That time I woke up and found myself staring at a radiation gun

Honestly, when the best news that you have to share is, “It turns out, I didn’t have a stroke, probably!” it’s not been the best week.

WhacAMole

The whole thing probably started at the end of September. That’s when I had my last brain MRI. There’s this thing that every cancer survivor knows about called “scanxiety,” and that’s the feeling of unease that comes over you when you have to be scanned for new signs of cancer. My usual way of dealing with scans is to dissociate and tell myself that there isn’t anything there that wasn’t there before, but for some reason I was extra uneasy about this round of scans because it had been too long since I had gotten bad news–not especially functional, I know. Anyway, when the nurse from my oncologist’s clinic called and wanted to set up an appointment to talk in early October, it didn’t come as a big surprise. The scan, it turned out, showed a new tumor in my cerebellum and two tiny, tiny tumors in my brain stem, where you really don’t want tumors, apparently. The good news is that there are some excellent developments in radiation therapy, and now we have radiation robots that are as good as surgery, offering cyber-knife and gamma-knife, if only one’s long-suffering husband and friends are willing to drive one to Hamilton for the treatment. What a time to be alive! And so that is how I found myself in Hamilton for treatment the week before last.

The picture above shows the scene that awaited me when I got off the elevator on the second floor of the Juravinski Cancer Centre in Hamilton. I do not recommend sending any patients to a place that has a big sign that says, “Supportive Care.” For one thing, as a doctor friend pointed out, all care should be supportive. For another thing, for me, “supportive care,” is a euphemism for palliative care. But the doctor was young and enthusiastic. I quickly agreed to come back for the new scan and the appointment to have my face fitted in a new plastic mask to keep my head still during the radiation treatment.

And so I was scheduled for 4 radiation treatments. I did 3 that last week of October, and I felt pretty terrible each time, coming home to moulder on the couch and watch tv. The radiation technician assured me that I shouldn’t be feeling symptoms so quickly, and it must all be in my head. Now, I’ve gotten through a lot by just breathing deep and shutting my eyes–going under for surgeries, countless IV placements, MRIs and CTs, accessing my port-a-cath with a big old needle, spinal taps, etc–but that moment of waking up from a nap to find myself face-to-face with a big radiation gun pointed at my face was up there with the weirder of moments. It probably wasn’t pointed at my face as much as it was pointed at my brain stem, but still.

I had a normalish Saturday and then collapsed on the floor on Sunday morning. I had been feeling weird and went to go lie down on the couch. Next thing I knew, I was on the floor, and The Historian was trying to help me up, having hit my head and lost consciousness on the way down. I helpfully said, “Nwaaa! Nwa! Ma jouwnawu!” R helped me onto the couch, which I was clutching at and told me to look at him, but I couldn’t keep my eyes open. I was hot and cold at the same time and clutching at my fleece. La Neige held my hand while R called the ambulance because I couldn’t walk to the car. The Prophet hovered anxiously for a while and then disappeared. In just a few minutes the ambulance arrived and the paramedics decided to take me to the hospital across town with the excellent neurological ward. I got to be on the stroke protocol! They tried to put an IV in in the ambulance, failed thanks to my tiny veins, and plopped me into the CT when I got there a few minutes later. It turns out that the CT was not conclusive, and I had to stick around for the MRI. The symptoms I was feeling were not to out of the ordinary for someone getting high doses of radiation to a sensitive and small part of the brain, but they were not typical or a best-case scenario, either.

This was the beginning of 2-3 days in hospital. It wasn’t so bad, but I did have doctors and nurses coming around on a regular basis to assess my progress. I had double vision and slurred speech. The speech pathologist put me on a special diet because my swallowing was not great. I could not read or speak or drink tea – OMG, who was I, even?

R brought the kids to visit every evening, and that was nice. In fact, their cuddles made everything better, as you can imagine it would. On Tuesday evening of last week I got to go home. My parents were kind enough to drive up on Monday, and did everything they could to take care of the kids and make sure that I was comfortable. I am mostly better, although I can’t read much and my speech still sounds pretty terrible. I went home on increased steroids, and the MRI seems to show that I did not have a stroke, so, again, great.

It’s been a tough week for all of us, and I am still shaky from all of it. I went to see my medical oncologist yesterday, and he assured me that I am in the best hands that I can be, so I went back to Hamilton today to get my last dose of radiation. That was tough, I even came home with my radiation mask as a souvenir.

I cried in the parking lot and even during my last radiation session, after the technician assured me that crying would not get in the way of the radiation. Now, probably at least half of you who have managed to read this far are thinking, “You’re allowed to cry every day, if you want to!” But it’s a funny thing, it doesn’t actually make me feel better, so I don’t do it all that often. It’s just all so much to put my family and friends and body through. It feels like this is not supposed to be our lives right now. It reminds me of The Bright Hour, the memoir by Nina Riggs about her experience with breast cancer. I’ve written before about how comforting her beautiful prose is for capturing this difficult experience and her amazing attempts to be herself through all of the horror of it, but there is something else, too. And that is the feelings of sadness, of shock. of betrayal, that lurk beneath the surface as you read. She doesn’t come out and say it, but it’s a difficult road to be on, and not one easily put into words.

What we read together

It’s not every evening, but as often as we can – maybe once a week and maybe several nights in a row – the four of us sit down together on our old beige couch to read a bedtime story. This usually happens around 7:30, when the kids are ready for bed.  The choosing of the stories is a pretty big deal, and once the novel is chosen, we all commit to it (to the extent that I have yet to complain much about the Rick Riordan one that we are currently making our way through). We read one or more chapter a night.

Our first family novel was probably The Mysterious Benedict Societ by Trenton Lee Stewart. At the time, I thought that The Prophet was too young to understand the novel — he used to need a small toy to fidget with during story time — but he would periodically pipe up to remind us of the key facts from previous chapters that we may have forgotten. I can’t count Charlotte’s Web as our first family story because it was only 3 of us reading, even if it did cause La Neige to become vegetarian for the rest of her life, and even if it was one of very few books that caused The Historian to cry when reading the last chapter.

Speaking of crying, my favorite book of storytime, perhaps of all time, is The Graveyard Book, by Neil Gaiman. It’s based on Rudyard Kipling’s The Jungle Book.  To those who have read the source material — that would be The Historian and La Neige — Gaiman’s version is a huge improvement. It’s about a boy whose family is murdered by The Man Jack, so he toddles into a nearby graveyard and is adopted by a family of ghosts. Over the years, he learns to turn himself invisible, yearns and fails to make friends with normal living kids his age, wards off demons, participates in a highly memorable danse macabre, and eventually walks away from the graveyard. The last few pages were so moving that we had to pass the book over to La Neige or we couldn’t have finished it.  Gaiman’s writing is extremely vivid without being showy, and he has a devastating eye for detail. I was not prepared for how much this book affected me.

At some point, it became clear that family story time was “our thing,” and I started collecting the books that we read on one shelf in our living room. I’m not quite sure of the order, since the presence of series’ will tend to mix everything up, but I think that we’ve read:

  • The Mysterious Benedict Society series by Trenton Lee Stewart
  • The Incorrigible Children of Ashton Place series by Mary Rose Wood
  • How to Train Your Dragon by Cressida Cowell
  • The Graveyard Book by Neil Gaiman
  • The Girl who Circumnavigated Fairyland in a Ship of her own Making and The Girll who Fell beneath Fairyland and Led the Revels There by Catherynne Valente
  • Watership Down by Richard Adams
  • Magnus Chase and the Gods of Asgard by Rick Riordan
  • and, of course, Harry Potter by J.K. Rowling

In the olden days, I think families gathered around to read together. It takes something that my nerdy family loves, which is READING, and makes it a social activity. We have giggled together at the antics of Lady Constance of Ashton Place; and we have debated around the dinner table the fitness of Stewart’s mind games or Harry’s character as the Chosen One. La Neige has decreed that since we started reading Harry Potter when both she and Harry were in First Year, we read one book a year. This means that we still have the last one to go. We may break with tradition and read two Harry Potter books in one year. This would demonstrate how extremely flexible and fair-minded we are.

For a while, The Historian and I would trade the reader role back and forth, but then I got too sick and tired and he did all the reading. Good thing he’s a great reader and has an excellent Hagrid-Scottish accent. I have been known to fall asleep during story time and had to go back and reread the end of Harry Potter and the Half-Blood Prince, but miraculously, the four of us still fit on our compact beige couch.

Yoga and the death of a pig

I sank into a chair and sat still for a few minutes to think about my troubles, and then I got up and went to the barn, catching up on some odds and ends that needed tending to. Unconsciously I held off, for an hour, the deed by which I would officially recognize the collapse of the performance of raising a pig; I wanted no interruption in the regularity of feeding, the steadiness of growth, the even succession of days. I wanted no interruption, wanted no oil, no deviation. I just wanted to keep on raising a pig, full meal after full meal, spring into summer into fall.EB White, “Death of a Pig”

Yesterday I tried to go to a regular yoga class at noon. It was the kind of hot yoga class that I used to go to every day without much of a second thought, you know, in the BC (Before Cancer) days. I should have expected that the class would be full of beautiful, fit university students. the instructor was like, “Okay, you’re in a plank. Can you raise your left foot? Now can you raise your left hand? Side plank time!” Then there was a sequence that involved going from chair pose to eagle to toppling tree to crescent moon to standing splits. At this point, it’s worth mentioning that I hate crescent moon more than anything, and it took me decades to even attempt it because, even at my most fit, I thought it was a cruel joke. Now I will attempt a standing split with the knowledge that it will never be pretty.

Just the day before I was at the downtown Y doing “chair yoga” in a dim room in the basement, where I was the youngest person by at least 20 years. And I won’t tell you that it was easy. “I think that chair yoga is as intense as the real thing,” Sue, my bright-eyed fellow-cancer sufferer told me chipperly in the Y locker room, “I love it!” So I went to chair yoga, and got to take a load off of my left foot, which is sprained for reasons that I need not go into here, but gives me a new appreciation for all the work that is done by the tiny muscles and bones in your foot.

It’s probably a good measurement of where my body is at. I go to acupuncture twice a week, as per one of my New Year’s resolutions, to deal with the peripheral neuropathy and the nerve pain in my right hip. I used to be a regular at adult fitness classes – yoga, weights, etc. – and now I’m looking forward to Tai Chi at the local community school tomorrow night. I used to climb 5.10s at the rock-climbing gym and hope (unsuccessfully) to pass the lead climb test. Now I take the kids to the climbing gym and cheer them from the sidelines. Sure, cancer takes its toll, but I’m aging at the same time, so maybe this is the season of life when I’m supposed to call it quits?

Or maybe I was too fit to begin with. I spent decades getting to be able to hold a tree pose, and now I’m just too wobbly. So today I went back to chair yoga, where I can still do tree pose but get to grab onto a chair if I wobble. But Sue was not there to cheer me on. In fact, I learned that Sue died unexpectedly on Saturday. The last time that we talked, we said a quick and partial good-bye in the Y locker room. “I’m sure I’ll see you again before your surgery next week!” and she quickly agreed. She was deep in conversation with someone else when I left because she knew everyone in that room. I was grateful to her for knowing just when to seek me out and share her experiences, as she always had her little walker to keep her mobile, her baggy lululemon pants and her leg wraps so that she could work out. “I wasn’t feeling great this morning, but then I realized that if I don’t come here, then my day will get even worse!” she reported. And then we made plans to go to chair yoga.

The news of the death of my pig traveled fast and far, and I received many expressions of sympathy from friends and neighbors, for no one took the event lightly and the premature expiration of a pig is, I soon discovered, a departure which the community marks solemnly on its calendar, a sorrow in which it feels fully involved. I have written this account in penitence and in grief, as a man who failed to raise his pig, and to explain my deviation from the classic course of so many raised pigs. The grave in the woods is unmarked, but Fred can direct the mourner to it unerringly and with immense good will, and I know he and I shall often revisit it, singly and together, in seasons of reflection and despair, on flagless memorial days of our own choosing.  –EB White, “Death of a Pig”

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Menopause begins in 3…2…1…

As culture, we don’t talk about menopause very much. It must be as important as puberty, motherhood, or any other major biological turning point, but I have yet to learn much about it. Some of my older female friends have been kind enough to offer a little wisdom, like: “Menopause changes everything,” “I don’t think I slept well for over a decade,” “Your body’s going to do what it’s going to do,” and, “Thank goodness that’s over.”  When I learned that menopause would start immediately upon having my ovaries removed tomorrow around noon, that was possibly the scariest part. That and the part about it being irreversible.  Keep ’em coming, ladies!

I’ve been reading Eve Ensler’s In the Body of the World: A Memoir of Cancer and Connection. I have a confession to make: I’ve never read or seen The Vagina Monologues.  But I know enough to know that it is highly ironic that Eve Ensler would develop cancer in her uterus and vagina. Her writing about it is wonderfully expressive and unabashedly political. It won’t replace The Bright Hour as my favorite memoir of the cancer experience, but it is way up there on my list.  If you read her work as earnest, it is insufferable, but if you read it as ironic, then it makes more sense. Here’s one thing she wrote:

HOW’D I GET IT?

Was it tofu?

Was it failing at marriage twice?

Was it never having babies?

Was it having an abortion and a miscarriage?

Was it talking too much about vaginas?

Was it worry every day for fifty-seven years that I wasn’t good enough?

Was uit the pressure to fill Madison Square Garden with eighteen thousand or the Superdome with forty thousand?

Was it the exhaustion of trying to change?

Was it the city?

Was it the line of two hundred women repeated in hundreds of small towns for many years after each performance, after each speech, women lined up to show me their scars, wounds, warrior tattoos?

Was it suburban lawn pesticides?

Was it Chernobyl?

Three Mile Island?

Was it my father smoking Lucky Strikes and my mother smoking Marlboros?

Was it my father dying slowly and never calling to say good-bye?

Was it my mother’s thinness and frailty?

Was it bad reviews?

Or good reviews?

Was it being reviewed?

Was it sleeping with men who were married?

Was it always being third?

Was it my first husband sleeping with my close friend?

Was it shopping and needing to shop?

Was it being a vegetarian for thirty years?

Was it Froot Loops?

Massive chorine in swimming pools?

Was it Tab? I drank a lot of Tab after I got sober.

Was it Lilt (the tosic-smelling substance my mother used to perm my hair)?

Was it Tame (the solution she used to get the tangles out)?

Was it crinoline (the abusive and starchy material I used to have to wear under all my dresses)?

Was it Shirley Temples? Ginger ale with red dye number two juice and a red dye number two cherry on top–a favorite of the sophisticated country club alcoholic father.

Was it drinking water out of plastic bottles?

Not being breast fed?

Canned chop suey?

TV dinners?

Was it turquoise popsickles?

Was it Epstein Barr?

Was it in my blood?

Was it already decided?

Was it deet?

Was it that I didn’t cry enough?

Or cried too much?

Was it promiscuous sex?

All those arrests at nuclear power plants?

Sleeping in radioactive dust?

Was it my IUD?

Was it birth control pills?

Was it not enough boundaries?

Was it too many walls?

Damn, I forgot to get arrested at nuclear power plants. But I did use Tame and drink the occasional Shirley Temple, so we have that much in common. I am grateful for those who can articulate what the illness experience involves, and Ensler has been an important voice for women’s experiences.

So it’s the holidays. I’m pretty sure that last night’s latkes are still slowly being digested in my stomach, which is at it should be on Hanukkah. As many recent articles and posts have noted, there’s not a lot, materially that we NEED over the holidays, other than the time and the experience of being together, so gifts are really not the point. However, your time, which has really come to be a stand-in for your life, is certainly valuable. It occurred to me that one of the nicest gifts that I have gotten is the people who have taken the time to read The Bright Hour or another cancer memoir that shares the experience of living with cancer on a day-to-day basis, so thank you to those who have done this, and if you are thinking of doing it, realize that this is something that you have done for yourself and for people who benefit from having their experiences voiced, shared, and heard.