permanent. That’s the awful thing about these particular side effects: the neuropathy that has gripped my feet and fingers so that I’m unsteady walking and have trouble opening a jar; the chemical burning in my nasal passages and sinuses; my burning skin no matter how many balms I put on it. And my mind takes over from there– what have I done to my bones and bone marrow? What did I let them do? I am so sorry, body. Hadn’t I been told that neuropathy sometimes never completely goes away? Did I not take this treatment seriously enough?
Today, Saturday, is better still. I still have the neuropathy, my skin still burns, but I am coming back to myself. Really what Thursday is about is the struggle, the fighting, fighting the cancer and processing the chemotherapy. This time around it was a week of Thursdays, taking me down and down to my low point, Thursday night. But then Friday came, and when I opened my eyes I could tell the damage would not be permanent. I could tell things were ever so slowly turning around. I was going to be OK. Again.
This “triple whammy” week has been challenging, but not in the way I thought it might be. Everything was harsher and a little longer than usual, but the side effects are still mostly annoying and not painful. I had some bone pain from the larger dose of Taxol, but not until evening Friday-Saturday, and it was easily treated with Alleve and some homeopathic lotion. On Sunday it seemed like fatigue and the worse-than-normal neuropathy were the only symptoms left to subside. And I got a little too optimistic, maybe.
Meanwhile, my sister Kathy cleaned my house better than it has ever been cleaned before, kept us fed, and even better, we got the rest of the garden in. By which I mean, she helped set up the second side of the irrigation (and we put it on a 5-outlet system so there will be no moving of hoses at all, just flipping switches), plant winter squash in the raised beds, and she hoed the potato patch (where I’m not planting beans or onions) and seeded it in ground cover.
And it is true that it feels like a miracle (and really it does every year) now that the world is lush and green, early June! after a hard freeze May 14, to be eating greens and asparagus and now radishes from the garden every day. How did that happen? What joy! There is food out there! There is lettuce and there are peas growing up the fence…
I still like what I see in the mirror. Being bald hasn’t bothered me, though it’s always surprising.
But a few weeks ago I looked in the mirror and saw Sigourney Weaver. Riley, to be exact. And that sense persisted, maybe a darker, stripped down, warrior. Someone with serious business to do. Killing the alien. Staying alive. Boy did I like seeing Sigourney Weaver in there.
My niece turned me on to an emoji app where you can make your own avatar: bitmoji. She has been using it and sending wonderful messages. Her avatar has a tightly pulled back ponytail that makes her look somewhat androgynous from the front.
On Monday I watched some youtube videos about headscarf tying. Many of these videos are gorgeous fashion shoots with R&B music and elaborate styles. Jessica Pettway is a master: https://www.youtube.com/watch?v=XDTD8Q7xEys. I can only do #4.
But my favorite video was from nenonatural.com. You have to watch it. Delilla of “Hug My Hair” does the head scarf tutorial and her instructions are at the right pace and very detailed. I like the triangle tie and can do a modified one where the triangle is twisted and tucked in back. I also like the one that has a thick and thin twist and has a tail (in the photo). I tried doing this for a trip to the airport on Monday, but it fell apart by the time I got there– thank goodness I had thrown a pre-tied turban in the car!
Once I got to the airport, I had some wait time before my sister arrived, so I went to IKEA. It was Memorial Day and the store was not crowded, but there was beautiful ethnic diversity. There were several groups of South Asian families in brightly colored, summery khurtas (tunics), scarves and pants. There was also amazing headscarf watching with a variety of East African women ranging from sleek and simple to very colorful, and color-coordinated, scarves. It was so inspiring. Here’s to the normalization of headscarves as a beautiful way to wear your hair. And baldness. And boldness. And avatars of all kinds.
But at the oncologist visits I don’t even take off my socks. The doctor listens to my chest through my clothes, asks if I have any abdominal pain when he presses there, checks my ankles for swelling, and then I just answer questions. We review numbers. I answer questions about side effects. We look at the schedule. We look at the computer more than my body– where my data is stored, data I also get weekly through “mychart” online.
What first struck me about the images on his site is how different they are from what I usually imagine space. I think of space as empty, dark, and still. But the images are full, colorful, and active. What does it mean to be a scientist and work with “views” of space like this? What does it mean to be a doctor and work with my scans, my weekly numbers, this constellation of atoms, of materials that give a picture of a person suffering and healing?
Last week was a long week. I have had a relatively easy time in terms of side effects, but for about three weeks the fatigue that set in was very difficult to work around. It turns out it was due to extreme anemia, as we watched my red blood cell (RBC) and hemoglobin counts go down. I am relieved to find out it is not the cumulative effects of the chemotherapy and that something can be done to treat it.
Time is going very slowly and strangely– there is an interiority to this journey that is unlike anything I’ve ever experienced. I’m in this world of “self-care” with attention to the body, to changes, to temperature and time and laundry and food… Things that were once routine can feel overwhelming, and then a simple morning at work checking off tasks and getting things out and clearing the desk puts everything right. But from my couch on a Thursday (now a Saturday or Sunday, with shifts in my oh-so-reliable appointments) everything seems impossible and it can feel like I’m losing touch on my normal life.
The prairie outside my window has mostly looked like 