It’s the sixth anniversary of my taking this photo, which was sometime in the middle of my first week of combination radiation and immunotherapy treatment to try to chase the tumors from my lungs. This was the gowned waiting room in the radiation department, located in the basement of the NYU Cancer Center.
(Spoiler alert: it is six years later, and there are no more tumors on my lungs.)
I think what’s so riveting to me about this photo is the absence of people. It was 5 p.m., not a very popular time for treatment, but they’d had to schedule mine in a hurry, so I went with what would work. That would have thrown our family schedule into disarray, since I would have normally been home with the kids at that hour.
As I look at the photo, memories flood back: the radiation technician who was genuinely surprised I refused to let him tattoo the spots where the beams would need to go (he gave me waterproof stickers instead). The women sitting in the waiting area with me, all of us in seersucker gowns, either trying hard not to connect with each other, or trying too hard (I was mostly the former).
One afternoon, there was a woman sitting next to me in the waiting room with the most fabulously strange shoes on, like lace-up high heeled oxfords crossed with red patent overshoes from outer space. I was considering asking her where she’d gotten them when they called her in, by her last name and first name, like everyone else, and I realized she was a very famous artist.
Another afternoon, I needed to use the restroom and there was a cop posted outside of it. A prisoner had come for her radiation treatment, and was using the bathroom before heading back to the van that would take her back to jail. I thought for a long time about those precious few moments she had to herself in the cancer center restroom, before the handcuffs went back on. The violent juxtaposition of high-level cancer care with the certain squalor to which she would be returning was too much to bear.
I think this blog is approaching its sixth anniversary, too, because Yom Kippur was yesterday, and six years ago on Yom Kippur was when I decided to skip observing the holiday in order to take stock of my new life as a metastatic cancer patient and decide what this blog would be (and wouldn’t be).
I’m still so grateful to still be here. I’m still gutted about the people who aren’t. And I resumed observing Yom Kippur, because I find it helpful, in the absence of any actual healing I can perform, to pray for the health of others. Just in case it helps.
I want to thank you for still being there, reading along. I hope you are doing fine, or as fine as is possible in a world like today’s. I will keep doing fine as long as I can. So far, that’s been longer than anyone could have imagined.
[Begun in August’s hazy heat, completed under tornado watch in September.]
August already. The ocean calls out to us. Do we need some healing salt water in our wounds? Last August, I was racing to meet Italian deadlines, trying to get work done before the office that issued my work shut down entirely for holidays. This year, I’ve had exactly one small Italian job. Thank goodness for other sources of work… still, there is much less than I’d like. Insert shameless link to my business website here.
How do you feel? I hope you are breathing easily, not depending on a pulse oximeter readout or a test result to tell you that you’re OK. Good health is such a precious thing, isn’t it? It is a fence we have the luxury of being barely aware of until we suddenly fall over to the other side of it. And now all of humanity has fallen on that side of the fence.
Of course, some have been on this side for years now, and some even their entire lives, so we’re more than happy to orient you. Basically, it turns out the place you were before was actually all just a lie you told yourself, and it was easy to sustain that lie because you didn’t know any different. No hard feelings! You’ve been living a new reality for months now. Feels like a long time; it isn’t. This is a Long Haul kind of thing.
If you are supposed to have anything to do with a school, either teaching or learning in it or loving someone who teaches or learns in one, right about now (in some parts of the world, anyway) is probably when you would be slowly preparing your mind to get back to it, or prepare your loved one to get back to it. Whether or not you should be teaching or learning in a specific location that is not your home seems to be something up for debate. I’m not sure what to say about that. Making a plan to open a school building, before there are any vaccines available, and in a country where there are sizable numbers of people who actually seem to believe the virus is something they may choose to ignore or is as imaginary as the Tooth Fairy — I’ve heard it compared to making plans to move back into the house while it’s still on fire. It would be so great if school districts didn’t need to figure all this out on their own. If there were, for example, some entity that were actually involved in the oversight of the many, many public schools in this enormous country. And, if that entity existed, that it were not headed by a billionaire with no experience or particular interest in, and in fact open hostility towards, public schools.
But I digress. It’s hard, being stuck on this side of the fence with no possibility of return, no release date. If you aren’t a Very Special Cancer Person like me — or a long-haul COVID-19 person, like some people I know — you don’t even get the reassurance of a regular battery of tests that will prove to you beyond a shadow of a doubt that you are still OK. Maybe in the future those will be as widely available as they should be, but for now, getting a test means jumping through some hoops. It might cost you money. You might not get results for a while, and the result might not be accurate and you might be needlessly worried or inaccurately relieved.
The awareness of potential impending doom is heavy, and it can crush you. The trick is how crushed you can be on a regular basis and still function. Some people swear by exercise. Others, meditation. The only thing I do fairly regularly, and which helps me, is a daily afternoon nap. This is no Mediterranean two-hour siesta. I set my alarm for fifteen minutes. Twenty if I think I might not drift off right away. I close the curtains and take this time to be absent from the day. Often, I wake with a start, thirty seconds before the alarm, sure I have slept through an entire day.
Distance learning began this week for Young J and Young A. Young J is starting high school via screen, and I can’t say I mind all that much, given that his high school enrolls well over two thousand students — ten times the size of the school he attended in Brooklyn. My day is spent checking and re-checking their schedules to make sure neither one has forgotten to show up for class, in between brief spurts of my own work or other things I need to attend to. And then comes the need to scour the website for any assignments. Come the end of the school day, I’m as exhausted as if I’d taught or attended class myself.
Healthwise, the legacy of cancer stays with me via eye drops. Three types now, to deal with the increased intraocular pressure caused by prolonged steroid usage required to deal with the iritis caused by the cancer meds — yes, the meds that I stopped taking in February of this year. (I’m sure I’ve already lost you.) I’ve now added a glaucoma doctor to my team. His name is also Dr. H. On my first visit he asked in no uncertain terms what the status of my cancer was, because he needed to know whether to consider me more like a 78 year old patient, or a 48 year old one. He doles out eye drops. I was on one kind, he prescribed an additional kind, and, when the pressure in my right eye failed to drop significantly, added a third. This new one is very expensive, but I already have a magic pharmacy number in my contacts which has coupons at its disposal.
The new drops live in the fridge and I use one every night in one eye, meaning the sample bottle Dr. H gave me should last six to eight weeks. I was strangely upset yesterday when he gave me the new drops. I had wanted it all to be over. I wanted to have an eye exam, get a new glasses prescription, and get to the fun part — replacing the frames I’ve worn for the past eight years. But I failed to realize that this eye condition is as intractable as corruption. Now I have to believe three types of eye drops will do the trick, where only two have not. I have to hope that my tendency to get less common side effects means I won’t get the redness associated with this new drop. When they dilate my pupils, which is every time I go, I always come home feeling defeated, like the day is ruined. I draw the curtains and stay in bed until it’s dark out. It’s shockingly easy to do that these days. But the next morning, when I still feel like doing that, I have to face that it’s not really the dilated pupils anymore. It’s something else. It’s everything else.
“What will we remember about this time?” people seem to be asking lately, with so much eager frequency, you’d think the end was already at hand, doctors and nurses and EMTs whipping off their masks and embracing (consensually, this time) in Times Square like the Eisenstaedt photo from the end of WWII.
Here we are skipping ahead to the end, when we’re still mired in the utter mess of it: both the actual virus, and the infectious disease we call president. Everyone wants to say they spent this time in limbo productively, admirably, attending to their own needs, their families’ needs, their communities’ needs, with the kind of attention that becomes impossible to muster after enough nights of doomscrolling long past one’s bedtime. Every day serves up a new horror.
I want to believe there will be an end to the twin horrors we are living through. Although one end date is uncertain, I want to believe, in spite of all indicators to the contrary, that the other comes on Wednesday, January 20, 2021. I’ll be spending my time until working on ways to make sure that day comes to pass in the way I hope it will, because if we are to have any kind of healthy future, what comes first is a peaceful transition to competence.