I always took it for granted that I would, someday, have children.
I never grappled with the decision of whether or not motherhood was for me, or thought of what my life might be like without kids. I made mental notes of my favourite baby names, and imagined what they might look like. After meeting and marrying my husband, the desire to start a family grew stronger. Maybe she’ll have his eyes and my mouth, I thought. I hope he gets my husband’s athletic ability, and not mine. I dreamed and planned and let my mind wander to a future that I thought was secure.
I made an appointment with my doctor, thinking maybe we’d broach the subject of stopping my birth control pill. I felt nervous and giddy at the thought. How did I get here? Was I really ready for this? What if there was a problem?
And then, there was a problem.
A week before my doctor’s appointment, I found a lump in my breast.
I changed the purpose of the appointment to talk about boobs instead of babies. And after several tests and a couple weeks of waiting, I received the diagnosis. Breast cancer. I had just celebrated my 28th birthday and had been married for less than a year. And, ironically, I did end up coming off my pill, but not for the reason I had intended; rather, the breast cancer I had was fueled by estrogen (a main ingredient of the birth control pill), so I was told to immediately stop taking it. No more pill. But no baby either. To say things were not going according to plan would be a massive understatement.
In the same conversation where I learned I had an invasive, aggressive breast cancer, I also learned that the chemotherapy I’d need to undergo could cause fertility issues. Major double whammy.
At first anything other than the fact that I might die seemed inconsequential. But after taking some time to process everything and meeting with a fertility specialist, the reality set in that there was now a possibility I’d never have children. I was devastated.
I considered undergoing fertility preservation treatment and went through the initial steps, but ultimately pulled out at the eleventh hour due to timing factors, enrolling myself in a clinical trial, and not being comfortable at that point with injecting hormones into my body. We decided to accept the risks, and hope for the best.
Now I am two and a half years past my diagnosis, and my baby-making clock is ticking once again. Time to get a move on, right?
Not so fast.
Because my cancer was hormone-sensitive, I need to take a drug called Tamoxifen that is proven to reduce the risk of the cancer returning and possibly spreading to another part of my body. The newest recommendation is to stay on this drug for 10 years. Great news, right? A drug that could actually help keep me alive. I am lucky to have that option.
Unfortunately, hormonal therapy for cancer comes with a whack of side effects. The biggest one for me is that I’ve been told not to get pregnant while taking it, due to its potential to cause birth defects.
I am 30 years old now and have been taking Tamoxifen for almost two years. If I stay the course of 5-10 years, and take into account my chemo-aged ovaries… well, you can do the math.
So now I find myself again in a sticky situation, forced to make another difficult decision on top of the ones I’ve already had to face. (Fertility presevation? Double or single mastectomy? Radiation? Reconstruction? Cancer has a way of forcing you to be decisive.)
The way I usually make my decisions is to do read up on all the research and literature I can possibly find. But in this case, there are no studies assessing the risk of pausing hormonal therapy to get pregnant. Zilch! As Dr. Susan Love writes, “We are frequently asked what would happen if a woman stopped taking tamoxifen between two years and five years, and the truth is that we just don’t know because we have no studies that have looked at that question. …Because there is no data to support stopping early, this has to be a personal decision, and it is undoubtedly not an easy decision for many women to make.”
I constantly toss scenarios around in my head, playing out the various possibilities. What if I continue treatment, and by the time I’m done, I’ve missed my window to get pregnant? What if I stop taking my pill, get pregnant, and I end up dying and not being able to raise the kid I just had? What if I take a break, get pregnant, go back on Tamoxifen and we all live happily ever after? (Obviously this third scenario is the one I cross my fingers for.)
In my case, these are the cards I’ve been dealt, and I won’t be able to get the answers I need by the time I need them. But the really good news is that young women with breast cancer in the future will have the data they need to make an informed decision.
The POSITIVE ‘Baby Time’ trial will investigate if interrupting hormonal (endocrine) therapy to get pregnant increases the risk of breast cancer recurrence. This is the exact study that, had it been done ten years ago, I might not find myself in the situation I’m in right now.
I’m so excited and proud that Rethink Breast Cancer is committing to funding the Canadian arm of this international trial. They need to raise a lot of money to make this happen, so please give generously! Your contribution will make a huge difference to so many young women who one day may be walking the same path I’m on. And let me tell you, anything that can make that journey even a little bit easier, is worth doing.
And as for me, I’m not sure where my choices might lead me, or how this story will end. But I have hope. Hope that I’ll have the family I wanted, hope that I’ll live to see that family grow, and hope that pregnancy will be a possibility for all those young women who follow behind me in the years to come.
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.”
I received a really nice email last week, and hopefully this kind stranger doesn’t mind me posting her words here for you to read:
I’m sure you get many of these random stranger emails – oh a blog about BC! I had it too! now that makes us instant friends…LOL. I just wanted to tell you that your posts are so refreshing to read. In an ocean of stories, yours has been the one that has finally made me think “hey, I’m not a crazy weirdo, this person thinks EXACTLY what I was thinking” – pretty hard to find let me tell you. so, I just wanted to thank you for bringing a smile to another woman’s day struggling with all the BS around BC. And great hair. Oh don’t get me started on the hair. R.
This email reminded me that people still read my blog and that it keeps existing for others, whether I update it or not. Somehow, people still find it and still connect, even as I continue on, living my life. The internet is a pretty groovy thing, n’est-ce pas?
For those who’ve been missing me, don’t forget to check out my monthly column over at ELLE. I’ve been giving all of the thoughts inside my brain to them (and they actually pay me real money to do so!), which is why I haven’t been as active around these parts.
But don’t despair, I’ll never disappear from here completely. This is still my favourite space to be. No deadlines, no edits, no caring about trying to impress anybody. My tiny little corner of the interwebs where I can do as I please. It’s swell.
You know what’s not so swell?
The dramatic return of my hot flashes.
Bleh. I thought I had cured them by switching up my medication brand, but that effect seemed to only last temporarily. I’m back to being a sweaty, burning mess, with the concept of sleeping through the night being nothing more than a fantasy. And if you keep up with your breast cancer news (which I’m sure many of you do not, you lucky ducks), you will know that Tamoxifen is now being recommended for ten years, instead of five. TEN YEARS of sleepless nights and melting madness.
But I am grateful. It could be worse. So much worse. Who needs eyebrows, breasts, sleep, comfort? I’m alive!
I’ve been fighting off a nasty sinus infection the past several days, that finally seems on its way out. I don’t know if this is normal for other people who’ve gone through cancer treatment, but I find that now when I’m sick, I have traumatic flashbacks to the chemo glory days. Lying in bed feeling ill brings back terrible memories of lying in bed feeling (more) ill. When my stomach gets sick now (which still happens from time to time, THANKS IBS), it reminds me of when I felt that way for days/weeks on end, so weak I had to cling to the sink to pull myself up from the toilet, and then lean against the wall as I walked back to my bedroom so I wouldn’t fall down on the way. That scenario felt like a never-ending cycle, for months.
I wish I could just get “normal” sick without having such hideous memories and anxiety attached to it. Maybe eventually, but for now, it still feels like a horrible nightmare I can’t forget. That feeling when you see a scary movie that creeps you out, and it pops into your head right before you go to sleep at night, plaguing your thoughts. It’s like that. Times a million. I play the scenes back in my head. My very own horror movie, and I’m the star.
I always did want to be a star.
But the difference between normal sick and cancer sick is it ends pretty quickly and you bounce right back from it and usually forget about it a few days later. You’re not likely to be tortured with thoughts about that time you had the sniffles and took some cold and sinus pills.
So that’s another thing to be grateful for. Being sick and not having it be cancer. That’s kind of cool. Although I’d rather just not be sick with anything, big or small, ever again, but I guess I’ll roll with the punches. I’ll blow my nose, feel aches in my body, cry because it reminds me of when my entire body ached from the inside out, cry that I might one day feel that pain again, wake up the next morning, and notice that I can breathe again; that the pain is gone and I’m standing on my own, with the past still visible in my rearview mirror, but the present staring at me, pressed right up against the windshield.
And I must say, the present is lookin’ pretty good. More joy than pain. More health than misfortune. More beauty than sorrow. More laughter than tears.
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.
It seems many people are reflecting on 2014 and, generally, letting everyone know how fantastic their year was. These kinds of posts can irk me somewhat; as much as I’m happy for all the great stuff happening to many friends and family, I’m also aware that a lot of people might not have had such a great year and it might be difficult to read about so many personal experiences oozing with happiness and celebration. I, myself, was one of those unhappy souls not so long ago, with 2012 and 2013 both being fairly rough on me. The last thing I wanted to hear was how awesome everyone’s year had been when mine was anything but.
But now as I reflect, I must tell you – 2014 was a really good year for me. And I want to share that fact with all of you who might have had a shitty year and are going through a rough time, be it with cancer or anything else. Even when life is at its darkest, the light eventually finds its way back in. There was a lot of light in my 2014. So here is my year in review, and may it give you hope that next year can always be better than the last.
Ah, who can forget this glorious moment: finishing cancer treatment. I can’t even believe this was less than a year ago. It feels like a lifetime away now, like a memory that isn’t even mine. Finishing treatment was a wonderful way to kick off a new year and a fresh start.
I also went to Jamaica, again, because apparently one cancer vacation was not enough.
My college roommate got married and we took a trip to Los Angeles.
I walked the runway in the Holt Renfrew/Wellspring fashion show and did not trip and fall. So much fun.
Got my port removed without any drugs. HARDCORE CANCER GIRL.
Much to my pleasure, the hair continued to grow.
My husband became obsessed with running, which makes him very happy. Although this is really part of his year and not mine, my happiness is directly related to his so happy husband = happy me. (If you need to excuse yourself to go barf after that sentence, I understand.)
Went to Washington D.C. for a family trip and cousin’s bar mitzvah. My first bar mitzvah in many years. If anyone wants to invite me to their bar mitzvah, I’d totally come. They’re way better than weddings.
My beautiful mama turned 60 years old! 60!
The beginning of the summer of too much ice cream began.
I faced my fear of heights and leaned off the edge of the CN Tower.
Went to summer camp with my sister.
Had my first column published in a national magazine.
Went to NYC for an early birthday celebration where I pretty much ate for 4 days straight.
My 30th birthday, which included a lovely surprise party picnic in the park with my friends and family.
Walked 60KM to help fund breast cancer research. Wasn’t waiting for a cancer diagnosis, or preparing a speech about my cancer diagnosis this time around – just a plain ol’ walker like everyone else.
Got dressed up for a big charity event for Rethink Breast Cancer, and then got a job working there a couple weeks later. Not a bad deal!
We celebrated our third wedding anniversary by going to Mexico and relaxing for a week, which was pretty much the opposite of our first wedding anniversary post-mastectomy. Mexico FTW.
My husband’s brother and his wife had a baby and we met her for the first time and fell in love.
Holiday time with lots of friends and family and food. Doesn’t get much better.
As those super weird Facebook 2014 recaps would say: It’s been a great year. Thanks for being a part of it.
If you’ve been following my recent blog posts, you may have noticed that I’ve been having some worrisome aches and pains for quite awhile. My oncologist finally ordered me a bone scan last Friday, and if you follow my Twitter or Instagram you will already be aware of the results…
I DON’T GOTS NO CANCER IN MY BONES! Yiiiiiipppeeeeeeeee (sorry, I am not feeling very eloquent today, I’m tired).
My mind once again went to some very dark places while waiting to learn my fate. Unless you’ve ever had cancer, and had to undergo multiple tests to find out if your cancer has become terminal, you will never understand what it feels like to be in that unfathomable situation. And I hope you never have to understand. I’ve had major sob-fests merely over the realization that I will carry that anxiety with me, in some form, for the rest of my life. This cancer crap sure ain’t easy.
So now I breathe a sigh of relief, let the heavy weight release itself from my chest, and get on with life until the next thing crops up and I have to wonder: Is it cancer?
And since I believe all good cancer-related news must be celebrated in some form, I did just that: by ordering sushi with my sister, watching terrible reality TV, and taking a series of ugly photobooth photos that made me laugh so hard my ribs hurt.
But at least I know the rib pain was laughing-related and not cancer-related. I do know that. At least for today.
Hello loyal readers! (Or, people who Google searched “cupcake recipe” and accidentally ended up here.)
I haven’t been updating the blog too frequently, but this is not because I have nothing going on, but rather the opposite. I often sit down to write and then quickly get side-tracked doing something else and lose my focus. I could blame it on lingering chemo brain, which I do believe I occasionally suffer from, but it mostly comes down to just being busy. Which is a good thing. Here are the things that have been occupying my time and my mindspace (which apparently isn’t a real word, but it should be).
TELEVISION! I realize watching TV might not be seen as the most fruitful of activities, but there is so much good stuff on right now that I am giddy about. I can talk about TV for hours, so if anyone ever wants to do that with me, feel free. My newest obsession is How To Get Away With Murder which is the most entertaining thing I’ve seen on television in awhile. I also recently watched both seasons of Rectify, which is on Netflix, and deserves way more attention than it’s been getting for its unbelievable performances and gorgeous cinematography. And of course there are all my old standbys: Mindy Project, Parenthood, Scandal, etc. And there is still so much I want to check out (The Affair, The Leftovers, Transparent) but haven’t had time to yet. I LOVE TV SO MUCH AND I CAN’T STOP.
ELLE! If you’ve been following along, you know that I’ve started writing my monthly column for Elle Canada magazine called #LIFEREBOOT about discovering life after cancer. So I’ve been busy exploring and writing and doing many fun things, like going on mindfulness retreats and leaning off very tall towers. Every month that I see the new issue in my mailbox, I still get giddy when I turn to my page and see my name and photos and words. It’s been a fun challenge, and I am learning a lot. For February’s issue, I’ll be writing about something that’s been keeping me busy for the past couple months and that I’ve enjoyed immensely but I don’t want to spoil it, so you’ll have to wait and buy the magazine.
ANXIETY! This is nothing new but is simply now a common theme in my life that likely will never completely go away, and that I must learn to live with. I don’t mention this stuff for pity, or for advice, but merely to help non-cancer people understand that us cancer-people live a very complicated existence, often filled with various bouts of fear and anxiety. Sometimes I think I’m in the clear and over “that phase” and then all of a sudden, something new pops up — a new pain, a new ache, a new symptom — and I question my health and my future. I worry about not being alive in 5 years, I worry about my body betraying me in an awful and grotesque way, I think about what my funeral might be like, and who might show up. Again, this is NOT a cry for help. For 90% of my days, I’m living and loving my life and having a ball. But the other 10% is still kind of crappy and that’s just the hand I’ve been dealt, as have many others. And we’ll get through it, because that’s all we can do.
MEXICO! A perfect cure for all life’s problems… vacation! We just got back from celebrating our third wedding anniversary in Mexico on the most beautiful beach, where we ate fabulous food, swam in the ocean and read books by the pool. It was divine. I’ve said this before, but since having cancer I am incredibly grateful for any chance I get to just relax and be spoiled. Life is short, and I want to spend as much of it as I can sitting by the ocean and feeling the sun on my face. There is nothing better, in my opinion. Here are some photos if you like that kind of thing.
NEW JOB! Some of you may have heard of an awesome charity called Rethink Breast Cancer and if you haven’t, well now you’re gonna. They support a cause very near and dear to my heart: helping young women with breast cancer and those affected by breast cancer. They provide cutting edge resources, such as their new digital content, including a video by yours truly.
For this video, I came up with my own idea/script/tips. Nothing was spoon-fed to me. This is because the people at Rethink are cool and smart and believe in allowing young women with breast cancer to share their unique voices. My involvement with Rethink will now be turning into my day job, as I begin a new contract position with them entailing the coordination of various online initiatives. My advocacy and concern for issues affecting young adults with cancer has become a huge part of my life, and I’m excited to work somewhere that will foster that passion.
So, there you have it. Lots going on. Lots of changes. Lots of new beginnings. Lots of good stuff. Lots of hoping and crossing fingers for more good stuff. Let the good times roll.
Last year on (Canadian) Thanksgiving, I wrote a post about the things I was feeling thankful for. Today, on Thanksgiving, I met up with my awesome cousin Dan who presented me with a wonderful surprise: my very own song. Dan took the words from my blog post and wrote music for them and sang and recorded the whole thing. Pretty cool, right? What a thoughtful, special gift to receive. Thank you, Dan!
A couple days ago, my dad and I met with a geneticist to discuss our genes and cancer and fun things like that. I know very little about genetics and DNA (and biology, for that matter), so I find it really fascinating to learn about how complex human systems are, and how much new information is being discovered every day.
Experts say that most incidents of breast cancer are not hereditary, and are due to various risk factors (such as radiation exposure, obesity, alcohol intake, etc.). But a portion of breast cancer cases are due to a genetic predisposition. You may have heard of the well-known BRCA1 and BRCA2 genes (as made popular by Ms. Angelina Jolie), which greatly increase the risk of having breast and ovarian cancers. But from meeting with the geneticist, I have learned that there are in fact a whack of other genes that may predispose you to a whole array of cancers.
Hereditary cancers are often suspected if a person was diagnosed at a young age (check), diagnosed with a rare form of cancer for their population (28 year old with breast cancer – check; adult male with breast cancer – check), and if related cancers are present in multiple generations (check). So as you see, there is good reason to wonder if my and/or my father’s cancer was the result of a faulty gene. It could just be completely random, and a huge coincidence, but deep down, I really don’t believe that. I have met so many people who have a very high incidence of cancer within their families, despite being healthy and doing everything “right” to avoid getting cancer. It’s obviously a lot more complicated than we realize.
The geneticist asked us if we would like to undergo testing of 21 genes that have been identified to increase cancer risk. Some of them increase your risk of certain cancers by a great deal, and others more moderately. The types of cancers associated with these genes include breast, ovarian, colon, and a bunch more. When providing me with an example, the geneticist mentioned the gene that increases risk of stomach cancer, and if positive, the possibility of removing the stomach. Um, HOLD IT RIGHT THERE, DOC. There’s obviously no way in hell I would give up my stomach, since doing that would greatly put a damper on my favourite activity: EATING. So let’s hope that bleak illustration does not ever become a reality. I’ll take a pass on that one, thank you.
Genetic testing can be very tricky psychologically, and it’s not for everyone. Some people don’t want to know what terrible things might be lurking around the corner. It can be very unnerving to have that information. But on the flip-side, it can also be reassuring — to know that you didn’t do anything to “cause” your cancer, and to know that there are steps you can take to lower your chances of cancer in the future.
I believe that knowledge is power, and as you might have figured out by now, I am an information-seeker and am constantly looking for answers to all of life’s questions. So for me, it was a no-brainer to partake in the genetic testing, and my dad felt the same as well. We signed some forms and gave some blood and put them in a fancy box, and now we wait (likely for several months) to hear the results. Since this testing currently is not available in Canada, the government needs to be petitioned to cover the cost of the test at a lab in the States. The doctors are handing all of that, but if it does not get approved, I’ll obviously step in and make a scene and make sure it goes through. You don’t want to mess with a feisty cancer blogger, I’ll tell ya that much.
Many of these genes were only recently discovered and not that many people have undergone testing. So we’re kind of like pioneers. Or something.
Obviously it is terrifying to think of any of these genes coming back positive, and what that might mean for me and for my family. But I also can’t help but be curious about what is going on in my own body. I will always be seeking out more answers, wanting to know the good and the bad, and everything in between.
But for right now, all I can do is wait, and hope. And in the meantime, I’m going to enjoy having my health, my life… and my stomach.