September 11th, here we are again. A date that is impossible to overlook on our calendars. That date became etched in our brains back in 2001, and became extra awful (as if it needed to become so) for me in 2012, when I was diagnosed with breast cancer a month after my 28th birthday.
So here we are again, another cancerversary, another trip around the sun. This one is a biggie, too: five years. When cancer stats talk about rates of long-term survival, they typically are talking about people who live beyond five years. It’s thought that after that point, your risk of biting the big one continues to drop and you can rest a little easier. Obviously there are all sorts of problems with measuring survival like this, as breast cancer can and does recur many years down the road. So it’s not really a clear indicator of triumph. But it’s the closest thing we’ve got, so for now, I’ll take it. Five years, I’m still here. Has a nice ring to it.
I wish I could say I’ve put it all behind me and never think about the big C anymore, but that would be a lie, and no one likes a liar.
I still have the occasional scare, one of which occurred early in my pregnancy that completely derailed me. The stakes have become infinitely higher now that I have my little baby to think about. Before there were all sorts of things that sucked about the possibility of death. Big time. But now that I’m a mom, I can’t even allow my brain to go there. It’s too much. So when something scary pops up, and my mind is forced to go there… it ain’t pretty. And I hate that I still have to live with these terrifying possibilities. I know so many young women who have died of breast cancer, I’ve lost count. Many of them gone in the past year. What makes me luckier than them? Why should my ending be any different? These questions burn inside of me, no matter how hard I might try to put out the fire. But fortunately, I have the most amazing little distraction to keep me occupied and prevent me from obsessing over my worst fears all day long.
And speaking of that distraction, he pretty much takes up all of my minutes and hours of the day, as babies tend to do. So I don’t have much time to flesh out deep thoughts about what this day means to me. I’m too busy feeding and changing diapers and participating in tickle fights and fits of laughter. And really, when it comes down to it, that’s what this day means. It means everything. Because I have him.
Hi! I am still alive! In case you were worried I might not be. But the adage no news is good news tends to apply with me.
I know people want me to write frequently (quite literally, I have had people shout at me YOU HAVE TO KEEP WRITING), which is very flattering, but I have been busy busy busy with work and life and all that jazz. I do intend to keep writing, in some form or another, I just need to carve out some time to do it. A couple nights ago when I was in the midst of one of my insomnia spells, I lay awake thinking up ideas for books, which I’m taking as a sign that maybe a brilliant idea is about to be bestowed upon me. But for now I just haven’t had the space in my brain to do much of anything. I’m taking a bit of a break after finishing my column with ELLE but never fear, I’ll get back at it again. Just need time for some creative inspiration to hit me on the head.
I just came across this post and was like, oh cool, it’s a list about me, “the cancer woman”. Then I realized it’s about women who are born under the cancer zodiac sign, which initially didn’t even cross my mind. I see the world through cancer-coloured lenses it seems. (Side note: sometimes my husband and I refer to myself as ‘Cancer Girl’ or ‘Cancer Wife’… which I guess is a bit dark, but it makes us giggle.)
And in other cancer news, tomorrow (well pretty much today, because I am up late writing this) is my third cancerversary! If you know me, you know that I love using cancer as a way to celebrate and I end up making up lots of holidays that don’t really exist BECAUSE I HAD CANCER SO I CAN DO WHAT I WANT. My cancerversary is one of my favourite of said holidays. Even though it’s a reminder of the worst goddamn day of my life, I’ve chosen to turn it on its head and make it into a day to celebrate that I’m still alive. Because being alive is so wonderful and we could probably all use some more reminders of this simple fact.
Tomorrow morning I’m headed to the Big Apple on, yep, September 11th. And I can’t think of anywhere more fitting to be for cancerversary #3. September 11th. A day to reflect on the pain of the past, and feel optimistic about the future, and celebrate the fact that we’re still here. I’m still here!
I’ve been thinking a lot lately of the lessons I’ve learned and wisdom gained as a result of having had a life-threatening disease at a young age. I received a lot of positive feedback from my recent column for ELLE where I wrote about the effect my cancer had on my career, and how it made me unable to work in any type of environment where I didn’t feel happy and fulfilled. Some people seem to think leaving my job was revolutionary, but to me, it was just a natural consequence of my post-cancer no-bullshit attitude.
But I’ve realized that not everyone has gone through a terrifying health scare (you lucky dogs, you!) and that what now seems obvious to me might not be so obvious to the average Joe or Jane. So being the generous soul that I am, I’m going to share some of my bits of wisdom with you that I’ve picked up along the way.
Spend your money
I have always been really good with money. I’ve saved since I was a wee child, always cautious with my spending. While most Jewish kids take their bar/bat mitzvah money and immediately spend it on something awesome, mine went straight into the bank. I wanted to keep building my savings, for my future house/kids/retirement/life.
And then cancer came onto the scene, I thought I was at death’s door, and I stopped planning and caring so much about the future, because I wasn’t sure it was going to come. It seemed silly to spend time calculating how much I needed to retire if I were going to be dead long before then anyway.
As time goes on, my senses have somewhat returned and I realize there is a chance I could live until retirement and it’s still a good idea to plan for the future (luckily I have my very intelligent, finance-minded husband who locks up money in secret places I can’t find it so that I will not find myself on the streets come age 65). But even though I’m still saving and planning, I’m also not stressing about it anymore. If throwing a bit of money at a problem makes my life easier, whether it’s taking a cab home because it’s freezing out, or ordering takeout because I’m too lazy to cook, I’ll do it, without giving it a thought. Obviously I’m not walking around every day sipping Dom Pérignon and eating caviar (although there’s a fun image for you), but I’m caring a lot less and enjoying a lot more. Which leads me to my next point…
Go on vacation
This involves spending money too, and potentially a fair amount of it if you go somewhere super awesome, so I feel like I should put in some sort of disclaimer that you’re not allowed to come back and yell at me after you’ve gone broke from following all my rules. Okay, glad we got that out of the way.
I was diagnosed with cancer a couple months before my husband and I were booked to go to Jamaica for a holiday. Cancelling that trip was such a bummer. Rebooking that trip and finally getting there after I finished chemo and radiation was pure bliss. And then we decided that that wasn’t enough, and went back again 6 months later.
We’ve travelled a bunch since cancer, little trips here and there, some bigger. After going through something like cancer where you’re not allowed to travel, and where you dream about someday getting on a plane and being anywhere but your couch or bathroom, you never take going on vacation for granted again. Although we still have all the same old work and financial constraints we always had, we’re now much more likely to just say “screw it” and book a ticket and go somewhere.
Enjoy your food
Okay, if you know me, you know this was never an issue for me pre-cancer. But if anything, I enjoy eating even more now than I did before. It is such an amazing pleasure that so many of us don’t take the time to appreciate. But let me tell you, losing your sense of taste and losing your ability to eat the foods you like because of the many gross side effects from cancer treatment, really makes you realize how amazing eating is.
I try my best to eat healthy and balanced, but I also love my sweets, and my carbs… and bacon. And I don’t apologize for any of it. Because you know what? Life is short, and if I get hit by a bus tomorrow, or die from cancer, or anything else, at least I’ll die knowing that I didn’t deprive myself of one of my greatest joys in life. Food is good. Make good choices, but don’t stress about it so much. Order the side of fries, or have the slice of cake. JUST EAT.
Don’t waste time doing something you hate
I referenced this earlier and have written about it already, but it’s amazing how many people fall into the trap of being comfortable in a situation that makes them unhappy – a job, a relationship, a mindset. Whatever it is, if it’s making you miserable, get the hell out. Seriously. Time is so bloody precious and you don’t want to waste a second of it.
Choose happiness. Choose you. Once you make that choice, good things will start to happen. (But if this leads to you quitting your job and not being able to pay your rent, please don’t show up at my house, seriously my husband will kill me.)
Have you ever noticed how much people are stressed out on a daily basis? Take a look around you. It sometimes seems like everyone is stressed, anxious, uptight. If this is you, stop it. Stop it right now. Sure there is “productive” stress. A little bit here and there can do some good and help get things done. But for the most part, all it does is yucky things to your body and mind.
Even though I still find myself getting worked up in stressful situations, I’m much better now at not letting anyone else’s bullshit get to me. I just don’t have the time or patience for it. If I do notice my stress levels start to rise, I think to myself, Is this really that important? Is this life or death? And the answer is almost always no. And then I snap out of it, eat a cookie, and move on.
Don’t take your health for granted
Yep, this is the big one. I don’t think it’s possible to go through something like cancer without having a newfound appreciation for how amazing your body is when it’s working properly. Since having cancer, every day that I’m able to lift my arms, have control of my bowels, have hair growing from my scalp, can hold food down, can sit upright, can move without excruciating pain, can walk down the stairs without passing out IS A FREAKING AMAZING DAY. It’s like the wise John Mayer once said – your body is a wonderland. If yours is functioning properly without trying to kill you, then you’re extremely lucky.
Really, what it all boils down to, is we’ve all only got one life to live. So live it, and live it well. And most importantly, remember these six words to guide you through: There is always room for dessert.
I’ve written before about the “perks” of cancer, and I now have another perk to add to the list: Getting invited to cool charity parties.
I was asked to attend a recent fundraiser in support of Pink Pearl Foundation, a “not-for-profit organization that brings together young women who have been affected by cancer through a network of peer-support and innovative programs.” They are based in the Hamilton-Niagara area. Obviously I was eager to jump on board and get behind their cause, since I know first-hand the importance of receiving support as a young woman with cancer.
The event was called “Black & White with a Touch of Pink” and is hosted annually to raise funds for Pink Pearl so that they can continue running their programs. This year’s party took place in Toronto at Airship 37 (a venue I previously had never heard of, but now think would make a perfect wedding venue, if anyone is looking. PS please invite me.)
The evening was hosted by Michelle Dubé, anchor of CTV News Toronto, who may have been the most fabulous-looking pregnant woman I have ever seen. If I ever find myself pregnant, my wish is to look like Michelle Dubé.
After Michelle’s introduction, two young cancer survivors received education scholarships and shared their stories. Maddie was diagnosed with leukemia at age 20, and Candace at age 23. As a result of being diagnosed with cancer, they are headed down career paths involving medical and non-profit work — something that I can relate to. It seems it’s a common trope among young cancer survivors, to switch gears and seek a meaningful vocation. There’s nothing like having a life-threatening disease at a young age to help clarify what you want to do with your life (although you might just want to take one of those 5-minute career quizzes online. Way more efficient than getting cancer).
The rest of the evening was filled with delicious eats, drink, music, and dancing.
Speaking of eats, I quite literally chased down the woman serving these mini grilled cheeses. What is it about mini food that makes it taste so good? This was seriously one of the best grilled cheeses I’ve ever had.
We were entertained by the live band and shimmied our way across the dance floor. (My husband busted out some serious moves, which you may have already seen on my Instagram.)
When we were ready to hit the dusty trail, I grabbed a gift bag. Score! I love me a good loot bag. And this one consisted of only clean and ethical products that promote healthy living, which was extra nice.
Thanks to Pink Pearl for inviting me to your awesome party! Your organization is changing lives and helping people in a big way.
And on a final note, if anyone else wants me to attend their super fun charity event, hit me up and I am happy to oblige. Just please make sure there’s ample grilled cheese. That’s essentially the only real incentive I need to do anything.
Friday morning I woke up and noticed my eye felt a bit weird and wouldn’t open as wide as it usually does. I looked in the mirror and saw that my left eyelid was drooping and my pupil seemed smaller.
I assumed it was a reaction to sleeping terribly all week (or for the past 2 years, really), but then upon discussing with my sister, who had spoken to a physician where she’s working, I started to get concerned it might be something more serious.
I learned that drooping eye + constricted pupil are symptoms of something called Horner’s Syndrome. Add this to the ongoing list of Things I now know way too much about that I never cared about knowing. It’s caused by nerve damage, which can be the result of many things, including a tumour in the lung or brain.
Sound the alarm bells. Ugh.
I really didn’t feel like dealing with more bizarre medical stuff, so I went to work as usual. I contacted my oncologist to see if he thought it was of any concern. He’s usually fairly relaxed about this kind of stuff and takes more of a wait-and-see approach, so I assumed that is what he would say. A couple hours later, while I was eating lunch with my sister, I received an email from a nurse informing me my doctor says I should go to the ER.
So I decided what the hell, I’ll spend a couple hours in emerg, they’ll tell me there’s nothing they can do, and I’ll be home before the end of the day. I packed up my stuff and my sister and I walked over to the hospital.
And this was the beginning of what I will now fondly refer to as 24 Hours In Hell.
I made it through the triage system fairly swiftly and was seen within an hour, which is very speedy in emergency room land.
My first interaction was with a nurse practitioner.
“Hey, I remember you,” I said, recalling having been seen by this same nurse the last time I was in the ER.
“Well yah, I work here,” she shot back, sarcastically.
As you may be able to surmise, this gal’s bedside manner was pretty much non-existent.
She did some neuro tests on me, following my eyes around and making sure I hadn’t had a stroke and all that jazz. She was cold and had no empathy throughout her questions and examination. She then said she’d have to order a brain CT to rule out anything serious. We asked about doing the lung imaging, due to the relation to Horner’s Syndrome, and she said she had never heard of that and would have to look it up. This did not bring me comfort.
I told her I’d prefer not to have a CT as I try to minimize all radiation to my body unless absolutely necessary. She said there would be no way to get an MRI because it takes forever to get one. She went off to talk to the staff doctor and said she’d come find us in a bit. I asked if I was allowed to see a doctor and speak to one myself.
“Ummm yeaaah, I guess. I’ll see what she says.”
THANKS, MEAN NURSE LADY!
She disappeared, and my sister and I were stuck waiting in a couple chairs right in front of the nursing station, as there were no beds or properly designated areas to wait. I sat and watched while a man a few feet away from me was screaming in pain while a doctor performed some kind of procedure, not bothering to draw the curtains. He stared at me the whole time crying in pain. I tried to stare at the floor but it was hard to look away.
All over, people were screaming, whining, coughing. Some from prison, many from the streets, a whole hodgepodge of people in agony smushed into a tiny corner of the hospital.
We found Mean Nurse and asked her what was going on.
“You’re going to do a chest xray, blood work, and a brain CT. We’ll need to see if there’s any kind of metastasis from your cancer and then we’ll refer you to the appropriate clinic after.”
This woman was literally casually talking about the possibility of my cancer having migrated to my brain, in the middle of the squishy, crammed hallway, with zero privacy. She may as well have said, “I’m going out to get some groceries” for how little she seemed to care about what she was saying.
We pushed again for the MRI, and she said she’d check, looking as though she were doing us a huge favour. We sat around and waited some more. She came back and said she managed to get me an MRI slot and it could take a few hours, and in the meantime, I’d be seen by a neurologist.
Ok, so I guess we’re staying here for dinner, I thought. Oh, how naive I was back in those first few hours.
We asked Mean Nurse if there was at least anywhere else we could sit and wait where we didn’t have to watch patients bleeding from their head lying a couple feet from us.
“Nope,” she said, “this is how it is. We’re all stuck in this emergency room shit-hole together.”
THANKS FOR YOUR HELP, YOU HAVE BEEN SO KIND AND PATIENT AS I SIT HERE WAITING TO FIND OUT IF I’M DYING.
Mean Nurse disappeared once more, and we never saw her again. I didn’t know who I should talk to, where I should go, or what I was supposed to be doing. I eventually found my way over to the chest xray, which took two minutes, and then wandered around asking people where I should get my blood-work done.
I found a nurse who said she would take my blood. As has happened to me so many times before, she had problems getting the needle and little catheter tube into my vein and had to press and poke around, causing unnecessary pain. This is when the tears started to come, sitting in another cramped hall while a large man in a bed stared at me. At this point, I was exhausted and starting to get worried, and I needed a good cry. So I let it out, my tears spilling down my face, nose running, red cheeks. Eventually she got the thing to work, took the blood, and then left the tube in to be accessed later for my MRI injection. Because she had put the needle in incorrectly (which I didn’t know at the time), it was difficult to move my arm without pain.
I went back to where my sister was waiting, and then my husband came to join us. It was a real party up in there.
After some more waiting, a neurology resident came to check me out, doing all the same tests Mean Nurse had done earlier. He wasn’t really able to provide me with any new information or any indication of what they were looking for, but at least he was the first person who wasn’t a complete a-hole. He said the brain MRI was definitely the right test to order (good thing we had to beg for it), and he’d discuss with his staff physician and get back to us.
The resident returned and told me that they’d like to admit me for the night, because there were no MRI spots available at that time, so I’d have to go first thing in the morning.
“But Mean Nurse told me she had booked me for an MRI and it would happen in a few hours,” I said.
“I’m not sure what happened there, but I called them and you are not on the list. I guess there was some miscommunication. The first slot for emergency cases is tomorrow at 5AM.”
I asked if I could go home and sleep and come back in the morning, but he told me that that’s not how it works and if I stay as an inpatient, the process will move much faster.
“Can I just go home, but pretend I’m here the whole time, and race back in the morning?”
He did not seem to appreciate that suggestion.
The resident apologized for the mixup and that I was stuck there and told us to go over to admitting.
We wandered over to the admitting desk.
“The admitting secretary is on break,” said a woman at the desk.
“Do you know when she’ll be back?” we asked.
“Can anyone else admit me so I can be in the queue to get a room?”
“No, only she can.”
We waited some more. She did not return. We decided to make a quick escape to McDonald’s. I had already eaten a burger and fries that day, but I figured, if I’m going to die soon anyway, I’m going to shove my face with fast food as much as I can. So we sat in McDonald’s, with a blood-filled tube hanging from my arm, eating some nuggets and fries.
When we returned to the hospital, the admitting woman was back at her post. We gave her our info for insurance, and she told us we should have a room in an hour or two.
We went around the corner to some old reclining chairs where people get blood drawn and perched there for awhile. The hours continued to pass. We went back to the admitting desk to ask if she could check how long until I could get a bed. She said she wasn’t able to tell us that information, as if we were asking for top-secret super spy information. My sister headed up to the neuro floor to see if there was anyone there who could help us out, to no avail.
I walked around to suss out the situation and saw a man being questioned by the police, his entire face and body covered in blood.
A new nurse appeared for the night shift. We asked him to check in on the room situation, and he was happy to help and made a call. He was the first person who actually smiled and seemed capable of compassion and eager to assist us. He was my angel, in the middle of hell.
Nice Nurse told us that I was not getting a room that night. At this point, it was around midnight. Whether the admitting lady had lied to us, or was just clueless, I am not sure. But we were never getting a room. It was all a big lie.
I asked him if there was any way I’d get the MRI that night, and he said not likely, as they only keep two slots for emergency MRIs at night and they had to keep them open.
“Does a young girl with cancer who might possibly have a brain tumour not count as high on the priority list?” I asked, mostly rhetorically.
He smiled. “Fair enough,” he said.
Nice Nurse said he would find a bed in the ER for us so I could at least lie down and try to get a few hours of sleep. We returned to our chairs, eating McFlurry sundaes, while the patient behind the curtain in front of us discussed her leaking stomach, and another patient on the other side of the curtain fainted in the bathroom, causing a massive commotion with several people yelling.
Finally Nice Nurse returned with the best news I’d heard all day: he had a bed for us down the hall. It was just a skinny ER bed, with a half-broken recliner beside it for my sister, but it was a huge step up and felt like we’d just been given a free night’s stay at the Four Seasons. A place to rest my head and catch some Zzzz’s. Glorious!
My husband left for the night to get some rest, and we tucked ourselves in.
Unfortunately, on the other side of our curtain, was a very loud family that decided to chit chat and talk loudly on their cell phone all night. I tossed and turned for the next several hours, in and out of a sort of half-sleeping state, waiting for 5AM to roll around.
I looked at my watch and noticed it was 6AM. I stumbled out into the hall and over to the nursing station to find Nice Nurse.
“What happened to my 5:00 MRI?”
“An emergency came in, so you’ll now be closer to 10:00.”
I went back to my spot and told my sister, and we cursed at our noisy neighbours who were still being noisy.
“I really don’t want to die yet,” I said to my sister. “I’ll be super pissed if there’s a tumour in my brain. I am so sick of this crap. I know I shouldn’t complain, though, because other people have really hard lives.”
“Your life is hard too,” my sister reminded me.
“I think my funeral would be really packed,” I continued. “It’s so sad to think that I wouldn’t be there, because I really want to see who shows up. If I find out I’m dying, I think I’ll start making a guest list for the funeral.”
Breakfast came, which included corn flakes and bluberry Greek yogurt. I think that’s pretty much the holy grail of hospital breakfasts, so I was quite happy.
Finally a new nurse came by and told me I’d be going up for my MRI shortly and to get in my gown and get ready. WOOHOO! I never thought I’d be so happy to get wheeled into an MRI.
Before heading up, the nurse flushed the IV, and it stung like hell. I told her the same thing had happened the night before when it was flushed, but that nurse hadn’t seemed to care.
“That shouldn’t happen,” said New Nurse. “If it’s burning, that means it wasn’t put in right. I’m going to have to redo it.”
This meant that I had that thing dangling from my arm for approximately 20 hours for absolutely no reason.
She took out the old one, and put in a new one, on the first try. She flushed it again, and whaddya know, no burning. This made New Nurse quickly transform into Best Nurse.
A porter came and wheeled me up to the MRI, even though I could walk perfectly, but apparently they don’t let you walk. So I decided to pretend I was royalty and lay back and enjoy the ride.
The MRI was uneventful, same as the ones I’ve had before. Confined space, loud sounds and vibrations, the usual.
After returning to my “bedroom”, a senior resident from Neurology came to speak to me.
After going through a bit of my history and what had transpired in the past 24 hours, he asked me if anyone had explained yet why they were doing the tests they were doing and what they were looking for. I told him no one had really talked to me at all this entire time.
He told me about Horner’s Syndrome–the first person to mention this since I’d googled it the day before–and the possibility of there being some sort of nerve damage causing it. He said I’d done the right thing going to the ER and it was worth looking into, considering my breast cancer history. I told him I’d been told earlier it could take the entire day to get the results, and he said there was no way it should take that long, and he’d push to get the report and would check in an hour. I told him I’d been teased many times before, with promises like his, and he assured us he would return and wouldn’t up and disappear without telling me what was going on inside my brain.
My husband returned and we ate some Tim Horton’s (sidenote: have you tried the new salted caramel timbits? Hella good). More time passed, and our frustration continued to grow as we felt like trapped prisoners with no clue as to when we’d ever be released.
The deadline of when Senior Resident said he’d get back to us had come and gone. We asked a nurse to page neurology and she said she would. More time passed, and nothing, and no one. I walked back down the hall towards the nursing station, a zombie with dark circles under my eyes, shoelaces dragging on the floor, greasy hair hanging over my eyes. I found the nurse.
“Did you page neurology?” I asked.
“Oh, no, sorry, I’ve been really busy but I’ll get to it in a bit,” she said.
A handsome doctor was sitting at the desk, on the computer, and asked if he could help me with something. I explained the situation.
“I know your case,” he said, “I was reading about you this morning. I think your report is available, let me see if I can call it up. That must be really stressful, having to wait for news like that.”
This was the first medical professional who actually acknowledged how I might be feeling throughout this whole ordeal. He quickly became my hero.
He looked at his screen and saw that, indeed, my report was there. He printed it off and went over it with me. No mass found, no metastatic disease or abnormality. Nada.
“Oh, that’s good to know!” I exclaimed, but he had to take a phone call. I motioned a thumbs-up to him, and he smiled. I went back to my spot, carrying the report in my hand.
“So I don’t have a brain tumour,” I told my sister and husband. Happiness all around. My sister let out a huge sigh of relief, revealing she had overheard a conversation earlier where one of the emergency doctors expressed concern that there may be a mass in my brain.
The Senior Resident returned with discharge papers and I told him I’d already accessed the report through Handsome Doctor. He told me they don’t know what caused my symptoms but they’ll be referring me to a neurologist to see at a later point. We all agreed we were glad there was no tumour pushing on my brain, and I thanked Senior Resident for his help.
My husband quickly ushered me out, worried that someone would come back with another reason to hold us hostage for the next several days.
We left the hospital and went outside, blinded by the light of the sun. My sister went home on her bike, and my husband and I walked home. I immediately jumped in the shower, not having changed in two days and feeling incredibly grimy. I scrubbed hard to remove the hospital smell and the remnants of the past 24 hours.
I lay on the couch, feeling grateful that the entire experience had been nothing more than a very strange and unpleasant day. It is hard to come to terms with the fact that any new medical issue will always be seen in the context of having had cancer, at least for the foreseeable future. I will always have to live with that possibility that the cancer has spread, and a new tumour has found a home in a place I’d rather it not live. I don’t know what caused the eye issues, and I don’t know how long it will be until the next thing pops up that throws everyone into a panic. Hopefully I can get a nice long break after this one.
For now, I feel lucky. I can look back at the whole experience and laugh, and remember it as “The Day I Ate A McFlurry In The ER While A Woman Fainted Beside Me” rather than “The Day I Found Out I Had A Brain Tumour.”
Sorry it’s been awhile. I’ve been pretty busy and am usually too exhausted by the end of the day to update you on the various goings-on in my life. And when I’m not working, or writing, or doing various extracurriculars, I am spending time binge-watching old Friends episodes, along with everyone else in North America. Turns out the whole Ross-and-Rachel saga is just as enthralling as it was twenty years ago.
I’m not sure if I’ve told you this already, but I’ve been taking improv comedy classes at Second City since last summer. At first, it was just a writing assignment, to challenge myself to try it out, even though I’d had no prior interest. I’m now almost finished the third level, and signed up for the fourth. I look forward to it every week. I get to laugh and make other people laugh, which are two of my very favourite things. I’m not sure how serious I’ll get with it, but for now, I’m having a gay ol’ time.
Oh! I also should mention, I will be sailing the high seas in a month. My family and I are headed for the Caribbean to escape this brutal winter and spend some QT together. When I was sick, we had talked about taking a trip to somewhere warm once I finished treatment. So I reached into my wallet, pulled out my cancer card, and reminded my family of the idea, and–voilà! Off we go. I’ve been hitting life pretty hard these days, and though I can’t complain, I’m looking forward to a bit of a break from it all. I am always happiest when I’m looking out at the ocean.
Speaking of cancer cards, it’s getting harder and harder to use mine. People start to forget after awhile. And that’s okay, I don’t blame them. After all, my hair is getting closer to shoulder-length. I even had someone recently compliment my eyebrows, which was nice to hear, considering the nicely groomed, dark arches you see are just the product of my handiwork with some eyebrow gel. I’ve pretty much given up on the idea that my real eyebrows, in all their former glory, will ever come back. A small price to pay for still being alive, sure, but kind of a bummer. My days of running out the door without worrying about makeup are long gone. I remember I never really liked my eyebrows before. They were kind of unruly and I didn’t know what to do with them. It’s funny thinking about that now.
Don’t it always seem to go, That you don’t know what you’ve got ‘Til it’s gone
I recently had to go over my medical history at an appointment with a new dentist. She asked about surgeries and medications, which obviously led to having to reveal I am part of the young and the breastless club. I wish everyone in the world could just get the memo that I had cancer, because I am so over the sad/shocked/concerned reaction people have when I tell them. The dentist did the typical “Wow, at your age?!” followed up by the requisite “Is it a hereditary cancer? No? Wow!”
When I see the pity look in people’s eyes, it makes me feel pity for myself, and then I start to feel really sad. Which is no good, because I don’t want to feel that way. I can remember one time having to explain my cancer history to some sort of professional – I can’t remember who or why – and he just acted normally, continued the conversation, without his mouth dropping to the floor, and without making me feel like some sort of circus freak. That was great. More of that would be nice. But unfortunately, most people are still quite misinformed about the fact that young adults can and do get cancer, so the typical reaction is one like this:
In other cancer-related business, I recently requested to switch my brand of tamoxifen, because my hot flashes were keeping me up all night, which made me feel like this:
I had switched before, accidentally, when there had been a shortage at all pharmacies of my usual brand. I noticed that my symptoms seemed to be better. When my original brand was back in stock, I went back on it for my next refill… and whaddya know, the hot flashes came back with a vengeance. Apparently certain brands can cause different symptoms.
Why did no one suggest I try another one in the past 1.5 years I’ve been suffering?
Your guess is as good as mine. Just another reminder that I gotta keep looking out for numero uno, because no one else is doing it for me. I called the pharmacy and requested to switch. So far, the flashes are better, although the general insomnia might be slightly worse. But if I’m going to be lying awake at night, I’d rather do it without feeling like my body is engulfed in flames. These are the options I have. Most cancer treatments just kind of suck. No one said it would be a party. Although wouldn’t that be great if it were?
Anyway, that’s about all I’ve got right now, as I’m starting to feel my eyes get heavy. Did you know that cancer ages you about one million years? They don’t advertise that when they tell you you have cancer, but you figure it out a bit later. It’s okay though, because it also means I have an excuse to take naps for the rest of my life, which if you ask me, is pretty sweet.
One of those days where I painted on my eyebrow gel to fill in the sparse areas between the stray hairs that managed to grow back after chemo.
One of those days where I sat in a breast cancer clinic waiting room, and received the typical “sad eyes” and confused stares from the others patients in the room.
One of those days where I filled out the standard self-assessment survey and rated my pain on a scale and realized I’ve never been able to fill in “zero – no pain at all” since this whole ordeal began and maybe never will.
One of those days where I wondered if I’ll ever not know my hospital patient ID number by heart, as if it’s my phone number.
One of those days where I changed into a gown five sizes too large for me.
One of those days where I met with my radiation oncologist and discussed bone pain and the possibility of that pain being cancer pain.
One of those days where my oncologist validated all my anxiety and confusion and empathized deeply with how difficult life can be for young people who’ve had cancer and how most people will never understand what that’s like.
One of those days where I had to think about balancing the effects of radiation from potentially needless scans with the mental effects of worrying that my cancer might have spread.
One of those days where I attempted to go shopping and try on cute dresses, only to have none of them fit my chest properly.
One of those days where I tried not to cry in a change-room for the umpteenth time.
One of those days where I saw pink ribbons in all the windows, on all the products, and pinned to salespeople’s shirts in department stores shouting out at me, begging to be noticed, forbidding me to ignore them.
One of those days where I unintentionally, while browsing greeting cards, picked up a birthday card that had a message inside that said something dumb about grandkids and reminded me that I don’t have a kid right now because I had cancer instead.
One of those days where I felt angry, and then angry at myself for feeling angry.
One of those days where I remembered I had breast cancer and it was hard, and it’s still hard.
Most of you know that I am not the “cancer is a blessing” type of gal. I do not, in any way, believe that cancer is a good thing to happen to anyone. It stinks. I do not recommend it.
However, like with most things, there are a few silver linings and some good things that have come out of this whole mess. Of course, I’d gladly accept NOT having cancer and give back every single silver lining. But since that’s not an option, and I have spent so much time lamenting over all the things that cancer has taken away from me, I may as well also make a list of some of the good things that have come my way as a result.
So here it is: The Perks of Cancer.
1. Hair compliments. Actually, general appearance compliments. I can’t begin to tell you how common a conversation topic my hair has become. When you go from bald and sick-looking to having hair and healthy-looking, everyone goes NUTS and wants to shower you with compliments ALL the time. It is pretty nice. What’s even better is when I get compliments from people who have no idea that I ever had cancer, and they just tell me that they love my “hairstyle” and I look amazing. Because then I know they’re not giving me cancer pity, but they’re genuinely paying me a compliment. They like me, they really like me!
2. Making new friends. I have had some amazing people come into my life, whom I likely never would have met if not for having cancer. Some of these people have cancer, and some don’t but they have been connected to me through my blog and through cancer-y things. Having new friends is always a good thing, and having new great friends is always an even better thing.
3. Making old friends. Cancer allowed me to truly learn who the real friends were in my life. Although this perk has a painful opposite side (i.e. learning which friends maybe weren’t so great as you thought), it’s still a really nice upside when you realize (hopefully) how many amazing people you are surrounded by. Cancer definitely strengthened some of my relationships and there are certain people who I can now say will be my friends for life, 100%.
4. Appreciation for everything. I think I already had quite a lot of appreciation for most things pre-cancer, but now it is just intensified in a major way. I see things in new ways and I value every minute in a way that I don’t think most people do. I still have times when something strikes me, and I feel tears in my eyes, because I am just so overwhelmed that I am still alive. Being alive is AWESOME. I feel lucky every day.
5. New opportunities. I think it’s a pretty common sequence of events: Go through something hard/awful/challenging and then realize that that obstacle has actually pushed you in a positive direction. For me, this perk has been a pretty huge one. Cancer magically turned me into a writer. Okay, no. I was always a writer. But it gave me something to write about and it allowed me to find my voice and share it with other people. I’ve also found that I have a passion for helping others and for advocating for other cancer patients. It’s forced me to re-evaluate my career path and make new choices. Which is totally terrifying and overwhelming. But also really exciting.
6. Valuing health and my body. I’d always been pretty healthy pre-cancer and I probably took it for granted. Well, that certainly isn’t the case anymore. After putting my body through hell, I am so appreciative now of the little things it can do. My legs can carry me and my arms can lift things. I can run up the stairs, or take a long walk through the city with my husband. I have energy when I get up in the morning and I don’t need to take multiple naps to get through a day. It feels amazing to get your strength back after having it completely obliterated. Simply, amazing.
7. Inspiring others. If you have cancer, and especially if you’re young, you are automatically an inspiration to others. Sorry, but you are. May as well milk it and enjoy it. I am happy to inspire you, especially if it causes you to make positive changes in your life. But just know that as inspiring as you might think I am, I am usually covered in ice cream drippings, with my drawn-on eyebrows sweating off my face, limping down the sidewalk because I have blisters all over my ankles. But if that inspires you, then I’m just fine with that.
Lately, I’ve been starting to get a bit more of the “old me” back. Little by little, cancer is transforming from the star performer to a backup singer, ever so slowly fading into the background. This is obviously a good thing, and I know it’s what my doctors want me to do: to live my life.
The thing is, as much as it starts to become less of a key player in my life, the cancer is still there (not literally, I hope). I feel its presence and its impact, and I think about it every day. How can I not? Last night as I was squirming in bed, my ribs aching from lying on my implant, and my body dripping sweat from my drug-induced hot flashes, I wasn’t thinking of my to-do list or my summer plans. I was thinking of the stupid cancer that caused these issues and prevents me from sleeping. I am accepting of my reality, but I am still angry that it’s my reality, and that I will always feel the remnants of what cancer left behind.
All of this is causing a bit of an identity crisis, as I try to find my way back to my former reality. Slowly but surely, I am having conversations with people that have nothing to do with cancer (most having to do with television shows… obviously). I’m feeling interested in topics that have nothing to do with cancer. Last year, when cancer was my life 24/7, it was really hard to focus on anything else, or to feel like anything else was really that important. I had a lot of trouble relating to people’s worries and daily concerns. Everything in my world felt so heavy and serious. But now, it is much less so.
There is the occasional doctor’s appointment, and the occasional pain that brings all the fears rushing back and makes me wonder if the cancer is still growing and traveling somewhere else. But it is no longer at the very front of my mind, at least not always. I am less interested in “cancer talk” and “cancer news” and increasingly more interested in all the things I loved before that I had put aside for a bit: exploring new restaurants, listening to new music, reading a good book, geeking out over new tv season trailers, going to the movies, analyzing the disaster that was The Bachelor finale, spending time with friends (usually while eating and/or watching TV… I’m starting to see a common theme here). All that good stuff. It feels great to find my way back to these things and to find joy in many of the same things I used to.
But then the “cancer side” pulls me back in, and I do feel this odd split in my personality, this feeling that I don’t exactly know how to define who I am anymore. Yes, I’ve heard about whatever pop culture thing people are tweeting about on most given days and yes, just like you, I’m annoyed with Rob Ford and annoyed with the shitty weather and complaining about all the same dumb crap most people are. But then I hear about another young cancer patient who died, or I see a link to a new study about breast cancer outcomes, or I get an email from someone newly diagnosed who wants my advice. And I’m pulled right back into that world, and it still feels very familiar, and somewhat natural. There is still that need to connect with people and reach out to people in the same boat, regardless if we have anything else in common — cancer is what connects us, and that’s all that’s needed, because it is such a huge, fundamental part of my history. And if I’m really being honest, it is still a dominant force in my present, and likely in my future.
As much as I adjust to my new reality and try to get things back to how they once were, there is no denying it — I am forever changed, and I view the world through a very different lens.
So, who am I?* I don’t really think it can be summed up in one clean definition. I am a 29 year-old woman. I’m a wife. I’m a daughter and sister and friend. I’m creative. I’m intelligent. I’m (sometimes) funny. I’m compassionate and loyal. I’m a writer. I’m a film/tv person. And one time, I also had cancer.
I guess that will have to do for now.
*After writing “who am I?” I totally can’t get this out of my head now. Sorry if the same thing happens to you.
Besides a minor mention here and there, I have never really written about fertility and cancer — specifically, my fertility and my cancer. I’ve had numerous reasons why I didn’t want to write about it: feeling that it was too personal and private, something only to be discussed by me and my husband, or worrying about friends who are moms or soon-to-be-moms feeling they can’t talk about anything baby-related in front of me. But I’ve come to realize that by not writing about it, it sometimes puts me in uncomfortable or awkward situations, which other people likely aren’t even aware of. And why should they be? I don’t talk about it, so their ignorance is really my own doing. I also know that a lot of people read my blog as a way to educate themselves about how it feels to have cancer, especially as a young person, and by not broaching the very important issue of cancer and fertility, I’m not doing a really great job as cancer teacher.
So, here we are. And I am ready to talk about it. Or at least, some of it.
When I was first diagnosed with breast cancer at the age of 28, one of the first things my doctor told me was that she wanted me to see a fertility specialist immediately, since certain cancer treatments can have a negative effect on one’s fertility. This is one of the very major issues facing young adult cancer patients, and unfortunately, it is often overlooked. I have heard countless stories of young men and women who were thrust into cancer treatment, without their fertility being discussed. This is a huge problem, and one I think all young people and all doctors should be aware of. So in that regard, I was very fortunate that both my family doctor and oncologist had discussions with me about how my treatment might impact the potential for me to have children.
Learning that my ability to have children might be compromised on the same day as learning that I had cancer was a major double whammy. It was a tough pill to swallow, when I was already considering the possibility that I might not even live long enough to start a family in the first place. Most people who get cancer are quite a bit older, and don’t have to deal with such things. But unfortunately for me, and for my husband, we had to deal with it, and fast.
The same week that I was meeting with breast surgeons, trying to decide if I should remove one breast or two, I was also meeting with a fertility specialist to discuss my options. To say I was a bit overwhelmed would be a wild understatement. I had tons of information coming at me from every angle, and very little time to make decisions that would greatly affect my future. It was kind of a shitty week, you might say.
The fertility specialist did various tests and exams, where my husband and I learned that, yep, we were indeed fertile. Yippee. Too bad I was about to shoot my body full of drugs that could potentially ruin all that.
There are specific chemotherapy drugs that are known to have a damaging effect on fertility. Unfortunately, I had to get one of them. This was not an option. You can’t get pregnant if you’re not alive (lesson of the day!), so staying alive was my first priority, above and beyond everything else. And sadly, in the world of cancer, the best proven method of doing this is often by poisoning yourself.
We were given the option of retrieving embryos, which we could then “store” for the future, if needed. At first, this seemed like a good solution. An insurance policy, in case the worst case scenario became a reality. (A very, very expensive insurance policy, mind you, as these procedures aren’t covered in Ontario for cancer patients.) With barely any time to think about it, it seemed like the smart thing to do. I got a bunch of prescriptions for shots I would need to give myself and a million consent forms that needed to be signed, and we were off to the races. At least, that was the initial plan.
As I began doing more research about the hormones I would have to take, despite some limited studies showing it was safe, I started to feel uncomfortable by the idea of messing with my hormones, especially when I have a hormone-sensitive type of cancer. It felt risky, especially when knowing that a) we might not even need the embryos and b) if we did need them, there’s not even any guarantee that the procedure would work. In many cases, it doesn’t.
I was also presented with the option of joining a clinical trial, where I could potentially receive a drug that could benefit me, targeting my specific type of cancer. If I chose to do the fertility preservation, there was a good chance the start of my chemo would have to be pushed, and I might not qualify for the trial.
To top it off, the thought of injecting myself with hormones and dealing with potential side effects from that and having to undergo the egg retrieval, at the same time as being in tremendous pain from my double mastectomy with immediate reconstruction and gearing up to start chemo… well, it became less and less appealing.
One night, I was filling out the form where we had to decide what to do with the embryos if we ended up not needing them. Would we donate them to another couple? Give them to research? Have them destroyed?
Suddenly, it all just felt like too much. It felt like I was doing what I thought I should do, rather than what my gut was really telling me to do.
After expressing my concerns to my husband, he admitted to having the same concerns too. We discussed it some more, and then came to our final decision that we were going to put the brakes on the preservation process, and have faith that things would work out for us. Dealing with the cancer felt like more than enough for us to have on our plate at that time. So with that, we put 100% of our focus into making me healthy. I joined the trial, began my treatment, and tried to push thoughts of babies and pregnancy far out of my mind.
None of this has been easy. I remember being so angry that I had to make such hideous choices. I shed a lot of tears, cursing cancer for destroying my dreams. I have wanted to have children since I was a child myself. Anyone who knows me knows this fact about me. We had hoped to have a mini S or mini J pretty much… right now. But cancer decided to show up and derailed the plans and the future we had envisioned for ourselves. At least for now.
So where does that leave me now? I am not quite sure. It is not really possible to tell what effects the chemo had on my fertility, since I’m taking a drug which messes with my hormones. And, to top it all off, I am not allowed to be pregnant while taking said drug… which I am supposed to be taking for a minimum of 5 years, and possibly 10. Or, I have the (not medically-approved) option of coming off of it early, which there are NO good studies to support, and possibly increase my risk of having the cancer come back and not surviving. So my big decisions are not over. Not even close.
It is hard seeing people around me getting pregnant and having their babies turn into toddlers. It is hard seeing photos posted at every hour of the day. I’m fairly certain anyone who has wrestled with any type of fertility issues can relate on that one. We live in a very baby-centric world, especially when you are my age. It ain’t easy. (Although I make myself feel better constantly by thinking of the vacations and nights out my husband and I can take whenever we please, and our ability to sleep in on the weekends as late as we wish. We often say “If we had a kid right now, we couldn’t be doing x,y, or z.” It makes me feel better… for a moment, at least.) If anything, this whole ordeal has made me much more sensitive and empathetic toward couples who are experiencing infertility problems.
I do have a lot of hope for our future, and our family. I know, regardless of fertility issues, there are options. I like to think that all of this sad stuff will eventually lead to somewhere happy. I need that hope, and I hang on to it.