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

Naomi Angel

A few months ago, I wrote this entry about my friend Naomi. Late last night, my beautiful friend passed away, leaving many people to mourn the loss of a truly amazing woman.

I have thought of Naomi non-stop over the past several months, as her health began to deteriorate. I have missed her texts, and emails, and our lunch dates. I have sat at my computer at night, reading through all our old messages from the earlier cancer days, and looking through her photos, and praying for miracles.

Naomi and I had a truly unique friendship. Having “cancer friends” is a bond that only other “cancer friends” can really understand. Our friendship was not at all typical in any way. I have “hung out” with Naomi more times in the hospital than out of it. Our text messages and emails, although sometimes about work, family, etc., were most often about our cancer lives. Our lives.

We’d discuss arm exercises, and radiation CT’s, and MRI machines, and plan quick meet-ups in the waiting room. We talked about our hair and compared its post-chemo growth. I was completely jealous that Naomi’s hair and lashes were coming back so quickly. And she would assure me that mine would come back soon. I have sat with Naomi in the emergency room, helped her to the bathroom, changed her clothes for her (the end of one of her last emails to me was: Also, I realized that you and your mom both saw my bare ass at the hospital! Oh the indignities!). When the MRI tech asked questions about breast-feeding, we both looked at each other and rolled our eyes. Hello, we don’t have breasts! We understood each other in this way. Our secret friendship club.

The first week that Naomi and I started emailing each other, before actually meeting in person, I felt like a giddy teenager. My heart would skip a beat when I saw I had a new email from her, as we would write lengthy messages back and forth, talking about our treatments, our husbands, and how much cancer sucked. I was so happy I found her, even more so when I learned about her academic background and her general interests and realized we would totally be awesome friends in the real, non-cancer world. But sadly, we never really got to the non-cancer world together. Cancer was always there, until the very end.

Pic taken from Naomi's blog. She bought this fancy coat after her first brain surgery and demanded that the saleswoman bring her a bunch of fancy things to try on. She bought two expensive coats that day, and she was so excited to show them off. She looked beautiful, as always.
Pic taken from Naomi’s blog. She bought this fancy coat after her first brain surgery. She went to Anthropologie, sat down in the fitting room, and demanded that the saleswoman bring her a bunch of fancy things to try on. She bought two expensive coats that day, and she was so excited to show them off. She looked beautiful, as always.

I remember the first time I met Naomi in person, at a lunch spot near the hospital, in between our appointments. She was sitting on a bench in the sun, in a bright red coat. She looked so beautiful. Naomi had this amazing aura about her. She was so cool, and peaceful, and smart. I looked up to her. Even facing a tough prognosis, she always had so much hope. Her hope gave me hope. I was in awe of her.

When we would write to each other about our fears, she wrote to me: Focus on what’s happening now. The future will come when it’s ready, and it’s so hard to predict what life is going to bring. I loved her way of thinking, and her way with words. She always lifted me up, even when she was down.

I am so angry at cancer, for taking a wife from her husband, a young mom from her son… a daughter, a sister, a friend. It is all terribly unfair. But anger won’t bring her back, and it won’t take anyone’s pain away. So instead I will choose to think of all the good she brought into the world while she was here, and into my world, and how lucky I was to have known her for a short while. She was truly an angel.

My heart is with her family. I hope they know how much joy she brought to everyone who knew her and the impact she had on so many people’s lives.

On my life.

xo

The bonds of cancer

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.

 

A celebration

When I was still doing chemo, some members of my family had mentioned it might be a nice idea to have a party when it was all over, to give me something to look forward to. I started researching some venues and thinking of who I might invite, but then I stopped. I felt sick and ugly and bald. I couldn’t imagine ever being healthy enough to attend a party. And I didn’t feel like celebrating. My future felt uncertain, a big question mark. Why celebrate when there might be more terrible news lurking around the corner? How would I really know when I was at the “end”?

So the party plans stopped and I told everyone I didn’t want to think about it for the time being and didn’t feel comfortable planning anything.

Then chemo ended, and radiation ended and I started to get better. And I had a scan that I was really scared about and felt some relief from the results. And then I decided, okay. Time to plan a party.

I knew this couldn’t really be a woohoo, I’m cured! themed party, because, well… I don’t know if I’m cured. And no one’s going to be saying those words to me any time soon. But I figured it didn’t really matter. Whether I’m cured or not, whether I live or die, right now I am feeling pretty good and I can stand up for multiple hours without fainting and I can climb several flights of stairs and I can lift a bag of groceries without needing a nap – and all of those things seemed worthy of celebrating. Just being healthy, for the moment, and alive, for the moment.

I also really wanted the chance to gather all the people who had been there for me this past year, in one room. It was my opportunity to say thank you to those people who had dropped meals at my door, sat with me while I moaned, mailed care packages to me, sent funny texts and emails to cheer me up, let me know they were always thinking of me.

We put together a huge candy bar. And we had cupcakes. And mini sandwiches with nutella and peanut butter. There was a music soundtrack provided by yours truly, and lots of laughs and hugs throughout the evening. I even made a quick impromptu speech at the coaxing of my grandfather.

It was so special to have all these people under one roof, and I admit, a bit overwhelming. I hadn’t seen some of these friends in a long time, and it’s very rare to have the opportunity to be surrounded by so many people who care about you, when there is not a wedding or any type of traditional milestone occasion involved. I had a friend fly in from New York to surprise me, and I also got to meet a very special lady for the first time after corresponding with her the whole time I was in treatment. It was an amazing night filled with amazing friends and family. And I am so lucky.

*All photographs taken by Lindsay Lauckner

Side effects may include the following

I’m tired.

This week has been a long one. On Tuesday, I was at the hospital almost the entire day, dealing with various appointments and consultations, and an unfortunate mix-up with my blood. I had to hear more things about my “prognosis being slightly worse” because of my age and “greater chances of it coming back” because of X, Y, and Z, and blah blah blah, and again process the idea of more treatment, which is starting to feel never-ending. It is difficult not to get upset after these types of conversations. My typical routine is to get through it, keep myself composed, ask all the right questions, and then go home and scream and cry and shout “I don’t want to dieeeeeee!” and hyperventilate for a minute or two. Then after exhausting myself, I usually put some crap on the TV like The Bachelor (my saving grace as of late) and distract myself until the next wave of panic hits for one reason or another.

Needless to say, it is exhausting. I keep telling people that I am bored. But it’s not the bored you are thinking of, where I have nothing to do. In fact, I often feel like I have too much to do and not enough time. It is more a case of an overall boredom with cancer. I am bored of dealing with it, talking about it, stressing about it. Bored. I want to be focused on something else. I would rather be complaining about the cold that many people on my Facebook seem to have. I would rather be staring at a wall, watching paint dry, or scratching my fingernails across a chalkboard. Essentially, I would rather be doing almost anything. That is where I’m at.

I have been experiencing some bad pains in my back the past couple days. For the average person, back pain would be of little concern. But anyone who has or had cancer can tell you that any new type of pain can be a cause for alarm. It is nearly impossible not to quickly jump to the conclusion that bad pain means the cancer has spread. I wish my brain did not go there, to such a dark place. I wish I could brush off pain the way other people are lucky enough to be able to do. But I can’t. Will I ever be able to? I’m not sure. But for right now, I am really hoping the pain gets better, because I don’t need a new worry to add to the list. The list is getting awfully long, my friends.

Tomorrow I go for my next chemo, which involves a new regimen. The infusions will take a total of 5 hours. With the typical wait times, I will likely be in the hospital all day. Please feel free to suggest fun things to do while sitting in a chemo chair for 5 hours.

The new chemo involves a drug which is typically known as one of the more horrendous chemo drugs one can receive. Fun possible side effects include neuropathy, debilitating mouth sores, terrible body pains and aches, loss of nails, and extreme fatigue, among others. As my oncologist said, I don’t think you’re going to like it too much. I should mention that over the next few days, or possibly week, I likely won’t be too great at responding to any emails or messages. Know that if I don’t answer you, I am most likely lying under my covers in the dark listening to some sort of “Songs for sad emo wussies” playlist on Songza.

I will also be starting my first round of the drug that will hopefully have a life-saving effect on me. And in addition, I start my clinical trial drug, where I will either be receiving a real drug, or a placebo. I will not know. Please cross your fingers for me that I receive the real deal. My chemo drug also has a tendency to cause severe allergic reactions, which is why I am currently hopped up on steroids and will be for the next couple days. So please cross your fingers as well that I don’t have a severe reaction when they start the drug. In fact, cross your toes too, if you have the ability to do that. Lots of happy thoughts tomorrow, if you can spare some.

On a slightly cheerier note, this week was a really great one in the I’m-a-cancer-patient-so-I-get-lots-of-gifts arena. I received a handmade tshirt from an old schoolmate (and former prom queen, hollaaa!) who now lives in New Zealand. She somehow created a stencil of me wearing a scarf and incorporated a cupcake theme and painted it on, and the whole thing was beyond impressive to me. I wore it to the hospital yesterday, proudly. I also got another package from the The Canary Islands (yes, many of my friends live in weird, exotic locales) which included a super soft sleep mask that I will likely bring with me tomorrow in hopes that it induces a nice chemo coma. And I got some more pretty nail polishes from my new pen pal, who volunteers to send me things through an organization, out of the goodness of her kind heart. On the food side, I have some soup, mashed potatoes, cookies and more goodies waiting for me. You all have no idea how much these things brighten my day. Well, hopefully you do. Because I just told you.

That’s all I wish to share for right now. Think of me tomorrow, with my hands and feet submerged in buckets of ice (something I have to do to try to prevent finger and feet problems). Hopefully that creates an interesting picture for you.

See you on the other side.

Today.

FAQs

As part of this whole cancer thing, I get asked a lot of questions. It can be tiring repeating the same thing over and over, so I’ve decided to make a list of some FAQs with answers.

How did you find the lump in your boob?

I was sitting on my couch, alone, and touched my boob. I was not doing any sort of self-exam. I just touched it, and felt it, and knew. Moral of the story: start getting gropey with your breasts.

You’re so young to have cancer! Do you know how young you are? How do you have cancer?! You’re so young! Are you aware that you’re young?

I have never, in my life, been more aware that I am not an old person. Young people get cancer. Sadly, I am not the only one. It’s a very crappy fact about life, but nonetheless, there it is.

But at least since you’re young, you’ll definitely be fine.

I really like this idea. But unfortunately, that is not how it works. In fact, cancers tend to be more aggressive in younger people, which is the case with me. But don’t worry. I’m pretty aggressive myself.

How did you get your cancer?

I don’t know. No one knows. That’s not really how cancer works. It is caused by cells dividing abnormally. I didn’t tell my cells to do that, they just did.

But surely you must have done something? Eaten something? Stepped in something?

Some people want to believe that cancer patients caused their cancer in some way, so that they feel it will never happen to them. Did you know that there are vegan, all-star athletes out there with cancer? And that there are people who smoke a pack a day and eat burgers all day and do not have cancer? Although there are certain risk factors for certain cancers, it is often random and unfair. Two risk factors for breast cancer are being overweight and drinking alcohol. I am a pretty far cry from obese, and do not drink. Ever. How do ya like them apples? In fact, the largest risk factor for breast cancer is simply being a woman. Didn’t have much choice with that one.

Did you know that if you drink this special tea, or go to this website, or jump up and down 3 times, you can cure your cancer?

I didn’t know that! What a dum dum I must be. I will definitely consider stopping my treatment and ignoring the opinions of my doctors and decades of medical research and evidence, in favour of the advice from some website full of grammar mistakes and sex ads. I’ll be sure to let you know how it goes.

Did you know that sugar will cause your cancer to spread and kill you? Stop eating cupcakes, fatty!

There are several myths about cancer that circle the internet, which are completely unfounded, and only serve to stress the shit out of poor souls like myself. What each person chooses to believe, is his or her right. It is also my right to eat or do whatever I want, without having to justify it to anybody. Please know that I am extremely well-informed and not actively doing anything to harm myself. You can trust that no one wants me to stay alive as much as I do. For those who are truly concerned, I can promise you I am not shoving my face full of cupcakes all day. Although I could sure use one right now.

Did you get my message/voicemail/email/text/comment/card?

Yes, I did! I get a lot of messages every day, which I love. It makes everything a bit more bearable. I don’t always write back. Sometimes I forget. Sometimes I am tired. Sometimes I have nothing new to say. But I read everything and often share your nice words with my husband, and we’re both very grateful for so much support. As someone who loves getting snail mail, it is so fun to open all the cards I get. When a crisis happens in your life, you learn who your true friends are. Who will really be there for you. You also learn that you have a bunch of family you’ve never met who are really awesome. And that there are strangers all over the world who are caring and kind. People are, generally, pretty great. I can attest to this, wholeheartedly.

Are you a writer for a living?

Nope. I was published in the Toronto Star when I was 10 years old, and figured I hit my peak. But I have always written, for fun, and been encouraged by others to do so. Because of this blog, I now have many people encouraging me to write a book. So maybe I’ll do that. Stay tuned.

What does chemo feel like?

I’m not sure if anyone has actually asked this, but I know people wonder. And I don’t know how to explain it. Just thinking about describing it makes me feel nauseous. It’s not pleasant, to say the least. One thing that is difficult to describe is the fatigue. Everyone knows that chemo causes fatigue, which often lingers after treatment is completed. I remember thinking, being tired isn’t so bad, I’ll just sleep, I like sleeping. But it is impossible to compare the feeling to being “tired”. It is more an overwhelming sensation of weakness, spread across my entire body. Simple things, like boiling a pot of water, become really difficult. And often, sleep doesn’t make it better. As someone who really likes words, I can’t think of a better one right now than “yucky”. Chemo is really yucky. That’s about the best way to describe it.

When will you be done with chemo? And then is that it? You are cured?

A lot of people think that cancer treatment is simple. You pump yourself full of some drugs, and then you’re cured, and you move on with your life. For some people, this may be the case, but for most, it simply isn’t so. Each type of cancer is different and requires different types of treatments to keep it under control. Once the treatments are finished, you pray and hope that they worked and that the cancer will not return. In my case, I will hopefully be finishing chemo in two months. But because of my subtype of breast cancer, I will still need to get drug infusions every three weeks at the hospital, for a year. During this time, I will also be part of a medical trial. Then I will be on a different kind of drug, with its own fun side effects, for many years after that, to try to keep the cancer at bay. Somewhere in between, I will have at least one more major surgery. I will also spend the next however many years fearing the recurrence of my cancer, as much as I will try to block it out. It is most likely to recur in the next two years and the anxiety over that, at least for me, is a very real and difficult part of the struggle. So in summary: it is very hard for me to answer when people ask when I’ll be “done”. There will be milestones, most definitely, and I will try my very best to enjoy and celebrate each one. I’ve already conquered a few. But the road is a long one for me. Hopefully one paved with many cupcakes, now that you have learned that they will not cause my demise.