It is April 2nd and if you didn’t check the calendar as you read yesterday’s post, you must be worried about me! Ha ha ha!
So, to recap, I’m actually not capriciously going off my meds in favor of cigarettes. Seems really preposterous when boiled down to just that one sentence, right? I never thought I’d actually fool anyone! Least of all my caregivers. (When I go to Dr P’s office for a checkup on Tuesday, I am a little worried they will pelt me with eggs.) FYI, I don’t do “daily cognitive exercises,” either, because it’s all I can do to get out of bed, most of the time!
What I didn’t mention yesterday, because the day was given over to my little prank, is that I saw Dr D, my ophthalmologist, and the pressure in my eyes is way, way down and I am now completely off any kind of eye drops. I’d already stopped the steroid drops a month ago, and was using beta blocker drops to help lower the sky-high pressure caused by the steroid. Finally. 20/20, decent vision, can wear my contacts again. Yes, the floater is still there. It will be there indefinitely. I can deal. I feel really good for having advocated for myself to get off the steroid drops, even though I had no control over how things would go. When you’re at the forefront of a treatment that has been approved but experiencing side effects of the 1% (of patients in the clinical trial), you have to be a maverick, sometimes.
And without my daily reminder of eye drops, my meds app is no longer ruling my life as much. Feels good. I am still trying to get out from under the shitty cold that derailed my training for the big bike ride before it even started, but I’ve got time. Somehow, even though I’ve been eating very badly this week on account of my cold, I’ve been losing weight. That can only help when I get back on the bike at last.
Our Italy trip is taking shape, the calendar filling up with places we’ll stay. I told J this morning that the trip, and the bike ride that comes a few weeks before it, have suddenly raised the stakes for my next scan, which comes in late May.
Now that I’ve acknowledged this, it will be all I can do to try to ignore it. I’ve posted this poem here once before, but I’ll post again just to remind myself.
How to Meditate
by Jack Kerouac
fall, hands a-clasped, into instantaneous
ecstasy like a shot of heroin or morphine, the gland inside of my brain discharging the good glad fluid (Holy Fluid) as i hap-down and hold all my body parts down to a deadstop trance-Healing all my sicknesses-erasing all-not even the shred of a “I-hope-you” or a
Loony Balloon left in it, but the mind
blank, serene, thoughtless. When a thought comes a-springing from afar with its held-forth figure of image, you spoof it out, you spuff it off, you fake it, and it fades, and thought never comes-and with joy you realize for the first time
“thinking’s just like not thinking-
So I don’t have to think