208 Minutes

Yesterday I went searching in my phone for the good parts. The notes from friends. I found the one where DB said “You are going to get through this! You’re not going anywhere and L is going to be ok!” Another friend reminding me that no matter what I am of value. I found the part where A offered to haul me through this shit storm, with her rope. I found hearts and I-am-with-yous and a usually quiet young person in my life writing to let me know I am dearly loved by many people: “including me.” I found the part where M said I am loved beyond my wildest dreams and K said she wished she were closer. I’ve known these people my entire life and it takes my breath away. M sends a picture of the three of us and I see it all our lives before us. I am seven in the photo and I know nothing but everything I’ll ever need is right there.

Some months ago, I’d bought Christian Wiman’s book Zero at the Bone – years ago I'd read this New Yorker profile and kept his story in mind; it was something I needed. Now I think I was preparing. I can’t read just any book or any author right now and I am particularly impatient with authors who don’t realize they are going to die. Or books that don’t reflect Brodsky’s admonition that the only true subjects are Time and Language.

Wiman writes about his own problem with empty literature though he doesn’t use those words - he is reading a novel (I recognize) and it offends him: Reading an intelligent, disaffected, much-celebrated young novelist so adept at ironizing his own existence, so masterful at noticing every detail of the rarefied collective consciousness within which he is enmeshed, that it seems crude to point to a first principal and say: there is our problem. . . . [He] is not disquieted enough by, seems in fact attached to, his own alienation. This is a toy despair. It’s entertaining, brilliant at times, but it cannot help me.”

Also Wiman: There are some hungers that only an endless commitment to emptiness can feed, and the only true antidote to the plague of modern despair is an absolute-and perhaps even annihilating- awe. He quotes theologian Abraham Joshua Heschel, “I prayed for wonders instead of happiness, and You gave them to me.”

How the old fears come out to play. Some months ago driving home from work a story on NPR about “cancer ghosting.” About a young woman who’d been cut off by a family member and friends after they learned of her cancer diagnosis. So why did this NPR episode come to mind that Friday night in the hospital, floating in hospital time? No matter: the next day I texted a dear friend Don’t cancer ghost me. How needy I felt. Good old fear of abandonment. The ultimate crisis of Angels in America - that Louis can’t stick around as Prior dies, he can’t take it, can’t watch his loved one get sick and ill. How theoretical that once felt, and yet Kushner knew this is the essential human tragedy. What can we do for each other? How much can we bear? Or Sigrid Nunez: What are you going through? (oh the book was so much better - no offense, Almodovar!)

There are so many problems I thought I had and it turns out they weren’t problems at all. No problem. It was my life. I had a life of no problems. My problem was thinking I had problems.

The reason I have a notecard that says It’s Not Your Fault next to my bed is because my therapist said it to me one day and it surprised me. I’d spent an hour’s worth of intellectual horsepower running down the ways I, a highly educated 53-year-old woman who has spent a career interested in women's health, should have known this was happening and stopped it from happening. C was firm, direct. It’s not your fault. I wrote it down because I’d never heard something so kind.

B said, you must avoid self-blame like an abusive relationship. Because that is what it is, B said.

Two days after my surgery I received an auto-text message from the Women’s Health Center where they’d found my tumor. The text arrived while I was in my hospital bed and unable to read text messages. CARE FOR WOMEN SPA SPECIAL 25% OFF 2 PACKAGES OF SKIN RESURFACING CALL FOR A FREE CONSULTATION. Is this what I get for the gutting or was the message sent to every registered WHC patient, whether they’d been seen for prenatal care, a pap smear, or fibroids?

Do you remember the part in Audre Lorde’s Cancer Journals where she is still recovering from the mastectomy and the women from the ACA are there asking her to try out a prosthetic in order to stay feminine for her husband?

It is a question of priorities. Twice in the past year I have been referred to medical practices for medical issues and found myself offered botox. I’m not against botox. But I don’t want to hear about botox while being tested and treated for a gynecologic cancer. I am not against any cosmetic beauty treatment, but I am against a culture that makes that more salient than finding a basic screening test for a cancer only women get.

Why isn’t it possible to imagine a healthcare model focused on or incentivized to, I don’t know, figure out a simple or basic screening for ovarian cancer?

There is no simple screening for ovarian cancer and that is why I’m here.

Since my 30s I was told to get regular mammograms. I have a family history. At 50, a colonoscopy. I had the BRCA test. Negative. I’ve been adjunct much of my career and thanks to the cost-cutting measures of unnamed institutions (excluding my current employers, one of whom provides me with generous and now life-saving health insurance) I’ve had shitty and inconsistent medical care. Still, I have on more than one occasion asked to be screened for ovarian cancer. This was the first time I insisted and the first time I was screened.

My gynecologist said, “We don’t screen because there’s really no test that works in the general population.”

My oncologist said, “The majority of patients present this same way.”

CH writes from Paris to tell me about her project on Consolation. I want to know more. Something I learned in grieving Dad, at the wake, the funeral, the aftermath, something I learned is that it is not so comforting when someone comes through the receiving line and wants to tell you as if it is comfort or justice that your dad lived a good long life. However objectively true this is - my dad was 88! His funeral was packed! - in grief that is not consolation. I did not want to say goodbye to Dad. If you are sad because your dad died it is not helpful for you to hear some woman you haven’t seen in twenty years tell you that it’s ok that he died. You didn’t want to say goodbye. When you say goodbye to your dad you say goodbye to a part of you.

Yesterday E said I know you wish you could talk to Dad right now and I said yes I would have loved to cry to my dad about this but more importantly, I said, I am glad Dad did not have to live to know this pain. To see his 53 year old daughter face this illness. I had the kind of dad who felt everything I feel and I know he would be feeling all of this - his own ovaries would be cancerous now - or he’d have grown some and had them removed.

J has grown his own, and removed his own - because that is the way we love in this house.

Let yourself take in all of the love right now, said BJTB, and she is right, even from the people who say stupid shit. I understand the Loving Kindness prayer a little better now. Even the woman who told me it was ok Dad was dead meant well and besides she had a point. Because certainly from this vantage of my disease at 53, living to 88 sounds miraculous. May she be happy.

MORE PLOT

What happened the day of the surgery I’ve had to put together in reverse. They knew before I did. J and L and JD and C stayed overnight at our apartment, we all got to surgery at 5:45 am on Tuesday. J was in the room with me until he wasn’t. The OR nurses asked many questions. The anesthesiologist nurse and doctor too. Another man came in asking for research permission. Heathcliff arrived and explained everything again. Soon I wasn’t there. J, L, JD, and C waited over an hour for the news - would the surgery proceed? There was a caveat. Heathcliff planned to begin with a camera in my belly. If there was too much there, too many spots, too dangerous to remove, she would not go forward with surgery.

An hour or two later J got the update - the surgery would proceed.

208 minutes.

The first thing I saw was JD’s face close to mine saying, You did it - she got everything out - we are going to get through this - we’ve gotten through so much we can do this. I was in the pain that obviates all else - I thought I would wake up numb as J promised but I wasn’t numb - We were on the pain scale now. A 10, I said. A 10 is being mauled by a bear, the nurse said. J returned angry they had let the pain breakthrough. My back was burning.

I do remember being asked who the president was and saying, Argh Trump, and hearing my sisters laugh, and J again pushing them, why had they limited the pain meds, and the resident explaining to him that I was too out of it.

Heathcliff, my non-Byronic hero, arrived then and said, Do you want to know how the surgery went? And I didn’t want to know because I wanted to vomit and I wanted to be in no pain. She understood something and offered a summary. I was able to do this and peel this. I did not have to do the intestinal surgery. Heathcliff said, I did peel a lot off the diaphragm and that may be the reason for the back pain.

The next day Heathcliff returned and told me a bit more. I hold my breath as she speaks. She’s a perfect surgeon. I’m in awe of her, but it’s unbearable. One day I’ll bear it but not now.