I had my umpteenth round of scans this morning (all is still well). Now that I’ve lived here for three years, a sort of routine has settled in to scan days. I do miss some things about scan day in New York — the anticipatory subway ride (when there were no delays), having my IV wrapped in a bandage for the strange six block walk between one scan location and the next, the mad dash to Dr K’s office as soon as I slid out of the MRI machine, and the fascinating images of my brain in cross section parading across the screen. I definitely miss my post-scan lunch of spanakopita and salad (or if I felt indulgent, fries) across from the hospital.
There are things about scan day here which are better — I live a ten minute drive from the scan facility. The disgusting barium sulfate of scans past has now given way to a drink I like to call “sketchy water.” Today, it was served chilled.
The wardrobe angle is where things get a bit odd. They are very vigilant about metal in clothing at Johns Hopkins. There is metal in everything these days, they insist. Even your underwear! Hence the sartorial innovation of scan pants (today they were shorts, in recognition of summer… which ignores the fact that it’s about 50 degrees Fahrenheit in the MRI room):
The full ensemble, complete with MRI-safe mask, is quite fetching:
Today the technicians had a hard time stuffing my unruly hair into the limited space for it before closing the plastic frame over my face. My ear plugs kept falling out. I felt a flicker of annoyance that threatened to turn into panic. But after twenty MRIs, was I really going to start having a hard time with it today? That was the extent of the pep talk I gave myself before sliding into the machine. All the rest of it — slight discomfort giving way over the course of 45 minutes to almost excruciating back pain, the failure of my brain to settle on a useful direction for a guided meditation, the resemblance of certain of the machine’s sonic patterns to music I’ve heard elsewhere — passed, as it always passes. Having frequent MRIs has taught me something about endurance which others learn via actual physical exertion… or by living under perpetual existential threat, which is certainly something on my mind as I read the headlines each and every day.
I’ve gotten chummy with one of the technicians, C. Today she greeted me like a friend, and said that it seemed like I’d just been there. (Four months’ time elapses differently during a pandemic.) While I was in an empty waiting room drinking my sketchy water, she stopped by to chat. She mentioned that a friend of hers yesterday told her how grateful they were for everything she does. She said, “People always just say that. They don’t realize that we all have families and homes and we have to do this.” She sounded frustrated. I can’t imagine having to put up with constant expressions of gratitude which miss the mark.
This week, a piece from the Atlantic caught my eye: “I’ll Tell You the Secret of Cancer.” As predicted, there were no secrets. It was a very handy explanation, for those who were not yet aware, that when one is facing cancer, a positive attitude and fifty cents will not even get you a cup of coffee. Any opinions to the contrary are unscientific, and potentially harmful.
I know I’ve made cancer seem like a whole lot of fun here on my blog. Time after time, this approach has helped me to find the humor in a crappy situation. Perhaps it has helped me gain some distance from the immediacy of the threat. As anyone who knows a comedian can attest, however, comedy is not typically born of a perky positive attitude. It is a technique that helps us twist unpleasantness into laughs, rueful as those laughs may be.
A week ago, I went to see my ocular immunologist, Dr B, up in Baltimore. I was consulting with her on the matter of a cataract I have developed in my right eye, as a result of prolonged use of steroid eye drops to treat the eye inflammation my cancer drugs brought on. (Currently, when I need to see clearly, I am closing my right eye.) She has a lot of experience operating on patients just like me who are dealing with eye conditions as a result of drug therapy or autoimmune conditions (I seem to fall under both of these categories, because I am actually that special).
Dr. B is also expecting a baby. She’s stopping work at the end of October for a few months. So I get to decide if my cataract is urgent enough to operate on right now, or whether it can await the end of maternity leave. Also, I get to decide whether having cataract surgery makes sense given the number of floaters I have in my eyes (also courtesy of all the inflammation). Dr. B warned me that after the operation, my eyesight will improve, and that will bring the floaters into sharper focus. I’m already swatting at them thinking they are mosquitoes. I can’t imagine how much worse that might get if I suddenly see their contours more clearly. I have a checkup with Dr. H (my local retina guy) next week. I’ll see what he says. He has mentioned in the past that there is a procedure called a vitrectomy that can help with floaters. It involves removing the vitreous membrane from your eye and replacing it. That sounds simultaneously cool… and also not at all anything I’d ever want to deal with. What I wish I qualified for is a complete eye transplant. A reset. (Unfortunately, Nurse Practitioner K told me long ago that cancer patients don’t get donated organs.)
So here I am. No more cancer. Other problems cropping up here and there to challenge my everyday existence. Also, certainty that I am lucky to be here having these problems I have. When I got home from my scans, J. had made me a delicious meal to break my fast.
It was a not-so-small, good thing. Then Young A showed up and I hugged him as my good scan results came through and I thought, but did not say, “I get to keep being your mom.” Young J texted me from drum line practice and when I told him my results, he replied, “Yay!”
I am not living the dream, but I am living a dream, a dream perhaps also once dreamt by all the people responsible for developing the drugs that got me this far, all the investigators and all the participants in clinical trials and the technicians and the clerks and the people who clean the research labs and thousands more people I’m not even thinking of. To all of them, thank you. It is a good dream to be having.
3 thoughts on “Living a dream”
Haven’t read the whole thing. Glad things are well. Love that you are sharing this. Shabbat shalom Mitchell
Mitchell Solkowitz (he/him/his) sent from my mobi
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Thanks for sharing all of this! Your shorts gave me all the King Spa feels. xxx
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As spas go, it’s pretty much the worst. However, cleaner & less scandalous than Spa Castle.