Wowzas, it’s been a long time since you’ve heard from me. My sincerest apologies. I just took a look at my stats and it appears people are still showing up here every day. Have you been waiting for me? Here I am!
Another reason I know people are still stopping by is that I get frequent emails (which I may or may not refer to as fan mail), mostly from young women who have just been diagnosed with breast cancer and want to know all the details of how I ended up having a baby. How cool that I get to be a beacon of hope for someone who is having trouble seeing any sliver of a silver lining.
And on that note, I have a very important update which I have been meaning to share with some of the people who I care about the most – you! My faithful readers, most of whom I do not even know.
If you think it was pretty exciting when I got pregnant the first time, well, break out the champagne and party hats because another little miracle baby is on his way, coming this June.
I’ve had people ask me if this was planned/if we expected it. Which means a lot of people forget that I had cancer and am not allowed to get pregnant without a lot of careful planning. But I don’t mind. I don’t need you to remember about my cancer all the time. You have many other things to remember. Sometimes, I forget too. Which is really terrific. But for the most part, I’m stuck with reminders everywhere, and that’s just the way the cookie crumbles. (P.S. Remember when I had cancer and everyone was sending me treats all the time, like cookies? Oh boy, that was nice. People don’t send you treats when you’re healthy. But overall it’s a very good tradeoff, and I do have other means of procuring cookies if need be.)
I’m really excited for this little boy who is kicking me from the inside right now. (My other boy has hit a fun phase of kicking me too, so I am doubly blessed.) What will he look like? Act like? Will he be like his big bro, or a completely different specimen? Will he sleep for more than 20 minutes at a time? A mom can dream.
I’m also nervous. And scared. I wrote a bit about that here. Things will likely be tough again for awhile. But hopefully a bit more manageable than the last go round.
I also get scared because having kids has really raised the stakes in terms of the importance of my being alive. I was always scared about possibly dying too early, same as anyone who’s had a cancer diagnosis before their life has really kicked into gear. But I could somewhat cope with it. Now I cannot let my brain go to that place. With two little kiddies who need me… it’s just an entirely unbearable thought. Sometimes my brain can’t help it, and those intrusive thoughts come in. I imagine my kids not remembering me, or being raised by someone else. Me not seeing them grow up. I can’t imagine anything worse.
Ugh cancer. You’re such a bummer.
But those thoughts are few and far between. I’m too busy making a human and chasing after a little human who tires me out way too much to have any deep thoughts beyond what I’m going to eat next and when will the next episode of The Bachelor air. My family keeps me grounded. And distracted. And for that, I am grateful.
Sometimes I think of my life like that Gwyneth Paltrow movie Sliding Doors, where there are two versions. In one version, things went the opposite way as they have gone, and it’s a pretty sad ending. I couldn’t have babies. The cancer came back. Game over. But in the other version, I turned out okay and continued on the path I was supposed to be on. A second chance, that I really did nothing to deserve.
By some stroke of luck, the second version ended up being the true story in my movie. I don’t know why and I don’t know what it all means, or if it means anything at all. And it’s probably not the real, final ending. I assume this is some kind of ongoing series, like a trilogy, or maybe an anthology. Who knows what the future installments will look like. I could choose to obsess over them, but we all know that would be a very poor use of my time. And if I’ve learned anything, it’s that you don’t want to waste whatever time you do have worrying about the things you have zero control over. Easier said than done, of course. But that’s where the reality TV and cookies come in. Thank goodness for life’s small pleasures.
And one day we will die And our ashes will fly from the aeroplane over the sea But for now we are young Let us lay in the sun And count every beautiful thing we can see
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.
When thinking of what to title this blog post, a post I’ve been imagining writing for a long time, the voice of Jeff Goldblum immediately popped in my head. In Jurassic Park, one of my childhood faves, his character utters the now famous line, “Life, uh, finds a way.” Although referring to dinosaurs and their ability to breed in that particular case, the line came to mind when thinking about my own little (far less destructive) miracle that has found its way into existence, despite the odds.
That’s right folks, the rumours are indeed true: I am pregnant. With a baby (not a dinosaur, in case there’s any confusion there). And not just a baby, but a baby boy. A real, live baby boy. Ain’t that somethin’?
For a quick recap: you may recall that I was taking cancer-fighting drugs that prevented me from having a child. You may also recall that I had a type of chemotherapy that put me at risk for damaging my ovarian reserve. You may not recall any of this, because it’s in your rearview mirror and you are likely thinking about other things, as you should be. But I have not thought about other things. Ok, that’s not entirely true. Occasionally I think about pizza, or last night’s Bachelor episode. But a lot of my brain power has gone to thinking about babies. Wondering if that possibility was lost for me. Wondering if I should take the risk. Researching, reading, discussing, deciding, trying to sort through it all the best that I could.
My decision to attempt pregnancy was not made lightly. It was agonizing. At times, it still is. My anxiety has been sky-high, as I wrestle with nerves around the pregnancy itself after encountering a bumpy start which made me hesitant to share my news. My excitement has been tempered with familiar fears creeping their way back in, fears about my own health and how my survival now feels even more critical. I feel like the last time I got really excited about life, I was hit with a bomb, and I worry (irrationally, but still) that I might somehow jinx this good fortune if I put it out into the world.
But after waiting patiently on the sidelines for the last several years, watching baby announcements flood my social media feeds, celebrating the births of my friends’ and family’s children, I want to enjoy this moment in time, this moment I’ve waited so long for. I want to share it. I want you to know that miracles can happen. I want you to know that good things can happen. But mostly I want myself to know that good things can happen. It is possible. It has to be. It’s happening right now, as I feel my son swimming around inside of me.
Hey party people! I’m still alive, if you were wondering. (Although if you ever are actually wondering, it only takes a few clicks to verify that I’m still kicking.) I keep meaning to update ye olde blog but have not succeeded as of late. And it’s not for a lack of having anything to say. In fact, I have had lots of things to say, and my mind has been churning constantly with thoughts and feelings and all that fun stuff that I really should put down in words. But it seems it gets harder to share my innermost thoughts the further I get away from the cancer stuff. When I was living it every day, it was easy to write about, and almost expected. Of course I was thinking about cancer while my hair was falling out and my body was throbbing. But now as the years have thankfully started to pass (#blessed) and I shed my Cancer Girl persona, it seems almost jarring to bring it back into the conversation. Cancer? Really? You still have stuff to say about that crap?
I have less to say, definitely, but I’m not done just yet. Although less frequent, I still am prone to panicking over every new pain/bump/anomaly that presents itself and still have this unsettled feeling of a bomb about to go off. Every time I learn of another young woman who has become terminal 3/5/10 years out of original diagnosis, the world stops and I am crushed by the weight of my mortality. That could be me. I could be dead in a few years. Don’t get comfortable because this could all end soon.
That’s some heavy shit right there.
I was talking to someone recently about the potential for catastrophic disaster in my future and trying to accept that reality, but also embracing the more probable likelihood that everything will turn out okay. I told her that no matter how much I have learned to be comfortable with my situation and try my best not to let it affect me, I’m still pissed off that I have to deal with any of this in the first place. I’m annoyed more than anything. I have these competing voices constantly battling for my attention:
You’re so lucky to still be alive! Seize every moment! Stop watching The Bachelor and go save the world!
Be mindful. Be present. You’re here now and you’re okay and that’s all that matters.
Stop stressing! Get more sleep! Exercise more! Stop eating pizza! You might die!
My back hurts. Was that pain there before? No, that’s a new pain. The internet says my cancer has probably spread and I’m toast. Shit. I’m so sad I won’t be able to enjoy the bagels and lox at my funeral.
And then I feel guilt. Guilt because everything is actually, really great right now and none of my fears have become a reality. Guilt because I have friends who are not so lucky and would trade places with me in a second. Guilt for feeling like I’m not doing enough with whatever extra years I have been given.
See? Annoying, right? It’s just plain and simple a pain in the butt that I have to think about any of these things and can’t walk around in blissful ignorance like a person should be doing at my age.
And I guess this is why I’ve been staying away for awhile. Because I don’t want anyone to worry about me, or think that I haven’t moved on. I have moved on and continue every day to do that in the best way I know how. But moving on doesn’t mean it goes away, or even that it gets any easier. It’s always hard. We all carry the scars of the past and we’re all headed toward an uncertain future. But I’m choosing to live in that space in between. Or trying my best, at least. And right now that space is filled with family, friends, tv marathons, delicious food and laughter. And singing. So much wonderful, terrible, embarrassing singing.
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 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.
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.