What’s next, locusts?

My office turns toxic with mold, I travel to Paris for pre-trial tests, and scans reveal unexpected developments.

View from my hospital-adjacent hotel room—the round thing is the Metro station.

I pulled a book out of one of the bookshelves in my office this morning to find that the entire wall is infested with black mold. Not just on the wall, but dangling in mushroomy strands. It has probably been there for ages. I have been noticing a musty odor in my office and thinking it was dust or age. But no. It is toxic black mold.

Which means I spent my morning—precaffeinated—doing a deep dive on black mold dangers and removal. So now I know that people with weakened immune systems, like me, can get fungal infections in their airways. This has to happen the week before I start chemo?

Naturally, it’s a weekend. We’ve only just returned from Sète, where Theo finished her internship at a dance school. I am still in the middle of laundering all of our damp, salty, sandy clothing to keep that from growing mould.

My office is my only refuge. The only room that is cool in the summer. The only room with a good reading chair and a sofa. The only room that has every single one of my books and journals. All of my photo albums, letters, postcards. Everything I care about is in that room. What is going to happen to them? Will I have to throw them out? I can work elsewhere until my office is cleared of mould—no idea how long that will take (given the pace of things in the south of France, which is generally glacial)—but nowhere else in the house do I feel I can comfortably settle.

I felt like I couldn’t breathe. Stress pressed its hands around my throat as I paced the house, unable to do anything but obsess about the mold. Can we afford to wait for the insurance company to do something, when the mold spreads and takes more of my books every day? How can we afford the massive cleanup if insurance doesn’t do something? What if the mold creeps into my lungs and closed my airways? It took an hour of yoga to make my body feel it could breathe again. But I still felt afraid to take deep breaths in our home.

Several days later, without any word from the insurance company, I headed to Paris for my pre-trial examinations. The night before my tests, I stayed in the most spacious hotel room I have ever stayed in in Paris, courtesy of the Institut Gustave Roussy. It’s right next to the hospital, surrounded on all sides by massive construction sites. While it’s about 200 meters from the Metro station, it’s impossible to walk a straight line to get there because most of the area is fenced off for the massive trucks and cranes.

I cried when I left Tim at the train station in Nîmes. My whole body vibrated with anxiety and fear. I didn’t want to leave my family. And I am going to do this every single week indefinitely? Leave them behind, for things that terrify me? Tim was with me for every single chemotherapy (except when Michi visited!) in the past year. He read to me every single time, when my hands were in ice mittens to protect them from neuropathy and unable to hold a book. Now I have to do it all alone. Which I did in London, of course. I did 18 months of treatment largely alone. Because of covid, no one was allowed to come with me to chemo anyway. And I know millions of people do chemo alone.

But this time feels different. During my first line of treatment I still thought I was going to experience remission. I still thought I would live, as long as I did what I was told. I was confident in my body’s survival. Now I feel that we are just trying to shove death a little bit further away. And of course, this isn’t just chemo. It’s a new drug, in this first-in-humans trial.

As soon as I was seated on the train to Paris, I got out my computer and I wrote for three hours without stopping. Working on a novel. What else was there to do?

My friend Ana met me at my hotel and took me out to eat at a nearby Korean restaurant. The hotel has a restaurant where I can take meals for free (it’s the least they can offer me for donating my body to science), but the Korean sounded more exciting. Which it was. I was so glad to have her company and think about something other than the looming trial.

My examinations took an entire day. They began with an injection of a radioactive radionuclide and a scintigraphie, to scan my heart. The woman who inserted the needle into my arm failed to get it into a vein on either side despite digging around in my arms for ages, so finally her superior took over. From there I headed to the scanner, to be injected with dye. They scanned my abdomen, thorax, and then my brain. After that I headed to the fourth floor, where all of the trials are based. The nurses drew a dozen vials of blood, tested my urine, and gave me an electrocardiogram. Later, an intern talked with me for an hour about some of my results and the trial. She was young, Romanian, and both kind and direct.

“Your scans show nothing in your brain,” she began. “Nothing in your bones or lungs. Nothing in your liver, spleen, kidney, or pancreas. However. It shows little nodules all across your clavicle.”

My clavicle? I hadn’t even worried about my clavicle. “Now these may not be specific to your disease,” she continued. “We need to examine them. They could be inflammation from another cause. And of course there is liquid on the peritoneal level and nodules on the peritoneum. You knew that.”

“I did.” My clavicle seemed dangerously close to my brain. “It can spread to my brain?”

“It can spread pretty much anywhere.”

I should have known that, of course. I’ve just been so focused on my abdomen I forgot it could appear elsewhere.

“Do you have someone to talk to? We can find you a psychologue if you need someone to listen to you.”

I don’t need someone to listen to me. The reason Troy is so helpful to me is that he doesn’t just listen; he provides me with tools, strategies, new perspectives on my situation. He gives me homework. That is what helps. Not passive listening, which is what the French seem to think therapy is. I’m tired of hearing myself talk.

When she was done with her list of questions for me about my medical history, medications, home situation, and state of mind, I told her how worried I was that this trial would disqualify me from future trials, how much I had wished for an ADC trial. “I realize this is impossible to answer,” I said, “But how long might I have before an emergency situation happens? In other words, might I have time to wait for another trial?”

She agreed this was impossible to answer, but she did her best. “Your cancer is progressing,” she said. “It could progress very quickly. You have already had one obstruction episode, last October. The nodes in your peritoneum, one of them could block your bowels.

Also, even if another trial comes up, we don’t know the inclusion criteria. You may not qualify. It might not target your markers. There is no guarantee you could get into another trial. Whereas this one, it offers you a chance.”

A chance. She did not elaborate and I did not ask her to.

Our conversation left me feeling afraid enough of an emergency to feel I should go ahead with the trial, the bird in the hand.

I spent my last night in Paris—after gluten-free pizza with my friend Cat—at the home of a woman I met through the Association of American Women in Europe. I’ve spoken to her book group about Exile Music. She said that she will be away until late August, and welcomed me to use her flat while she is gone. It’s a miraculous gift, to have somewhere to land on the nights the hospital won’t cover. It’s elegant and art-filled and homey. And the wood floors are perfect for ballet…

Now, I am speeding homeward, back toward the mold. No progress on that. It was hard to leave cool and breezy Paris to head back to the oven of Sauve. And I nearly missed my train, arriving just four minutes before it departed. But I will be happy to see my family, at least until Tuesday, when I head to Paris to start the trial on July 9. Wish me luck?

Monkeying around post Theo’s end-of-year dance recital in a casino theatre in La Grande-Motte.