The end of a not-so-great era

Today I had my LAST treatment. Halle-friggin-lujah.

I rang the bell and celebrated with my friends and family and drank a huge milkshake. It was quite the fun party. I got lots of nice presents. Everyone knows that my favourite part about cancer is the presents. That’s the only thing I like about it, really. But it’s a pretty sweet perk.

Dad hugs post-bell-ringing
Dad hugs post-bell-ringing

 

I have all these confusing, mixed-up emotions. I’m scared of saying bye to all the nurses. I feel like I still need them. I’m scared of saying bye to my drugs. I worry what could happen to me once they’re out of my system. I’m scared of getting too comfortable, and ending up back in that chemo room. It’s hard to say it’s my last treatment without adding on “here’s hoping!” But I really want to believe it’s over. I want this to be the end. Please, please, please, let it be.

I am so over the whole cancer thing. Time for a new thing.

Here’s hoping.

 

Frequently asked questions: The next chapter

I think it’s time for another round of FAQ’s, don’t you? Here we go!

Your hair looks so good! Are you going to keep it short?

If I had a dollar for every person who has told me I should keep my hair this short… well, I wouldn’t be rich, but I could at least buy a nice sweater or something. I appreciate the compliments and everyone’s fascination with my hair growth process. However, I have no intention of keeping my current boy-cut. Having your hair fall out is totally traumatic. Having your hair grow back is totally awesome. I want it to keep growing. I have frequent dreams where my hair is suddenly long again. I look at old photos constantly and lament the loss of my long hair. So although this short “style” (if you can call it a style) is extremely low-maintenance, and perhaps one day I’ll go back to it… it’s still not me. It’s not my choice. And it still reminds me of cancer.

So everything’s good now, right? You feel good?

I never know how to answer this one. Yes, I feel pretty good, in comparison to how I felt when I couldn’t walk up a flight of stairs or raise my arms or sit up without assistance. It’s hard to complain about anything when I know what it really is to not feel well. But if you want to know the truth, I’m not just “fine” and “all better.” I still suffer from fatigue all the time. I often hit a wall in the late afternoon where I feel like I need to lie down and nap. I try not to plan more than one “exhausting activity” (such as grocery shopping) per day, because sometimes I can’t keep up. I have side effects from my drugs. Sporadic bone or joint pain. Headaches. Pelvic pain. Hot flashes. The constant drip of my nose. Tightness around my implant where I received radiation. Lots of little reminders, scattered here and there. So yes, I’m feeling pretty great, and thankful every day for my health. But it’s not perfect. And it probably won’t be for a long time.

You’re all done with treatment now, right?

Oh my gosh, you guys! Don’t you read this blog? I am totally NOT done with treatment. Every three weeks, I continue to check-in at chemo daycare and wait around 1-2 hours to begin my treatment. My port is then accessed with a needle and hooked up to an IV. It’s injected with saline, which leaves a gross taste in my mouth. Then I receive my medication for the next two hours. Then I go home and feel tired. I have been doing this for a year. And I am ALMOST done. In fact, Jan 31st should be my last trip into Chemoland, if you want to mark it in your calendars. That phase will be over, but I will still be taking my Tamoxifen each and every night and dealing with its thrilling and varied side effects (see above) for a looooong time. But it’s all a small price to pay for the chance to live, in my opinion.

Did you ever end up catching that mouse in your house?

No! The little guy is super sneaky and exceedingly intelligent. We have had a few sightings and have set up a variety of traps. Somehow, he is not falling for any of it. He knows what’s up. So for the time being, he is living with us. Really, he’s an ideal houseguest, as he mostly keeps to himself and stays out of sight and doesn’t ask for anything. But unfortunately, unlike with our other houseguests, our goal is still to murder him. Sorry, mouse. It’s a cruel world out there. As I have learned time and time again, sometimes life just ain’t fair.

Last week pre-treatment in the waiting room. The christmas tree was pink and adorned with cupcakes.
Last week pre-treatment in the waiting room. The christmas tree was pink and adorned with cupcakes and candy. Now that’s my kind of tree. Merry Christmas!

Today, I am alive

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.

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)

 

My dad, My hero

I have been meaning to write this post for awhile, but it seemed appropriate to wait until Father’s Day to write about my dad. And now that the weekend has arrived, I feel I must stick to my deadline, as any decent writer should.

My dad has been instrumental in helping me navigate through the crazy world of cancer. This is in large part due to the fact that he’s a great father, and I am lucky. But it’s a bit more complicated than just that.

When my dad was a teenager, he was diagnosed with Ewing’s Sarcoma – a rare type of bone cancer. Even after receiving radiation, the prognosis was not great for 5-year survival. Quite a lot for a young boy and his family to have to deal with.

For those who have met my dad and can do some basic math, I’m sure you’ve figured out that he survived those five years, and then some. And lucky for me, despite the odds, he was able to produce three good-looking, intelligent, witty, and modest young children.

Growing up, I never understood too much about my dad’s cancer, or how it might have affected his life many years after. Although I’m sure it was always a constant presence in his mind, it wasn’t really for us. It was something we knew had been part of his childhood, and that he had conquered, and that was all I really needed to know. Cancer was part of our family’s history, not present. Something occasionally referred to in the odd anecdote.

But five years ago, that changed.

In 2008, my dad was diagnosed with breast cancer. Did you know males can get breast cancer too? Well, now you do.

So as you can see, this breast cancer beast found its way into my family before it decided to take up residence in my own body.

My dad underwent chemotherapy (the same grueling combo that I was so lucky to experience) and surgery. He got sick, he lost his hair. You know how the story goes.

This was a difficult time for my family. As you can imagine, I was scared and confused. I didn’t understand much about cancer at that time, or breast cancer specifically. I didn’t like knowing that my dad was hurting, and that I couldn’t do anything about it. And since parents like to protect their children, there was a lot that they did not share with us. Bits and pieces of information would be communicated, but not everything. My parents always put on a brave face. Everything was going to be okay. Because it had to be okay.

After dealing with that whole ordeal, my dad was struck a third time with the Big C. This time, it decided to take a trip to his thyroid, which was consequently removed, along with the cancer cells. And now, of course, we hope that third time’s a charm. And that’s it. (Seriously cancer, leave my dad the F alone. I think you’ve made your point. Whatever that is.)

So my dad has had a pretty rough go, you might say. And despite being knocked down three times, he’s still alive and kicking. He does yoga, he meditates, he draws, he travels. He kicks ass. And as you might have guessed, he has become quite the role model for me, now more than ever.

When we discovered my cancer, it was quite the blow to my family. Seriously, hadn’t cancer already caused enough chaos in our home? Could we not get a break from it, of more than a few years at the very least? It seemed pretty unfair. And frankly, it still does. My family is awesome. We are pretty good people. We don’t really deserve to have our lives constantly threatened. But here we are. You could boil it down to bad genes. Or bad luck. It doesn’t really matter. This is the hand we were dealt, and that’s just the way life goes.

My dad and I have certainly bonded, in a most unexpected way. He is one of the only people close to me who can say “I know exactly how you feel” and I know he really means it. We now share this strange connection, this common history, that most fathers and daughters don’t have, and probably could not understand. He has accompanied me to almost all of my appointments with my oncologist, helping me understand my treatment and figure out the important questions to ask. He has watched me cry out in pain, and he has felt pain for me – as any parent would feel for their child, but also as a cancer survivor feels for one who has recently joined the club no one wants to be a part of.

Now that I know what it is to face cancer, and to deal with all of its ugliness, I see my dad in a whole new way. It is almost impossible for me to imagine going through this three times. Once has been quite enough for me. I am truly in awe of my father’s strength and determination, and his ability to keep going every day, after all he has been through.

Sometimes, I really lose faith in my “battle”. I read other blogs, I focus on statistics and numbers, and I get consumed by all the people who don’t make it, and I begin to wonder if anyone really does. And then I remind myself; I know someone who has survived. I know someone who beat the odds. And he just happens to share my DNA. DNA that may have possibly made me more prone to cancer. But may also make me more prone to surviving it.

I love you, Dad.

Me and my dad, two days prior to my breast cancer diagnosis
Me and my dad, two days prior to my breast cancer diagnosis

Radiation Update

Dear Diary,

Today I had my first radiation treatment.

I actually wasn’t anxious at all going into it. I think that my family and friends were more nervous about it than I was. Again I am quite astounded at how much I have changed since finding that lump back in September. I am slightly hardened, in a way. Acclimated to all of these treatments, and to the hospital walls. This isn’t necessarily a good thing, because I never want to get used to this as my life. But it does help me face each new challenge. Mentally, I do feel a lot stronger than I did before any of this started. Braver, I guess. None of it by choice, but nonetheless, a new me has certainly emerged out of all this mess.

As I waited for my treatment to begin, I chatted with an elderly man who has a tumor somewhere near his rib. He had had radiation previously, so he shared his experience with me. His doctors are considering chemotherapy as part of his treatment, so he asked how I fared with that. And there we sat, swapping war stories. Me and this 80-something year old man. Another cancer friend. You should know you’re still a very pretty girl, he said. I liked him. I hope he doesn’t have to do chemo.

I had two very nice radiation therapists bring me into my treatment room and set me up, making sure I was nicely lined up with the machine, thanks to my four little chest tattoos. Then they inserted my breathing tube. It was a bit more difficult than the simulation, due to the congestion I still have from my cold. But prior to beginning, one of the therapists remarked that it was quite impressive how long I had held my breath in the sim, so I knew I had to live up to my reputation and not screw it up. And I didn’t. I sailed right through it, and then it was over.

My new best friends for the next couple months. Cream, lotion, ointment, and aloe. Radiation 101.

Honestly, I was smiling through most of my treatment. I don’t even know why. There are lots of bad and scary things that can happen from radiation. Not usually immediate, but further down the line. But I guess I just felt happy to not be in chemo. To not be in pain. And to be kicking the shit out of my cancer, which has clearly become one of my favourite pastimes.

I met up with my sister after. Since she’s a medical student, she is often near the hospitals, which is convenient for me. I got some lunch, then we walked to the health food store, where I got a few items I needed, and some I definitely didn’t but couldn’t resist (chocolate quinoa crunchies, my new fave). And then I went home.

Radiation day complete. One down. Twenty-four more to go.

The main side effect from radiation is supposed to be fatigue. I can see how it would get quite tiring, even without the effects of the actual treatment. Just going to the hospital every day, back and forth, takes a lot out of you. I already don’t really feel like going tomorrow, and I’m just beginning. But I will push through it, and hope it doesn’t get too rough. I don’t want to anticipate anything bad happening. Maybe it will. Maybe it won’t.

For now, I am smiling.

Post-radiation. Feeling my new hair that's slowly growing in. So soft, like a newborn baby. A newborn me.
Post-radiation. Feeling my new hair that’s slowly growing in. So soft, like a newborn baby. A newborn me.

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.