Tag: illness

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

On By LisaIn memoir

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.

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Yoga and the death of a pig

On By LisaIn memoir

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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This ad is everything for the depiction of moms

On By LisaIn Uncategorized

This ad was playing before the movie when we went to see the new Star Wars movie today.  Actually, rewatching this I realize that I may have been distracted for the first 27 seconds.

I won’t try to deconstruct the semiotics for you, but the link says that it is meant to depict single moms. Actually, I thought it was a depiction of my people, Moms Living with Chronic Illness.  It’s a great depiction of motherhood as being about things other than the smiling attractive mother who attends to her loved ones’ every need. You know, as we do.

I liked the Star Wars movie, but apparently the Ikea ad left a stronger impression because I’m still thinking about it.

Menopause begins in 3…2…1…

On By LisaIn memoir

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.

The Ring

On By LisaIn Uncategorized

A few months ago, we started watching Peter Jackson’s Lord of the Rings movies with Neige and The Prophet.  The director’s cut is on Netflix, which means that once you start watching, the series lasts forEVER.  That last movie is a never-ending battle. But the visuals and emotions and story hold up very well, and you have not seen an Ork until you’ve seen a Peter Jackson Ork. And let’s not even get started on the Elves, except to say that we all want to marry Legolas and Arwen now.

The movies are about so many things, and one thing they are about is how much we love home. In a funny way, London, Ontario, has come to remind me of The Shire. It’s a sweet, safe community full of little houses and little gardens. Everywhere you go you tend to run into someone you know. And when you leave, you know you are in a different – and perhaps more exciting and special – place. Like Paris or Toronto or Bethesda, Maryland.

We weren’t watching LOTR in preparation for anything, mind you. We were just looking for something to watch, especially as the kids had recently been introduced to Dungeons and Dragons, and the LOTR world seemed right for them. In the movies, a comforting and peaceable world is ripped apart by senseless violence, and humble Frodo somehow becomes the one chosen to bear the burden of The Ring so that it can be destroyed and order restored to the world.

Then in October, I learned quite suddenly that I was going to need surgery because my cancer had progressed unchecked, so I dove in and had the surgery, well-supported by a cast of wonderful family and friends. And I came out of the surgery in good shape. But I realized: Shit, I still have The Ring.

I sat through those movies on the couch. I’m not going to lie, I slept through plenty of scenes. But scene after scene, poor Frodo carried that stupid ring. It got heavier and heavier for him, and his friends propped him up and helped him put one foot in front of the other. He learned to trust the equally abject Gollum so that he could continue on the journey, and he never rejected the stupid mission of carrying that ring to Mt. Doom to destroy it. In the end, he succeeded in destroying the ring, a monumental task that made the happy and wished-for ending seem like a dream or a pretend afterlife.

Sometimes it helps to have a metaphor to communicate what you are experiecing, it can fill out the details when you don’t want to. So one morning I mentioned the ring to The Prophet, and he got really excited. “Yes!” he said, “The Ring! Because you agree to carry the Ring, but you don’t know about all the other stuff that’s going to come with it. You don’t know that there will be monsters and a giant spider.”  The giant spider that menaces you in the semi-darkess is the reality.

This week the giant spider is that we found out yesterday that I am to have my ovaries out on Monday. We’re hoping it will be laparoscopic, that the recovery will be easy, that our holidays will still be enjoyable. It’s the reasonable thing to do – what do you need ovaries for when you have two awesome kids? – and the gynecological surgeon is excellent, so I’m in good hands, once again.  It’s just the giant spider behind the Ring.

 

 

 

Visting physiotherapist, social worker, and nurse

On By LisaIn Uncategorized

What is your mandate?

They arrive with a stack of papers, and they have a job to do. I should be smart enough to ask what that job is, but instead, I just sit on the couch or at the dining room table and try to get through the visit. My province has seen fit to fund this phalanx of home care workers, who claim that they have to the power to speed my recovery, help me navigate the system, and possibly keep me out of the Emergency Department, and so they arrive as soon as I am home from the hospital. They supposedly offer services, but at this point it’s not clear that I need them. Also not clear how much they know about my case, since they arrive with a mandate, a stack of papers, and some reason for coming here; but they often end up asking the same questions all over again.

Sometimes they are quite useful, like the physiotherapist who gave me exercises to do, and now I don’t have to go to an office to get exercises to do.  Or the local service that came and left me a walker for use on longer walks.  Now I have a borrowed walker, and it sometimes buys me a little extra deference in the shops or room on the bus (picture above, at the local farmer’s market on Saturday, with The Prophet).

My favorite is the visiting nurse, who is a South Asian woman who appears to be in her late-twenties. She is generally approving of my overall demeanor and education level, noting that I already meditate and drink tea in place of coffee.  She is required to ask if I have any wounds or incisions to tend, whether I require the visit of an Occupational Therapist or the acquisition of assistive devices.  I insist that I do not want a grab bar in the bathroom, I already know how many steps away it is from my bed and how to get myself to the toilet without falling.  In fact, with all of the appointments, it might be better to have fewer visitors, so I discharged the social worker.

The visiting nurse wants to know what number I would use to rate my pain and dizziness. She does not like hearing that I am dizzy, but how else am I supposed to feel just a few weeks after brain surgery?  Sometimes I think I’m normal, then I stand up and find that my head is floating in space somewhere over my body. The sensation is not unlike being pleasantly buzzed, except that it is most of the time. Bending over to pick something up off the the floor is slightly perilous.  I can do most normal things in the kitchen, but I do tend to spill more spices and other things than I used to.

My favorite question is in response to the question of whether I’m getting much sleep, which I am not.  “IS THAT WHY YOUR EYES LOOK LIKE THAT?” she asks. No, I think my eyes look like they normally do. But apparantly, my eyes do not look right. I try to explain that I am half-Japanese, that I have inherited a mixed bag of traits, including light hair and puffy eyes. It’s starting to remind me of the midwestern doctor who told my mother that she must be hepatic because he had never seen an Asian person’s skin before.  When the visiting nurse came back 6 days later she said that my eyes looked much better, so things must be going in the right direction.

Stuff Part 2: The clothes

On By LisaIn Uncategorized

I’ve already written about the Worst Day of My Life, which was the day when I found out I needed brain surgery. That was the day when I went from “living with cancer” to “living with cancer,” if you know what I mean. It was the day when I started out thinking of myself as someone who was handling life’s challenges and living with cancer largely under control. But as the day progressed I realized that I was back at square one, knowing that the cancer was really in the driver’s seat and was likely to pop up at any part of my body and wave its restrictions into my life (no driving, immediate admission to hospital, prep for surgery ….) This is enough to turn your world upside down.

There were more issues than I knew how to deal with, and a raft of new questions appeared. If I could not call the shots in my life anymore, who was I? And what about my family, who surely had not signed up for this insanity? Honestly, for them especially I just wanted a ‘normal’ life. But no, now they eagerly offered me food and rides and company and moral support… it’s enough to make a girl teary, all the time.

Given that there were more concerns than I could possibly hold in my head at once, my first concern was, of course, did I have what I needed to wear for this new life of mine?  In fact, this was a small subset of the question, What is my life, now that cancer appears to have taken over the driver’s seat?  And just like that, rather than ruminate on the new state of my life, I dove into the literature of closet organization.

I peeked down the rabbit hole of minimalism, and it isn’t pretty. I’ve heard this is a common thing for people who are experiencing a health crisis, in which they get overwhelmed by the “stuff” that increasingly fills our lives. I came home from the hospital hopped up on steroids, mind warped by opioids, and could only think about how I needed to SIMPLIFY my life.

The promise is eternal – control your physical existence and you can control your life. The idea first took hold when I was introduced to Marie Kondo’s Life-Changing Magic of Tidying Up. You can reject things! it promised. You can say no the obligations that come with owning and caring for the material. Beyond the organization specialists like Kondo, minimalist blogs offered even a little more, as they held out the promise that you could create a sense of personal attainment through the critical editing of your very existence. Minimalism offers a route to reject consumerism, excess, capitalism, identities…

I’ve long known and believed that clothing is important.  As one CBC host recently remarked, “Clothes are a passport to belonging.” Wearing appropriate clothing is how we present ourselves to the world. It’s how we express our desire to belong or to blend in or to stand out. Clothing is what we wrap our bodies in for our own protection and care. I need to wear clothes to signal that I love and care for my body, even when it’s in a state of weakness and need. I need to wear shoes that keep me feeling secure while relearning how to walk. I need clothes to signal that I am still a committed member of society, that I want to be approached, to engage, to connect.

[An aside: I’m not sure that I nailed that last one when I traipsed around University Hospital in a bloodied hospital gown, especially not after I made it all the way past the cafeteria, down to the first floor, and out the front door for a breath of fresh air, swaddled in two hospital gowns and a drooping pair of hospital pants.]

Obviously, this needed to start with my shoe collection. I came home and successfully sold 2 almost-new pairs of boots. I found minimalist blogs like Style Bee and Un-Fancy, both of which offered a way to a soothing palette of colorless clothes that promised to uncomplicate my life so that I could focus on What Really Matters. I took all my clothes out of my closet, piled them on my bed, and created a wardrobe capsule. Keeping busy took my mind off the pain and at least half-convinced myself that I was working towards becoming the self that I needed to be for the coming winter of my … what, exactly? Discontent? Infirmity? Convalescence? Healing? After a few weeks my friends Elaine and Hilary arrived and talked me out of the 2/3 of my wardrobe that no longer fit my daily activities. Some items went out for consignment, some to Goodwill, and some are languishing in storage until the appropriate season for sorting arrives. Hilary now sends me regular photos of herself wearing some of my cast-offs as part of her successful work-from-home lifestyle.

I’ve long sensed a shift coming in how I present myself to the world. When you go from being a young, fertile woman to being a middle-aged caretaker of oneself and others, something shifts. You are no longer in the world to add beauty and desirability, to be admired or pursued. (This was always a rough go for me, anyway.) In such circumstances, a woman may suddenly come to understand her role as one of action and subjective experience, rather than passivity.  This transition has the potential to be liberating and invigorating, or it could be disappointing and erasing, depending on how you happen to experience it.  Style icons can easily shift from Audrey Hepburn, to Iris Apfel and various of my dearest friends.

I guess that now it is time to make a shift, from presenting myself to the world as feminine, attractive, and pliant, to presenting myself as a being in need of self-care and ready for action. When I start asking, “How shall I present myself to the world?” what am I really asking is, “How do I feel about my body, and how do I want others to feel?” I’ve spent a lot of time lately sitting in hospital beds and doctor’s offices reading magazines, flipping through images of women and men dressed to present themselves in various states of action and desirability to the viewer.  #MeToo

  • How do you feel about your body?
  • How do you feel about your identity?
  • How do you feel about your status?
  • When you feel fabric coddling or constraining your stomach, breasts, hips, feet, butt, etc., do you feel comfortable/acceptable/in control/appropriate/participatory?

There is something about the act of choosing and putting on clothes that makes me wonder about how I desire to be seen. The clothing itself is a mediator between my body and the world. It shows me, for example, that time has passed, even if I’m not aware that it has. My brilliant husband observed, “This is you, dealing with your life, in your most you way.”

 

What is pain?

On By LisaIn Uncategorized

I thought that pain was the thing that hurts, but now that I’m here, recovering from brain surgery, I realize that I don’t really know what pain is. When I woke up from my surgery, I just felt swollen and stiff all over and also somewhat numb. I didn’t know what could move and what couldn’t. I was doing so well that I skipped the intensive care recovery room and went straight into neurology observation. (I think, it’s all a bit fuzzy.) In the observation room, there were 6 patients and 3 nurses. The nurses were required to make sure that we were awake every couple of hours, that we knew which end was up (literally) and to ask us to rate our pain on a scale of 0 to 10.

I didn’t know what to say. Was I in pain? My head felt like it might explode. Maybe it was supposed to feel that way after being cut open. It wasn’t pain exactly, more like an extraordinary amount of pressure, like what I felt like when I was in labor with no drugs, but that turned out okay.  There was a woman to my right complaining of pain, saying she had to see the doctor, that her pain was unbearable, and all I could think was, “I can’t go to sleep until this woman’s pain is under control.” But it never was under control that night, not after a visit from the resident on call and administration of additional pain meds. At one point I think she got tired and said, “I’m sorry, I’m just not used to throbbing like this.” I will never know what kind of pain she was in and whether it got better, but it’s not my job to know, either.

As the days wore on, I had to rate my pain less frequently, but the nurses and doctors still asked every time they saw me. And it was clear that the number that I gave them back, meaningless to me, had the power to trigger action. I also learned that pain does not necessarily feel like a hurt. Instead, I was in uncontrolled pain with my normally low blood pressure spiraling upward, my body consumed by mild shakes that I could not control, and swelling in my neck precluding normal swallowing of even small sips of water and medication. Still, on that first day after surgery, one of the nurses had said, “She’s swallowing fine, you can cancel the visit from the Speech Language Pathologist.” Luckily, my friend Sarah, the pediatrician/public-health-officer/epidemiologist/outward-face-of-syphilis, had a talk with my team to let them know that my pain situation was not under control and insisted that it be addressed before bedtime (at least before the resident’s bedtime). Reluctantly, the team switched me back to pain injections instead of the slower acting tablets that they had put me on.

But to go home I had to get off the injections. The nurses strongly encouraged me to try to stretch out the time that I spent between pain meds to wean myself as soon as possible. On day 3 after surgery the nurse told me that she wanted to make sure that my pain was below a 5. As long as I told her it was below 5, she was happy. I’m not sure what she thinks below 5 means, but to me it means that I can swallow, am not shaking, have normal blood pressure, and don’t feel the dread of encroaching stiffness in my neck.

Turns out, pain is different for every person, and some people have dedicated their lives to understanding it from different perspectives, such as those of physicians, nurses, patients, social scientists, etc.  When I was first diagnosed with breast cancer, some people joked, “Welcome to the club that you never wanted to join!” But I consider the club of people who live with chronic disease to be another important one for me, and I am grateful to them for teaching me a bit about what it means to live in a body that is at odds with itself or with society at large. One friend and disabilities activist, Layla, posted on her Facebook feed yesterday that she was required to “provide documentation of pain from a phantom limb” to the Powers That Be. We can agree that is funny, right?

Now it’s a week after surgery and I am running out of pain medication once again. I went to my family doctor today and talked through what I can expect. She is mostly reassuring, but sometimes the conversation verges on the ridiculous:

Them: Do you have a headache, or do you have pain in your head?

Me: Do you mean other than the place where you cut my head open and sewed it back together?

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