Cancer and my people.

So, I finished the book. And I am sitting here in my quiet living room, all 3 dogs fast asleep on the sectional sofa where I was just sleeping with them until about an hour ago. I’m thinking of the talk I’m supposed to have with David later. And as for the book? When I closed it after reading the last page, I thought, “I really hope she doesn’t die.” I mean, of course she’ll die someday. I just hope it’s not soon, and not of cancer.

And I couldn’t help but think of Halle and Autumn. How did I end up with 2 best friends whose daughters ended up with rare, serious, aggressive cancers as teenagers? Autumn has already outlived her initial prognosis, but there is heartbreak there. She’s decided her mother, my very best friend in the entire world, is toxic and cannot have a relationship with her. I don’t know why. I can’t understand. My friend is broken over it – absolutely gutted. And I can’t do anything about it. Can I? She asked long ago for none of us to mention anything about it to Autumn, and we’ve respected her wishes. But I don’t know how much longer I can do it.

And then there is Halle. And I think, please don’t let our luck run out. Please let there be a miracle. Please let her dad, who lost Halle’s mom shortly after her birth, not lose another woman who he loves with all his heart. I think how hard cancer must be on their whole family, and how they probably don’t let us in on everything. And how much I love Tina and how amazing and wonderful and just simply THERE for me she’s been through Aaron’s illness and hospitalizations. 

Life is so hard and we’re all trying our best, and sometimes it seems so cruel that some seem to be able to sail through life and others, well, we scramble and scrabble and still don’t make it to where we want to. 

Notes on Between Two Kingdoms

Originally Written March 18, 2022 6:37 a.m.

Notes on Between Two Kingdoms

I’m reading a new book, Between Two Kingdoms, by Suleika Jaouad. It was a birthday gift from Joey (I had asked him for it). I came to her by accident; I’m a big fan of her partner, Jon Batiste. I love seeing him on Stephen Colbert’s show, and I’ve got his last album almost memorized. Somehow Suleika ended up in my Instagram or Twitter feed, and I was immediately curious. Her leukemia had relapsed and she was due for another bone marrow transplant. I have even subscribed to her Substack – the one you have to pay for – and loved it. Her writing is amazing; her writing prompts, useful and eye opening.

I’m to the point in the book where she’s just begun her 100 day road trip, several months after her final chemo session. She described how difficult it was to transition back to the person she was…except not so much difficult as impossible. And I started thinking about my life as the mother of a sick boy. Not terminally sick, no – but always dealing with his body betraying him. Some of the betrayals are just painful, annoying, or humiliating (maybe “just” downplays it too much; I don’t know). But some are dangerous and life-threatening. And the selfish part of me wishes for the former because the latter brings the possibility of losing him. That’s something I can barely stand to think about for very long, even though I have, many, many times.

But it has changed who I am. I remember years ago reading a post of one of my stepdaughters talking about how much they admired their mother for always making fun in life, taking chances, being spontaneous and all of that. And I felt a little bitter – that I used to be that way, before being the mom of a chronically sick child took it away. And I knew maybe it was a terrible way of looking at it, that I made choices, but I didn’t see any other option. My life was about keeping him alive and as well as possible, and that ruled out a lot of spontaneity. Because our version of spontaneity was medical chaos – that is what uncontrolled epilepsy IS. 

But he is now 19, to be 20 this year. And his health is better than it was, though the seizures aren’t gone. And I don’t who I want to be now – or even, maybe, who I can be.