A Christmas Crisis

Nothing says Joyeux Noël quite like the sudden failure of treatment and the news you might not make it home to your family.

It’s Christmas Eve morning and I am installed in my chair at Gustave Roussy, awaiting treatment. The plan was for me to take the train down to Nimes this evening so I could join Tim and Theo, who are already there, preparing the house. But this week my abdomen has abruptly swollen to monstrous proportions. I look 7 months pregnant and I can no longer eat and drinking is difficult. I’ve gained five kilos in a week. It’s clearly ascites.

This means that the trial has stopped working. And my future is a void.

I don’t think I will be allowed to travel, but I am waiting for the doctor to see what they will do about my abdomen. I did just a little yoga this morning, but could not lie on my stomach without agony and having trouble breathing. I am deeply uncomfortable.

My friend Cat spent the night with me last night, so I wouldn’t be alone. We met in Montmartre to wander the streets together and pick up stocking stuffers for our girls. I was feeling hugely bloated then, but not nearly as bad as today. Last night I still had hope of rejoining my family. This morning, not so much.

I will wait to post this until I have more definitive news, but I cannot wait to start writing as I don’t want to run out of time. What else can I tell you, while we wait? I was going to send you a bunch of book thoughts today for the holidays, but I will save them for next week so this won’t be too long.

Last week the doctor suggested the weight gain was ascites, so it wasn’t a surprise. But I am scared. The pain is too familiar. I want someone to tell me I am wrong, to tell me my fears are unfounded, but the problem is that my fears are all-too-well founded. No one ever tells me things will be okay because they clearly will not.

So how do I get through these days, with these feelings in my body, the terror in my mind, the feeling it might be time to wrap things up?

I have so much more to teach my daughter, so much more to learn from her. So many more things I want to do with Tim, who hasn’t had a minute to relish his retirement. And now he is compelled seek work again.

This week, I saw my London psychologist, Troy, for the first time in months. Before we spoke I had had a dreadful morning, dealing with endlessly frustrating admin, and was distracted by continuing issues and hated that I was distracted by them. I was unable to focus on Troy and what he was saying. I didn’t know what was most important to discuss with him. Everything felt important.

After Troy I was still in tears. I headed to the Latin Quarter and walked and walked and walked. I felt lonely but also that I couldn’t be with other people.

With Troy, with my doctor, with my family, the stubborn hope persists, that they will provide me with reassurance. But I am left with empty hands and heart, bereft. I want someone to tell me I can stay here. That I will see my daughter grow up.

Every restaurant and café I passed looked so festive, cozy, and inviting. I could see myself there, reading, writing, eating lovely things. I found arty cafes meant to be creative spaces as well as sources of caffeine. I stopped nowhere. I remained on the outside. Maybe there is satisfaction to be had in the yearning to be inside, at a table, a pocketful of gold. Maybe once I sat down the dream would turn to dust. The coffee would be bitter, the light not good enough for reading. None of the food would suit me.

11 a.m.

Okay I just saw Dr. J, who is from Argentina and has a trilling, musical accent in French. She examined me and ordered an echography immediately. Said she couldn’t tell me whether or not to travel, but that if I wanted to be sure to see my family, they should come today to Paris.

Dr. O also came! I didn’t think she was working over the holidays. She said that if I have a puncture today I can still travel after. But we won’t know about the puncture until after the echography, for which I am still waiting. I hope I can have it soon!!! (You’re getting all these updates in real time today).

Earlier this week

Tim and Theo left on December 21, to prepare the house in Sauve for Christmas.

I will be okay alone for a few days, I told myself sternly. I will be okay alone. Okay alone. I always manage to be okay alone.

Will it though?

The previous evening we had gone to my friend Cat’s Christmas party. It was fun to meet some of her friends and be surrounded by her community—although every conversation started with “so what brought you to Paris?” and thus I had to explain my cancer and my clinical trial. Over and over and over. And in so doing, I felt I was ruining the merry party spirit. No one wants to hear about terminal cancer at a holiday party! I felt guilty for mentioning it, but I couldn’t figure out how else to answer questions honestly. Why do I feel guilty for the situation of my life, a situation that simply is? But I did. I hope that I didn’t depress too many people.

I’ve been scattered and having trouble organizing my time. Obviously writing and exercise are non-negotiable, but there are other things I need to fit in: writing Tim a list of my subscriptions to cancel after my death; writing a letter to Theo about my life and my love for her so she has it all in writing; editing work for private clients; admin work for my writing life; finding reasons to leave the house once a day; cultivating relationships; planning for medical emergencies, fretting about finances. I am afraid of having an emergency in Sauve, and then having to scramble back to Paris because I don’t want to end up in a different hospital. I want to stay in the center of research.

When I couldn’t stay home any longer, I took the Metro to Gare de Lyon and walked from there to Place de la Bastille and then through the Marais, and then to the Tuileries Christmas Market. As I walked in the rain, I listened to The Haunting of Hill House. Maybe not the best book to read when anxious and alone?

Monday I had plans with my new friend Catherine (not to be confused with Cat or my fellow freelance writer/editor Catherine), whom I met at book group last week. She invited me as her guest to a wondrous place called Aquatonic, in Montévrain to the east of Paris. We began with an aqua gym class, which was rigorous and fun. I forgot how much my body loves to be in water. It has been so long! For nearly 20 years I swam almost every day, in New York, then Yemen, Amman, London, La Paz, and London again. Once we moved to Tashkent, I stopped swimming because the pools were too expensive. And then there was covid. Since then, I’ve only made it to water intermittently.

In the south, when at our home in Sauve, getting to an indoor, year-round pool requires too much time in the car. I can’t stand to waste half my workday driving to and from a pool. I would get nothing done. It’s easier in the summer, when a friend lets us use the pool in her garden.

So Monday was blissful. After the class we wandered over to the spa, which consists of 14 different pool areas, with massage jets positioned for every part of the body. I didn’t even know such an amazing thing existed! There’s even a place where you can walk against a strong current, which was fun too. Every muscle of my body, shrieking with pain and tightness, began to release. I was distracted from the pain and discomfort of my abdomen. Afterwards, Catherine took me to her beautiful home, in a village twenty minutes further east. We drove through flat, green countryside to get there, watching the apricot winter sun settle through the trees.

In her art-filled, comfortable home, full of carved wooden furnishing that have been in her husband Christian’s family for generations, I was treated to a private showing of Christian’s paintings. The pieces were fascinating and I particularly appreciated that Christian explained to me what he had been doing with each one, and how they related to the history of art. The tension between male and female. The positioning of the figures. I drank it all in.

He then served us pumpkin soup he had made from pumpkins grown in their garden. It was the perfect food for my stomach, and I managed quite a bit of it, which made me happy. Catherine and Christian’s company kept me away from my frantically circling thoughts and distracted me with conversation, art, and good food.

It crushes me to think of Theo’s disappointment if I can’t get south and she and Tim have to come to me. She would hide her dismay, but I know how much it means to her to be in our own home for Christmas and to follow our traditions. The gingerbread dinosaurs we make every year. The little live tree we bring in from our little terrace to decorate and then put back outside. Our Boxing Day hike. I don’t want to be the cause of the loss of all of this. I don’t want to drag my family back to our little (cozy!) underground lair for the holidays. I don’t want to miss seeing our friends in Sauve.

I keep thinking, could I be imagining this? Am I making a to-do out of nothing? But I have never been wrong about what is going on in my body. I am highly attuned to its changes, changes that I sense before my doctors. What if I am wrong this time though, about the ascites? What if I drag my family back here for nothing, and we miss our favorite time of year in our home?

Yesterday, I headed to Montmartre, perhaps my favorite neighborhood in Paris. As my friend Cat commented yesterday, it’s preserved its charm partly because it’s not convenient to anywhere. And it’s on a hill. I was delighted to see so many independent, arty, creative little bookshops, cafés, and stores. The kind of shops I had been unable to find in the Marais, which is now full of these minimalistic, nearly empty boutiques with clothing in just three colours, artfully arranged, all costing hundreds if not thousands of euros. I browsed bookshops and Cat met me in the middle of the Christmas market. We wandered, looking for stocking stuffers. We paused in a store selling all handmade clothing from Colombia. In the back, among all the alpaca sweaters and brightly colored ponchos, little tables were arranged into a café. The owner of the shop was a warm-eyed man who talked with us about his passion for Colombia and for the zest for life there, the resilience of the people. Paris is just sad, he said. The holiday lights in Bogota were spectacular! Lights everywhere! But I came back to Paris, and nothing. It’s sad here.

I personally don’t feel Paris is sad, but Cat commented that the school kids wear nothing but black and grey. Nothing colorful or daring. True.

5:43

I’m out of the hospital (!) and briefly back in our hobbit hole before heading to the train to the South. Call it a Christmas miracle. I had treatment by noon, and the echography, which did indeed show ascites. They punctured me, and removed about 500 ml, which isn’t as much as I had hoped to get rid of. They punctured me twice, thinking they might get more, but no dice. They said they’d try again next week. I am doubtful about their technique. In Montpellier, a doctor punctured me using the guidance of ultrasound so as not to nick an intestine or liver.

Here, I saw the ultrasound guy, who made an X with a marker on my stomach and then sent me back to the fourth floor, where two doctors spent so long sorting out how to puncture me I wondered if it was their first time. My nurse Stephanie, my favorite, was looking after me and came in to say that if they weren’t being nice to me she’d whip them. (Maybe because I’d given the nurses two large boxes of chocolates? Impossible to say).

So now I am actually about to head to the train station to head south to see my family. I hope my abdomen can handle a few days away! It still feels pretty unhappy.

Happy Hannukah, Merry Christmas, and have a fabulous day if you aren’t celebrating anything. Here’s a quote from Andrea Gibson their wife posted today. This is why I need to be more like them:

Some useful holiday advice from Katie Couric’s site on how to help people who are grieving. I relate to this, especially because I really struggle with making the smallest of decisions and can’t seem to articulate what help we need.

https://katiecouric.com/health/mental-health/kelly-rizzo-amanda-kloots-grief-holidays/