The Ring of Fire

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.

In fact, life is swell.

Except for the hot flashes.

Those can go to hell.

Diary entry, February 8, 2015

Dear diary,

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.

Signing off until next time,

Steph

The taxi diaries

12:15 AM, Friday night, in a taxi

Taxi Driver: Are you coming home from work right now?

Steph: No, I was at a party.

TD: Oh.

S: I’m actually not working right now.

TD: Oh. What did you study in school?

S: English. Not very useful. Do you like your job?

TD: Nope.

S: Oh, that’s too bad. What would you rather be doing?

TD: I used to do something with pharmaceuticals. My old company X is being bought by company Y.

S: Oh yah, I know those companies.

TD: Really?

S: Sure. I’ve taken my share of pharmaceuticals.

TD: You take pharmaceuticals?

S: Not as many now, but a bunch in the past.

TD: Oh, what were you taking them for?

S: Cancer.

TD: WHAT?! Cancer?! Oh my goodness. You are so young!

S: Yepper.

TD: Sorry for asking you about this.

S: It’s fine, I talk about it all the time.

TD: What kind of cancer?

S: Breast cancer.

TD: WHAT?! Breast cancer!!! NO! WHAT?!

The taxi driver turns on his interior light and spins around in his seat to get a better look at the young cancer patient.

TD: Oh my goodness. You are so young! Wow. Wow. Wow.

S: It’s okay. I’m doing fine.

Steph marvels at the fact that she now has to calm down a taxi driver about her having cancer.

TD: So is there some kind of genetic thing?

S: Not that they know of. But my dad had breast cancer, so probably.

TD: Wait, WHAT?! Your dad? You mean he had prostate cancer?

S: No. Breast cancer. Male breast cancer. It’s rare, but it happens.

TD: Oh my goodness. Wow. I can’t believe this. Wow.

S: Yepper. That’s why I have this short hairdo.

Taxi driver spins around in his seat again… while driving.

TD: You had the chemo?!

S: Yep.

TD: Oh my. Gosh. So what are you taking now?

S: Tamoxifen.

TD: Oh, Tamoxifen. Okay. Did they give you antioxidants?

S: Uh, no.

TD: Okay. You have to eat berries. Lots of berries.

S: I eat berries every day.

TD: Good. Doesn’t matter what kind of berry. Black, blue, strawberry. Every day. You have to.

S: Sure.

TD: And tomatoes! Are you eating your tomatoes?

S: Yep. I eat a ton of tomatoes.

TD: But not raw. You have to grill them on the barbecue.

S: Sure thing.

TD: And you have to make sure you eat the seeds inside the tomato. That’s the important part. Every day, you need to eat the seeds.

S: Uh huh.

TD: And the other thing is bananas with milk. Our bodies are full of electricity. Like when you rub a comb on  your hair and it stands up.

S: Static electricity.

TD: Yes! That’s it. We’re all just electricity. So you have to eat the bananas in the milk. Not so many bananas every day. But just one banana with the milk.

S: I eat a lot of bananas so I think I’m good.

TD: Just do all these things and you’ll be fine, I promise. It’s really just about a lifestyle change.

S: Okay, yep, sure, thanks.

The taxi pulls up in front of the house.

TD: I wish you the best of luck.

S: Thank you! I appreciate it.

TD: And I hope to see you soon. Do the things I said and then you’ll see me again and tell me I was right.

S: Sure! Have a good night! BYE!

The bumpy road to recovery

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.

The waiting game

There hasn’t been too much to report lately. I feel as though I am in a strange state of limbo. But not the fun kind of limbo, like these people are experiencing:

The fun limbo. Although not really that fun if you're terribly uncoordinated like I am.
The fun limbo. Although not really that fun if you’re terribly uncoordinated like I am.

Rather, I am in a sort of cancer limbo. Somewhere in between being sick and being healthy. In between the chaos and instability of the past year, and what I hope to be the more calm and predictable pace of the next phase. I feel as though I am just waiting. Waiting to be approved to return to work. Waiting to have my 3-month check-up with my oncologist. Waiting for my hair to grow back. Waiting for all the plans I have to become a reality. Waiting for my life to resume.

And of course, waiting to see if the treatment worked, and to know that I didn’t go through hell for nothing. Unfortunately, I’ll be stuck in limbo waiting for that particular answer for quite awhile. So I guess I need to adapt and adjust accordingly. Which, luckily, I’ve gotten pretty good at.

I am also waiting to see if these terrible hot flashes will subside. I got about a two week break between chemo-induced hot flashes and hormone-induced hot flashes. Turns out, they are pretty similar. I even take a mild anti-depressant to try to combat them, but it seems to be failing me. Just another pill to pop.

I’m sure there are many menopausal ladies out there that can relate to the horrific discomfort that is the HOT FLASH. I wake up multiple times throughout the night, feeling like my face is on fire, with my body covered in sweat. Then I lie awake, remember oh, right, I had cancer. This sucks. And I wait for it to pass until I can finally go back under the blanket, and wait for the next one to hit.

This isn’t an uncommon thing for a woman to experience. I get that. But I am not supposed to be experiencing this for another 25 years. I try to flip my thinking and remind myself, I’m doing this to prevent a recurrence of cancer. I’m doing this to increase the odds I won’t die. And when I think of it that way, it doesn’t seem so bad. A small price to pay, really. But when I feel as though I’m on fire, I’m not thinking about the benefits of cancer treatment. I’m thinking about how shitty it is to have cancer in the first place. How frustrated I feel that I will be dealing with side effects for a long, long time.

Last week, I went to a Justin Timberlake/Jay-Z concert in a big stadium. I don’t typically go to shows like this. I prefer more intimate performances, and less of a spectacle. But I thought it would be a fun time, and it really was. It was good for me and my husband to be out, on a weeknight, doing the kind of thing your average young couple in the city might do.

There was a moment when I looked around at the other people in the crowd who surrounded me. My peers. People my age. Girls with their long hair, and their breasts sitting right where they should be. And I thought to myself, I have been through so much more than any of you. You all have no idea.

When the concert began, I felt my emotions take hold and my eyes even got a bit misty. It still feels surreal, to be out, in public, enjoying myself. I have experienced so much misery in such a condensed period of time, that the happy moments catch me off guard. Those moments where I feel like my life has returned, like it was all a bad dream.

And then, I was hit with a hot flash. My face felt as though it would melt right off onto the dirty floor, and flow through the aisles, mixed with all the spilled beers that had been kicked by overzealous concertgoers. I thought I might pass out and topple over my chair, while everyone around me continued to dance and sing along, oblivious to my scorching body temperature. I remembered the cancer. And that I’m not like those other people. And that I’m not back to my normal life. Not just yet.

And so, I wait.

My friend drew this for me when I was doing chemo. It is super hostile and I love it.
My friend drew this for me when I was doing chemo. It is super hostile and I love it.

The time I met a real-life hero

This past week:

I completed 11 of my 25 radiation treatments. So I’m about half way there. My skin is starting to burn. Right now, it just looks like I stayed in the sun too long and forgot to put on sunscreen. There is no pain, it’s just pink and warm to the touch. Since there’s still a while to go, I predict I might be headed for some discomfort soon, but I’m still hoping for the best. The past couple days, I’ve started to feel slightly exhausted. I’ve had some people tell me that the hardest part of radiation was how tiring it was, but so far I’ve felt pretty great. But I am worried it is now catching up with me and I imagine I might have some dates with my couch coming up in my very near future. Thank god for TV. And couches, of course.

I met a young woman named Sonia who is a fellow breast cancer sister. She was my exact age upon diagnosis, and she had my same type of aggressive cancer. She is now 7 years past her diagnosis, and is doing great. I repeat – she is alive. After 7 years. I can’t tell you how much it lifted my spirits to meet her. The idea of being alive 7 years from now actually gets me giddy. I realize that for most people, they just take it as a given. But I certainly don’t. I’m so happy I met her and have a new friend in my life who can give me some real, tangible hope. Pretty cool.

I cried a bit. I’m not really sure why. It hasn’t happened in awhile, because I’ve been pretty distracted and feeling mostly good. But I’ve had a few moments of panic lately, for one reason or another. Where I think a bit too much about the cancer, and am sent into a spiral of panic and doubt and fear. I really wish I didn’t have to think about this crap. It’s usually just the realization that I have to think about this crap that is the hardest. Even after all this time, it still feels like this is not my life, like some gigantic mistake was made. It’s all a big joke! You never had cancer! Fooled ya! I wish.

I started my hormone therapy (Tamoxifen) last night. I felt a bit sad, swallowing the pill, realizing how long I will have to take those pills. But it’s one more necessary step, so I took it. So far nothing to report except a bit of queasiness today. There are numerous possible side effects, some more common than others. And some that are pretty unfortunate. If you’re really interested, you can Google it for yourself, but I’m not going to list them here because otherwise I’ll convince myself it’s all happening to me. And I’d rather not do that tonight. I’ve got enough on my plate for now.

I got to hang out with these two lovely ladies. I have some really great girlfriends. These are two of them. We spent most of our time giggling. As it should be.

And the winner of the “Best Part of My Week” award: I attended a press conference at Princess Margaret about an exciting new cancer drug. I was very excited to attend this announcement, because Dr. Dennis Slamon is one of the investigators working on this drug and I knew he’d speaking at the event. This brilliant man is responsible for inventing the drug Herceptin, which I currently receive every 3 weeks at the hospital. This drug was one of the biggest advances in breast cancer, and has prolonged or saved the lives of an enormous amount of women. Dr. Slamon faced many obstacles when trying to get this drug out to the public, and his persistence and determination eventually got it to the people who needed it.

I have never had the opportunity to meet someone like Dr. Slamon, someone who literally might save my life. When I saw him, I broke into a sweat and was overcome with nerves, like a little girl meeting her favourite pop star. I went over to him and shook his hand, and thanked him. It was completely surreal and I’m amazed that I didn’t start crying, or hugging him, both things which I thought might occur. It was such an honour to meet him, and I hope people really appreciate that there are men and women out there like him, sitting in their labs, searching for a cure, trying to save all our lives. They might not wear capes or star in 3D blockbusters, but they are heroes in the truest sense of the word. Real-life superheroes.

I am so grateful to this man and to all the others trying to find a way to help the millions of people facing this bitch of a disease. Thank you.

Dr. Slamon, my hero
“Screw you cancer, I’m going to make you my bitch.” – Dr. Slamon (*note he did not actually say this, but I like imagining he says it to himself when he’s alone in his lab)