Dispatch from the frontiers of science

A glimpse of my guinea pig life inside a clinical trial

Secret garden behind the hospital, with blackberries, tomatoes, and squash.

Today it all begins. I am sitting in the hospital-adjacent hotel, listening to construction works scrape and beep and drill outside, foggy from a sleepless night. Maybe it was the pillow. Maybe it was eating too late. Or maybe it was the new liminal space yawning before me.

As usual, my lowest point was leaving my family behind, Theadora in the house and Tim at the train station. I began writing, of course, but nothing was coming out right. I was sitting with a family of three. It was all very pleasant until the mother took the boy’s temperature right next to me, and I peeked, and it was 39 degrees. I panicked. Is he sick? I asked his mother. Yes, he’s had a fever, she said. I apologized but said as I was starting chemotherapy the next day I couldn’t pick up a virus at this particular moment. Thankfully there was an empty seat nearby next to a woman crocheting a hat and talking on the phone about her imminent divorce.

When my 2 pm medication alarm went off, I pulled out my pill case and realized I had forgotten to take all of my various medications that morning. No wonder I was feeling off.

I went back to writing, still feeling restless. Stopped and did the NYT crossword puzzle (easy as it was a Tuesday). Got a tea from the café car. Went back to writing. It was better. The conductor announced that due to an accident with a person, we were going to be 45 minutes late. Then an hour and a half late.

I made it to my hotel by 7:30. My friend Kristin, who moved from New Orleans to Paris three years ago, came down to have dinner with me in the hotel. We met during a writing conference in Minneapolis many years ago, and spent time together when I was later on book tour in New Orleans for The Ambassador’s Wife. We hadn’t seen each other since 2015. She is a poet, a writer, a teacher, an editor, and once upon a time she sang feminist country songs in Nashville.

On the way here, I worried that Kristin would think this a weird time to reconnect, that she would find hanging out with a cancer patient a burden, that maybe she would think I was asking for help. But I feel relieved of these worries. Once she arrived, we couldn’t stop talking. We sat up in the 10^th floor restaurant until it had stopped serving and everyone else had left, until far past my bedtime, talking about writing and work and mutual friends and France and New Orleans and books and relationships and yes, cancer too. When I got to bed, I felt happier than I had felt all day.

Hospital

Here I am in my little 1975-style room in the Institut Gustave Roussy. When they first installed me here and left me alone in the room for hours without telling me what was happening next, I was overwhelmed by loneliness. I enacted my usual cures, writing for most of the afternoon and evening. I had thought that I would start the drugs yesterday, but apparently yesterday was for still more tests and procedures and the drugs begin today. A bit disappointing. More waiting. So they drew 17 vials of blood, conducted more urine tests, and sent me to a medical photographer, who locked the door and told me to take off all my clothing except my underpants. She photographed every inch of my body, so that the hospital has a record of what my skin looked like before treatment. It made me worry what will happen to my skin with treatment (I know that rashes are one side effect). I was glad that I had worn the spectacular culottes that Laure Boin had designed and given me.

I was visited by Miruna, the intern who previously interviewed me. She explained the schedule, broadly speaking and told me that they don’t usually do cold caps here, so I will lose all my hair. C’est la vie. Another woman arrived with her, and questioned me about my health, habits, drugs, pain. She then tested my muscle strength and nerve reactions. A third woman also questioned me—I struggle to understand the specific roles of each nurse/doctor/intern. She was cross with me for not having ordered my dinner. No one told me I needed to, I said. No one asked me what I eat. In Montpellier, a dietitian had come to speak with me right after I was admitted to make note of what I could eat. Here, no such thing.

By 7:30, I was hungry, and went to ask when dinner was coming. A woman who was busy clearing everyone else’s trays angrily told me that it had cheese so she hadn’t even bothered to bring me a tray because she knew I didn’t eat cheese. But surely there was something else on the tray I could eat? I said. Soup? Salad? Yes, there was soup. A sympathetic nurse nearby got me the soup. A few minutes later, she came into my room with a purée of aubergine and sesame and a quinoa salad. It’s my dinner, she said, but I don’t need it because I brought something from home. Are you sure? I asked, not wanting to steal her food. Sure, she said. I understand your issues, as I also can’t eat certain things. I almost kissed her.

One of the women I met earlier came in to ask me more questions, and mentioned that I can’t leave the hospital before 4 p.m. on Friday. But my train is at 2:40, I said. You won’t make it, she said. You have to stay here 24 hours from the end of treatment. No one told me this, I said. Why did no one tell me?

I searched all evening for another train, but every single train between Paris and Nimes was fully booked. Not a single seat available. For the next three days. I panicked. My friend Alice is getting married Saturday and I don’t want to miss her wedding. I don’t have enough of my medications to last the weekend. And this weekend is my last chance to see Theo before she heads to London and then to the US. I rang Tim, who is going to the station in Nimes today to plead for me. Between this and the unresolved mold situation, I am finding it very hard to keep my stress levels low.

After dinner the night nurse arrived. As soon as he heard my accent, he asked me where I was from, and switched to English. He’s from London, from Acton, right near where we lived in Sheperd’s Bush and then Chiswick. He said he was relieved to be able to speak English for a bit.

He woke me this morning to put anaesthetic cream on my port before heading home. After a ten-minute meditation to calm my nervous system, I got out of bed around 6:30 and went for a walk. It was delicious to go outside and see sunshine. It was even a bit chilly. I walked around the back of the hospital, where I discovered a secret garden where blackberries and tomatoes are growing. I continued to pace outside until the café downstairs finally opened at 7:30 and I could get a coffee. The nurses have told me I have to bring breakfast from home because they only give patients bread for breakfast. Thank god I sneaked out to a bio market yesterday and bought nuts and protein bars and berries. Otherwise I’d starve in this place.

A nurse named Floriane just came in to insert a needle into my port and take a bunch more blood. I was so happy to see a human I talked her ear off, telling her the entire history of our family. Good for my French anyway.

The drugs

It was a long day of drugs. Pre-treatment drugs, three hours of taxol, 30 minutes of carboplatin, and then an hour of the brand-new trial drug. The whole day they constantly took blood from me and checked my blood pressure. I was okay until nighttime. David woke me every two hours the entire night to do electrocardiiograms, bloods, and other checks. As the night wore on, I suffered acute nausea because they gave me no anti-nausea drugs after my treatment, just before. I have never had chemo without at least a week of three kinds of anti=nausea drugs. I don’t think I could survive. They also won’t let me take steroids, which are the only reson I made it through chemo before, So now I am suffering all the brutality of chemo without any of the medications that help me through it.

I also developed a fever of 39 degrees (102.2 F for my American friends) due to a reaction to the new drug. So I shivered and sweated and had too much pain in my back and neck to sleep, as well as the nausea and vertigo and inability to move. I can barely type. I don’t know how I am going to be able to pack my things and carry my suitcase to the train tomorrow. I don’t know how. I feel incapable of movement, of anything. I am going back to bed.

Me trying to look tough. Before I got the drugs and feel as untough as I have ever been.