Part of the THIS IS THE MOMENT series.
January 22nd, 2021
I had to look back through THIS IS THE MOMENT to see how long I’ve been away, and was shocked to see that I last wrote to you in November.
I’m so sorry about that.
Do you believe in jinxes? Yes, I’m serious. Do you believe that words uttered can have the effect of toppling one’s wild and precious life?
In my case, it’s about a happy, uplifting appointment at the CHUM I had in early December with Dr. Aubin and a resident who was attending her, and also with my beloved nurse, Chantal.
During 2020, I received chemotherapy every two weeks from January to August, with no breaks at all—a gruelling experience, but one I thought was worth it because I knew that late August would mark the end of the two-year clinical trial I had signed up for. It meant that I would no longer be receiving Nivolumab.
When December arrived, my body had reacted so favourably to the research protocol: I looked well. My weight was super stable. My bloodwork was almost always really good. In the examination room, we were all smiles. Enjoying this happy moment, Dr. Aubin turned to the resident who was with her that day and said:
“Mme Payette est une patiente qui va exceptionnellement bien .»
(translated : « Mrs. Payette is a patient who is doing exceptionally well.”).
Dr. Aubin had even convinced the sponsor of my clinical trial to preserve my status as a research patient, because my data was valuable as long as I stayed the course and received Folfox.
I smiled. It was one of those moments in a cancer patient’s life that’s like a cloudy sky opening up and revealing a blinding ray of sunlight.
I felt lucky. I felt unburdened for a few brief minutes. I felt…weightless and hopeful. I allowed myself to feel charmed. Blessed. And inside that ray of light, I even allowed myself to think: maybe I’m one of those people whose tumours just stop growing.
I carried that feeling around with me for a while. I shared it with my family, and I shared it with my mum, who, at 85, and trapped inside her house by COVID-19, was in need of good, happy news. I’m okay. All is well. The slightest of white lies from daughter to mother.
But it’s not good to get ahead of one’s self. I should have known better. I should have taken some positivity away from the doctor’s encouraging message, discreetly, and then made sure my feet were firmly on the ground before continuing treatment.
What concluding the infusions of Nivolumab has allowed me to do is learn from my body, and begin sorting through which medications were and/or continue to be responsible for certain side effects. For instance, I think I can confidently say that Nivolumab was responsible for the muscle weakness and joint pain that had been increasing for months, because since last August, these have subsided and I can move and squat and do physical work almost painlessly now.
Still, I should have known better than to escape into believing in magical outcomes, because the need to live outside of cancer, even briefly, left me vulnerable when, in sync with the pandemic, I was hit by unrelenting waves of side effects.
* * * * *
Throughout last fall, my eyesight worsened. Not only sunlight, but even lamplight burned my eyes. If I had sprouted fangs and begun hissing, I couldn’t have acted more vampiric. It was crippling. Concerned and cautious, Dr. Aubin requested an appointment for me at the ophthalmology clinic, my third since I became an oncology patient. It was booked for December 18th.
Meanwhile, a second problem had been building momentum: for weeks, I had been experiencing spasms in my right trapezoid muscle—a large muscle that starts at the neck, branches out to the shoulder blade and reaches down to the middle of the spine. The cramps had been worsening and were nearly constant.
On the 18th, when I was called to wait in the ophthalmology examination room, on a chair designed to keep you still and straight-backed while the doctor places a treelike apparatus of lenses, lights and supports in your face, my back spasms had become so fierce that it was as though I was being zapped by a taser over and over and over—as though electrified tentacles were firing into my back.
The resident doctor arrived (you always see the resident first), and spent a long while asking me questions while he blasted light into my yowling eyes (if eyes could yowl, that is). After a period of uncomfortable silence interrupted only by requests to “please try to keep your eye open” (futile), the resident physician said: “Mais Madame, vous avez un trou dans votre oeil!” (“But Madam, you have a hole in your eye!”).
What on earth could I say? This didn’t sound very medical to me and I had no idea what he was expecting me to say…though the fact of my being there in that chair spoke for itself, I thought…
I realize now that what he had read in my file—something like: Patient complaining of photosensitivity in both eyes—didn’t prepare him for the gravity of my situation. After all, this had come up twice before in the first year and a half of treatment, and both times, I’d been sent home with a list of over-the-counter eye drops that I was told should do the trick of moisturizing my eyes. That information sat in my file, and no follow-up was ever booked by any of the ophthalmologists I saw.
Off he went to get the ophthalmological surgeon, Dr. Louis Racine (remember that name—he’s brilliant). When the latter entered the examination room, I was still seated in the dark, besieged by back spasms and slowly retreating into shock. He immediately set to work, and just as I was about to ask him something, he said (in French): “Madam, I’ll ask you not to talk. When I’m done I’ll answer every one of your questions, but for now, I’m trying to save your eye.”
How can I explain what it was like, sitting there? When I left the house that morning, it was with the expectation that I probably had a blocked tear duct, caused by the construction going on at our house which had sprayed so much plaster dust everywhere. I thought this because my right eyelid had swollen a few days previously, and my eye was constantly leaking tears. I had been distracted by the back spasms that were getting worse.
And this same Thursday was also the day when Cindy, a beloved family friend, was moving in with us, into the addition the builders had just about completed. Both she and Simon quite literally had their hands full and in any case, because of the COVID lockdown, I was still not allowed to be accompanied to the CHUM.
Shortly after, Dr. Racine informed me that both of my corneas were in terrible shape, so dried out that the right one had perforated, and the left one was on the brink of sharing the same fate. I was dangerously close to becoming blind in at least one eye.
Faster than I was able to process, I found myself in a different room in the ground floor clinic, lying on a gurney. A different resident was attending Dr. Racine and it was clear by his hyper deferential manner, that Dr. Racine (though young!), had his respect and a lot of clout.
What was done to me that day was this:
As I lay there, fully conscious, afraid that my back spasms would make me move despite my best efforts to stay immobile, Dr. Racine cut through the surface of my cornea, saying “Ne bougez pas” (“Don’t move”)—all the while giving the play-by-play of his actions to his colleague—removing the useless tissue and closing the hole by gluing a temporary contact lens over it.
ART: “Breathe”, Sara Young
I’ve seen dogs and cats who are usually filled with kinetic energy go docile and still as stone when taken to the vet. I understand them. I have rarely felt so vulnerable. My situation unravelled so quickly, it was all I could do to keep myself together and not cry. I kept quiet. I made my life at that moment into the smallest, most stripped down existence possible.
And trust in this man who had inserted into my right eye a lens with a bright blue fake pupil that made me look like a cyborg. It was scratchy and irritating. He covered it with a protector and then we went back toward the examination room.
Minutes after, he sat at the computer saying (always in French): “No, not Saturday…Sunday? No…Okay Tuesday!”. Then he turned to me and said: “Next Tuesday, I’ve booked you for corneal transplant surgery. You’re going to be okay, you know.”
Or something like that. And then he put his hand on my shoulder and said: “With everything you’re going through, you could have done without this, couldn’t you?”
And instantly, I felt like a woman, like a person, and I was flooded with a sense of relief and gratitude.
The transplant was done as planned, on the following Tuesday, with my son Jeremy parked in the CHUM basement waiting for the call that would allow him to come and get me. I came so close to blindness.
* * * * *
Since then, I’ve been getting a big fat dose of what it’s like to live with a single functioning eye; how it throws off your ability to judge depth and distance. And I’ve discovered that there is a sympathetic link between our eyes, so that when one is burning and struggling to stay open, the other tends to do the same thing…
I’ve had my first Christmas baking experience with limited vision. I’ve become adept at getting 4-5 ophthalmic medications to drop, bullseye, right into the centre of my eyes (yes, BOTH eyes because my left cornea was just at the point of tearing, too).
Not long after, my back spasms reached a level of such intense pain that for most of January, I’ve been taking anti-inflammatories, more powerful muscle relaxants, short-term pain control to block the signal between the muscle and the brain (or it might become a permanent pain pathway), in addition to all of my eye meds.
The people at the pharmacy all know my name. I get great service.
* * * * *
What caused the destruction of my corneas?
It seems likely that it was a chemotherapy drug, because I had never had any such issues before, and they only appeared after treatment started.
I’m scared, because even as I try to do everything I can to help my eyes to heal, I am still ingesting the poisons that have damaged them. When I saw Dr. Racine this past Monday, he was disappointed in the slowness of my eye’s healing. I’m now wearing a contact lens over my right eye, in the hopes it will speed the healing of my cornea. Otherwise…Oh, never mind. You know enough.
And what of the muscle spasms?
Well, three days ago, I went back to the CHUM (the day after I saw Dr. Racine), but this time to Nuclear Medicine, on the 8th floor, for a bone scan. The entire procedure takes 4 hours.
Dr. Aubin should have the results when I see her next week.
* * * * *
So? Do you believe in jinxes?
I’m still inclined to say no, even though I am definitely NOT doing exceptionally well.
I have missed reading terribly (but recently, I’ve been able to).
I have missed writing terribly (but today I’m diving back in with a vengeance).
I miss seeing friends and family (even if only with one eye) terribly. But that’s COVID 19.
But I don’t think I’m jinxed. Not for a minute.
I feel so grateful to modern medicine and to the health care professionals who have steered me through so many dangers and threats.
I am grateful for my eyesight, fragile though it may be.
I am grateful for Dr. Aubin, Chantal, Dr. Racine and all of the nurses who work on the chemotherapy floor.
I love my family, my relatives, my friends –near and far.
I LOVE THEM.
Maybe BREATHE, ACCEPT, BREATHE, ACCEPT, is the very best thing I can do.