In my late teens and twenties, I lived in Toronto, and my partner at the time had a family cottage in Dorset. Even though I’d left Muskoka intending to never return, I felt an umbilical draw to my hometown of Huntsville as a place that had shaped me, for the better and otherwise.
Few things piqued my ire more than hearing my now-ex call this area ‘cottage country’, or worse, the amorphous ‘up north’. Like the name of the town he vacationed in was incidental, and all that mattered was how the area related to him and his family. I didn’t have the words at the time, but I do now – Muskoka exists on its own terms, not as a playground for those who would commodify it.
There is an underbelly to Muskoka, one I have been exposed to for a long time, as a youth who couldn’t escape other peoples’ judgements, and later as someone who delved behind the façade, attempting to shine the light and expose dark small-town truths.
I am often frustrated with Muskoka, with the desire to maintain that façade, to plant pretty flowers over swampy areas, to invest in tourist attractions while the affordable housing waitlist tops out at seven years for a one-bedroom apartment. I wish we were more united, more generous, more inclusive, more willing to put hand to shovel and money where the mouth is. That said, I have a deep respect for the individuals who make up this community, and it is very much a community.
For example, over two days last week, a woman I take a course with offered me the use of her car because she knows I don’t have one, and a small business owner gave me free product to help with a health issue. I keep them anonymous only because I didn’t have the opportunity to ask them if I could share their kindnesses, and though they are both incredible people, they represent a massive and enduring network that I’ve felt blessed to step back into. When I lived in Toronto, I didn’t know my neighbours, and in fact only saw the family directly across the hall once, when the paramedics brought someone out on a stretcher. I watched through the peephole. Toronto is a city of islands, individual protruding land masses with one person, family, or clique upon each. Muskoka is land of the lakes – interconnected, deep, with a little touch of beaver fever.
I wanted to write an open letter to tourists, because they (you?) are here. We see you. I saw your Audi parked in front of the No Parking sign at the Digging Roots concert. I see when I walk to work and you’re producing a photoshoot in front of the green bridge or on one of the Muskoka chairs. I see you in line at restaurants and I notice you often speak in commands, and honestly you seem tense.
Everyone is quick to talk about the money that tourists pour into Muskoka and I’m not arguing that. Do I think capitalism based on endless resource extraction on a finite planet is a sustainable economic system? Why, no, I do not. Do I acknowledge it as our current reality? Well, mostly. Tourists don’t get to tap into the barter system the way I do, as a local. So, for them, money works.
Wouldn’t it be amazing if every person who cottaged in Muskoka, or travelled here, could adopt a local? There are people who have lived in this town their whole lives and haven’t been to one of the more upscale restaurants. There are homeless folks here who live in tents hidden from sight who’ve never stayed in Algonquin Park. There are people who haven’t taken the Portage Flyer, or one of the cruises, or seen a concert at the Algonquin Theatre. Money into the economy is great, but there is a huge swath of people missing out on any benefit from that particular exchange. I believe tourists are people too – and I believe in overwhelming human kindness. I truly think that if it occurred to them, visitors to our town would relish this opportunity to support Muskoka in an entirely unique way.
What if everyone who visited here bought coffee for a local and got to learn about Muskoka in the winter – the snowbanks taller than you can throw a shovelful, the season of dirt of dog poo (pre-spring), or what about how expensive it is to live in Muskoka, especially in the summer when prices get jacked up on the proven assumption that tourists will pay more for goods and services?
Or what about coffee with the local who lost a friend to an opioid overdose that never got reported in the media? Or the woman who can’t get into the women’s shelter because it’s full and she’s ‘only’ homeless? Or the man who barely leaves his home for six months of the year because he can’t traverse the sidewalks in winter?
But if you decide you’d rather we locals stay behind counters taking orders, consider learning that Huntsville might lose its hospital and put some money toward keeping it open. So many options!
I think I wish tourists understood that they are not seeing all the layers we live in, and I wish they wanted to. I wish they believed they had more to offer than money, or that more than money is needed. The influx of people is hard to deal with, and it’s not just about circling for parking, the fact that all the butter tarts are sold out, and airbnbs take away precious housing options. It’s walking down Main Street, desperate to see a familiar face, but everyone there is walking a pace that doesn’t match my own, they don’t return smiles, they don’t yield space. Sometimes it feels as though locals are seen as non-playable video game characters: only there for the advancement of others without a rich inner life of their own.
Adopt-a-local. I think I’m on to something here. Get to know Huntsville in a completely new way. Dig a little deeper, because while the flowers are pretty, the soil is what gives life.
I wanted to start this article by talking about Cindy Gladue.
I found, however, as I rolled words around in my head and then tried them out on the page, that there is no way to discuss the cruel details of this case without dehumanizing Cindy Gladue further, or without using sensationalist language in an attempt to force empathy, which of course cannot be forced.
Even the facts seem to exist as the horrors of another world. Surely not my world – well, indeed, not my world. As a white person with a significant social safety net, I have not had to live in Ms. Gladue’s world of human trafficking, rape, violence, racism, death, and the posthumous degradation of the body. But this is not another world. It’s the world overlaid atop mine. It’s the layers deeper into the sexual abuse, misogyny, and poverty that I’ve experienced.
If I exist somewhere in the middle, perhaps representing the average woman’s experience, Ms. Gladue was an outlier, the counterbalance to the women who insist they’ve never experienced sexism or the people of colour who haven’t experienced racism. Ms. Gladue lived at the intersection of being a woman, an Indigenous person, and someone in poverty. This intersection is now the topic of much debate, though it shouldn’t be. First Nations, Metis, and Inuit women have been saying, and urging white folks to hear, that at this intersection lies death, dehumanization, and annihilation.
Cindy Gladue, a Metis woman who worked as a prostitute, died in an Edmonton hotel room bathtub from an 11-centimetre wound to her vaginal wall. The case was founded on the idea that Ms. Gladue consented to rough sex and died as a result. Under a feminist lens, money cannot purchase consent because when a person is in poverty, money is inherently coercive. And it is only due to the ‘othering’ of Native women that a jury could even consider that a woman would desire being assaulted so violently that it caused her death. Women, and especially Indigenous women, have been so removed from the category of ‘Human’ that a lawyer can argue, and a jury will believe, that she consented to sex that killed her. That she wanted it. It seems some people have forgotten you cannot consent to being murdered. Pay attention to this argument because it’s often being used to get abusive men off the hook for sexual assault and murder under the guise of rough sex and BDSM. Convenient when the woman is no longer around to say what she did or didn’t want …
Ms. Gladue’s vagina was displayed in the courtroom, to the jury and all else, as evidence. Just her vagina. Not photographs, not an expert’s description. A body part had been removed and displayed, her sanctity desecrated, and it STILL did not sway the jury. Ontario trucker Bradley Barton was found not guilty. To the relief of Ms. Gladue’s loved ones, her community, and for justice as a whole, the Supreme Court decided in May there would be a retrial.
Maybe now that we can see this case as evidence of a genocide against Indigenous women, Ms. Gladue will have justice after all.
The commissioners of the report on Canada’s participation in this genocide describe it in the present tense: “a continuous policy, with shifting expressed motives but an ultimately steady intention, to destroy Indigenous peoples physically, biologically, and as social units.”
In my opinion what happened to Ms. Gladue was a deliberate killing of an individual. The courts did not agree. I believe this is because for far too long, the legal system, police officers, politicians, and citizens have regarded the rampant abductions and killings of Indigenous women as isolated cases. Unfortunate, but not part of a larger pattern. However, it truly does not take much to delve into the current and historical context of oppression and abuse of FNMI (First Nations, Metis, and Inuit) people in Canada (residential schools, forced assimilation including loss of language, 60s and millennial scoops, Highway of Tears) and come to the conclusion that this violence is systemic, deliberate (as in, the harm is done because they are Indigenous women specifically), wide-scale, and intergenerational.
What does it do to a community or a group of people to see their loved one treated so inhumanely, to see themselves and their culture systematically destroyed? When the police don’t help you and the courts define you only by the words they choose (prostitute, addict, Native) and white people look away? When your language is stolen and your ancestors traumatized and no one is telling your story and you’re not allowed to speak for yourself? What kind of collective trauma occurs from young Indigenous girls growing up hearing about MMIW – to learn that they are desirable but disposable and no matter how careful they are, someone wants them dead? What would that do to your daughter?
I know what the version for white girls did to me – eating disorders and self-destructive behaviour and acceptance of abuse and low self-worth and no hope for my future. Pile on the racism and poverty, and how is that not an attempt to destroy a people?
We do not get to shy away from this word because it reminds of a war, after which we’d collectively claimed Never Again. We do not get to clutch our pearls and cry, “Not us! We would never…” We do not get to quibble over the word that reminds us we are not always the polite and inclusive nation we play on TV. We should hate this word. We should be horrified. We should be looking deeply into our individual and social culpability and we should be facing a reckoning of conscience. We should be willing, eager, desperate to make amends, to facilitate reconciliation, to be on the side of those most harmed. To act as shields between vulnerable populations and those who would enact violence against them.
I have never cared less about the reputation of this country. I care about my sisters, who are confronting epidemics of violence, racism, lack of resources like access to clean water and housing (human rights), and now the hand-waving of those offended by a word, shifting the focus from the reality of these women, to the feelings of men in positions of privilege and power. It’s a diversion, and it’s divisive; two things we need to avoid when the most necessary thing is staring truth right in the face.
Ms. Gladue’s story has stayed with me as proof of our social disregard and literal destruction of FNMI women – it’s, always in the background of my thoughts when I write or read about the oppression of Indigenous women. How could she have been confronted with so much of the darkness of Canada, from male violence to the court system? Genocides, and our understanding of them, often have a pinnacle, a turning point in our awareness of the issue. Frequently, we need that person to humanize the group in its entirety, because otherwise it’s too many names, too many faces, simply overwhelming. I wonder sometimes if our brains can even contain the horrors of what our own government, religion, or society are capable of. And if we cannot accept it, we must deny it, or live in permanent cognitive dissonance. I have now witnessed each of these options, and I know where I stand.
I have heard the family members of the missing and murdered indigenous women – I have read definitions and historical precedents. I have learned the human cost. And I am ready to do what needs to be done, as defined by women Indigenous leaders, to make this right in this country of which I am ashamed and yet for which I still have hope.
When we get upset with working class people who are fighting for a living wage, when we say they haven’t earned that and don’t deserve that and pummel them for details on Where Will The Money Come From, it is very conveniently forgotten that the Walton heirs (of Walmart fame) have collectively inherited upwards of $163 billion US. No one earns that kind of money – it can only be gained by exploiting people down the production line. A minimum wage that means people can’t afford an apartment, childcare, continued education, or retirement savings is a theft by those controlling the system. These are people worth over a billion dollars taking food from the mouths of children. It would be a laughable caricature if it weren’t the truth of our lives. A system was created and is being upheld to benefit a tiny few at the expense of all the rest of us – and I put ‘all of us’ together because I doubt anyone reading this, regardless of income, has a billionaire on speed-dial. Eight men (of course men) own more money than half the planet. Is it really the minimum wage Wal-Mart staff you’re angry at? Or is it just easier to kick sideways when kicking up never lands?
When we lash out at people addicted to drugs for costing taxpayers money, for not understanding the value of life, for not acting “rationally” in a completely irrational world, we can put aside the fact that almost every addict has experienced trauma, that they feel alienated and cast aside, that they feel grief just as strongly as any of the “rest of us”. We can forget that abuse, trauma, poverty, and existential fear drive addiction and other “anti-social” behaviours. Can we call ourselves a society when we decide who’s in and who’s thrown out? Maybe it’s easier to rail against how much addiction and mental illness cost the province than realize that our medical system and social supports are outdated, stunted, and constantly playing catch up.
Canada is an extremely arrogant country, and especially in the arena of social supports. Portugal implanted a radical drug policy: “Portugal’s policy rests on three pillars: one, that there’s no such thing as a soft or hard drug, only healthy and unhealthy relationships with drugs; two, that an individual’s unhealthy relationship with drugs often conceals frayed relationships with loved ones, with the world around them, and with themselves; and three, that the eradication of all drugs is an impossible goal.” We aren’t going to get rid of drugs. We shouldn’t want to get rid of people who are addicted. What else do we have? The attitude I’ve witnessed toward recent overdoses in Muskoka is more akin to ‘they had it coming’ than ‘how can we save the lives of our friends and neighbours?’ Every person has the opportunity to shift from blame and shame to courage and compassion. It’s become too easy to hand wash away the issues we face as a community – but the hard thing and the right thing are often the same.
It’s very easy to pretend to be a preserver of life when it comes to abortions. Who wouldn’t want to be an advocate for literally the most ‘innocent’ and voiceless amongst us? Men who will never need to make such a decision – many who’ve never managed to consider why a woman would consider terminating a pregnancy – make sweeping decisions and punishing laws about women’s bodies all over the world. As soon as that baby is born, however? If it’s poor, it’s no longer worth fighting for. If it’s a person of colour, it can expect racism and oppression. If it’s disabled, the fight for supports will be a lifelong battle. If it’s a girl, she’ll be subjected to misogyny and as long as those men are in charge, they will never work to eradicate that particular form of violence.
This isn’t an argument for life, because the people I see in the comments section saying that abortion is murder are the same saying that junkies deserve to OD. It’s about control. Again, how much easier is it to kick a woman who is considering abortion than it is to fight against the poverty forcing her to make that decision, or the abuser who will use that child, if it were born, to control her? Why are the anti-abortion crowd so quick to tell women what to do but nowhere to be found when it comes to fighting for more supports for mothers and children?
Whenever I am on social media, I see the divide between community members stretch out like a chasm, impassable even by the tightrope many of us often try to walk. The living wage, unions, tourists, addiction and mental illness, homelessness, sexism and racism, even dog sledding is at the heart of a rampaging debate. Everyone chooses their side: their own, the government’s, the unborn, the oppressed, the animals, so many even decide to speak on the behalf of money, as if money isn’t the biggest microphone around.
I don’t have a pithy way to tie all these examples together. The thread running through is so obvious to me that I can’t believe I’m going another round on this. Sometimes when I walk outside at night, I look at the stars and scream for an intervention from… someone (aliens, AI, heck I’d even taken heaven at this point), someone or something to make it so glaringly obvious that we are stuck in the same battles, that we are fighting the wrong ‘enemy’, that we are being used as pawns in a machine with greater strategy than we could ever imagine. I don’t even like the militaristic language here because I feel like I’m feeding that machine.
I guess I would just ask that we listen with the intent to understand, that we love with the hope that it helps, that we see each other for who we are and not what we assume or project. That we try on the moccasins – and allow ourselves to wonder why they hurt so much and ask if there’s anything we can do to help. There always is.
The weeks after my hysterectomy surge and ebb between activity and debilitation. Less than a week after the surgery is the gala for Enliven, our local cancer support organization. Kai and I go and stake out a couple seats, and people come and go around us.
Then there’s the Huntsville Theatre Company’s presentation of my one-act play, Wouldn’t Miss It, which opened for the stunning play Perfect Pie. My sister came up, along with my mom, Nancy, my friends Beth and Kate, and of course Kai was there! And even more friends were at the theatre. A thrilling, but exhausting day.
My staples come out and my incision is healing great. The recovery is tough enough, but I keep expecting it to get really bad – like last time – and it never does. I do have a burning subdermal pain to the left of my navel, and there’s a numb spot on my left thigh that seems connected to the odd restless strain that I’ve felt in that thigh since the first surgery. But I adapt.
Kai has a speaking engagement along with Nancy and some other friends in Gravenhurst, and she delivers her talk on The Joy of Quitting, both poignant and incredibly prescient, for myself and for the world. And also – super funny! I’m so proud of her! Nancy speaks there as well, and I find myself missing working together with her to deliver our workshops for women, but I can’t even manage sitting in the theatre seat for the event, so I have to let that feeling go.
The next day, Valentine’s Day, Kai and I go to Toronto to see a play called Fish and Rum and stay in an airbnb. The play turns out to be a 3-hour work in progress, and by the time we make it back to the space, I’m feeling absolutely wretched, mostly in my leg and left abdomen.
The next, I’m hesitating over going to emerg. My experiences with emerg are not great, and I don’t want to waste hours getting nowhere. We visit Allan Gardens, hoping this will help with the mental aspect of the pain – it’s winter and I usually struggle, and I’ve been more immobile than I have in a long time.
Afterward, we drive to Bluffer’s Park in Scarborough so I can go for a walk and see if it helps with the pain in my leg. Kai calls me out for delaying the inevitable, but I need to try.
As lovely as the walk is, it offers no physical relief.
We end up going to the ER in Barrie on our way home to Huntsville. At this point, I’m really suffering. We wait about four hours before finally getting shown to a room, and then another hour or so before we see a doctor.
Because I have cancer associated thrombosis (blood clots), they order a Doppler ultrasound, but that won’t be available until the next morning. And because of the surgery, they order a CT scan on my abdomen because they can’t identify the mystery pain.
Kai went and got us subs to eat because it was already 9pm, and I’m literally opening the wrapper, the smell of my toasted sub wafting up to my nose, when the nurse comes in and tells me I’m going to get a CT scan hopefully within the hour. I almost start eating but, remembering my previous CT instructions, I ask the nurse, with palpable regret, if I’m allowed to eat.
No. I am not.
I sit with the sub in my hands for almost five minutes, telling Kai I’m just going to have one bite. But I refrain, somehow.
A real heartbreaker moment, that one.
I’d learned from my very first CT scan that I have an allergy to the contrast dye, so they start me on a benadryl drip as part of their protocol – which makes me feel nauseous and dizzy. We’ve been evicted from the emergency room, and now we’re in the place called the Fishbowl – a large room with comfy reclining chairs and large doorways and ‘windows’ without glass where we patients can be observed by the nurses and doctors coming and going.
It’s after midnight when the CT techs are ready for me. They, like everyone else, ask me about the allergy. Then one of the techs mentions that this hospital uses a different type of dye than the Orillia hospital where I had the reaction, so I may not be allergic to this one.
And praise the universe, I have no reaction whatsoever to this dye! Which means when I need further CT scans, I’ll just request to have them done at the Barrie hospital, so I don’t have to take the prednisone and benadryl prior to the scan. Silver lining to a problem that hadn’t existed before the storm began.
The scan is over quickly, and then it’s back to the Fishbowl. I’m still told not to eat in case any further imaging is needed. The ER doc eventually returns after reviewing the CT results – she says there is a not insignificant amount of fluid in my abdomen and lower pelvis area. She said it appears to be a bleed, though they couldn’t discern if it’s ongoing or had already stabilized.
It’s after 3am when a room opens up in the Minor unit, and a nurse wheels a big reclining chair into the room for Kai, and I crawl into the bed.
I finally get to eat my sub.
In the morning, they do the Doppler ultrasound. There’s quite a bit of waiting around, and Kai goes to get us some smoothies. Eventually, I’m told by another ER doc to go off my blood thinner injections in case the bleed is ongoing. He prescribed me a fancy ibuprofen (which I can only take when not taking blood thinners). He also said the Doppler showed no blood clots in the leg, which is what I was most concerned about. So, some good answers and some more questions.
The ER doc emphasizes how important it is that I get in contact with my oncology team first thing in the morning. I do so, and when they eventually return my call, no one seems concerned, and no one tells me why not.
On February 26th, about ten days after my trip to emerg, I meet with Doctor Ball for my post-op.
This has been the most anticipated appointment of this entire journey. This is the one that tells me if the hysterectomy was the right thing to do. It’s the one that will reveal what the next few months of my life will look like. And to some degree, what the rest of my life will entail.
However, even with all that anticipation, I couldn’t have predicted what the doctor would tell me.
Because there was cancer found in the ovary I had removed in October, it was diagnosed as ovarian cancer. We’ve been going with that assertion. The biopsy done on my uterus at the time found only atypical, or precancerous, cells. I was told that 30% of the time when they find pre-cancer somewhere, there is also cancer, they just didn’t happen to biopsy that particular area. But Dr. Ball had also said in October that my uterus looked healthy from the outside. So we were pretty confident that it was ovarian cancer, and because of that, I knew I wouldn’t have to do radiation therapy because they don’t do that on ovarian cancer. I’d taken it off my radar.
However, they found cancer in my uterus and my other ovary. And because it doesn’t really travel from ovary to ovary, in conjunction with other evidence, the doctor believes it’s uterine cancer. And because it’s spread, it’s stage 3a. We are currently working on the assumption that it is one cancer, not two primary cancers (uterine and ovarian), but cells are with a specialist to get a solid answer to this.
Remember how I keep going on about how we caught it early? Early, and it’s already at stage 3.
The lymph nodes came back clear, though one suspicious one remains – though the others have looked suspect as well and came back clear. Later, I go to the health records room and get them to printout all my notes, and I read that I have a concerning 3cmx2cm ‘something’ that appears attached to the wonky lymph node. The doctor didn’t mention this during the post-op, and also did not know what is going on with the pain in my left leg, but I suspect they are connected.
So now that it’s uterine cancer, the protocol is radiation and chemotherapy. 25 rounds of radiation, five days a week for five weeks, in Barrie. New studies show that radiation therapy is potentiated by two doses of Cisplatin, a chemotherapy drug, administered intravenously in two rounds – one at the beginning of radiation treatment and one in the last week. According to research, this chemo drug is well tolerated. Doc says if I do this, my prognosis is Excellent. There is no research on my prognosis if I don’t do the protocol – basically because it wouldn’t be ethical to study that.
Now, the other two chemo drugs they’ll be giving me at the end of that regime are not so well-tolerated. They don’t like to give me a lot of information – three different people told me, ‘we’ll address that when we get to it’ but my brain doesn’t work like that. I need all available information, statistics, and some anecdotes to make an informed decision. So the doctor did tell me about the drugs so I can research them. I’ll get sick, lose my hair, have my immune system destroyed, all that good stuff. But that’s later.
I also have a referral to a genetic counsellor, because I might have some fancy inherited gene, because uterine cancer in my age bracket with no risk factors is really rare. Or could be BRCA. Or not. The doctor told me they presented my case at their round table – again! I certainly don’t do anything by halves.
I’ve been without an income for a month now because my short-term disability ended and my claim for LTD is taking forever, but I’m hoping it’s approved soon because things are a little dire. Thank goodness for my support system, my friends and family who are helping with money, and people who have donated or helped out by shovelling or cooking or driving me around.
Next up, on March 2nd, is my appointment with the hematologist. She tells me I need to go back on the blood thinners, but no more injection – I can take a pill now. I never thought I’d be so excited to take a blood thinner!
The following day, I’m sitting at the Rotary House Lodge right next to Royal Victoria Hospital in Barrie. In fact, I can take a tunnel underground to go to my next appointment, with the radiation specialist in the cancer centre. Don’t even need to go outside!
Like the rest of my team, the radiation doctor is a young woman. She’s brilliant and answers my page of questions. She estimates my chance of the cancer recurring if I don’t do the recommended treatment is approximately 35%, which she admits is an extrapolation from other studies she’s read. Chance of recurrence if I do the treatment? 10%. Chance of getting an entirely new cancer as a result of the radiation? 1%.
My bladder will be impacted – basically burned, scar tissue will form and it will not be as elastic. She explains it’s painless for the first couple weeks, and then the fatigue, nausea, etc can kick in. She also says there will be a month in between radiation and the intense chemo, which allows me to go on the family vacation we’d had planned for ages – my first vacation with both my mom and sister, and Kai is coming as well. Thank goodness for things to look forward to.
The nurse asks if I can fit in the necessary CT scans now – they need to scan my pelvic before and after a full bladder, to see basically how much leeway there is in there. The radiation must be done with a full bladder and empty bowel.
That all goes well, because they have me, I also get the radiation placement tattoos. This was something I’d only heard of twice before: in order to guide the external radiation beam to the precise targeted areas, they give you four permanent tattoos to line everything up.
I thought it would be a tattoo gun, but it’s an regular needle filled with ink. I get four little pinches, one on either outer thigh, one on the right (their left) of my ancient navel piercing scar, and one at the termination of the mess of scars on my belly, in my pubic hair.
It’s fucking surreal. My body has been so very changed by this.
If I decide to go this recommended route of rad and chemo, I’ll be spending a loooot of time here in the coming months. My hope is that I feel well enough, most days, to write. Writing is what’s bringing me peace, and joy, a sense of accomplishment, and the feeling that despite this derailment, I’m still on my path.
In the meantime, I’m a scrabbooking maniac.
I was saying to the executive director at my job at the women’s shelter: some days I feel so shitty and others I am literally ecstatic. I feel present, and grateful, and interested and invested in my care. I’m still scared, and shocked that this is happening like this, right now, to me, but those feelings are tempered by the sense that I’m going to be all right (whatever the outcome, and I do mean whatever) and that I’m learning something incredibly valuable from all this. Maybe the lesson isn’t even for me, or isn’t only for me. I don’t know. Maybe it is.
Content warning: contains graphic images of sutures, epidural, and removed uterus and ovary
When you have to make a list of the pro/cons of having surgery and the pros/cons of not having surgery, and both lists have ‘death’ on them, it’s easy to feel like you don’t have any good options available to you.
But after seriously contemplating the lists, it became evident that the choice to not have the hysterectomy/oophorectomy and try to battle ovarian cancer naturally wasn’t making the most of the best part of this experience: the fact that we’d caught this early. If I waited, the cancer could spread and I may have had to have the surgery anyway, plus a bunch more.
Once I’d decided that I would go ahead with the surgery, I felt better – lighter. The deciding was the hardest part. Even the fear diminished, though it did not disappear.
Recovering from the emergency oophorectomy in October was nightmarish. I was so afraid of having to go through that again. The darkness, the weight of the diagnosis, the pain.
So I faced the second surgery, the more invasive and complicated hysterectomy and left salpingo-oophorectomy (as righty got evicted in October 2019) and omentectomy (removal of the uterus and cervix, left fallopian tube and left ovary, as well as some fat and some lymph nodes) with fear. Not worse fear than dying of cancer, but fear nonetheless. And yet… the experience was as positive as such a surgery could be. I was and remain in shock at how much better it was this time.
Some reasons why:
The biggest? I did relentless internal, emotional work to accept that I have cancer – that it wasn’t my fault – that I deserve good quality of life – that I will be okay. I had to get good with every possible outcome because I didn’t want to live in regret. I finally got there.
I had accepted the impact of the surgery (no bio kids, surgical menopause, no more menstruation or ovulation, impacts of loss of estrogen).
I had already been through a shitty recovery, so I thought I knew what to expect and was pleasantly surprised instead.
Because I’d had a surgery, I could prepare myself and my space to better accommodate my recovery.
It wasn’t an emergency surgery, so my body and my brain were prepared for what was going to happen, and my body didn’t have the trauma of the blood loss and emergency intervention.
I didn’t have to have blood transfusions, which I think was really hard on my body last time.
I had an epidural, which was amazing for keeping the area numb and letting me feel more mobile.
The epidural kept the on-demand painkiller localized to my spine, so no brain fog or sleepiness.
The epidural also allowed me to pass gas, which for whatever terrible reason I literally cannot do normally, and the gas/constipation is a really brutal part of recovery.
I had immediate pain relief because the mass was causing pressure and adhering to my sidewall, so once removed, the pain eased.
Lastly, the surgery itself went very smoothly with no complications. Obviously a big reason.
So, I had a lot going for me this time. The hospital was great and all of the nurses were amazing. I have a nurse practitioner there now, so I have someone I can connect with when I don’t have access to the doctor. I was able to move around the first night of the surgery, and slept well afterward. My family, chosen and blood, took care of me, and I knew I had a community rooting for me.
Kai drives me to RVH, the hospital in Barrie, around 5am on January 28th. We get there around 6:20am and I change into the hospital gown and robe. We sit in the waiting room and Kai asks me if I’ve said ‘goodbye’ to my parts. I had, but I take that moment to hold my belly and tell my uterus and remaining ovary that this isn’t their fault, and that I am grateful.
I have to talk to several nurses before the surgery. One takes my blood, weighs me, and another talks to me about the epidural and pain relief options. One more takes swabs to check for superbugs. She tells me that she’d read some of my chart and that she’s heartbroken for me. She informs me that she’d prayed for me, and I say thank you. I used to not like it when people, especially strangers, prayed for me – I don’t believe in god that way and it can feel pushy. But a lot of the time, the women I know who believe in god seem to believe many of the same things I do, just by other names and avenues. It isn’t faith that is the problem, I figure; it’s religion.
However, before I leave this nurse’s office, she glances at the clock and then asks me if she can pray for me. I say yes because what she does on her own time isn’t really my business and she’d already prayed without my permission so what does it matter to me?
But the other reason I acquiesce is a little bit of playing the odds. I’d been pretty convinced going in to surgery that I was going to die on the table. I’d had some things happen that I took as signs. I went so far as to write a note for my loved ones, which includes the passwords to my computer and phone to make things easier if I die.
So I think, if I tell this woman she can’t pray for me, and then I die on the table and meet capital-g God and God says it’s because I didn’t accept the prayer, I’d feel so stupid. How embarrassing!
I say yes, but instead of letting me leave so she can pray alone, she puts her fingertips on my knees and bows her head, fully praying aloud. I’m shocked but I let it happen, and leave in silence when she finishes.
I return to the waiting room and eventually it’s time to go into the blocking area, the space before surgery. I kiss Kai goodbye, again fairly accepting that I would never see her again. I rest in her warm, loving space, so grateful that she arrived in my life when I didn’t need her, so she can be here now that I do.
Here, I get my epidural. I’d been nervous about this because, well, that’s my spine. I wait as nurses come and go around me, and then I meet the anesthetist who is going to insert the epidural. He’s young, a resident, and he stands too close and has iffy breath. Behind me, he pushes and prods the knobs of my spine to the point of pain, and then there’s the pinch of the hollow needle, through which the epidural line gets pushed, then the needle will be removed. He asks me where I feel the numbing, and I say it’s centre-right. There’s some fiddling, but my sense of the location doesn’t change. The senior anesthetist tells him, “Good job,” so that’s reassuring. I hate having lines coming off me, I find it panic-inducing, and the epidural is worst because, again, spine. They tell me I can move around and lay back on it, just treat my back like it has a bad sunburn and don’t like thrash all over the sheets.
In the operating room, I see my doctor and we talk a little. Someone puts a mask over me – I hear metal instruments clinking outside my line of sight. It isn’t long at all before I disappear.
When I am brought back, my first thought is that I didn’t die after all, and I’m confused and elated by that. My second is that I can communicate so much better than last time. I feel a deep, violent ache in my pelvis, around the top of my vagina, as best as I can tell. I think, “There’s no way I can get through the day with this pain.” They increase my painkiller and give me the handy little drug button. I push it immediately and meditate through the pain. They all remark at how lucid I am. Finally, a good grade!
I’m taken to my room to find out Kai has done some fancy footwork – she finagled me a window bed! I’m so grateful and the view is lovely. Once the pain in my vagina area passes, which is within a few hours, I feel good. The epidural is just a miracle. I’m up and ambulating twice that night. Kai brings all the nurses coffee because she’s amazing, and I notice they are very nice to me indeed! Well, except one nurse who got fed up with my tape, kept adding more and more, and eventually just wrapped me right up and told me to stop moving…
of my capture!
I sleep fairly well for a bit, but I get a roommate at 3am, an emergency surgery patient and she’s in pain. I have my noise-cancelling headphones but rest is difficult after that.
Dr. Ball visits me the next day. I feel like she was a little nervous because last time went so poorly, and I was a mess. Now, I’m bright and cheerful, feeling less pain already than before the surgery. She looks at my notebook, open to a blank page, and asks if I have any questions. Nope! I’m good. She lets me know she’ll be back the following day.
I get lots of moving around done. I can almost stand up straight. It was an open surgery, a laparotomy – I have an incision from within my navel to the top of my pubic area. I count 30 staples but the nurse practitioner eventually takes out 32, so I guess I miss a couple.
The most annoying thing, however, is the ice test. Every four hours a nurse comes by with a baggie of ice, and I have to lift up my gown while she plops the ice on my skin from nipples to knees, and I get to rate how cold it feels on a scale from “I literally can’t feel that” to “Why are you so cruel?”
Because I’m well hydrated therefore no IV, and because I don’t need a painkiller drip or a blood/iron infusion, I don’t need to have any tubes connected to my arms. They keep the disconnected IV line in my arm, though, and I still have the epidural in my back, but having my arms available is a joy and it feels so much better. FREEDOM!
Nancy and Jay come for a visit and bring me snacks and wet wipes because I’m covered in iodine and pink stuff. They are amazed to find me sitting cross-legged on the bed, smiling and laughing (not too hard, though – I got warned about hernias). After a lovely visit, they make their exit when the nurse bearing the bag of ice comes dripping my way.
The pain team nurse comes back to talk about taking me off the epidural the next day. It feels soon and I’m very afraid that the pain will be too much – I’m afraid it will be like last time. But I rest well enough that night, despite people coming and going at all hours.
The next morning, I meet the Nurse Practitioner who will be working with me. We have a great talk and she says I will almost certainly be doing chemo. I do cry at that point, because I so just want this chapter to end. But we move on to talk about what her role is. She says she essentially fills in the gaps – I say, I thought that was what the nurse navigators do. But I don’t mind – the more people on my team, the better. I also tell her about the nurse that prayed for me, and we discuss that. She says she will let the head nurse know, and validates that it was not appropriate.
The head nurse comes in to chat and I share the story again, letting her know the name of the nurse. I emphasize that I don’t want to have any kind of formal proceedings to take place, but I do want the nurse to be told that that is just not appropriate in a setting that is strategically secular. I think about two different young women who’d been in the waiting room with me, one of whom brought her gender-non-conforming girlfriend, like I did. Would they be any better able to decline unwanted prayer than I was?
I read much of the day, a book called Your Medical Mind, about why we make the medical decisions we do. It helps me understand that I prefer a minimalist approach with a preference for advanced technology. Very worth reading if you feel like you have to defend your medical decisions to loved ones or professionals.
Kai comes and goes. She’s an amazing support, bringing me snacks and treats and just being with me and keeping me distracted. I think we’re both surprised I’m as well as I am. I know I keep waiting for things to get worse.
It’s another night of interruptions, but the next morning we talk again about getting me off the epidural. I’m told it’s at a 4 and they want to take it to a 2. I cry because I’m that scared, and ask if we can go to a 3 first. The nurse is like, Of course! And I feel way better. She lowers it and I wait for the pain to rear up, but it doesn’t. Eventually we go to a 2, and I feel fine.
The ice tests keep coming, and when I do use the painkiller button, it freaks me out because I can now feel the epidural space and therefore can feel the liquid entering my spine. It doesn’t hurt but it feels really gross. I do mention it to the anesthetist when he checks in on me, and he says that he hasn’t heard that before but it does make sense – it’s a little liquid going into a very tight space. I stop using the button because I find it so icky.
Dr. Ball comes back and tells me that no, we don’t know for sure if I’ll need chemo, and we have to wait for pathology to come back to decide the course of action. She is not one to speculate. By now, I’ve collected some questions and she answers them well, as she always does. I ask her about risk of prolapse, and she tells me that I’m in a good position to avoid that because of my age and not having had kids. I ask her what ligaments they used to restructure my bladder and she laughs and says that’s a whole anatomy lesson. But she explains what she can. I ask how deep my vagina is now, and she says it’s about the same – removing the cervix doesn’t take away much depth at all, and because it’s elastic, I likely won’t notice a difference. She took a picture of my uterus and ovarian mass once they were removed, like I asked her to, and they are equal in size – which isn’t right at all, obviously. Ovaries should be about almond-sized.
Over the course of the day, the epidural is taken down to zero and I’m allowed hydromorphone for pain, but it’s a lower dose than I’d been taking pre-surgery so it didn’t have much effect. In the afternoon, the nurse takes the epidural out – it’s not as bad as I thought it would be. No pain at all.
I’m without any painkillers except acetaminophen and ibuprofen and I feel… okay. Not amazing, but not doubled over. I know I keep repeating myself, but it was Not Like Last Time. The nurse tells me it’s great that I’m able to read, and there’s almost a litany from them about how ideal my recovery is! One nurse even told me I was her favourite kind of patient. A+ in recovery!
I don’t sleep all that well, and I felt like I had to beg for the hydromorphone I was allowed every 4 hours but only took twice. But that was from a nursing student, so I didn’t get too grumpy. But they let me sleep in and I didn’t wake up until 9am, which if you’ve ever slept in a hospital, you know is unheard of. I didn’t even hear my breakfast come in! Thank goodness for the noise cancelling headphones.
It’s the Nurse Practitioner who wakes me up. We have a talk and she goes over medication with me. I let her know I have a ride in the early afternoon, and she says I’m basically discharged.
I take my time getting my many belongings together and trading my hospital gown and robe for leggings and a sweater. Last time, I couldn’t even put on my own pants. This time, I even get my boots on! And when Nancy and Jay arrive, I WALK to the car. Not a wheelchair. I could dance, if my belly would let me.
The drive home is uneventful, but when we pull into my driveway, Kai is there waiting. The first thing I see when I exit the car is my own face, taking up the majority of the front page of the Huntsville Forester. Kai had gone out to pick up copies of the newspaper with my interview about the hidden costs of cancer.
I’m grateful that the story is being told, but I feel immediately exhausted. I retreat into my space and curl up in bed.
Photos throughout are from my annual hike of Centennial Ridges in Algonquin Provincial Park. I almost didn’t get to do it. So very glad I did.
It’s 2pm and about time for my needle. I need to give myself an injection of Fragmin, a blood thinner, every day in order to stave off blood clots. I have CAT, which isn’t as fun as one might think by the acronym. It’s Cancer Associated Thrombosis, blood clots because I have cancer.
There are some perks, admittedly, to having a cancer diagnosis, but CAT isn’t one of them.
It’s 2:08pm and I paused writing to take the shot. My belly is covered in bruises. Before the blood thinner, I was a very quick healer. A pinprick wouldn’t even last a day before the scab fell away. Now I see tiny scabs from over a week ago, just-yellowing bruises over two weeks old, all peppered around the scars from the laparoscopy-turned-laparotomy two and a half months ago. Even these scars, by now, would normally have become flat and white, but instead are still red and raised.
There are a lot of ways I’ve had to get used to my body again since being diagnosed with ovarian cancer.
Last night, it was 4am before I called it a night, playing Horizon Zero Dawn on the playstation my girlfriend Kai brought over, along with the 58inch 4k TV. Playing video games is one of the few reliefs I get from the constant mental monotony, the internal cancer banter.
Once I got into bed, I knew sleep would elude me. It was almost 6am the last time I took note of the time, but I remained awake after that. I practised deep breathing, brought my distracted mind back to centre, and allowed my body to rest, knowing that if sleep is impossible, stillness is the next best thing.
At 8:30am, my phone rings for the first of many times.
It’s Soldiers Memorial Hospital in Orillia, looking to book my pre-surgery CT scan. The gynecological oncologist wants to make sure the cancer is more or less as we expect it to be, as it’s been a while since I’ve had any imaging. The last time I had a CT scan, I had an allergic reaction – a few hives on my belly, hip, and legs. Because of this, the technician marched me over to emerg, where I waited four hours to get two Benedryl. From that point on, I have my first allergy – I have to repeat it every time I talk to a doctor, nurse, or intake staff. Despite it happening at Soldiers, they don’t have this information on file. I fill in the staff on the phone, and she lets me know I’ll need a prescription for prednisone to take prior to taking the CT dye to prevent another reaction.
The next call is Royal Victoria Hospital in Barrie, where my gyne-onc works, calling to ask why I’d left a message the day before. I had already answered this to someone who called me back at end of day yesterday, but I replied again: “I’m calling to check if Dr. Ball has space in her surgery schedule to move my date up.” She says she’ll check and call me back.
My insurance company calls at 11:30am to ask where I am regarding my timeline to return to work. I haven’t received any income since December 17th – it’s a crappy time of year to fall through the cracks. The paperwork is with the doctor, I tell her – but I do have a surgery date. January 28th, with a CT scan on the 7th, and a pre-op on the 13th. She tells me to email her when I find out what’s happening with the paperwork, but that, yes, I will get paid retroactively for the time I’ve missed. Perfect, maybe I can pay some bills. I don’t cry on the phone with her this time – I hope she’s relieved.
Around noon, there’s a bang on my front door. I know it’s FedEx with a package for Kai, so I get up, trip on the leg of my pyjama pants, crash land on the floor, and scare the everloving shit out of my new housemate, Bozo the cat. Bozo was recently returned to the animal shelter after going missing in September. He’s Kai’s cat, but he’s staying with me for now, because he needs a people and I need cat energy after Priestess’ death. Except for this event, he’s been an absolute joy.
Being a scaredy cat, Bozo jumps from the windowsill across my messy desk, catching the cord for my SAD lamp and clotheslining absolutely everything, including a vase that was empty of flowers but not of old flower water. The disaster takes so long to happen I have time to sit up from the floor and cover my ears, anticipating broken glass (the only thing that didn’t happen, it seems). After the cacophony, Kai and I burst into laughter and I make it to the front door, thinking it probably sounded like I’d upended the house trying to get there in time. Kai opens her package and I try to coax the cat out from under the bed.
At 12:15pm, RVH calls back to say that no, unfortunately they cannot move my surgery date up. At first I’d been comfortable with the January 28 date. But, though I didn’t expect a miracle, I had hoped to move it up because the idea of being in this amount of pain for that long agonized me. I also have concerns that the cancer is accelerating because I can longer cross one leg over the other without causing severe pain in my hip, and it hurts to cough or laugh. Hurts more, I mean.
After that call, there’s a reprieve. Then at 1:50pm, Soldiers calls again to confirm my CT scan – on the same day the appointment was made. Then I called my nurse practitioner to arrange the prednisone prescription.
I’m so tired.
I don’t like talking on the phone on a good day. Having to have that many interactions about a disease I certainly don’t want just exhausts me. I have to put on my noise cancelling headphones because audio stimuli overwhelm me, even though I’m sitting quietly in my room. The headphones have been a lifesaver, not just at the hospital, but day to day. They make it so I can focus, so I can keep that niggling annoyance from creeping up without me noticing, causing me to wince and cover my ears.
I tell a friend about my pain level and she recommends asking my doctor for a better painkiller. I have.
I see someone I haven’t seen for a while and in response to her asking how I am, I tell her about the diagnosis. She tells me that’s something to ease into in a conversation, not lead with.
I tell a friend about my fear of the side effects of early surgical menopause (like memory loss, heart disease, stroke, osteoporosis). She tells me my fear is “an amusing ageism”. I’m not afraid of age. I’m afraid of poor quality of life.
My mom doesn’t feel involved in the process, but it’s complicated to talk with her because her own cancer experience caused trauma.
Everyone wants to be updated, involved, supportive, and that is amazing. I feel I am the centre of a wealth of love and support. People tell me they are thinking about me, praying for me, and I feel that – it’s tangible. I am so very grateful.
I’m tired of cancer. I’m tired of no good options. I’m tired of phone calls from strangers that lay out my path in weekly intervals. I’m tired of saying, “I’d love to go, but I need to see how I feel that day.” I’m tired of all the medications I have to take and knowing that I’ll have to take some forever. And I’m tired because I’m hurting – I have tension headaches, and a rib out, and ocular migraines, and fucking cancer. I’m tired because I’m not sleeping. I’m tired of being afraid.
And I’m angry. I’m not one to scream ‘that’s not fair!’ because my reaction to injustice is to try to change the world. And a lot of the times, even if I don’t see the immediate result, I know I tried, I did something. With this, there’s nothing I can do about the course it’s taking. And yes attitude is everything and yes positivity matters – but I needed to get there. I needed to journey there. Anger is okay – anger is good. I’m angry on behalf of myself – this isn’t something I want to happen to me. I’m not okay with this! I had a mission, I was on a path. How dare this derail me! I don’t want to know this stuff! Why? Why?
Breathe. I have become closer with my friends who’ve been through medical disasters. I can say, “I just don’t like this,” without sounding like I’m whining or like I think I’m ‘beyond’ this or wish it had happened to some else instead. There’s no reason for this to happen to me over anyone else, other than it happens to so many people. People hear anger and they want to turn off that valve, to redirect it, to snuff the flame they fear I will lose control of. But my anger isn’t a conflagration, it’s energy. Anger made me less afraid of dying on the surgical table. Anger made me active in this process. Anger cleared space for acceptance.
And I’m not just okay. I’m amazing.
I have seen the burning of both ends of my candle, and I can’t let that light my way anymore. I have seen the thinness of my scattered, though devoted, energies – everything is so important, I had to enter every fray. Not anymore. My core values have not changed – if anything, they’ve intensified. I am a renewable resource, but I need time, space, and stillness to renew. I have to decide how I am going to exist in this world. What I can accept and what I can’t – where I put my energy and what I demand in exchange for it. My self-care is now survival, and it’s revolutionary.
I have always been a writer, but I’ve treated this gift like a loyal pet, something that will always be around while I go off and do other, more ‘important’ things. I need to ‘make a living’, I need to work, I need to volunteer, I need to maintain my friendships, I need to play video games. But even loyal pets die. What I actually need to do is use this skill, my primary skill, to change the world for the better. There is a reason my mind and my fingers are perfectly matched, why I can type just as fast as I think and think very fast indeed.
There are no wrong paths in life, true, but I know a great trail when I see one.
When I first got diagnosed and got taken off work because of the pain and incapacitation from the blood clots, then surgery and recovery, now another surgery and recovery, I thought, this is a mixed blessing. Maybe I can finally reset my schedule, take the break from shift work to create the life I’ve always wanted. Wake up at 7am, start the day with some journaling, go to yoga or practise at home, go for a walk, meditate for thirty minutes, cook all my meals with local, organic food, keep my home space tidy, write a few thousand words, answer texts and email promptly, nourish all my friendships, read a novel, and go to bed early.
I really did want that, and I thought I was capable of it. And maybe I will be, when that’s what I need. But that’s not where I am right now. Right now, I’m fucking ecstatic if I just write something in a day. And if I waited to do all those things before I wrote, I wouldn’t have written this.
After my surgery, I didn’t write. I felt submerged, held under by fear, anxiety, and pain. I let my thoughts whirl, retreat, return with a vengeance, set up camp. Because I didn’t write, nothing left my mind. I felt like I radiated toxicity. What I did in a day was not that lovely, inspirational list.
In fact, what I did was closer to this: if I slept at all, wake up early, while it’s still dark. Struggle to my feet, struggle to stand up straight. Make it to the bathroom – peeing felt like my organs were being rearranged and otherwise eliminating was difficult or impossible because of my pain meds. You know, the ones that don’t work. Back to bed, then, until the afternoon, usually late enough to make me upset that I’d wasted so much daylight. Maybe a little walk, once the blood clots got better. Definitely a few good cries. I’d eat whatever Kai brought me, or the food my editor from the Doppler made for me. Or I wouldn’t eat, because my appetite got trashed by the meds and the pain. I would return to bed early in the evening because I was exhausted and wanted out of that mental state, but sleep wouldn’t come. I’d cry in the bed beside a sleeping Kai, for my body, for the choices taken from me, for the choices I’m forced to make, for every woman who went through this without a circle like I have, without benefits like I have, without free healthcare like I have.
So if you add writing to a day like that, I’d call it a roaring success.
I know I am moving toward something big with this. I am thrilled and anxious to see it manifested. I don’t know that I’ve ever felt more ‘along for the ride’ than I do now. I have control over so many things, but not everything. And my body is done screaming at me to get attention. I won’t be ignored anymore.
Yesterday, I was going through old notes on my phone, deleting some. I always make a note to bring to the Nurse Practitioner, listing the things I want to discuss. Otherwise I end up forgetting the main issue and leaving her a rambling voicemail. I deleted a few more recent notes (“ask re genetic test for BRCA, change sleeping pill script, discuss bloodwork, ask for samples of feramax”) and then came across one from March 18 2019. It read:
Lump on head – skin tag?
Test for arthritis
Weird period thing
Ask for samples for robaxacet for shoulder injury
That was the first time I’d discussed any of what would later become ‘that cancer stuff’ with my nurse practitioner. It was the first time that the changes I’d observed in my period were odd enough to bring to light. It’s only because I know my body so intimately that I knew something wasn’t right and I didn’t ignore it.
That. That’s what I’m so grateful for. That I knew I had to get to the bottom of the ‘weird period thing’. I’m grateful my NP took me seriously. I’m grateful that my doctors are women who know that some things just shouldn’t be brushed off. Ovarian cancer is dreaded because it’s way too often caught in late stages. We caught mine early.
Here is the very first cancer poem I’ve written:
I always thought any ticking of a bomb
Would come from outside of me
The deterioration of our biosphere
Or the crosshairs of a man who hated me
for my shared and spoken truths
I denied that my body contained the capacity
For this most stealthy of betrayals.
Another example of my dedication to achievement,
Even my cells overdo it
I always suspected I was too much
How could I turn against myself like this –
Just as brain and body began to integrate?
Just as I got the courage to tell myself
You are good.
You are whole.
Have I lied? Am I wrong?
How could I have so convinced myself that I was done growing?
I’ll never be done
I learned that
I love poetry because it’s stripped down and raw, because word choice and flow create an experience. I’m not a very metaphorical person, my poetry is literal and accessible. And for some reason, unlike creative writing, unlike my column, unlike this, I don’t care if it’s good. It doesn’t need to be good; it just needs to be.
Kind of like me.
I thank you for reading this, for being a part of my journey. I thank you for being present and generous with your time, for allowing my world to overlay yours for the time it took to end here. I don’t get to choose what you take away from this, if anything. Maybe your conclusion is that you need to let go of ‘the perfect schedule’ or maybe that there needs to be space in your world for anger on behalf of yourself. Maybe it’s that you need to try your hand at, or get back to, writing poetry.
Any one of those would be remarkable. But if I could choose, I would insist that you take your body seriously when she asks you for help. That you notice her subtleties and shifts, that you thank her for speaking up. That you act when things don’t feel right. And that you insist on your own importance if you aren’t being heard.
Because you are important – and you are your body. Just as I am mine. With all my scars and tears and estrogen and cells and firing synapses. Indivisible.
On October 31st, Kai drove me to Royal Victoria Hospital in Barrie for my follow-up appointment with Dr. Ball, my gynecological oncologist. Because it was Hallowe’en, we were both wearing cat ears – Kai had the small, wire kind while I was sporting the oversized furry ones. Despite this, the content and tone of the meeting was fairly serious.
The doctor confirmed that the cancer is ovarian, endometrial subtype. All the rest of my biopsy results came back clear, including the lymph nodes, which means in terms of staging the cancer, it isn’t stage 3 or 4 because it hasn’t spread. But staging the cancer can only happen with surgery, and staging needs to happen in order to determine further treatment such as chemotherapy or radiation.
However, Dr. Ball is fairly confident the other ovary will contain the same cancer that the right one did when they examined it under the microscope. Her strategy is to remove the remaining ovary, the uterus, more lymph nodes on the left side. She explained that a third of young women with ovarian cancer have concurrent cancers, which is why she wants to remove the uterus, and because I do have uterine hyperplasia where they found precancerous cells, it only makes sense to do the full hysterectomy.
Well, it makes sense to an oncologist, anyway.
She also explained that, with my type of cancer, it’s not advised that I ever take hormone replacement therapy, because of the way my body responds to estrogen (by making cancer). Which means I will have the same risks of osteoporosis, heart disease, dementia, etc, as a woman thirty years my senior as the years go on. This is extremely disheartening news – I had just begun to adapt to the idea that I would have to go on HRT at such a young age – now to find out I’d have to go through menopause without any of the protective factors of hormones.
It’s a little odd to be crying in cat ears.
Dr. Ball explained a bit about what the surgery would look like: open surgery, where they’d go in through the same incision she’d made last time; 3 nights in the hospital to recover because it’s a major surgery; I’d have an epidural because of my lack of response to the pain medication the previous surgery.
I’d also get a referral to the menopause clinic in St. Mike’s hospital in Toronto, but when I followed up on that referral later, I found out they wouldn’t be able to see me for several months up to a year – so I wouldn’t be able to talk to experts on how best to prepare for menopause at 33 until it was already underway.
The doctor called the cancer slow-growing and ‘indolent’, but still feels it’s important to address it quickly and make sure it doesn’t have time to spread. She also recommended I get a second opinion, because I told her I was feeling like there weren’t any good options here and I was loath to have another surgery. In fact, when she told me she’d held a space in her operating room for me for the following week, I began to cry. I realized that I still wasn’t over the surgery that had gone wrong and the aftermath, and I just was not prepared to have another surgery so soon – physically or emotionally. Given that I was still dealing with blood clots and on blood thinners, she approved of my decision to do as she recommended and get a second opinion before moving forward with surgery.
The appointment was such a mess of questions and revelations and breakdowns – it felt like it took much longer than it did. I had to do more pre-op paperwork, which took longer now that I take more medication and have had other surgical procedures. It was hard to recognize that it would only get longer and more convoluted as this process went on.
A nurse came for my paperwork, and Kai and I left. I was moving slowly because of the deep vein thrombosis. We stopped at Shoppers to get some lip chap because we were on our way to Toronto for two days and I didn’t have any, and in the parking lot, I gave myself my daily injection of Fragmin in my bruised belly.
My appetite was demolished but Kai needed to eat so we stopped for that and I began the heavy job of processing what felt like another page in a new chapter of relentless bad news. It took ages to get to Toronto because we hit rush hour, and it was after dark on Hallowe’en night when we finally reached the neighbourhood in the Beach where our airbnb was located. It was pouring rain, and I asked that we just make a run for it rather than waiting out the rain because I wanted to feel like I was ‘home’ somewhere.
We arrived drenched, and the owner showed us around after giving us towels. It was a lovely studio in their basement with a queen bed for us to curl up in while we continued our Harry Potter marathon.
So, what brought us to Toronto despite me needing a break from the rest of my world, was the Toronto Symphony Orchestra playing along to the sixth Harry Potter movie, The Half-Blood Prince. Kai had got us tickets and we finally got around to the HP marathon she’d promised me she’d sit through when we’d first got together, upon learning what a total Potterhead I am.
We ordered Chinese food from the Garden Gate Restaurant, affectionately known as the Goof, which was soo delicious and inexpensive considering how much we ordered (enough that they gave us 6 sets of chopsticks). We got into our PJs and hunkered down in front of the TV, finishing the second film and taking a break before launching into the third, the Prisoner of Azkaban. Kai left to move the car closer to the house, now that the trick-or-treaters had gone home. It was windy as all get out, and while she was out, the power went out.
Luckily, the homeowner had shown us where to find a flashlight, so I grabbed that and waited for Kai to get back, hoping she hadn’t run into any trouble. She returned with tales of exploding transformers and wind that tried to sweep her off her feet.
We decided to continue the marathon on my laptop, fingers crossed for a long battery life.
I was in a lot of pain from being constipated, because I’d been in a lot of pain from cramping and blood clots so I’d been taking the hydromorphone more than usual. I couldn’t get comfy and when it was time to sleep, I couldn’t do that either.
The next day saw us move between the couch and the bed all day as we ate leftovers and finished the movie from the night before and watched two more. By 6pm, we were finally caught up! It was time to get dressed and call a Lyft (we had a coupon) to Meridian Hall. The driver was terrible, with a lead foot on both pedals, causing my already heightened anxiety to spike.
But we made it on time, and I straightened my witch’s hat, and we found our seats. Kai had got us seats against a wall, so I had that on one side and her on the other, and I felt better.
The movie was awesome and the orchestra was just brilliant. The audience was full of nerds in HP costumes – there was a house-elf sitting in front of us! It was such a cool experience to get to hear the familiar music in full force, and to see the orchestra playing beneath the big screen.
We were hungry after the show so we went to Craft, a spot that had a hundred beers on tap. We ordered a poutine and their take on Poke, as well as a flight of local beers. The place was super busy and though the food and beer were tasty, I was happy to get out of the noise –
Until, that is, we got into the cold while waiting for our Uber. There was a mix-up with the first driver where he wouldn’t drive us because his app said we were only one person and ours, obviously, said we were two. We got out and caught another one, which mercifully was just around the corner. This drive was a lot smoother and we got home in great time. It felt lovely to be back and settled.
Unfortunately for me it was another rough night of pain and nightmares, but I did get some sleep, and Kai was up earlier than me tidying up so I could sleep in. We stayed at the airbnb until one pm and then got back on the road.
As we were pulling into Huntsville, I saw that I had a text from my mom asking when I was going to be home. I told her we were at the exit, and when I walked inside, I saw why she’d messaged me.
I saw Priestess, my beloved 15-year-old calico cat sitting on my spot on the loveseat, which she would never choose to do of her own accord. I saw immediately something was wrong. She’d been at the vet the previous week due to her lack of appetite, and she’d been cleared for many major concerns and had been given medication for a thyroid problem – she’d weighed in at a mere 5 pounds. We’d been giving her the medication and she’d been eating okay – I’d checked in with my mom the previous day and she’d said Priestess was good, eating and taking her meds. I hadn’t worried; I’d been confident she would rally like she had before.
But looking at her on the loveseat, I saw otherwise. Her face was gaunt and she looked liked she’d lost even more weight. She hadn’t been grooming, and she was normally fastidious; her face and paws had food on them. My mom told me she hadn’t been eating, so I gave her salmon, and she had some, but she couldn’t really walk and it was hard to tell if she was incontinent or just couldn’t move quickly enough away from her pee and got it on her tail. I cleaned her up and held her in my arms while we watched the new Mary Poppins. It wasn’t until later that night when I set her down that I saw how much she’d declined. She couldn’t seem to walk at all and she wouldn’t eat anymore.
I asked Kai to stay the night, and I set up a little bed on an ottoman beside my bed, as Pree didn’t like sleeping on the bed because I move so much. But after a trip to the litter box, she tried to get into the bed, and I helped her. She rested on my chest, and I talked to her and told her how much I loved her, how grateful I was to have had her in my life since I was a teenager, and that it was okay for her to go if she had to.
When Priestess had been a kitten, she’d liked to crawl into the crook of my neck and nestle into my hair when I was laying down. She did this again, though she hadn’t in ages, and I helped her into position. I held her all night and around the time of the lost hour from Daylight Savings, Priestess died.
We buried her the next night, in the dark under the falling snow.
The meeting with the Nurse Practitioner on October 4th went well. She gave me a bottle of Palafer, a liquid iron supplement, because they were out of the Feramax samples she can normally give me. She also recommended I find out what my work benefits offer in terms of a walker, which I promptly forgot to do.
Even though I’ve worked hard to keep time for myself, and to ‘take it easy’ like everyone had been encouraging, the day of the surgery was too quickly approaching and I didn’t feel like I had things ready that needed to be, in order for me to return to a comfortable, safe space in which to convalesce. I’d wanted to bring some wood inside from the cord that had been delivered to my new woodshed. I’d wanted to make sure all my comfy clothes were the most accessible, that my cords and chargers were all straightened out. You know, all the messy things you don’t want to have to fight with when you can barely bend over. Unfortunately, with the exception of having to cancel almost everything I’d had planned, including the Town Council Deputation to present Hexagon, a women’s land community, I don’t think I paved the way for myself to recover very well. But I had my friends and family around me, time got booked off work, if without official documentation, and the surgery was happening whether I considered myself prepared or not.
On the 16th, I got a call around noon telling me that my appointment would be for 6am the following day, and to get the hospital in Barrie, about 1.5 hours from my house, for that time. I packed for a day trip and made one frantic and semi-incoherent phone call to my nurse practitioner because the medication she’d given me for anxiety didn’t work when I’d tried it a couple nights prior and I really needed something. She did prescribe something different and Kai picked it up, but I was too nervous to try something new the night before the surgery, so I didn’t bother (talk about getting in your own way…).
We made good time getting to the Royal Victorian Hospital in Barrie by 6am and had to do the usual navigation, registration, telling everyone everything. My pre-op stuff took longer than usual, so the ‘herd’ of the rest of the patients had left by the time I got back. My surgery was scheduled for 8am. I had to wear disposal underwear with a big wonking pad because I was still bleeding from the Provera (progesterone), but they fit quite nicely and for once I was part of the ‘all’ in ‘one-size-fits-all’.
Because the thrombophlebitis in my legs made walking incredibly difficult, I was slow moving to the next room where I’d go through one last round of who I am, what my birthday is, and what my allergies are – which I finally have to answer with something other than a chipper ‘nothing!’, now that I’m confirmed allergic to CT dye. I sit in that open space on a stool with my legs in agony as the blood pools in my lower extremities. I’d turned down three wheelchair offers by now – for some reason.
The nurse brings me into the operating room, and I’m glad to see the bed isn’t just a bare, icy silver table. They make me take off the underwear after all, and I sit up on the bed. My two least favourite things about operating rooms is how everyone touches you and talks to you at once, wanting your attention and focus; and secondly how everyone looks at you from above, where you have no choice to look back, except at any given time, they can leave your line of sight but you can’t leave theirs. That was very much happening in that room, even when Dr. Ball arrived. She is an extremely efficient and smart doctor, informative and patient, although sometimes I feel she moves a little too quickly even for me to comprehend.
They encourage me to lie back and stretch out my arms on the extensions with foam padding on them. It’s not long after that the mask comes over my face and no one counts down or tells me we’re beginning – I’m just gone.
I wake up extremely disoriented in a very large, very busy room. There’s no privacy and I sense that I’m tucked against a wall, but I’m flat on my back and can’t focus my eyes or my mind because of the anaesthesia. Nurses come to check on me but I have no conception of where I am, why, or what it all means. Finally, a young woman gives me her name and explains she’s a nurse. She tells me the procedure went well, just a little long. I finally remember that I’ve had surgery and immediately my abdomen agony makes sense.
“Did I lose an ovary?” I ask simply because of the degree of the pain I’m in. My voice is low and scratchy from the tube that delivers anesthetic. I knew about – and signed off on – the possibility of an ovary being removed, and it was within the ‘not-good-scenario’ realm of outcomes without being a worst-case. The nurse checked my file and read for a moment, then met my eyes, which were still struggling to focus. “Yes.”
I didn’t mean to dismiss her, but I looked away, at the side of the bed with rails on it. Only one ovary left, and a much more serious surgery than I’d anticipated.
With me being barely conscious and certainly not of sound enough mind to sign any contracts or make legal decisions, I was wheeled to the room where I would be spending the next two nights. So much for a day surgery.
I slept off and on but I was still out of it when Kai came in to see me. I remember being so happy to see her, though I couldn’t make my face express that reality. She reported after the fact that Dr. Ball had sought her out after my surgery, which went an hour over its scheduled time of 1.5 hours, and told Kai that, “In the end, Kathleen’s surgery was somewhat successful.” I, of course, knew nothing of this at the time.
Kai reports that post surgery I was pretty loopy and eventually fell asleep after drifting in and out thanks to rapid-tapping that hydromorphone (Dilaudid) button. I remember excruciating pain and fear.
Over the next few days in the hospital, I had a really rough time. When Dr. Ball came to consult with me, she informed me I’d lost .77L of blood, and that when she’d attempted to biopsy my right ovary, it essentially ‘shredded’, causing excessive bleeding which stubbornly resisted cauterization. The unfortunate decision, after many attempts to save it, was made to excise the ovary entirely. All the other biopsies and the cancer cell ‘wash’ went smoothly.
Dr. Ball informed me that she would visit me again before my discharge to see how I was faring and discuss next steps. It is my sincere belief that she did everything in her power to adhere to my wishes to keep my ovary intact, and in fact she showed me photos of my ovaries on her phone, which did not look recognisable as healthy body parts by any stretch of even the most vivid imagination.
Getting out of the bed to use the bathroom was an hour-long ordeal, punctuated by my pained noises as I tried to swallow my hurt so as not to disturb my roommate. Once standing, having to reach through the overloaded IV rack to unplug it was only about the third step, after actually exciting the bed, followed by staggering to the bathroom, trying to open and close the door behind me as my bladder, newly settling into a cavity not previously in existence, screams in a language I haven’t yet learned to speak – pain language.
With lines inserted into both hands, I tangle easily when trying to slip out of the housecoat and lower my hospital-grade disposable underwear. I sit on the toilet seat with an open-mouthed, soundless wail as my bladder empties in the most vengeful way I’ve ever experienced. Finally, everything internal seems to settle again. I can’t pass gas, which become an ongoing joke with a rising edge of fear throughout my time in the hospital. I can barely wipe because I can’t lean forward enough. I’m desperate and exhausted so I press the little button, try to get my housecoat back on, wash my hands while avoiding the most awkwardly placed IV lines, and get back to my bed.
Again, I reach through the IV pole to plug the entire unit back in, lest it beep all night. I sit, with the caution of one with her finger on the nuclear warhead trigger, on the edge of the bed. Inch by inch, I organize myself back into the centre of the bed, and then raise my legs slightly because my thrombophlebitis is agonizing, and lower the bed slightly.
I’m sweating, I’m crying, I’m waiting for the little green light on my Dilaudid button to flash because that means 8 minutes has passed since I hit it last and I can have another moment of relief. It never takes the pain away – there’s no such thing – but it’s enough to make me feel like maybe, with enough time in between, I could do this whole ordeal again.
Back in my bed with Kai by my side, I doze off until I heard the most distinct sound – I woke right up and said, “Nancy!” My friend’s beloved and recognizable footsteps were coming my way! Everyone was duly impressed that I could hear her coming.
We had a wonderful visit, and they went to get dinner together and brought me back some chicken wings. It was fairly late when Nancy left, and Kai stayed the night at the Rotary House, for caregivers of those staying in the hospital. It was $45 a night and just across the parking lot, so extremely convenient.
I didn’t sleep well that night, although at least I didn’t have to try to get up to pee a hundred times like I normally do, since I had a catheter inserted.
That wasn’t to last, however – one of the nurses came by around 8am to pull it out, and that was an interesting experience. It didn’t hurt, but it was so weird. The catheter stays in because there’s a balloon inside the bladder filled with water, so to withdraw it, they empty the balloon and tug the entire thing out through the urethra. It felt super odd, but not painful at least. Unfortunately, from that point on, trying to use the bathroom felt like a crisis. Each pee was agony as my insides rearranged themselves to make up for the lack of ovary, and I couldn’t pass gas or anything else.
The only positive about this situation was short-lived but very welcome. It seemed that the release of pressure from the ovary against my lymph nodes helped the blood flow in my legs returned, so the pain from the thrombophlebitis eased up for an entire day, to the point where I thought maybe it was gone altogether.
People came to take my bloodwork, I met new nurses, and got a different roommate that day. I also got wheeled to a distant area in the hospital to have Dopplers taken of my legs to make sure I didn’t have deep vein thrombosis, which Huntsville Hospital had already confirmed more than two weeks prior. I felt extremely nauseous and had to take a barf bucket with me. I never did throw up, though. I had not taken any pain medication that morning because I wanted to make sure I had my head on straight for the ultrasound in case they told me anything, so my pain level was climbing.
My stepmom Carolyn also visited and brought me lovely flowers, and we had a retro convo, and she got to meet my girlfriend. She could tell I didn’t have a tonne of energy, so she left and I still hadn’t had pain medication – I was sick and shaky from pain by that point.
Which, of course, is when the ‘pain team’ came to talk to me, and this felt less like a discussion and more like a directive to stop using the morphine button. My nurses had told me that the intention was for me to use it whenever my pain was higher than about a four, so that’s what I’d been doing. No one else had acted like using the button was a bad thing, but now this team was making it seem like I was abusing it. I felt ashamed and of course wanted to stop using it so that I could adjust to the pain naturally and then not feel reliant on it when it was time to leave the hospital. So, since I hadn’t used it yet that day, I decided I would just stop altogether.
But my pain climbed and escalated, and when my nurse came to check on me, I was pale and crying and explained my thought process. The nurse told me that if I needed pain relief, it was absurd not to use it, as that’s what it’s there for. And since I’d be there another night, and I was already at a six or seven for pain, it wasn’t a problem to use the button into the next day when it was closer to my time to leave. I was so relieved to get reassured of this that I forgave that nurse for blowing my vein and forcing an ‘expert’ to come and put another line on my wrist near my hand, limiting my mobility even more.
I needed all these lines because I needed three bags for my blood transfusions and one bag for an iron infusion, plus the IV, gravol, and pain meds on the other line.
My friend Nancy returned with my mom from Huntsville, and we all had a lovely visit together – Nancy brought me chaat from the hospital food court, which I loved, as well as some more chicken wings. I couldn’t eat much because my appetite wasn’t very strong, but having company was really nice, despite my pain.
I slept much better that night because I was freer with the Dilaudid button, and even though I torturously attempted to use the bathroom several times, I was able to get some sleep, especially with my noise-cancelling headphones.
One of the first things I learned the next morning, however, was that I had confirmed deep blood clots in my left leg – so, the DVT I’d been told I didn’t have, which had been like the only good news I’d heard on this entire journey! Oh, shit. So the nurse taught me to self-administer Fragmin injections, an intense clot buster with blood thinning properties that I’d have to take every day until further notice.
I saw Dr. Ball again, and we discussed the DVT and whether it was from the pressure of the ovary against the lymph node, the cancer which had not yet been confirmed, or the Provera, the progesterone medication I’d been taking for a couple months. There was no real way to know, so I was to stop the Provera and inject the Fragmin daily. I tried to get some more answers from the doctor, but she slowed me down with ‘one step at a time’ and let me know that she’d see me at our appointment on Hallowe’en, and to call her office if I needed anything.
Nancy returned with my mom once again, once I explained I was being discharged. Slowly, I got detached from all the equipment, and finally I was free of cords and lines, and I could get dressed. My legs felt awful – I couldn’t straighten or bend them very much – and my core was completely weak due to the incision, so my mobility was more limited than it had ever been. My mom wheeled me out of the hospital with Nancy carrying all my belongings, and we got into Nancy’s car, where she’d set up a pillow in the footwell so my legs could be raised.
The drive back to Huntsville was uneventful, but I certainly learned just how involuntary it is to clench one’s abdomen when driving around turns.
Back in Huntsville, Nancy and her husband Jay helped me get my space set up with some stuff from their place, like a chair-like thing with arms and a back to sit in the bed against the wall, which was a huge help when it came to getting in and out of the bed. We sat and chatted while my mom picked up my Fragmin and got us all McDonald’s french fries.
The Fragmin is $1400 for a month’s supply of life-saving medication, since DVT can cause pulmonary embolism. But with my benefits, it cost me a mere $400. I was horrified – so much for my meagre savings that I’d begun to collect since I started full-time at the shelter only a few months before.
I think it’s okay to fast-forward a bit because the next couple days consisted of a lot of crying – like, so much crying – and so many different awkward ways of getting in and out of bed. It was around day five after the surgery that I began to feel better, when I could move around of my own volition. And while my mom and my girlfriend were extremely helpful, I so just wanted my independence back.
I also had to retreat even more from the things I took pride in, like my Doppler articles – I had to request a leave while I tried to sort out my emotional life and balance that with my pain. I also had to pause my volunteer work with Sexual Assault Services because I just couldn’t get around town the way I would need to. Overall, I began to feel like there was nothing left. And my community of people is amazing, but classically everyone says, “Let me know if there’s anything I can do,”, but I still can’t bring myself to reply, “Well, my eavestroughs are clogged and also I’m desperately lonely.” But I’m learning.
On Thursday, October 24th, I went to see my nurse practitioner. She had some of the results from all the biopsies. And would you believe that almost everything came back clear? No cancer in my lymph nodes, the wash came back free of cancer cells. Lots of good news, except that there was indeed cancer in the ovary they had to remove.
But even this is so interesting. To her understanding, the doctor would normally biopsy the external of the ovarian cyst, which means that if the surgery had gone perfectly to plan, they wouldn’t have found the cancer, which was precisely contained within the ovarian cyst without any external evidence. So I’m extremely luck the cyst burst and had to be removed, otherwise I would have had ovarian cancer but no one would have known, which would not have had a good prognosis.
So yes, it’s cancer. That ovary is gone but the one that remains, lefty, is actually the larger and messier of the two, so it’s looking pretty definitive that lefty is up on the chopping block next. The uterus, from the outside, anyway, looks great! But there’s no reason to keep the uterus without the ovaries. And so the next surgery looks as though it may be booked for mid-November, and from there I’ll be going through menopause immediately. Shitty, but hey – that’s cancer for you! Emotionally I’m feeling really messed up. Even though throughout this entire journey, everything looked so suspicious, I still bore such hope that I would be that outlier, that person who against the odds and evidence ended up perfectly fine.
I am not perfectly fine. I am in extreme pain from 1. the deep vein thrombosis; 2. stopping the Provera means the killer cramping in my uterus is back; 3. the incision itself, which unfortunately is hinting at infection; and 4. I’m heartbroken that I have to deal with this when I felt like there was so much in my life that I was doing ‘right’. If I’d been a rude or cruel person, if I’d been on the ‘wrong path’, if I’d been ignoring all the signs pointing me toward the life I’d been meant to lead, then maybe I’d accept this ‘eye-opener’ and make changes. But instead, I feel like cancer completely sideswiped me off the trail that I was meant to be on, that I was doing good work on, that I was finding myself on…
Regardless of the ‘why’ of all this, it’s happening and if nothing else it’s a VERY interesting experience. I’m thinking about mortality, motherhood (since I’m infertile suddenly), and meaning. I’m learning so much about the medical world, and I’m learning about myself. I’m okay with all this. There’s no guarantees in life, there’s no roadmap, and there’s nothing and no one that ever said, ‘if you are good in the following ways, you will be rewarded’.
Cancer isn’t punishment, and I don’t need to constantly be positive or change my attitude to suit others. I need to be real, and I need to be loved even when I’m sad or upset. Especially when.