Updates (but not really)

Hello faithful readers! Jut checking in because it’s been awhile. How are you? I’m just fine and dandy, thanks for asking. The weather has finally warmed up and I am loving it. We Canadians talk about the weather every chance we get. It is so rare for it not to be completely miserable out, that when it’s a nice day, we jump for joy and can’t stop talking about it. Can you believe this weather we’re having? What a gorgeous day! What are you doing on this beautiful day? Get outside… it’s so nice out! I can’t even remember what snow and freezing feels like! We revel in the warmth and sunshine and talk about it until we are blue in the face, ensuring that we have fully demonstrated our gratitude to great Mother Nature.

Or maybe that’s just me.

Now that we’ve sufficiently discussed the weather, we can move on.

What’s new with me? Everything. I went from a very laid-back cancer recovery vacation to juggling about a million different things all at the same time. I’d be lying if I said I haven’t found it a bit overwhelming, going from zero to a hundred practically overnight. My brain and body are tired. But it’s all good stuff. Very good stuff. I feel like I’m having a bit of that cliche post-cancer zest to grab life by the horns and make sure I’m using my time wisely, while I’m still here.

So you’re probably wondering — what is all this exciting stuff I’ve been occupying my time with? Well, unfortunately, I’ll be saving that for a future post or two, so you’ll have to be patient. Mostly because I just don’t have the time right now, and also because some of it is top-secret… which will make sense once I explain. But I’m not explaining now. Sorry. Aren’t you just on the edge of your seat?! You probably shouldn’t be. I’m not going to reveal that I cured cancer or something that major. Although that would be so wonderful, wouldn’t it? Not today, my friends. Not today.

In the meantime, while you await future updates, I will ask a favour of you. I am doing the Weekend to End Women’s Cancer walk yet again. I wasn’t positive if I’d do it this year, but then there were a bunch of promotional materials with my face on it, stating I would be walking again, so I felt I should follow through and not disappoint all two of my fans (Hi, Mom and Dad). But this means I have the difficult challenge once more of raising some major dough.

So if you feel so inclined and haven’t decided which charity you feel like donating to this month, I’d really appreciate if you choose me. The money goes directly to ground-breaking breast cancer research and programs at the Princess Margaret Cancer Centre that help benefit people like me. We’re all in this together, right? So whip out your credit cards and show me the love.

If you’d like to donate, you can do so by clicking here. Thanks in advance to anyone who donates! (And for those of you who don’t, don’t expect a Christmas card from me this year.) (Just kidding, I don’t actually send Christmas cards, but it was the most neutral threat I could come up with on the spot.)

Hope everyone is having a lovely start to their summer. Go outside. It’s a beautiful day.

Cancer break

Lately I’m finding it very difficult to write about cancer stuff. I sit down at my computer, almost every day, feeling inspired to write a blog post or work on this “book” that I haven’t touched or really thought about in a long time. And then quickly, the motivation goes right out the door. I put on another episode of Scandal and instantly forget about whatever it was that I felt I needed to get down on paper (and by “paper” I mean “computer”… but that obviously sounds way less romantic and writer-ish).

I’m not sure why this has been happening, but I think much of it is due to the fact that I am majorly cancer’d out. I have not had one day where I haven’t had to think or speak about cancer in a very long time. It is exhausting thinking and talking about such heavy things all the time.

I keep trying to have a day where I don’t think about cancer once the entire day, but I have not come close to succeeding. People say that eventually the day comes where you realize, “Hey, I haven’t thought about cancer in a week!” Honestly, I can’t imagine that really happening. I might think about it less on certain days than others, but the idea of it being entirely absent from my thoughts just seems impossible right now. It is such a major part of my life. I didn’t invite it in, but there it is, and its presence is constant.

I read up on the “cancer news” all the time. It might not be the best idea, but I really can’t help it. This is my universe. You might work in marketing, or finance, and you probably keep track of what is going on in those sectors so you can stay up to date and feel in the loop. Well, it is the same for me. My world just happens to be a bit less flashy and a bit less “something to talk about around the water cooler.” But I like to keep informed. I want to know what’s going on. This is my life, and my health, after all.

Cancer is not just something I had, or something that is in the past. It has become a huge part of my life. I used to get emails from people asking me for movie or music recommendations. Now I get emails asking for advice about getting through chemo and radiation. This has become my new area of expertise. When people have a friend who is diagnosed, they send them to me. The cancer guru. The Dear Abby of planet cancer.

And really, I’m okay with it. I love helping people, however I can. I like reading about clinical trials and drug advancements and understanding a very complex world that until recently, I knew very little about. I am a passionate person and I become highly invested in whatever it is I am currently working on or learning about. And, as unfortunate as it may be, my “job” and my “work” has been cancer for over a year now. I am drawn to books and movies about cancer. I like talking to people about their own experiences with cancer. I suppose, like anyone, I want to feel like I belong. And as much as I want to just be a “normal” young woman, thinking about things like work, and social events, and all that regular-people stuff… that is not my life. It is part of my life, sure. But so is cancer. There it is, and there it will always be.

But all that to say that sometimes, I just need a break. Sometimes I am literally so tired from thinking about it and writing about it, living and breathing it, that I need to lie down and take a nap. Sometimes I just need to turn my brain off, from the research, the statistics, the drugs, the fear, and the reality. Sometimes I just need to turn on the TV and watch The Bachelor, which is pretty much the opposite of thinking about cancer. So that’s what I’m going to do. I’m going to watch The Bachelor premiere (and you should too, so we can talk about it) and I’m going to give myself a whole hour, free from cancer, free from the heavy stuff. You might need a break from your screaming baby. Or your beeping Blackberry. Or your cancer. Whatever it is… sometimes, we all just need a little break.

Oh lordy, now I really wish I had a Kit Kat.
Oh lordy, now I really wish I had a Kit Kat.

My fear of mice… and blogs

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.

 

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.

Hold on for one more day

This past Friday, I was once again a patron of the chemo ward. As you may or may not recall from previous posts, although I am technically done the chemotherapy part of my treatment, I still need to receive infusions every three weeks for one year. This is because I have an aggressive form of breast cancer, and there is an antibody that was created specifically to target this type of cancer. It has been referred to as “the most important advance in breast cancer therapy in 30 years.” Although it’s a bummer to have over a year of infusions, it’s a small price to pay to help increase the odds that I will be alive and kicking a few years from now. I am very grateful to be receiving this therapy, and to be part of a clinical trial involving another targeted drug. In conclusion, science is awesome.

My treatment this round went fairly smoothly. The only time I started to cry was when I was watching another young woman cry who was having trouble getting her IV started. I hate watching other people in pain. And despite the amazing nurses and staff at the hospital, the chemo ward can still be a fairly unsettling place to spend your time. Sometimes I see people who look as though they are about two steps from death’s door. I often feel like I don’t belong. Did someone make a mistake? Do I really have cancer? It still hits me like a punch in the gut sometimes. I don’t know if I will ever get used to being part of this world. I don’t think I want to get used to it.

I have been having some pretty severe muscle pains and stomach issues. But compared to how I usually feel right now during my chemo cycles, my energy is definitely about a million times better, as is my state of mind, so I’m very hopeful that the next year will not be as rough as the past several months have been. I am really praying that the worst is behind me.

Last week, my blog and I were featured on the website She Does The City. I am always very flattered every time someone contacts me asking if they can publish one of my posts or have me write something for them. When I first started this blog, I had no idea that it would spread the way it has or that it would actually create any type of impact. I have had many people write to me, telling me that I have helped them feel less alone while they are dealing with a cancer diagnosis, and these types of messages help give some sort of meaning to this absurd journey I have been on. Considering how isolated I have been, I have made so many connections with all sorts of people. Writing and having people urging me to write has truly been one of the only upshots of this experience. Something providing me with a purpose. So I suppose I should thank the internet, and modern day communication. And thank everyone who reads and reaches out to me and tells me I am doing something helpful during a very scary and very challenging time in my life.

Today I declared that I felt strong enough for some “cancer dancing” and danced around to  various cheesy songs until I felt that my limbs were about to fall off. I was bouncing around for about fifteen minutes, which is fifteen minutes longer than I could stand a few weeks ago. And I didn’t fall down, despite the pain in my legs. An insignificant event for most. A major accomplishment for little ol’ me.


That’s my sister with me in the video. What’s the point in embarrassing yourself if you can’t take someone else down with you? Also, the scarf on my head was forgotten by a friend at my house one night, accidentally. Moral of the story: if you leave something in my home, it will most likely end up on my head.

A few small steps

I just went for a walk to get a sub. It took about 20 minutes total and my legs are burning as if I just ran across the country. When I think back about how far I used to walk, I can’t even imagine it now, but hopefully I will be able to build up some strength again eventually since my current physical state is probably close to that of a 90 year-old woman. All in good time. For now, I’m pretty impressed that I made it there and back and am still alive to tell the tale. Gold star for me.

I have been watching a bunch of TV, which is a good sign, because when I am at my worst, I don’t even have enough energy to to watch television. Which shows how much chemo destroys your ability to do even the laziest possible activity. I’m all caught up on The Vampire Diaries after falling behind for a bit and losing track of which ancient vampire was trying to kill which modern-day hybrid werewolf. I am aware that I am definitely older than the target demographic for this show, but lately all I want to watch are teen shows. I’m sure a psychologist would say it’s some sort of regression/coping mechanism, to avoid all of the very grown-up stuff I have to deal with daily. But I don’t think so. I just love shows made for 14 year-old girls. I have also been watching a ton of Felicity on DVD (thanks, Nicole!) since I somehow missed out on watching it as an actual teen. Very riveting stuff.

Felicity's big haircut.. such a dramatic moment in TV history
Felicity’s big haircut.. such a dramatic moment in TV history

I wanted to reply to each of the comments on my last couple of posts because they were all so thoughtful, but I felt anything I could say would not do justice to the kind words you left for me. I couldn’t believe all the love I got after sharing the sad state I was in. Honestly, if you are feeling down about humans and their ability to show compassion for each other, I urge you to go back and read through all the comments people leave here. I am so lucky to have so much support coming at me.

I am starting to feel better again, in terms of my mood and body pains and fatigue. Unfortunately, I just can’t seem to really catch a break, and my eye troubles have not let up. In fact, today, I counted seven little styes on one of my eyelids. I’ve lost count of how many I have had now since last week. I am not sure why it is happening as it does not seem to be a common cancer thing. I also have permanent teary eyes so it is hard for me to see most of the time. I have walked into a few walls. In short, I look like a mess. I am seeing an ophthalmologist on Friday so we’ll see what that brings. If they try to put anything in my eye, you will likely hear my screams wherever you are. After everything I have been through, I still feel squeamish at the idea of anyone or anything getting near my eye.

So with the eye troubles, I believe I have had every part of my body have some sort of issue. But it’s okay guys, it could be worse. I mean, my head could fall off. There’s always that.

My mom gave me this button.
My mom gave me this button.

Chemo daze

I often refrain from writing anything during chemo weeks because I am miserable and have poison running through my veins and I am worried about what I might say that I then might regret later. But I am also feeling so antsy and bored and restless in my own skin and worried that if I don’t write, my brain will just turn to complete mush from spending my days lying flat in the bathtub while watching Real Housewives.

A lot of cancer patients experience a sort of brain fog throughout their treatment, and sometimes long after. This is a very real fear of mine. My brain is pretty important to me. I’ve worked hard on making it a useful one and it has served me quite well. I don’t like the idea of becoming distracted, forgetful, unfocused. Unable to complete a task as quickly as I once could have before. I want to keep my brain sharp. I don’t want to let it down. Unfortunately, I don’t have much choice over the matter. I am exhausted and my thoughts are cloudy, at best. The idea of reading a book or even watching an intelligent movie just seems impossible at this time. Even writing a coherent email is getting to be a bit difficult, as I’m sure a couple friends can attest to who received one over the past few days. Is it the steroids? The chemo? The sleep deprivation? The fact that I sit alone most of the day with nothing to entertain me except my weird, usually morbid thoughts? I guess it’s all enough to make anyone go a little crazy. I just really hope none of this is permanent.

The feeling of wasted time has really started to weigh heavily on me. I wish that I could be using this time to do something productive, something great and meaningful. But that’s not how this works. Cancer treatment isn’t a fun vacation. At least mine isn’t. Lately I’ve started torturing myself by looking at vacation destinations online. Warm places with beaches where people are happy and not bald and not pale and not peeling and not bleeding. Last night, after a terrible few hours of being sick and weak and crying so hard I started hyperventilating and nearly fainted on my toilet, I even resorted to watching youtube videos of rides at Disney World, trying to remember the feeling of being a happy kid who just wanted to meet Mickey Mouse and didn’t even know about the word cancer. The Dumbo ride was my favourite ride when I was a wee one. All it does is go round and round and that’s about it. Do you know how badly I want to be sitting in one of those stupid elephants, flying through the air right now? You have no idea.


A couple days ago, I was looking through all the comments from this blog. A lot of times, people add comments long after I’ve made a post, so I imagine most people who just read my current posts never see these comments. But I see them all. And reading through them made me quite happy, especially all the people who don’t know me but seem to be my biggest fans, or the people who tell me I am helping them through their own illness. So I guess I have been doing something sort of productive, even though it is hard to feel that way sometimes. So thank you for giving me that and for reading and supporting.

I got some great packages in the mail yesterday including beautiful handmade cards from a bunch of kind strangers, pins, magnets, a blanket, a book. Last week I got a lovely robe from a friend of a friend that she sewed just for me and I have worn it every day since. I love these things so much. I know I keep expressing it over and over, but I want people to know that it is all so appreciated, even when I am just a big sad sack of moodiness and gloom like I am right now. Although I managed to muster up the energy to go to my mail box today and all that was there was junk mail and disability-related papers, so that was a bit of a letdown. Hopefully this means I will get double presents tomorrow. I have become super greedy with my expectations of receiving tokens in the mail. I have no shame admitting it. I have no shame admitting anything right now. Like the fact that moments ago, I attempted to sneak a candy bar from the top shelf of my cupboard by almost climbing on a chair, and then realized I would likely stumble off the chair and smash my head on the table, and the idea of dying that way after everything I have been through just seemed a bit ridiculous, so I abandoned the plan altogether.

Hey, look at that, my brain still works.

UPDATE: My mom just sent me an actual video of me on the Dumbo ride from many moons ago. I am very impressed that my parents figured out how to make a movie file from our old Beta footage. Thanks guys!

Huffington, hairs, and hearts, oh my

Thanks for all the love from my last post. Sometimes before I click the “publish” button, I start to doubt myself and worry that I might come off sounding a bit too angry or a bit too sarcastic that day. And then, ultimately, a voice that says who gives a s— gets in my head, and I click the button and hope for the best. Turns out people tend to react quite positively when I am at my most blunt and honest. So I thank you for that, and consequently, I will try to not doubt myself in those moments where I am feeling particularly truthful.

Here is a summary of my past week, for those who are interested in that kind of thing.

  • Hung out with some nice lady friends where we talked non-cancer things and ate delicious pizza, the remainder of which I ate the next morning for breakfast (Judge me at your own risk.)
  • Blasted songs from The Lion King with my sister and then danced around to some P!nk song. Both bizarre choices, yet very therapeutic nonetheless
  • Had a nice visit with a friend from out of town and discovered we both have the same belief that cats are evil and trying to kill us
  • Watched Silver Linings Playbook. Two thumbs up
  • Got completely sucked into the American Idol auditions and all of the I’m an orphan with three children and I have cancer and lost my leg and my dog is blind and I’m deaf but I’m still singing anyway type of stories. I love it. I can’t help it
  • Started losing my eyebrow hairs and some lashes, although most are being stubborn and hanging in there for now, so I give them an A for effort
  • Realized showering when you’re bald is much easier than showering when you’re not bald. So that’s something
  • Got some back/spinal bone pain which is an unfortunate side effect of an injection I receive to give my white blood cells a boost. Nothing ventured, nothing gained
  • Had another heart echo test where I got to hear my heart beat very loudly, which I think had a pretty solid horror movie beat to it, if anyone needs me for any sound effects in the future
  • Was invited to publish my blogs on the Huffington Post, the first of which appeared a couple days ago, enabling thousands more people to suggest magical cures for my cancer
  • Had two doctor’s appointments which I had hoped would be helpful, but left me feeling more frustrated and stressed than I had been in a while
  • Got home after appointment #2 and sobbed and had a pity party of one and maybe punched a thing or two (No humans were harmed.)
  • Received this handmade card from a very kind person who doesn’t even know me. Turns out it was just the reminder I needed: