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“Of course, a big part of the difficulty of living with lung cancer is that you have to be ready to die AND able to live well at every moment.”
This simple sentence captures the weird duality that is lung cancer. It’s the observation of another lung cancer person; I appreciate it for both its clarity and the wisdom it took to formulate it.
How am I doing in the readiness departments?
I think I’m pretty good in the Ready To Die category (see posts from 2021, 2022, and 2023. 🤪) In the Living Well category, I include the outdoors: bicycling, gardening, hiking. Indoors: baking for For Goodness Cakes, reading, cat-petting, soul work (meditation, gratitude-ness, church, for a touch of traditional practice.)
Now cake baking has to share the stage with a new volunteer activity. This new activity began with the most challenging cakes. These were for youth in a residential treatment program and included Mr. Clean, Baby Yoda, and the all-time favorite, a cake with black frosting. I felt deeply for the kids these cakes went to, because of their strength and resilience in the face of terrible circumstances. The kids all live with severe trauma from sexual abuse and/or exploitation. As I’ve seen this past week, they also love celebrating birthdays.
I thought about volunteering there for a long time. (I mean, if you’re reconciling yourself to death, it’s hard to feel OK with making a commitment for the future.) When I dropped off a cake last year, I heard myself ask one of the clinicians about volunteering. She hesitated. “We really don’t do that here,” she said. Then I said two words and watched her expression change: “English teacher.”
Since then, I’ve been background checked, had a full week of training, and spent some time just being at the house. And, for a little more than a month, I’ve gone twice a week, for a couple of hours at a time. Officially, I’m there to help with school assignments, but few kids I’ve met come home from school and dive into homework. These kids are no different.
The clinician and I are slowly introducing the idea that learning may not be the same as schooling (and certainly is not in this situation, given the limited amount of time and low-quality instruction the school district gives these high-needs kids.) (Don’t get me started.) I’m hoping we’ll begin to move into learning based on kids’ curiosity. Little incidents make me hopeful we can get there.
For example, I brought some reading for one kid. She read it, talked about it a bit, then she started to head off to her room. When I offered her the pages to take with her, she said no thanks. But not long after, when I went to file the pages away, they were nowhere to be found. Guess who took them? That’s a win. (Wouldn’t it have been better if she’d asked before grabbing them, when I wasn’t looking? Duh, of course it would have. But I’ll take wins no matter the size or however they come.)
There’s the world of wins and then there’s the world of miracles. Wins are lovely when you’re physically well. But I want to keep the world of miracles close, too, i.e., to go from walking 2200 steps to bicycling 66 miles.
I want to keep hold of the practices and attitudes that have quieted and deepened me. I want to fully inhabit my life, not move from thing to thing, crossing each from a list as I go. That’s the Old Way, familiar, easy to fall into without thinking– the siren call to an impossible dream of “success”, “achievement….” More is not better (unless we’re talking about chocolate.)
I just don’t know how to do this. (Talk about first world problems.)
.Cancer Is Stupid But Insurance Is Really Stupid
In other news, my prescription for the targeted therapy, osimertinib, had a little price hike. A month’s worth of the miracle medicine is now $19,160.70. Weirdly, I have no copay. I have no idea how that happened– we’ve previously paid around $850 after insurance. The insurance company claims we are in a particular stage of our coverage called catastrophic. (Such a nice ring to that, don’t you think?)
Apparently, neither they nor their calculators can perform simple addition– I cannot, for the life of me, figure out how they got their numbers. And, of course, the little chart that shows our status matches my math. So, they show two different representations of our status in two separate places on the website. Figures. You may be wondering whether I’ll be calling them. <snort> Are you out of your mind? Sitting on hold forever does not fit my criteria for living well….
Cancer Group
We meet tomorrow morning to hear how everyone is doing. The past month has been a little rough. One of us had treatment for multiple lesions on the brain. Another is on a trial therapy that made eating solid food impossible. Plus he lost his hair. I think bald heads tend to be beautiful– somehow hair just mucks up the basic architecture of head and face. Not sure how I’d feel if I were the one losing hair, of course. (Someone else in the group whose cancer recurred also lost her hair. Her motto is, “No hair, don’t care.” That’s the kind of brashness I hope to keep mustering as time passes.)
Thanks for reading. Here’s hoping you head into the day with swagger in your step and boldness in your heart.
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