Down the Rabbit Hole

Hello friends,

Last time I wrote (in October!) I mentioned that I had moved into a harder phase of cancer. And then it went off the rails. I have developed Leptomeningeal Disease, a rare condition where cancer cells move into the cerebrospinal fluid, in the lining of the brain and spinal column. When we learned of the diagnosis, I could hear the panic in my oncologist’s voice.

For me, it came on abruptly and I was completely overcome with symptoms in November. I was hospitalized twice and suffered excruciating head pain, nausea, confusion, weakness, double-vision, cognitive issues, shaking and a general feeling of not being in my body. Once it was confirmed that it was LMD, I had 10 days of whole brain radiation in December which, thankfully, controlled the symptoms. I went daily and got snapped into my mask like a space suit for the treatment. Treatment itself was a painless short session. My biggest challenge was the constant nausea.

Radiation left me more fatigued than I’ve ever been in my life. It also felt like it scrambled my brain. I had wild thoughts, especially at night when I couldn’t sleep. Even though I knew that they were not true, I couldn’t stop them. One of the more amusing ones involved Timothee Chalamet and Greta Gerwig and a new adaptation of Little Women. I was convinced that Chalamet had to help solve my sleeplessness. This is when I began to think about Alice and her trippy adventures and wonder if I was falling down a rabbit hole. I used to look through a copy of the original Alice in Wonderland when I was a girl staying with my grandmother. I felt like Alice in those slightly disturbing illustrations by John Tennial from the1865 edition.

illustration by John Tennial

My cognitive function is still S.L.O.W. It has taken several weeks to be able to write something coherent. I’ve raised losing words to new levels. I feel like I have a big empty thought bubble above my head all the time. Fortunately, my menopausal posse of friends keep me company in conversation. What was I saying?

But radiation was effective and the painful symptoms have resolved! At this point I am doing well all things considered, working on regaining strength and trying to be patient with my cotton head, while I adapt to a new chemotherapy treatment.

After so many weeks of challenges, and what feels like regression, it was hard to know what I could trust when looking toward the future. It’s a constant balance between acknowledging impermanence and trusting the moments as they unfold.

I panicked. It hadn’t helped to hear the panic in my doctor’s voice. Dr. Google was grim and a mistake. Hospice was tossed onto the horizon for the first time. Will I get better, or have I reached a new stage of limitation? Can I make plans and if so, how far out?

Coupled with the grief of the world, this fear could sweep me away.

I remember the advice for surviving a rip-tide. First advice: DON’T PANIC. Go with the flow. Rip tide deaths occur when you fight the tide and exhaust yourself.

Over the last weeks, I have been practicing letting go. I return to the practice of finding beauty, which first requires being willing to look for it, and then to notice and make space for wonder.

Cole Arthur Riley, author of Black Liturgies writes,

It can feel foolish to pause to marvel at the stars when the world is burning.
Or to find the world beautiful when you've known it to betray you.
But wonder is a liberation practice. A reminder that we contain more than tragedy.
Beauty is our origin and our anchor.

I gather memories of beauty from this time of the rabbit hole.

• My wife who lovingly and patiently cares for me, and who makes me laugh.

• Friends and family who have come to “babysit” me so that my wife can get a break.

• My kids who came to help care for their grandma in December while she convalesced after surgery

• My dad reminding from the Other Side about the beautiful lullaby Suliram sung by Miriam Makeba when I asked for help one hard night. He used to sing and play it for me when I was young, and I found it on Spotify and played it over and over all night long. (We were always connected by lullaby. I wrote about it after he passed.)

• Head rubs. For several weeks, head massage gave the only real headache relief. I joked that if you were going to visit me, you needed to be prepared to rub my head.

• Family and friends who came and plopped themselves on my bed for a visit when I was too tired to sit.

• Gifts of food, flowers, and beanies.

• Shuttles to appointments and field trips.

• Text check-ins

• A Christmas carol sung by neighbors on our porch

• All the lovers gathered round (listen to the song of the week)

I’m still here. Cancer is still here. The weight of the world is still here. But so is beauty, and that is where I choose to live.

If you’re still here reading, I thank you. You are part of the community of lovers who help me rise.

Lots of love,

Maija

Song of the Week is Old Devil Time by Pete Seeger, a song that has lifted me for decades.

I love the image of our lovers (we are all lovers) gathering around and helping us to rise and sing. It is also an apt song for the times we are living in.

No storm nor fire can ever beat us down
No wind that blows but carries us further on
And you who fear, oh lovers gather round
And we will rise to sing it one more time

I ‘ll also include Suliram by Miriam Makeba, the song that got me through a long dark night.

You can find the complete playlist here:

Healing Happens on Spotify

Healing Happens on Apple Music