A Visit to the Pity Salon | Jan 21 2023

My First Decision About NO Treatment

I am, at heart, a big chicken. I hear a strange noise in the middle of the night and the flight or fight response gets muddled in my brain: I freeze. But if cancer has taught me anything, it’s that I don’t have to be in battle-ready mode all the time, nor do I have to hide. I can ease into awful truths one bit at a time. Eventually, I will stand face to face with the whole beast, stare it right in the eye, and say, “O.K. I see you. I know about you.” Once that’s done, I can get on with my day.

My most recent stare-down started with noticing mentions of lepto or whole brain radiation. Then, whammo, two people I know in person, and one via an online group, were dealing with it:  leptomeningeal disease, also known as LMD,  leptomeningeal carcinomatosis, leptomeningeal metastases or just lepto for short. Leptomeningeal disease is when cancer cells get into the cerebrospinal fluid (CSF) and/or the layers of tissue that line and protect the brain and spinal cord.

Leptomeningeal disease happens in very late stages of cancer. It happens most commonly cancers of the breast, followed by cancer of the lung, frequently, small cell lung cancer — particularly EGFR-mutated lung cancer (my mutations: JACKPOT!)– and melanoma.

There’s nothing that can be done to treat LMD. Mostly, the aim of any medical intervention is to buy a patient a little (very little) more time and/or greater quality of life. Sometimes there might be whole-brain radiation, intrathecal chemo (chemo inserted into your spinal column), chemo via pill, or chemo pumped directly into your brain via a specialized device. Once diagnosed, a person typically has months to live. WBRT (whole brain radiation therapy) is the treatment people I know have had. It’s very, very, hard. Very.

There’s more you can read more about LMD here or here. Here’s an article called New Hope for Leptomeningeal Disease Care.

I’ve decided if my cancer ever progresses to LMD, I will not pursue medical intervention that aims to treat.

OK, that’s settled. On to the next thing.

The Weird Moment in the Haircutter’s Chair

I had a bunch of hair chopped off the other day. The same person has been cutting it for almost 7 years; I’ve looked forward to haircuts the same way I looked forward to sleepovers as a kid. This recent haircut was the third since Covid lockdown (and cancer), and they are becoming increasingly strained. The first was the person-so-devastated-by-the-news-they-can-barely-look-you-in-the-eye experience. The second was the let’s-be-hale-and-hearty-and-not-acknowledge-anything-is-different experience. The most recent one was let’s-chat-like-we-always-did but....

It happened in an instant. She asked what had made the holiday season so hectic for me; I was randomly listing my busy-ness, including cakes (which seemed especially confounding to her — excuuuuuuse me, but this woman has clearly never truly DECORATED a cake) when I caught sight of a tiny pinch between her eyebrows– was it irritation? Sadness? I couldn’t tell. But afterwards, it was as if a wall went up, or something closed….

I didn’t think much more about it, until today, when I was walking out to the car to go see CancerShrink. I stopped dead in my tracks. That pinch in the eyebrows? Pity. It was a pity pinch. That feeling of sudden distance? That was simply pity deployed as a defensive maneuver.

What do I mean by that? You cannot feel authentically connected to someone you are actively pitying, nor can you feel authentically connected to someone who pities you. Want a sincere (blameless) way to get distance from someone and their circumstances? Just feel sorry for them.

Excuse me, but I just feel annoyed.

This is the second time I’ve experienced this. The first time, there was no subtle pinch between the eyebrows. Instead, it was a gentle (patronizing) hand, laid on my forearm, a kind and gentle tone inquiring about the kinds of things I was still able to do…. I am a very bad person; I almost burst out laughing.

Actually, it’s the third time. The very first time was when someone set forth their passionate beliefs about certain practices they followed that would (undoubtedly) save me. That time, I did burst out laughing.

Instead, how about some straightforward discussion: “Are you still dealing with cancer treatment?” is a very nice question.  How about some listening and acknowledgement, of the awfulness of leptomeningeal disease, for example. I don’t expect anybody to jump on the horror boat with me, but you could at least contemplate waving to me from shore….

Is it like, if we don’t talk about it, I won’t feel bad? Sure, because I never think about having cancer.

The weird thing is, the more silence there is around my cancer, the more invisible I feel. And feeling invisible is not nearly as fun as they make it out to be in the Harry Potter books.

But here’s something that is wonderful fun. This is our newest family member, Raven, a 2 year-old little girl. Her sister will join us in another week.

Thanks for reading. Here’s hoping something pretty great comes your way soon. With purring.