Maybe I am a superhero

I know. It’s been a while. What have I been doing? Well…I went to Hawaii for my second wedding anniversary. Then, while I was there I had, you know, a brain hemorrhage. From the 4-centimeter brain tumor that had been steadily growing for who knows how long. So I ended up spending the rest of September in four hospitals, on two medevac flights, getting “awake” brain surgery, and relearning how to walk and use the left side of my body.

ambulance ridelearning to use a walker







And then I came home. I got some radiation to my brain cavity, plus two other brain lesions, plus to the lesion they randomly found on my sacrum. I did a lot of physical and occupational therapy. I graduated from a walker to a cane to no walking aid. I lost huge clumps of my hair. I went from taking 30 minutes to walk down the block to walking two miles in an hour.

I also had a couple of game nights. And went to see the Bad Plus in San Francisco. And sat in a hot tub with Mac. And started watching Sense8. And took a break from watching Sense8 to watch Stranger Things 2. I slept a lot. And I made plans to see family and friends in Southern California. I snuggled with my love. I ate so much ice cream.

I’ve learned a lot over the last two months. I was reminded, yet again, of how amazing my support network is. I learned even more about what a fabulous advocate and partner my love is. And I discovered, for the first time, that I really am resilient as fuck.

Joyful things, big and small

It’s been easier to find joy these days. It helps to have three-week stretches of time in between visits to the infusion center. And to be off the dreaded, zombiness-inducing compazine.

Mac and I have been trying to have a “summer of fun” and I’d say we’re achieving our goal. I’ve been tagging along on some of Mac’s work trips, and we’ve been scheduling long weekends to see our friends. There’s nothing Mac loves more than getting in the water, so we’ve been trying to make that happen as well.

All of this has gotten me thinking about delight — ostensibly the reason I started this blog to begin with. Despite enjoying myself more than I have since my diagnosis, I can’t say I’ve found much to delight in. Walking through museums in D.C. was actually the most alive I’ve felt in months. But it felt like a melancholy contentment. Enriching, but not delightful.

Friends point out delights to me — the amazing marquee for the Grand Lake Theater, cherry blossoms dancing in the wind, a tree stump that looks like a person’s face — and I love it, but I’m not noticing these things on my own.

Back when I was on aggressive chemo, I noticed that I had tunnel vision. On a drive to Sonoma, from the passenger seat, all I could see was the road ahead of me, and the navigation app on my phone. About halfway there, I turned my head to the right and the view was absolutely stunning. Clearly it had been for some time. I just couldn’t see it.

And that’s what life felt like in the aftermath of diagnosis, and in the midst of chemo toxicity. Managing anxiety and disbelief. Putting one foot in front of the other. I developed an armor to protect me from the world, which seemed scarier than ever. The armor helps, but it came with unintended consequences, like not being able to see the big beauty or the tiny delights.

Now that I’m several weeks into maintenance chemo, and therefore several weeks away from the extreme anxiety created by chemo toxicity, I’ve found that my peripheral vision has widened. I’m able to see beauty in what’s around me again. It’s such a relief.

But what I’m not yet able to see are the little things that once brought me delight. Still, I’ll take it. It’s good to have some enjoyment and contentment back. Maybe delight is on its way. Maybe it’s a muscle I need to relocate and exercise.

Trying to spread my wings a bit

We’re planning a trip to Los Angeles. This isn’t something that seems like a big deal, but it’s going to be the first time I’ve gotten on an airplane since my diagnosis. One thing that nobody told me about having cancer is that I would have fear. Fear fear fear. It’s like the side effect that keeps on giving.

So my birthday is coming up, and so is my love’s. And it’ll be our dating anniversary. We’re committed to celebrating lavishly since we’ve mostly been, you know, at home and getting chemo every two weeks. Still, it makes me worry.

My world feels smaller now that I have cancer. I worry a lot. I worry about leaving the apartment. I worry about getting from point A to point B and back again. I worry about money. And health insurance. I worry about slavery and colonialism. A lot. I worry about earthquakes.  I worry about this trip to Los Angeles.

Let’s all agree that getting a metastatic cancer diagnosis is a trauma; I worry about another trauma. How will I cope if something else happens? Some of my worries (e.g., earthquakes) are founded. Some of them are a little more far flung.

I’ve been trying to work with my fear and worry. In therapy, it’s a primary point of discussion. I’m trying to invite the fear in and make it a welcome part of my emotional landscape, rather than fight against it. I’m trying to remember that my diagnosis isn’t that old yet. It’s only four months old. Four months of fear. Well, one month of being really fucking sick. And then three months of fear.

I’m hopeful that I’ll grow out of the fear. That it’s part of this “phase,” whatever that means. I want to get out more. Take in more delight. I want to live in the bigger world.