I have my latest scan results now. All is well. All is stable. And in a vote of confidence, Dr P is letting me skip my six-week checkup and go three months, until my next scans, before I see her again.
But I’m also getting a little medication reprieve: I will now take meds every other day, rather than every day. This is pretty huge. To be able to count on having regular breaks from the tyranny of a twice-daily three hour fast is very liberating. Dr P also said I’d probably start feeling better. There’s nothing to make you feel worse than hearing you could be feeling better. Right? The fact is, there is a baseline exhaustion I have been living with, a generalized sluggishness which I would love to pin on my meds. I hope that is the case.
As the gap between my crisis years of 2014-2015 and the present widen, so will the anxiety. I know that. Advertisements like to warn us, “Past performance is no guarantee of future results.”
Also, just as I started to think about writing this post, a word in Italian popped into my head. It’s a fun word, one you learn in class because it is very, very long and fun to say. And it forms part of a handy proverb:
Chi troppo in alto sale, cade sovente
Which basically means: the higher you climb, the faster you’ll fall. I’ve seen this happen. I can only hope it won’t happen to me.
There are many ways of falling, but not all are bad ways. For the next three months, I’ll be trying my best to keep that in mind.
It’s been quiet. Quiet enough that when I stop talking, as I did for many hours this week while plowing through to the end of a translation job, I started tuning in to other sounds. In this case, sitting out on the balcony with my laptop, I kept hearing loud buzzing at very close range. It wasn’t some far-off saw, part of the symphony of never-ending construction in this neighborhood. This was much closer. It wasn’t the thin whine of a mosquito, either. After waving my hand past my ear a couple of times, I stopped working to look, and I realized it was bumblebees. A lot of them. All dive-bombing the red impatiens I planted a couple months ago, which have gone wild in the rainy summer we’ve had. And me with my red hair, which bees often do mistake for flowers, right there nearby!
I had an intense childhood fear of bees, and even remember going back inside the house to change to long sleeves and long pants on a hot, sunny day when I saw bees buzzing around the roof of the porch. I saw my brother get attacked by a nest of yellow jacket wasps when I was a little older, something that nearly killed him because he hadn’t known he was allergic. Even though it took me decades to get stung for the first time, myself, I was always wary.
Having kids can make you reassess the things you’re afraid of, though. I don’t want my kids to grow up in fear of the insect world — after all, when it comes to insects, humans are outnumbered by far. While I think I am right to caution them about yellow jacket wasps in September, which is when they go a little nuts just before dying, I would like them to be able to admire a bumblebee going about its work.
And so it was that I spent the latter part of this week, crunched into the small space my balcony allows for a stool and a table just large enough for my laptop, typing furiously as I turned Italian into English, aided by the busy, buzzy industry of my new friends. The fact that I have never been much of a gardener, yet somehow managed to produce a bumper crop of whatever these guys want, this year, was also satisfying. I feel the bees perhaps brought me luck — because I completed the project I’d been working on for months, and then another one quickly showed up.
And the bees did something else, too. They helped pull me out of some deep sadness, which began when I learned, earlier in the week that a writer had lost her life to cancer. A mutual friend of ours had introduced us, and we were supposed to meet for coffee one day last April, but that day she canceled because she wasn’t feeling well. We never managed to find the time again. May her memory be a blessing to all who knew her. I’m glad I at least had the chance to know about her. And, we have her words.
I’m heading into a weekend before my next scans on Monday, with results that day and the next. I’m hoping I’ll find good distractions this weekend. Tomorrow they’re calling for rain. Not good for the bumblebees, but maybe good to keep us busy indoors (and hopefully not going stir crazy in the hive).
Facebook serves up memories on a daily basis. Every day I get a complete rundown of what I was thinking, or what the kids did or said. Every post takes on the weight of history — deserved, or not.
Yesterday, this photo showed up. Young A is sitting on a bench on a rainy day. He’s two and a half years old. I remember that day. Young J was at day camp, it was raining, and we needed to find something — anything — to do. We went for a walk in the rain, and when we got to the corner, we came upon some workers from the city drilling holes in the sidewalk to install a brand new bench.
We stood under the awning of the dry cleaners and watched them work. It didn’t take long, and suddenly, there was a bench where there had not been one before. Young A was invited to be the first to sit on it, and one of the guys wiped the rain off for him. From that day, we call it “Young A’s bench.”
I thought about this photo all day yesterday, and eventually realized why it was haunting me. That photo was taken when I was just a civilian. A mom with a toddler to entertain in the rain. My concerns were any mother’s concerns.
Eight months later, when Young A was three, I’d be diagnosed with melanoma, and I’d never again get to be the person I was when I took this photo. Although I’m much (older and fatter and slower and) wiser now, I miss that person.
Here we are in midsummer. A lot of things have already taken place (namely, Young J and Young A gone off to sleepaway camp for the first time, one back already and the other returning this weekend). I have cycled through giddy feelings of sudden freedom, audacious frittering-away of precious free time, and then the difficult readjustment to parenting mode. Arguably, we were still parents while the kids were away; it’s just that that type of parenting was exclusively sentimental and involved little more than hunting for the day’s latest photos of the boys, or sending them fun letters and emails.
I had a lot of work the first week they were away. It feels good to be getting paid on a somewhat regular basis. It’s been so long since I was paid for anything, I nearly forgot what it was like. Which is sad, because I used to have such a strong identity as a worker. I filed income taxes from age fifteen on. At the end of this year, it will be a decade since I left the comfortable, cradle-to-grave type job I moved to New York for, and since I was at that job for a decade, that means my 20th anniversary of living in NYC (which I like to call an Appleversary) approaches, too. So much to think about.
I joined a melanoma community on Facebook which is vibrant and quite wide-reaching. In recent weeks there has been a constant drip of bad, sad, and simply terrible news there. I find myself trying to negotiate being present there with self-preservation. Especially hard when the people you have identified with the most experience setbacks, or the end of the line altogether. Two very young boys lost their mother to melanoma today, and I wept when I read the news.
I wept, and then I reached for the one thing that has never let me down when I feel desperately sad — a notebook. I hadn’t written longhand in ages, and it was the feeling I needed. Not the deliberate click of keyboard keys. More of a sweeping action, one that has never failed to help me generate new ideas. And I started something. I’m not sure what it will be yet, but I will definitely fill up the notebook with it.
I have kept up with my monthly check-ins on my Seven Year Plan, the one I came up with last December upon turning 45. I am not always 100% pleased with my progress, but I am also much less stern with myself than I used to be. The temptation to measure my progress with borrowed yardsticks is as strong as always, hard to undo a lifetime of that kind of behavior, but I’m doing what I can. And I am learning that I can do a lot.
Tonight I went to see Dr. D once again. I had a few days of waking to what seemed like a Vaseline-coated lens in my left eye. The eye looked red. I stopped wearing my contacts for a day, but things didn’t improve. Finally, today, I acknowledged defeat and called for an appointment, which I was given at the unfamiliar hour of 6:30 pm. I also hauled out my eye drop collection and squirted some Prednisolone drops in the bad eye a couple of times. The instant relief diagnosed my condition even before I’d had a chance to see Dr D. Iritis again, once more, with feeling (actually, this time, with no feeling). The pressure in the affected left eye was half what it is in the healthy right eye. I can somehow see perfectly through both.
Back to steroid eye drops every two hours for a week, but I don’t need to dilate the pupil, which has me feeling strangely euphoric. I mean, yeah, I have side effects! But they are entirely familiar! And I know how to manage them myself! Also — because these side effects come from Tafinlar and Mekinist, I’ve taken the day off those! Which means I can have a snack after 9 pm! So right now I’m off to figure out what that might be, and then to watch another episode of Twin Peaks with J. A blessedly ordinary night.
We are in that tricky interstice between school year and summer plans. The children alternately delight in and chafe against this lack of structure, and today was my turn in the chafing dish. Luckily, we’re visiting family, and I signed up Young A for a couple of swim lessons in the hopes of getting him more comfortable in the water before camp starts. He’s a tough nut to crack, there’s clearly something that bothers him about swimming, but he won’t just tell anyone about it.
Young J came to the pool with us today, and while Young A had his lesson, he swam around and I think dropped his habit of swimming with fingers pinching his nose. So that was a breakthrough. In the car on the way back, I got Young A to at least agree to tell his swim teacher why he’s not comfortable, if he absolutely can’t participate. We’ll see. I think that lack of easy access to water, combined with our failure to prioritize swimming as a skill, are both at play here. (Depending on how in need of self-criticism I may be at a given moment, one or the other factor looms larger.)
Last night, after the kids were in bed, and I wanted nothing more than to go to sleep myself, but couldn’t due to timing of taking my meds two hours after eating, I sat down at my mom’s piano. A lot of the music I studied during my twelve year piano career lives here, and last night I found myself going back to a Beethoven sonata I had played in a competition in high school. The way I played it last night was a total mess. But my parents were kind, as always (and from another room, the wrong notes are less apparent, especially with the dishwasher on). I found myself fascinated with the annotations on the score, which mostly came from my long-suffering teacher, Mrs H. I didn’t exactly take her teaching seriously, not for years. I don’t know how she or I stood it. I used to record my lessons, at her request, but I rarely listened to the recordings, because of all the lectures that awaited me on playback. The silence after her asking me if I really wanted to be there (I did; I didn’t). And those dollar signs — her last-ditch attempt at a semi-fun way to get me to correct some repeated errors in the Beethoven. If I didn’t correct them by the date in question, I’d have to pay her a fine. I don’t remember how much the fine was, but I must have shaped up somehow. I played the sonata at the German Embassy sometime in high school, and received an Honorable Mention. That must have been a Pyrrhic victory for Mrs H, with the teeth-gnashing she’d gone through to produce it. (May Mrs H rest in peace.)
Recently a couple of cosmic signs have made me realize I’ve probably got to get back to the writing I’ve been neglecting for years now, the mode of expression that was my first love — poetry. It has surely been nice to have the much broader readership that writing autobiographical nonfiction in prose affords. I know those of you who follow this blog might find it difficult to follow me if I were to start posting poems here (and if I were to publish them here, I pretty much couldn’t send them out anywhere else).
So I’ll have to unfold some secret temporal fold-out in the center of the book of my life, one I haven’t gotten to yet and which may require a letter opener to slit open, and do more than one kind of writing. My writing here has taught me a lot, and I know it has conveyed a lot, and it may have (and still may) help/ed people who have been or are or will be in my boat, cancerwise.
But my life story has many, many notes, it has passages I am still trying to get right, it has dynamics that need finessing. So I need to start practicing again. And even listen to the uncomfortable silence that follows the difficult questions.
On the trail with the kids, in search of Georgia (Ghost Ranch)
Gorge-ous (Rio Grande River Gorge Bridge)
A bridge to home (Dixon)
Funnies near the exit (Meow Wolf, Santa Fe)
The kids take the cockpit
I flew on the good news of my scans to New Mexico. It was a memorable, exhausting week. We rode the rapids, we rode on horseback, we hiked, and to cap it off, we immersed ourselves in art.
It was hard to come back, and not only because our flight deposited us at midnight at LaGuardia Airport, which is hell on earth these days due to construction. It was hard to say goodbye to a fantastical volcanic landscape we’d fallen quickly in love with, to delicious spicy food, to sunshine without humidity.
Also, hard to return because it’s the time of year that everything overturns, for us and for the kids. There are less than two weeks left in the school year. The kids sense this and they start freaking out right about now. Not only restless energy, although there is that. There is also the fear of the unknowns of summer, magnified this year because they are both leaving home for the first time: Young J for a whole month, Young A for two weeks. They’ll be at the same place, which I’d like to think will be a comfort, but the way they’ve been lashing out at each other lately, it’s hard to be sure. What if Young A is in the throes of homesickness and goes for a hug and Young J refuses? (Actually, their dynamic tells me the opposite is more likely.) I can’t possibly control things like that, but I’m allowing myself to be heartbroken in advance if it does come to pass. (And I’ll be much relieved when it doesn’t.)
I have some work, so that should hopefully keep me occupied and out of trouble while the kids are away. J and I may take a short trip, but we haven’t yet made any plans. The task of acquiring and labeling 20 pairs of underwear and socks each for the boys is too daunting for me to think beyond it.
But the last label will get slapped on the last pair of underpants, the suitcases will get zipped up, and the boys will occupy a space separate from us for a time that will probably feel simultaneously endless, and not quite long enough. Just like our recent vacation. Just like life — whether it is allowed a dénouement at a typical pace, or whether it slips by more quickly, like those last grains of sand in the hourglass, getting pulled through in a hurry.
One last shameless plug for our cancer immunotherapy fundraiser: the walk is this weekend. We’d love your support. Thank you.