Welcome to the Club

I didn’t want to go.

Wednesday was the first of three days of chemo with fludarabine and cytoxan, to prepare me for CAR-T, the latest and greatest cutting edge therapy to treat multiple myeloma. It’s my moonshot. But, for the first time since I was diagnosed, I'm in remission. My disease has gone quiet. Still, I’ve decided to keep going. To submit myself to more treatment. More risk. More uncertainty.

So no, I didn’t want to go. But I did.

I stepped into the clinic and almost bumped into Angela. I saw her face and melted into her arms. We embraced like sisters. In a way, we are. Angela and I are members of a writing group for people living with, or in the shadow of, cancer. We both have myeloma. Because we write and share our writing, I know her deeply. I could not tell you the details of her career, but I could tell you how her soul is doing now (of course, I won’t).

We are members of the same club, and knowing her softens the edges of a difficult, often spikey, experience.

I was drafted into the cancer club in February 2021. Like anyone who finds themselves suddenly hit by a diagnosis, divorce, layoff, death, or other unimaginable circumstance, I didn’t ask for membership. I didn’t want to belong. I tried to resist it. Really. I tried awfully hard.

In the beginning, trips to the clinic filled me with dread. I’d sit and wait my turn in a room filled with people, many of whom looked so frail and weak. It was like looking through a window at my future, a future that scared me to my core.

So, I did my best to shut it out, shut them out. I wanted to believe the road ahead held a glimmer of hope, something I could control through diet, exercise, supplements, and, oh God, my attitude. I was desperate to avoid becoming them.

I bought a book of word search puzzles, the kind where you scan a big block of letters to find words hidden in plain sight. The puzzles were small and solvable. I got busy solving puzzles from the moment I sat down, not looking up or stopping until my name was called.

I became expert at this dance of avoidance - eyes down, mind occupied, heart guarded. For months, I found every word in those puzzles. But I ignored the ones that mattered most: the whispered conversations around me, the shared glances of understanding, the quiet solidarity I was working so hard to ignore.

Avoidance was hard, exhausting work. And in truth, it didn’t keep the nightmares away. It didn’t keep tears from flowing. Fear still haunted me. I was still suffering. Something had to shift.

I read Suleika Jaouad's book, Between Two Kingdoms. It's a beautiful memoir about her five-year effort to achieve remission from leukemia (the kingdom of the sick) and the slow, painful journey back to the kingdom of the well. Her words penetrated my soul, but it was her Substack, The Isolation Journals, that became my lifeline.

Here was someone who refused to let cancer flatten her story into a tragedy. Instead, she transformed the hard, hard truth of living with leukemia into “creative grist” - raw material for art, connection, and meaning. She became my living, breathing spirit guide, showing a community of us how to alchemize our suffering into something beautiful. In her space, I found people who weren't just surviving their challenges, but reveling in the act of creating despite it - or maybe because of it.

Suleika showed me a path forward. I had lost the life I once knew and I wanted to build a new one. I needed help. So, I joined an art group and a writing group and started to paint and write my way through. I shared my work with others who held them like precious eggs.

I joined Project Firefly, a program that matches cancer patients to medical students. We’re penpals for a year, writing each other letters, unburdening ourselves and opening windows to our souls.

Giving and receiving support helped me face the truth. I was living with an incurable disease. I couldn’t go back to who I used to be, but maybe I could move forward and discover something in me I hadn’t seen before.

My relationship to the clinic began to change. We were all members of the same club. None of us chose it, but there we were. I started looking up. Making eye contact. Smiling back. Chatting.

Now, when I walk into the clinic, I see a community. My friends. Dana, one of the first nurses to care for me, spotted me Wednesday and dropped in to say hi. Shirrel, a phlebotomist who’s been drawing my blood and making me laugh for four years, is about to retire. Katarina, a practice nurse, manages details of my care that I can’t hold, and gently peels me off the ceiling when I lose my mind. She is trying to care for a parent with dementia. Nancy, a nurse practitioner, makes sure I have a chance to review results before I see my doctor. She has two young children and managing it all can be hard.

These people are more than cancer patients, more than my care team. They’re part of the fabric of my life, my story.

I didn’t want to be here. Still don’t really, but I’m here. And I’m not alone. I’m in a club.

What’s a club you never asked to join and what did you discover about yourself through membership?