Today, I am alive

Posted on by Steph

A couple days ago, I attended the funeral of my great-aunt, the eldest member of my family tree. She was an amazing woman who lived a full and long life. As the rabbi and members of her family spoke about her, I began to think of the legacy she left behind and I realized that a good way to assess if you’re living the life you want to is to imagine what someone would say about you in your eulogy. What will they remember about you? What are the highlights they will touch upon? Is your career noteworthy enough to mention as one of your great accomplishments? Your charitable acts? Your kindness? The family you have created? What will you leave behind?

I’ve thought a lot about my own funeral. I imagine this might be somewhat normal, when you’re faced with a life-threatening disease. But maybe not. I think I’ve always thought a bit more about death and such things than the average person. Six Feet Under is my favourite TV show, after all, and I don’t think that is exactly a coincidence. I’ve wondered what would be said about me at my funeral. The stories everyone would tell. I imagine who would show up – perhaps people from my past whom I haven’t spoken to in years. I like to imagine that it could be a happy celebration of life, but I know it would not be so. When someone young dies, it’s seen as a tragic event. We think of the person they could have become and the many things they wanted to accomplish.

As much as I try to live in the present and not think about the many what ifs, I sometimes find myself consumed by the knowledge that I might not survive this brutal disease. The next few years for me are critical. And there are many people who have a recurrence many years down the road… 6 years, 8 years, 10 years. You get comfortable, and then BAM, you are told it is back, this time somewhere else in your body, and the situation is bleak. I hate that this is a possibility. I hate that because of my age and the genetic make-up of my tumour, my risk is higher. I am aware that the odds are in my favour, with all the treatment I have done. But the chances of an unhappy ending are still much greater than I am comfortable with.

One of the hardest parts of thinking about all this heavy stuff is imagining the people I would leave behind. I can sometimes come to grips with the idea of me, myself, not existing anymore. But when I think of the pain this would leave, with my husband and with my family… well, let’s just say I try my best not to let my mind go there. I guess I should feel grateful that I’m loved and that there are many people who would like me to be alive. Most would say that’s a good thing. But the idea that I could destroy the happiness of so many people is a lot to bear.

When my mind spirals down these dark places, I try to snap myself out of it: I say to myself, Don’t worry about tomorrow. I’m still here. Everything is okay today. Today, I’m alive. And then I move on and go on with my day and try to live a normal existence, the best I can.

Tomorrow is my 19th treatment. 54 weeks of having drugs pumped through my veins. That’s a long time. But I’m hopeful that the drugs are doing their job and that my story will have a happy ending. Today, that’s what I feel like believing.

Today, I am alive.

A recent pic with my siblings where we all, unintentionally, wore matching tops.
A recent pic with my siblings where we all, unintentionally, wore matching tops.

A time for miracles

Posted on by Steph

Last night, I was invited to check out the super high-tech, one-of-a-kind guided therapeutics operating room (GTx OR) at the Toronto General Hospital. The operating room is equipped with really fancy, expensive imaging equipment which will be used during cancer surgeries, allowing surgeons to be much more precise when looking at and removing tumours. Pretty cool, right? It actually made me a bit jealous, like my surgeries weren’t sci-fi enough. However, this snazzy operating room is currently only being used for research purposes, i.e. very unique cases. And I’d prefer not to be a very unique case, so I don’t hope to be in there any time soon. Except to play with all the crazy machines, which from my understanding, is not allowed. Too bad.

The presentation about the room was a bit of a challenge for me, as the surgeon who was presenting spoke of aggressive tumours and the fast growing ones being more likely to “come back with a vengeance” and “those are the ones they worry about.” Even though I’m very aware of my cancer and what it could mean, I still don’t like hearing cancer spoken about in these terms. Other people are able to discuss it and ask questions, purely for interest’s sake, remaining safely detached. But I don’t have that luxury. Every discussion of cancer and prognosis and dying feels personal to me. I can’t escape the feeling of, that could be me he’s talking about. Someone again said something about me being brave last night, to which I replied, I am not brave, this is just my life. I have no choice but to wake up every day, and live this life. C’est la vie.

Next week, I’m getting yet another MRI. This time around, we’re going hunting for tumours in the brain. You see, I have been having headaches for awhile now. My oncologist was not overly concerned, but when I mentioned them to my family doctor and how they have been persistent, she wanted to do the MRI because of “my history.” In other words, because I have cancer. And once you have cancer, everything else could be cancer. That’s just the way it goes. So I’ll do the test, and I’ll try to meditate and breathe deeply and not think about dying while I await the results. Same old story, different organ.

I also have a UTI (urinary tract infection for the layperson). I felt the symptoms come on very suddenly last week. Even though it is incredibly minor and tolerable, I still got a little weepy and angry over it. I mean, can I not get one week off without my body malfunctioning in some way? Without having to order another test, or fill another prescription? I am so ready for a break from thinking about my health, my body, doctors, hospitals, medicine. I am trying so hard to return to normal life (whatever that is) but it seems something always pops up, holding me back, keeping me firmly planted in this state of unrest.

Tonight is the last night of Chanukah. One of my favourite holidays. Presents. Fried food. Family. Chocolate. All of the key ingredients. Oh and of course, most importantly, Chanukah is about miracles. A big miracle. And oh boy, do I love a good miracle. More miracles, less cancer.

Someone should put that on a bumper sticker.

Clinging tightly to my wonderful Chanukah loot. Happy holidays!
Clinging tightly to my wonderful Chanukah loot. Happy holidays!

My fear of mice… and blogs

Posted on by Steph

A mouse just ran across my kitchen floor while I was putting groceries away. I screamed “OHMYGAWWWWD NOOOOO!!!!” and ran down the hall shrieking and hyperventilating. There is almost nothing that gives me the heebie-jeebies more than mice. In fact, I’ve even had recurring dreams where I am being attacked by vicious mice. True story.

As I hid in my living room, with the door closed, I tried my usual mantra of calming myself down: You’ve had cancer. This isn’t so bad. It’s not cancer. It’s just a mouse. Nothing can scare you anymore.

As the kids these days say – EPIC FAIL.

As much as I try to employ this type of logic all the time now, it rarely ever works. As I have said before, I am still fundamentally the same person. Sure, I had cancer. But does this now mean I am not completely, irrationally petrified of a tiny little mouse? Have I been cured of all my pre-cancer phobias? Hellz no.

I just got a notification from WordPress congratulating me on blogging for one year. Happy anniversary, blog! What a pal you’ve been.

After I was diagnosed, I had thought of starting a blog where I could document what I was going through. But I put it off for a couple months. Not because I was afraid of exposing myself or revealing I had cancer. Not because I had nothing to write about. But because I was worried writing a blog would kill me.

I had been searching online for blogs written by young people with cancer, to find something I could relate to. But the more I searched and the more I read, the more it started to feel like everyone who wrote a blog about having cancer ended up dying. I can’t tell you how many blogs I found, particularly of young women with breast cancer, whose most recent entry was either about their cancer metasticizing, or an entry written by a loved one informing the readers that the writer of the blog had passed away. It seemed like for every one blog I could find where the person was alive and well, there were ten more where the opposite was true.

So I convinced myself that if I were to start a blog, I would be writing my own death sentence. That my blog would join the many other young adult cancer blogs, with a sudden, abrupt ending, letting down all those who stumbled upon it, looking for inspiration and hope, as I had with so many others. I felt like writing a blog, and having people read it, would somehow curse me, and set my fate in stone.

I’m not sure what changed, but eventually I realized this was a crazy way of thinking, and blogs do not have the power to kill you. At least I really, really hope they don’t.

Writing this blog has truly been a gift to me, connecting me with so many awesome and lovely people all over the world. It has given me a healthy dose of confidence, allowing me to feel both brave and vulnerable, and uninhibited in my self-expression. It has made me feel less alone and isolated during a very lonely time, being the dependable friend I so badly needed. It has forced me to confront some very deep and dark feelings. It has also turned me into some sort of writing machine, where I feel as though I can’t stop, and I won’t stop (to quote the very inspirational Miley Cyrus).

So, happy birthday dear blog, and thanks for all you have done. I will continue to update you and visit you as often as I can, as long as I have something to say. And you can return the favour by not killing me. And if it turns out you do possess some sort of mystical power to decide who lives and who dies, please choose the mouse. Thank you.

Sorry buddy, it's either me or you
Sorry buddy… it’s either me or you.

 

Today

Posted on by Steph

List time.

Things I am pissed about today:

The wind
That I think about dying way too much
That I might die young
The pain in my hip
The pain around my implants
The lesion on my thyroid
The pelvic pain that landed me in emerg two days ago (I am fine)
The new cysts that were found all over my ovaries
Never having a CT/MRI/Ultrasound without something new/weird showing up
The recent death of a girl with breast cancer who I used to see every chemo session. She was nice. And pretty. And a few years older than me
Cancer, obviously
Post-traumatic stress
Not knowing what to do with my life
That I might never have a baby
That everyone around me is having babies
That my life’s plans were derailed
That any regular pain or ache might be bone/brain/lung/liver mets
That despite all the hell I put myself through, the drugs might not have done anything
My awkward, impossible to manage hair length
War
Mean people
Poor etiquette

Things I am happy about today:

Cereal
My family
My husband
My friends
The smell of fresh laundry
Being able to walk
The blue sky
Upcoming holidays
Canadian healthcare
Indoor heating
My blanket
The roof over my head
Writing
The Downton Abbey finale episode that awaits me
Vacation plans
Chocolate, always
That my hair grew back
That the drugs might have worked
That it might not always be cancer
This kid:

The happy cancer dance

Posted on by Steph

Unless you are one of those people who doesn’t know how the internet works, you’ve likely seen this viral video circulating around social networking sites, where a woman who is about to undergo a mastectomy dances with her medical team prior to having her surgery.

I have no issues with this woman and her dance party. I liked watching the video and it made me smile. I love a good dance party and I totally danced at odd times throughout my cancer treatment. When the urge strikes, I say go for it. Her display of joy does not bother me in the least.

What bothers me, however, is people’s reactions to this video. The video went viral because people LOVE seeing patients who have fun with their cancer. Patients who subvert expectations of being a cancer patient and who defy convention. These types of stories are the ones that spread like wildfire because we find them to be inspirational and uplifting. Thousands of people shared and commented on the video: She is so awesome! Wow, she is brave! What amazing courage this woman has! I wish I could be like her!

Okay, fair enough.

But I’ll tell you a secret: EVERYONE who gets their boobs lopped off possesses courage. We just all choose to do it in different ways. Sure, no one wants to see the video of the young mom being wheeled in her hospital bed, into the operating room, with tears running down her face, hopped-up on anxiety meds. Fine. You don’t have to see it. But all these women are no less courageous and no less awesome and no less worthy of being celebrated.

Our society loves showing the lighter side of cancer, and the people who laugh in its face. We need to perpetuate this “happy cancer” myth so that we feel we have some sort of control. If I get cancer, I will dance too, and I will be okay. Cancer’s not that bad.

But the truth is, most people aren’t dancing. Most people are scared as hell, and isolated and anxious, which is how I feel most days. I can tell you, as someone who loves to dance and loves giving the big EFF YOU to cancer, I most definitely was not dancing the day of my mastectomy. I cried. And I cried for many days after.

I still cry.

I am no less brave.

And neither are you.

Adventures in book writing

Posted on by Steph

I am writing from my favourite library in the city, staring out the large window at the grey and rainy day outside. I have been leaving the comfort of my home every day, exploring different spaces to write, and it seems the most obvious of them all, the library, really does beat any other option. No pressure to buy a beverage or overpriced pastry, several empty electrical outlets, and a general understanding that silence is golden. Not to mention, being surrounded by books, which makes for a pleasant atmosphere when attempting to write a book. Three cheers for libraries.

Although I have been writing every day, I have written very little, considering how quickly words tend to flow out of me. I’m finding it difficult to really tell “my story” as a proper story. To know where to start, what to include, what’s interesting and what’s a complete bore.

I also get a bit discouraged when I realize how many cancer memoirs are out there. It seems it’s extremely common for people with cancer, specifically women with breast cancer, to write a book about their experience. But what keeps me motivated are a few things:

A lot of these books aren’t written well. There, I said it. Sorry, but just because you had cancer does not mean you are now a writer.

A lot of these books are written like survival or “how-to” guides. How to get through chemo, how to tell your kids, etc. etc. And while that’s all great, I don’t see myself writing any such guide, or telling anyone how to deal with his/her cancer. All I want to do is simply tell a story. My story.

A lot of these books are written by older men and women. Even some of the ones I found by younger authors were still written by people older than I am.

A lot of these books seriously lack humour, and conversely, some are so lighthearted that to me, they don’t really show the full picture of what it is to live with cancer. There are lots of female-centered cancer memoirs that try to emulate a Sex and the City vibe. Cancer can be sexy! I kept my feisty, feminine spirit the whole time! Cancer has nothing on me! If you’ve been reading along, you will know that I am not that person… at all. Cancer is shit, especially when you’re a young adult, and I have no intention of shielding anyone from its realities. I think there’s a way to be dark, and truthful, and humourous. And I don’t believe there are too many people who have managed to do this.

And lastly, what I keep telling myself is this: My story is uniquely mine and no one else’s. It doesn’t matter if a million people have chronicled their disease. No one is me, inside my head. As much as there are many commonalities, we all experience life and its struggles very differently. What if JK Rowling had said to herself, “There have been too many books about wizards and magic, it’s all been done before.” You guys, we wouldn’t have Harry Potter. And a world without Harry Potter is just not a world I want to live in.

So, that’s my pep talk for the day. Maybe it will inspire you to do something you’re not sure you’ll be any good at. Or maybe it will just inspire you to buy my book, some day, a long time from now, when it is complete. And I’d be okay with that; if there’s anything you can infer from the fact that I am in a library, it’s that I’d welcome a little financial boost in my life. And then maybe instead of the one bagel I purchased, I would go wild and purchase two bagels. TWO BAGELS.

Dream big, friends.

The bumpy road to recovery

Posted on by Steph

Want some updates? Here they are:

I am taking a hiatus from work… again. The reasons are complicated so I will not go into the finer details. But essentially, I wasn’t feeling great, and it looks like my return to work may have been a bit premature. I felt very conflicted about this at first. I felt like a failure, like I had let myself down. And then I decided that I might be being a bit hard on myself and that my health is numero uno in terms of my priorities right now. So I am taking a bit of extra time to recover, continue my treatments, and figure my life out. All that fun stuff.

I had a late-night MRI a couple nights ago to follow up on some pain I’ve been experiencing. Obviously, we hope for nothing out of the ordinary. Because something out of the ordinary would be very unfortunate in this case. Sometimes it feels as though my whole life is just waiting for results. Waiting for life, or waiting for death. Waiting for the other shoe to drop. I really want to move past this phase, as it is getting exhausting.

Speaking of exhausting, my nightly hot flashes/sweats are back with a vengeance. I got all cocky when they went away, thinking, this hormone stuff is no big deal, I can do this, no problem. But for whatever reason, my body is having a very strong reaction to the tiny little pill I am swallowing every night, causing my face to feel as though it is melting off my body. Unfortunately, it tends to be worse at night, which means I am not sleeping very much. There is also construction going on outside my house that starts early every morning, right as I am trying to get some extra hours of zzz’s in. I fantasize about going over to the construction site in my pajamas, with my hair a big frazzled mess, and yelling at the workers, “HELLO I HAVE CANCER AND I’VE HAD A REALLY CRAP YEAR AND I NEED TO SLEEP SO CAN YOU ALL PLEASE SHUT THE FUCK UP OR I WILL PUNCH YOU ALL IN YOUR UGLY FACES.” But I just really don’t want to be that person. Not yet.

Last week, I spoke at the University of Toronto to the second year medical students. They were studying oncology that week, and yet there wasn’t any plan to actually speak to a patient living with cancer. Enter your favourite, friendly cancer gal to save the day. I prepared a quick little powerpoint entitled “My Cancer Story” where I attempted to go from the beginning to the current stage of my cancer experience. When creating the powerpoint, I realized how long and complicated my story really is. I only had time to really touch upon the basics. At first I was worried I wouldn’t have enough to say. But as it turns out… I have a lot to say. A lot.

I loved speaking to this room full of students. I loved how engaged they were, and how much they wanted to learn, and how I actually had something to teach them, even though I have absolutely no medical background. All I have is my life experience, which, apparently, people seem to find a lot of value in. The students had the chance to ask me questions, and during that time they also revealed to me me that many of them have been reading the blog. They told me about how it has impacted them, in both their learning and their personal lives. I was really touched by how appreciative they were and it made me better understand the power of sharing my story. Some positives really are coming out of the negative (but note: this does NOT mean I am thankful for my cancer. I still hate cancer and think it’s terrible and do not recommend it as a method of creating social change. I repeat: CANCER IS BAD.).

The class presented me with THE BEST mini cupcakes and they all signed a card. There were so many notes that they wrote all over the back and had to add sticky notes on top of the other notes. I was blown away by how thoughtful they were.
The class presented me with THE BEST mini cupcakes and they all signed a card. There were so many notes that they wrote all over the back and had to add sticky notes on top of the other notes. I was blown away by how thoughtful they were.

And my last update for now: I have started to write. A book. There, I said it. So now I have to do it. It might take several years. I might never finish it. It might be a huge bore. It might never get published.

But, whatever. None of that is as bad as cancer. And if I’m doing the glass half full thing, then I should also entertain the other possibility: That I’ll write a book, someone will publish it, it will become a bestseller, a famous director will want to turn it into a movie and hire me to adapt it into a screenplay (um hi, I’m not letting some dummy screenwriter write my life story, thank you very much), I will be portrayed by some awesome young starlet and we will become great friends, and the movie will win all sorts of Oscars and I’ll be the next big thing in Hollywood and eventually everyone will forget I ever even had cancer.

Why not.

Breast awareness

Posted on by Steph

So many anniversaries lately. So many at this time last year, I was doing X, remember?

Today is yet another date that still stands out to me. October 19th. One year since I bid adieu to my breasts. One year since the cancer treatment really began.

There hasn’t been one day since then that I don’t think about my breasts. The current ones, the old ones, the cancer. Breast breasts breasts. My whole life, centered around some hanging, bouncy (albeit, no longer bouncy) body parts. Impossible to escape, especially now, during the month of October, BREAST CANCER AWARENESS MONTH (or have you not noticed?).

I think about breasts every time I stretch my left arm to turn off my lamp beside my bed, when I feel the uncomfortable pull and remember that my arm does not move the way that it used to.

I think about breasts when I realize that none of my fancy dresses fit my body anymore because of the firm side-boob implant I have that prevents the left-side zipper from zipping.

I think about breasts when I hear them spoken about on television, in a movie, in a conversation. So much talk of breasts, everywhere you look. Breast-obsessed.

I think about breasts when I walk by a lingerie store in the mall, and think of all the bras that are still sitting in my drawer that I will never have any need for again. The comfy ones, the pretty ones, the lacy ones. Relics of the past, gathering dust, taking up room.

I think about breasts when I receive a tight embrace. A simple hug. When my ribs are squeezed just a bit too hard, still feeling bruised from the stretching, from the implants, from the surgery.

I think about breasts when I look in the mirror, every morning, every night. Every time I am in the shower, every time I get out of the shower. When I see two large red scars across my chest, when I am confronted with the reminder, oh hey, you had breast cancer… and you still might have breast cancer.

I think about breasts when I remember this day. Being injected with radioactive dye before my surgery. The pain I felt as the dye pushed into my veins. The tears that flowed as I realized what was to come next, and wondering, why me, why me, how is this happening, why me. I cried alone in the changing stall, while I slipped into my hospital gown. I don’t even remember staring at my breasts. There was no farewell. No last glimpse. No time to mourn.

I think about breasts when I remember being drawn on with magic marker, as my surgeon marked up the areas to be cut. I kissed my husband and said goodbye to my parents and lay down while someone rolled me into the elevator and down a hall. I cried and felt as though I was 5 years old, scared of what lay behind the doors. I didn’t let the doctors see me cry. I didn’t want to show the fear. There were so many people in that operating room. Surgeons, nurses, fellows, anesthesiologists. It almost felt like a party. Everyone there, to be with me. To save me.

I think about breasts when I remember the feel of my surgeon squeezing my hand as I waited for the drugs to wash over me, while the whole room stood by, waiting to remove a major part of my femininity. The body I once knew, no longer.

I think about breasts when it is October 19th. My own breast cancer awareness day. All mine.

I don’t need a pink ribbon, or pink toilet paper, or pink football players to remind me.

Believe me – I am aware.

Thanksgiving (Canadian edition)

Posted on by Steph

I am thankful for:

The roof over my head

The food in my fridge

The water in my glass

The husband who makes me laugh

The friends who continue to check up on me

The family who are always there

The ability to laugh at it all

The ability to cry, when laughing fails

The pill I take every night

The medicine that flows through my veins every three weeks

The knowledge of my physicians

The kindness of my nurses

The compassion of perfect strangers

The money in my bank account

The existence of chocolate

The buzz of the television

The peace and quiet of a rainy day

The long weekend

The health of my family and friends

The people who read my words

The people who demand I write more

The little things

The country I live in

The stories that inspire me

The changing of the seasons

The ability to walk up the stairs

The hair on my head

The clothes that keep me warm

The blanket that keeps me warm

The dream of a cancer-free life

The fact that for today, I am alive

Whatever tomorrow brings

Whatever the future brings

I am thankful

 

 

The bonds of cancer

Posted on by Steph

When I was first diagnosed with breast cancer, I was very ambivalent about being introduced to other women with the same disease. I wanted to find people I could relate to, yet each situation is also highly individual. Not to mention, most women with breast cancer are considerably older than I am and my set of issues are largely different from theirs.

I was also cautious of making “cancer friends”, as I knew it could mean potential heartbreak. When you and a friend both have cancer, there is always the possibility that one of you might make it, and one of you might not. Or both of you might, both of you might not. It’s entirely unpredictable. I worried about creating friendships where I would be forced to deal with cancer again and again, or compare my disease to someone else’s.

Eventually though, you realize that cancer is majorly lonely and that all your best friends have zero idea what you are going through, as much as they might try to understand and connect. Eventually you need to find others who have been through what you have, and truly understand all the emotions that come with cancer, and after cancer.

Awhile back, I connected with another young woman named Naomi, through my blog. She is a bit older than I am, but in her 30’s, and still very young in breast cancer terms. She has a husband and a little boy, and I learned that we were both at similar phases of our treatment, and being treated at the same hospital.

We bonded over our shitty luck and became friends quite quickly. It is easy to connect with someone when you’re both bald and have had your breasts removed and your life has become batshit crazy. Naomi is a beautiful, kind and generous person and I’m so grateful that we found each other, despite the reason.

Unfortunately, very recently, Naomi learned that her breast cancer had made its way up into her brain, forming another tumor that was causing her headaches. Of course, this was devastating news to hear. We had both just finished up with the worst of our treatment and wanted to celebrate together. This wasn’t supposed to happen, and definitely not so soon. But as I’ve said before, cancer doesn’t really care what you have planned, it just has a mind of its own. And Naomi’s cancer is a particularly nasty beeyotch who clearly needs to be put in its place.

When Naomi called to tell me her cancer had metastasized, she was immediately concerned with my emotional well-being and how that type of news might affect me personally. This is an example of how totally selfless and awesome Naomi is.

Last week, Naomi had brain surgery to remove her tumor and she of course rocked it like a rockstar, because that’s how us cancer galz roll. And now she has another scar to add to the lot, although this one is particularly bad-ass. Once you have staples in your head, you’re pretty much cooler than anyone else around.

I visited her in the hospital a couple times this week. Obviously this was not an easy task. Having cancer friends is complicated for this very reason. I am painfully aware that it could just as easily have been me lying in that bed. I know that that could be my future. A tumor in the brain, or bones, or lungs, or liver. All within the realm of possibility. This is what I have to wake up and face, every day. Every single day. And seeing my friend have to go through it is a pretty harsh reminder of the beast that is breast cancer and the giant question mark that is my future.

But with all that said, and the many emotions I have been forced to confront, I have no regrets over making cancer friends. Naomi popped into my life during a time where I really needed her. And now she needs me again, so I will be there. It is as simple as that. She is no longer just a cancer friend, she is a real friend and a part of my life. I will do what I can to ease her troubles, and I will be a shoulder to lean on. I will cry with her when things get tough and curse cancer for continually picking on us nice guys. And I will celebrate all of the good moments along with her, because I know there are still many to come.

Watch your step, cancer. You are totally messing with the wrong bitches.