Conversation with a French oncologist

How do you climb through your days when your doctor offers no hope?

Beautiful world, let me stay a little longer.

My oncologist, Dr. D’Hondt, was brusque when I saw her on Thursday. My scan did not show anything (yet?), but she believes it is a recurrence because of my rising CA125 tumor marker and my bowel symptoms. She said the longer I can wait before starting chemo again, the more effective it will be. It is too soon after my last chemo for it to work well. She said we have to wait until she can see something on the scan, and that if I can hold out until early 2025 that would be best.

But what do I do about my GI issues? I asked. My insides have essentially stopped working. She said to continue taking the osmotic laxaties and wrote me a prescription for Solupred, which she said might help if inflammation is involved. She will scan me again in mid-October, barring any emergency.

She told me (in no uncertain terms) to cancel my planned writing residency in Costa Rica in October. “That is not where you want to be if you have an emergency with your bowels,” she said. I agree this is the right thing to do, and it also means I can be with Theo on her school holidays, which is of utmost importance to me right now.

I asked what my treatment options were if/when a recurrence is confirmed.

“Just chemotherapy.”

“There is nothing else?”

“No.”

“What about—” I wracked my brain for the names of drugs and treatments I had been reading about that morning. “Elahere?”

She didn’t recognize the brand name, so I looked it up on my phone and showed her.

“This is not used in France,” she said. “It is still in trials.”

“Couldn’t I do a clinical trial?” There had been so many listed on the Memorial Sloan Kettering website.

“There are strict requirements for trials. And your bowel issues may disqualify you.”

I asked about going to the US and she said bluntly, “you can’t. You need US health insurance. A clinical trial will provide the drug but all the rest you would have to pay for. You would need a place to stay. And a way to pay for your care. You can’t go anywhere, you can only access treatment in France.”

“Or maybe the UK.”

“Or maybe the UK.”

I was still longing for some hope on the horizon, some possible treatment not yet tried, something to get me through the days.

“So what do you do when the chemo stops working? There is nothing else to try?”

“No.”

“So when the chemo stops working I just die?”

She didn’t speak immediately, but there was a nod in her eyes and she offered no reassurance. “When the chemo stops working—it gets complicated.”

She refused to give me any hope at all, any hope of treatment I could try or a trial. She has always been very matter-of-fact, never sugarcoating anything. It is the French way.

Yet I feel that to give me the best shot at the most days alive, I need to find my way to hope. Some kind of optimism based on real things I can try. Something to do to fight. I cannot just give up. Not when death means leaving my daughter motherless. When we were in New York, wandering an exhibit on the Ballet Russe in the Morgan Library, Theo linked arms with me and said, “You can’t die.”

“I am doing my best,” I said.

Dr. D’Hondt reminded me that chemo is less effective each time, that the cancer I have now is not the cancer I used to have, because it has acquired some resistance. Meaning new chemotherapies could give me even less than the six months each they have given me thus far. I will let you do the math on how little time that could mean, how little it could leave me.

For the first time in her office, I was tearful. I thought of Lizzie, the head chemo nurse in the UK, who always hugged me when I cried, and reassured me that they would NEVER give up on me. I sobbed as we sat in the waiting room to see the secretary in order to book my next appointment. I’ve never seen anyone else cry in a waiting room at the cancer hospital. Maybe the French are just stronger than I am.

Tim, as always, heard more hope than I did. He refuses to concede I might not be around much longer. I am glad he is like this, that someone believes this. That he in particular believes this. We didn’t talk on the drive home. I felt suddenly exhausted, as if I had been dropped from a great height. I drifted in and out of consciousness, not wanting to think at all.

The walk up the stairs felt impossible, my legs leaden. At home, I didn’t feel I could face Theo. I stayed downstairs and made dinner. She was writing anyway. She has been writing so much, working hard on two new plays. I am so wildly impressed with her discipline, productivity, creativity, and with the quality of her writing. She is amazing and beautiful and everything good in this world.

“Mom! Can you come upstairs? I need you for a few seconds.”

I stopped chopping vegetables. “I’m making dinner.”

“Just a few seconds.”

“Okay.” As I walked toward her she remembered. “How was the appointment?”

“Not the best appointment I have ever had.”

“Oh no.”

“The scan showed no sign of a recurrence—”

“That’s good!”

“Yes. But the doctor thinks it could be a recurrence because of my blood test and my symptoms.”

“I’m sorry.” She hugged me. “I love you.”

She asked no further questions, for which I was grateful. I went upstairs because she wanted to see if a certain physical interaction between actors would be feasible. So I sat on the floor with her, our backs against the towers of boxes of our things from Uzbekistan.

“Hug me as if you’re scared,” she said. I complied.

“Great, it works!” And she went back to writing and I to dinner.

We watched Ten Things I Hate About You that night. I really enjoyed watching it with both of my Ts. It was just the kind of light romance I needed to get me through the hours before sleep.

Fellow author and cancer-fighting pro Suleika Jaouad wrote in her recent update on Substack: “Please no pity, no advice, no unsolicited medical information, no dietary recommendations, no alternative cures from your great-grandmother’s guru. I appreciate the good intentions behind these impulses, but please know that (unfortunately) I have a lot of experience when it comes to cancer, and I’m choosing the right path for me.

What I do invite is love. I’ve been the very fortunate recipient of so much loving care. Yet there are many out there who are not so fortunate—and some of them are people in your own life. Reach out to someone you know who might need a little love or thoughtfulness. Everyone is carrying their own private struggle, and you never know how far your kindness will go.”

I’d like to add here something similar, inspired by her instructions. I will start the same: Please, no pity. I don’t need anyone to feel sorry for me. Sympathy does not buoy me. And I certainly welcome love and the spreading of it to others who need it. I also invite you to share news from your life and stay in touch with me as often as you can.

However, I won’t ban you from sending medical advice, as I lack Suleika’s vast support base and could use a few more people on my research team. If you have the time and inclination to help with researching clinical trials and treatments in Europe and elsewhere, please let me know and I will give you an assignment. To my dismay, Elahere, a new and effective drug for metastatic breast and ovarian cancer, is not available anywhere in Europe, and is unlikely to be available any time soon. I believe there are trials, but I don’t know. I am also interested in finding out if I might be able to be in a trial for CAR-T. My doctor said there are trials for that in Paris and Lyons, but that she didn't think I'd be eligible. Apparently my bowel situation might rule me out. The last time the cancer came back I had these bowel symptoms, because the cancer was like tiny grains of sand sprinkled throughout my bowel. I also ask that you refrain from telling me to reject chemo and other traditional treatments. I am additionally exploring homeopathy (I have an appointment here Monday), and hope to try acupuncture—if only just to help with coping emotionally and psychologically. I would like to try more but finances limit me.

I have requested appointments at a cancer hospital in Paris and with Memorial Sloan Kettering in NYC (though I have no hope of being able to afford it, and of course my daughter just started a new school here that she seems to enjoy thus far!).

You could also help by sharing this newsletter with others. We will welcome more practical help, especially once I am back in chemo. But I can update you then.

I fret that I will come across as a “bad” cancer patient, whiney and full of self-pity. We all want to be that brave patient who smiles through the pain and never crashes into walls of panic, fear, and fury. I am trying. My moods and thoughts seem to change second by second. I also know I am doing the best that I can under circumstances that are frankly shattering me.

Three days after my appointment, Tim and I drove Theadora to her new school in Montpellier. She begins lycée, French high school, this year, at a state school that allows her to specialize in theatre. The school also offers options to specialize in dance, music, visual arts, cinema, and circus as well as languages and all the traditional subjects. We are hoping that at this school she will find her people.

Because these special options are not available at most French lycées, students come from around the country to attend them. To accommodate them, these schools offer internat, meaning that kids can board four nights a week, but come home for Friday, Saturday, and Sunday nights. Kids in rural France often do this so they can attend the schools that offer the subjects they want (and because most of us live far from high schools). While I am heartbroken to lose any time with Theo, I know this is the right choice for her right now, and more importantly, the choice she wants. She is independent and excited about staying over during the week. Her roommate, a dancer, seems nice so far, and she reports a happy first day.

I don’t know when to talk with her about my future. This weekend was clearly not the right time. The last thing I wanted was for her to go off to school preoccupied with my mortality. But a friend recently pointed out that Theo should be given the choice whether to be with me when my time may be very short. I will discuss this with my beloved cancer therapist Troy tomorrow. I am thinking to wait until at least fall break. I am in no hurry to break her heart.

So much is unknown about how all of this will play out. Every time I think ahead—which Troy points out I do too often—I feel panicked. Every day I wake up in full adrenalized fear, and have to repeat to myself, “I have today. I have today. I have today. At least I have that.”

I’ve been buoyed in recent days by several kind friends here in Sauve, who have listened to me, distracted me, offered resources, and just been generally generous and kind. I am grateful for this unanticipated little community forming around me. I look for the small joys Suleika is always urging us to find: picking blackberries and figs on walks with friends, jumping into the freezing water of a pool in a friend’s garden, doing yoga stretches with friends on the grass by the river, reading a ridiculous yet entertaining book because Theo once read it and I like to talk with her about books.

I still haven’t told you my last few New York anecdotes. Next time! You will want a break from all of this cancer stuff.

My daughter begins a new chapter.