A new liminal space

As my platelets reach new lows, I come to terms with the premature end of chemotherapy and my unfortunate tendency to destroy laptops.

Our backyard. When bloods allow, I climb here for a change in perspective.

As I write this, I am tucked into a new liminal space, the strangely suspended time between chemotherapy treatment and maintenance treatment, waiting for my bone marrow to spring into action.

A week after returning from London, my energy levels crashed. It wasn’t gradual this time, but all at once, like someone had dropped me from a plane without a parachute. Saturday, I climbed the wee mountain behind our house, just an hour’s climb, and Sunday I spent all day in bed. The week since has not been much better, thus I had little hope for my blood tests.

Surprisingly, my hemoglobin wasn’t terrible.  It was low—I’m still anemic—but it wasn’t low enough for a blood transfusion. My neutrophils were also hanging in there, just below what they would need to be for chemo. But my platelets took a real vacation. I think maybe they decided to stay behind in London.

Late in the afternoon after the blood test, I received an alarmed call from my GP’s practice. My normal doctor was on holiday, so it was her replacement on the line. “Have you seen your blood tests?” he cried. “You have no platelets!” He seemed very upset. I soothed him by telling him I was seeing my oncologist the following day, and she would surely know what to do. But I promised to try not to bleed.

Among many other things, my oncologist told me that if I start bleeding from anywhere—like my eyeballs—I had to ring the hospital immediately. Strangely, I am not bleeding. Usually I know when my platelets are low because I have constant nosebleeds. But I have had no nosebleeds. So. I just wait.

My platelets are one of the reasons that Dr. Véronique D’Hondt decided yesterday to take me off of chemo. It’s too toxic to your bone marrow, she said. If we continue with chemotherapy, your blood will be too exhausted to handle the maintenance treatment. Which is also toxic to bone marrow.

So the plan is that we wait for my bloods to normalize, and then I see a new team at the hospital focused on oral cancer treatments. I will begin maintenance treatment with Niraparib as soon as my platelets rise. Important note: If you have tried Niraparib and had a terrible experience on it, or heard of someone who had a scary experience, try not to tell me?

However, if you are on it and are managing just fine, please tell me! I could use the encouragement.

I’m nervous. New drugs scare me, especially because in recent years two different new drugs landed me in the hospital. I’m avoiding reading about the side effects, which are legion, although Dr. D’Hondt said that my new team will apparently insist on telling me all the side effects, so I can’t hide forever. I hope I can handle the truth. Truth is hard. My days are spent crafting narratives, not only on paper for a living, but in my head, about my life and how it will go. I’ve been feeling so well lately (before my bloods tanked) that my narratives have become forward-looking.

Yesterday I even bought a new laptop. I had a beautiful laptop, a laptop I loved and that was only a year old. But almost exactly a year ago, I accidentally crushed that laptop between my desk and the ceiling of my office in Tashkent. It was a slanted ceiling, and I had just gotten a new adjustable standing desk to help with the nerve pain in my neck and head. “Hey Theo, look at this!” I said to my daughter, making my desk go up and down and up. I made the mistake of turning to look at her as I kept my finger on the button. We heard a crack. And that was the end of my beautiful laptop.

We haven’t been able to afford to replace it. Since then, I have been using a much older second-hand laptop with a Chinese keyboard, the computer I was using before the new computer that had The Accident. It has some electrical issues and occasionally shocks me when I pick it up, but it has held up brilliantly, and a data recovery service was able to recover all the data from my destroyed laptop.

Happily, the Royal Literary Fund in the UK recently awarded me a small grant for writers in crisis, enough to just cover the cost of a new laptop. I was overjoyed. We’ve been so busy that it took me awhile to get around to shopping, because 1) I hate shopping for anything except food and 2) Montpellier is a trek and there are many people there who have germs.

But yesterday we had time between my morning scan of my heart (to see if it survived chemo) and my afternoon appointment with Dr. D’Hondt, so we headed to the Apple store. We were quick, as we didn’t have much time. I selected a MacBook Air, much cheaper than the Pro I previously used. It wasn’t in stock, so we ordered it online within the store.

When I was checking out, I paused when I got to the Apple Care warranty. It was for three years. I was plenty convinced that I needed a warranty, given that I am the kind of person capable of crushing a laptop against a ceiling, but I couldn’t help where my brain immediately went: Will I still be alive in three years? Should I be spending money on a hypothetical future? But then I thought, none of us knows for sure we will be alive in three years. We just keep propelling ourselves forward with narratives of how we hope things will go. I’m tired of fearing the future, or the lack thereof.

I clicked YES. Give me the three-year warranty. And that was my act of hope for the day.

Of course, I was also thinking that while I now have an office with high ceilings, I am still the kind of person who would find new and creative ways to crush a laptop.

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