It was a longish, shortish kind of day. The kids get out of school at 1 p.m. on Fridays in the winter, due to the early start of Shabbat. So I can’t count on getting much done on Fridays, unless I have every moment from 9 a.m. to 1 p.m. to myself, and even then, it takes motivation.
This morning, I had about a half hour. I dropped the kids off at school, having fought with Young J on the way there about something I later apologized to him for. (Nine year olds tend to appreciate that, and he did.) So I guess I started the day off kind of badly, came home and thought about all of the things I wouldn’t be doing today, and then had to leave to hit two doctors’ appointments back to back and, as it happened, across the street from each other.
First off, I had to check on how my eyes are doing. They have traveled a long road since I was a kid and had the best vision in my family. I didn’t need glasses for distance until high school, and even then, at first I asked my teachers to press harder with the chalk on the board. I was too vain to wear my glasses all the time in college, so I learned to recognize my friends by their clothes, and then someone would screw things up by getting a new coat or something. Then I discovered contacts, and glasses were dead to me for quite a while. Pretty much until last year.
My eyes are just the latest victims of the random side effects caused by my cancer medications, which (as longtime readers will remember with a shudder) have also included severe colitis, and also a weird thickening of the skin of my footsoles. The eye thing has been the most difficult to get a handle on, though, because ocular side effects occurred in only about 1% of patients in the trial. Meaning there is very little knowledge about how to treat these side effects. Dr P and her staff have been immensely helpful with other side effects, but when it comes to the eye stuff, they really don’t have a clue. Dr P said she’s only had one other patient experience something similar to what I have, and it presented totally differently.
When the eye problems were new, I was gung ho about finding the latest medical literature to educate myself and my doctors about it (I found one recent paper, and printed out for the retina specialist I briefly saw). But now – at this point, I’ve been dealing with this crap since last August or September, and I’m just tired of it. I want someone to TAKE CHARGE and fix it.
My vision isn’t bad, necessarily – I was even able to leave the house without glasses the other day, by mistake – but I have this strong need for things to just be all right again. And it’s a slow process. And my ophthalmologist, Dr D, is trying hard to figure it all out, but it’s a tricky situation. Right now, the pressure in my eyes is elevated. This is a result of extended use of steroid eye drops. I have been using steroid eye drops to manage the side effects from my cancer medication (which gave me three cases of iritis before we got it under control). It’s a domino effect which I hope doesn’t keep tipping more dominoes, because I don’t want to imagine what’s next (the drops I use to lower the pressure in my eyes causing temporary blindness, perhaps?). I came home with a new bottle of drops, dark blue cap this time, and a new regimen which decreases the steroid drops even more (even though Dr D was very hesitant to do so).
I also took the time I spent in the waiting room to go through the thick stack of bills from Dr D and figure out if any of them were legit. His assistant called their billing office (which is closed to calls from mere mortals on Fridays) and helped me straighten it all out. My balance of $210 was, in fact, zero. With that mini-victory I walked tall as I strode across the street (well, more like picked my way through paths shoveled in the filthy ice and gaps in parked cars) to Dr A, my dermatologist. I was too early, though, so had about 40 minutes to kill. I hit up Trader Joe’s, which is a rare treat, because it’s in a part of Brooklyn that is too inconvenient to drive to, and the bus there takes too long. Also, Trader Joe’s to me is the sole province of snacks that sound healthy but are really just junk. I went in there determined to buy only ingredients for the quiche I planned to make tonight. I found mushrooms and fresh thyme, but the fact that they didn’t have any frozen pie crusts threw me off the rails. So I wound up with my two quiche ingredients and a bag bulging with potato chips and two boxes of cookies. Yay, me. At least I had the decency not to start eating cookies in the waiting room, or on the subway.
Back at Dr A’s, I waited a bit longer, and watched the unctuous pharma reps come calling. I see them at Dr P’s office all the time, dressed to kill, and always projecting the aura of being both deferential and unyielding. It is always interesting to see who gives them an audience and who doesn’t. I think Dr A gave them three minutes.
I was just at Dr A’s office last week for my body scan. Having metastatic melanoma doesn’t disqualify me from those. If anything, they are even more important now, since another possible side effect of my treatment is – what fun! – possible skin cancers (non-malignant ones) popping up. Last week everything seemed fine. I had no particular concerns. But, Murphy’s Law, the morning after my visit to Dr A, I looked in the mirror and noticed a certain freckle on my forehead. How that one of the approximately two billion freckles on my body asserted itself, I will never know, but looking more closely, I saw it was a freckle-colored mole, with some hairs sprouting out of it. I wondered how I’d missed it. I wondered how Dr A had missed it. And after hesitating for a couple of days, I called for another appointment.
It was nice not to have to don a gown today. The appointment was lightning-fast. Dr A came in, saw what I had, and decided to cut it out, all in the space of about two minutes. I was sitting in the chair, and it jerked up and out in every direction until I was lying down, closing my eyes for the jab of the lidocaine. I did fine. I’ve been through worse at the dentist during a regular cleaning. I felt Dr A’s hands near my forehead, but didn’t even hear a snip or feel any tugging at my skin. I have the tiniest bandage just above my eyebrow. Sudden surgery.
I rushed back to wolf down a slice of pizza and then get the kids. I felt tired, so tired, like I hadn’t slept in years. My legs were leaden, my eyes were tired. When we got home I basically collapsed for several hours. It was nothing physiological, I don’t think. It’s just… The Weight. Now I have two unknowns pending – my mammogram/sonogram re-do next Monday, and now, waiting for the results of this skin biopsy. And then of course I need to schedule my next MRI…
But first, a weekend arrives, and just in time. A hectic one, but one that includes some time off from the kids, which, particularly at this point in Young A’s developmental weirdness (random and shrill outbursts at the slightest thing), will be welcome. Hope you have a good one too.
6 thoughts on “It’s all a blur”
Have a relaxing weekend. Hope the other tests also go well.
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What kind of cookies? ox
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The oreo kind, and the cookie butter shortbread. The problem is we already had three or four other kids of cookies in the house.
I hope all turns out well, even the cookies.
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If there are cookies, how can anything be wrong? 😉
When I was in High School I wanted contacts and my mom didn’t think they were good for young eyes and refused. So I learned to recognize friends by their walks. It’s a talent I still have! Not a bad thing!
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