I’ve spent five years here on the blog navel-gazing, as it were. I introduced my seven year plan here, and I just completed my reflections on year three of it. As a plan it doesn’t stand up to any rigorous external testing. I think I just decided that year four of it will be entirely conceptual and unspoken.
I’ve been meaning to post here for at least a week, because I’ve been back on prednisone for a week now. The ocular toxicities caused by Tafinlar and Mekinist (my former meds) and/or Braftovi+Mektovi (my current meds that I am on hold from taking) have extended to optic neuritis (swelling of the optic nerve), which could lead to permanent vision damage if not dealt with. So once again, I am off the cancer meds, on steroids, and hoping that the cobbled-together approach of retina specialist Dr H (who finally got off his ass last week and reached out to his network and realized a former colleague of his co-authored a paper about the toxicities of these types of targeted therapy), and oncologist Dr L (who is kind of on my shit list at the moment for giving me the impression that it would be fine to start tapering off steroids as soon as I started them — which turned out to be contrary to Dr H’s feelings on the matter).
How is prednisone this time around? As sneaky as always. A week in, my face is beginning to show signs of the moon-like contours it takes on, and my sleep patterns are predictably trashed. It is starting to feel normal to wake before it’s light. The kids are surprised to see me up and about before 7:30.
I have some of the steroid rage, but it seems to be largely channeled towards one particular task that lends itself to obsessive repetition: learning to chant a significant amount of Torah in preparation for Young J’s upcoming bar mitzvah. I haven’t read Torah in a number of years, and certainly not thirty verses of it! So I’ve been practicing for hours, in a kind of fever dream, establishing connections between the text and the melody that only exist within my brain and possibly would not survive going off prednisone. If a God exists and is listening (take all the time you need to ponder that, I’ll be here when you come back), then that God must be very surprised to hear me so completely immersed in this one small section of the Torah.
So now, I am secretly hoping I will still be on steroids through the end of the month. The weight gain, so far, isn’t happening, because I’ve been vigilant about eating for the past couple months, and am trying to keep it that way.
In scans news, I had a good result to a CT scan last week, and have a brain MRI awaiting me at the very end of the year. I am continuing to be, in my own parlance, a “long-term remitter.”
So, I look ahead to the bar mitzvah that is coming soon. I look back towards the entirety of 2019, the very first full calendar year that elapsed without my father in the world. And I realize that to get through such a momentous rite of passage for my son and my family without looking like a bedraggled, snotty mess, I need some tactics, some techniques for keeping the tears at bay. I turn to one of my two “secret internets” for advice. Some parties say, “Why fight the tears? After all, you didn’t think you’d be here.” (Cue TEARS WHILE PARTICIPATING IN A DISCUSSION ABOUT HOW TO STOP TEARS). But then someone quietly discloses that they have a way. A way that sounds counterintuitive, but which I am finding is actually working. You must smile. Hard. With your whole face but especially with your eyes. And I’ve been practicing, because life basically presents opportunities for me to dissolve into tears on a daily basis. Turns out it can work. It does something to your tear ducts. It is hard work but perhaps worth it not to have smeared mascara and a desperate need for tissues that I never seem to have.
Of course, my practice sessions have often been around the kids, who find my suddenly-smiling face unfamiliar, horrible, and amusing, and now take to chanting “creepy clown face!” just as I am trying not to cry. Sometimes it makes me laugh. This morning, before Young A left for school, he brought me the dog-eared Beatles book with the fallen apart binding which my brother G gave me for my seventh birthday, and summoned me to the piano to sing “Let It Be” while he played it for me. It’s hard to sing when you’re forcing a smile and your kid’s face is beaming up at you as he bangs the chords loudly over your voice. I eventually erupted in a sobbing guffaw, release and relief oozing from every pore, because damnit, it’s my birthday, and I’ll cry while I laugh and sing if I want to.
“I am gonna make it through this year if it kills me.”