My dad, My hero

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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

Stuff

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Hi there! I don’t really know what this post is going to be about. Just stuff, I guess. So here’s some stuff:

If you’ve been following my Facebook page, you might know this first bit of news. I’ve started going out naked. Ok, no, not that kind of naked. But naked up top. On my head. I did it for the first time on Saturday. First to a street festival, then to see The Book of Mormon. I had initially told myself (during one of my many self-talks) that I wasn’t going to go out sans head cover for awhile still, until I really felt like I just looked like any other lady with short hair. But I’m an impatient person and I got tired of waiting.

At first, all I noticed was how cold the wind felt when it hit my head. Hair really accounts for a lot of one’s body warmth. After awhile, I kind of forgot about it, although it’s hard to ignore the stares that I get. My sister says they stare because they think I’m pretty, but I’m not sure I’m really sold on that. I think most people stare because they are trying to figure out what my “deal” is. And to be fair, I’d probably stare a bit too.

When I catch my reflection in a window or mirror, I can’t help but hear “Well, Sinead O’rebellion…” over and over in my head. If you have no idea what I’m talking about, you should probably watch more movies.


Sometimes, I look at other people and try to imagine what they’d look like with no hair. Or I see people with hair like mine, and I tell myself I look better than them. I realize that’s really terrible and I probably shouldn’t be admitting that out loud. But I do what I gotta do to cope. And if convincing myself that everyone else would look ugly bald is the ticket, then I’m going with it.

I’ve started taking photos to monitor my hair growth, because otherwise, I don’t believe it’s growing. Maybe these photos will help someone going through chemo, because I can’t tell you how many times I tried to find images of people’s post-chemo hair growth.

Today, bird's eye view.

Today, bird’s eye view.

Front view

Front view. I’m not really sure what colour my hair is at this point. Many people have grey hair post-chemo. I wouldn’t say mine is grey, but it’s definitely not the deep brown it once was. Kind of a mouse-y brown. But I imagine it is temporary.

You also might be interested to know that my body hair is returning in full-force. Just in time for summer, swimsuits, and short shorts. Yippee!

Today I had radiation #4. Only 21 more to go! Oy.

At this point, although it’s very early days, I still have no complaints besides some issues with mistakes in my schedule that hopefully will not keep happening, now that the staff know I am a force to be reckoned with. I’ve gotten pretty good at holding my breath with a tube in my mouth and a plug on my nose. Maybe after all of this, I can become a champion scuba diver. Does such a thing exist? I don’t know, but regardless, I don’t think that is my calling.

Today I also decided to pop into the lab to get my routine blood work done. My last couple tests had one level increase that prompted a new wave of panic in me, even though my doctors told me not to worry about it. But once I learned what this increase could possibly signify, it was hard for me to ignore it. So I was a bit hesitant to check my results this afternoon, but as mentioned previously, I am extremely impatient. So I held my breath and checked, and what do you know. Everything is back to normal. All green check marks. This is the first time I’ve seen everything be normal in awhile. And even though no one believed my previous results were anything to write home about, I still feel relieved. I like seeing those bright green check marks. Hello, I’m a straight A student. And patient. Anything less than a check mark is just insulting.

So, there you have it. Some stuff. More to come soon. You can count on it.

Radiation Update

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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.

Life moves pretty fast

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Haven’t updated in awhile, but don’t worry, I’m still here. I’ve just been trying to live my life a bit. I haven’t really been able to enjoy any “recovery” period, because I’ve been sick or struggling with side effects every time there was any sort of break between treatments. So having this time off before starting radiation has been a pretty nice change of pace. Never underestimate the body’s need to heal after being physically and psychologically tormented for months on end.

I’ve been saddled with a cold the past few days. It’s a bit of an annoyance to be “regular sick” during a break from being “cancer sick”, but that’s all it is. An annoyance. Once you’ve dealt with the Big C, a cold ain’t no thang. I would take a cold over cancer any day. Although, I’d also take neither, if I had the choice. But maybe that’s being too greedy.

The weather outside is strange today. One minute it is raining cats and dogs, then bright and sunny and cheerful, then grey and cloudy and windy, as it appears to be right now outside my window. It’s a bit unpredictable, which is precisely how my mood and general outlook on life is these days.

One minute, I am happy, full of energy, enjoying the health I seem to be regaining. The next, I’m exhausted, feeling betrayed by my body and resentful that it can’t do all the things it once could, with ease.

And at another moment, I am hopeful, thinking of the future, entertaining the notion that I could actually live a full life, filled with fun and laughter, with cancer being nothing more than a distant memory, a bizarre detour that I will never take again. And then I read of someone with my disease who didn’t make it, or I get a test result that plagues me with anxiety, and I feel suffocated with fear. Burdened by the reality that despite everything I am doing, you never know if it was enough, unless you learn that it was not. Scared of never getting old, of not being here, of the world going on without me. Bitter that I even have to think about these things. That they are a real possibility. And that as hard as I try to control it all, it is out of my hands.

I’m sure anyone with a cancer diagnosis can tell you that it is all incredibly confusing. You want to live your life the way you did before. You want to be normal. Like everyone else, you want to feel like you have all the time in the world. Yet there is this cloud that looms over you. The knowledge that, at any moment, you may be told your life expectancy has shrunk quite substantially. That you’ve run out of time. These are big thoughts for a young person to have to grapple with.

I am so envious of those who still maintain their innocence. Who take it for granted that there is still a long and winding road ahead of them. Who believe that nothing bad will ever happen to them. I think it’s a beautiful thing, to feel protected and safe like that. Ignorance truly is bliss, in many cases. I’m sure I felt that way at some point, the feeling that nothing could touch me. I think we all want to feel that way. It’s what gets us through. Unfortunately, that innocence is long gone for me. I see the world through different eyes now. Nothing looks the same, and I, most definitely, am not the same.

But maybe that’s not all bad. Maybe there is something to gain from a new perspective and from being smacked in the face with the harsh reality that none of us is invincible. That life is short, no matter how you slice it. We are all just floating around, trying to do the best we can, and having no clue as to how or when it all might end. We’re all trying to make sense out of life, attempting to find answers to the Big Questions.  I just hope I still have a lot of time left to figure it all out. Because I’m certainly not done yet.

Today is National Cancer Survivors Day. They say you are a survivor from the moment you receive a cancer diagnosis. So I guess I’ve been surviving for a bit now. Happy day to me.

Someone better get me a cake.

The thunder theory

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It’s pouring outside really hard right now and thundering loudly. Whenever it thunders, I think of how my mom used to tell me not to be scared, because it was the sound of my grandfather bowling in heaven. I would fall asleep, listening to the booming thunder, imagining my grandpa getting strike after strike. It is so wonderful to be a child, and believe that anything is possible. To be so easily comforted when you are scared. All you need is to hear a simple tale, a made up story, and the fear goes away, and you are safe again.

Yesterday, I did my radiation simulation. Since the radiation will be near my heart, I had to perform a breathing exercise to see if I could hold my breath long enough to move the heart out of the radiation field. This involved biting onto a plastic tube and having my nose plugged with a clip. While lying in the CT machine, I had to breathe in and hold my breath. The tube locks, and you are no longer able to breathe until it is released, or until you let go of the panic button.

At first I felt a bit claustrophobic and anxious, since I don’t like feeling confined to begin with, let alone with my ability to breathe stifled. But then I started imagining how I must look at that moment which amused me, and then it was over. It turns out I can hold my breath a lot longer than I thought, so I continued my streak as superstar cancer patient.

This isn’t me in the pic, but this is what it looks like

While lying down, the tech also gave me four tiny tattoos so that I can be lined up precisely with each treatment. I had read some people say they found this part painful, so I was a bit apprehensive. But it was nothing and I didn’t even flinch. Between that and my blood test via my port later that day, I had 5 needles, and I realized it didn’t even phase me. Something that used to petrify me is now just part of my normal routine.

Prior to my radiation training, while I was waiting in the reception area, I saw a little girl. Cute as a button, she looked to be around 7 years old. She was clutching her stuffed monkey. Her mom complimented my turban and asked the girl if she liked it, and she nodded bashfully in agreement. Your hair is still hanging on for now, the mom said to her daughter.

Shortly after, she went with her parents into one of the rooms that said “Caution: X-Ray Machines Inside” on the door. Since this was the area where you prepare for radiation treatments, I imagine that’s what she was doing. It didn’t take long before I heard the little girl crying and screaming from down the hall. Her mom left the room for a moment and paced the halls, clearly stressed, while her husband stayed with the girl. She continued to scream at the top of her lungs and I sat there helpless, listening, until my name was called.

My heart really ached for this girl and her parents. How confusing this must all be to a young child. I wish I could tell her a story like the thunder story. Give her some reason as to why this was all happening that makes it fun and makes all the pain go away. But cancer is not thunder. The threat is real. The pain is real. And the fear and confusion that comes with all of it is the same, whether you’re an old man, a 28 year old newlywed, or a 7 year old little girl.

Sometimes there are no magical answers. Sometimes it’s just that life is unfair, and some of us get dealt a really shitty hand, while others may not. I wish there was a better explanation than that, a story you could tell your children when they ask why bad things happen to good people. I wish things could be different.

But for now, I am comforted by the sound of the rain, and happy that I am alive to listen to the scary thunder.

Grandpa just got another strike.

 

So what happens now?

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It has been awhile since I’ve given everyone any type of real update, and since that was the initial point of this blog, I figure I should probably do that. You might be thinking, she’s done the scary part of chemo, we’ll never hear from her again! But don’t you fear, there is much more to share and the journey continues, one day at a time.

In terms of my surgery recovery, it has gone quite well. I always feel pretty satisfied when the doctors examine me and say that everything looks great, as if I had anything to do with it. I still suffer from body pains, mostly in my legs, which is assumed to be a residual effect from chemo. I worry that the pain will always be there. The price paid for living? Maybe.

I’ve been going for long walks, pushing through the aches, and I feel a bit stronger each day. I’ve also gotten pretty good at knowing my limits and being very blunt when I realize I need to go home and rest. After spending so much time alone, cooped up inside all winter, it can be a bit exhausting and overwhelming to be in social situations for long periods of time. That being said, I have loved spending some quality time with my friends the past couple weeks, catching up on their lives, and talking about non-cancery things. I have such good friends. I am lucky.

Hair update: There is not much to report on that front. I look like a newborn baby. Or a balding old man. Take your pick. There definitely has been some growth, but it’s very thin and sparse, and my scalp is still very much visible. I have read that the drug infusions I still receive can slow the hair growth process. As someone who used to cry because my hair was too thick, I now find myself using fancy volumizing shampoo that promises plump looking strands. The irony is not lost on me.

So, next steps. I have been hesitant to start really thinking or talking about the next phase of cancerland, because I really just want it to be over at this point. Now that I am feeling better and feel a bit of my “old self” creeping back in, I want to just ignore all the cancer stuff, erase it from my memory, pretend it never happened. I want to move on and get my life back. But my road is a long one, and it ain’t over till the fat lady sings. (Someone better hire a fat lady to sing to me when it’s actually over.)

In a few weeks, I will begin my radiation treatment. Many months ago, when I was writing about my frustration over having to make impossible decisions, this was one of them. To radiate, or not to radiate. That was the question. And I decided, since I’m having so much fun with this cancer stuff, why not throw that into the mix as well. Just kidding. The thought process was not nearly that simple, though I wish it was. The situation is incredibly complicated and I’m not going to describe all the particulars, for fear of unleashing the anxiety I am trying to squash surrounding the subject. The bottom line is, radiation is on the horizon.

Side effects may include the following: Skin burn. Blistering. Redness. Fatigue. Cosmetic defects. Superpowers.

These folks look so happy. Radiation must be a riot!

These folks look so happy. Radiation must be a riot!

This week, I will be undergoing my simulation where they will map out my treatment zone. This will involve getting several small, permanent tattoos on my chest. Never thought breast cancer would be the reason I would get a tattoo. But there you have it.

I also will soon be starting my hormone therapy, since my cancer is fueled by certain hormones. This will be in the form of a pill, which will be quite a nice change from the way I’ve become accustomed to receiving my drugs. There are all sorts of unpleasant side effects possible from this little pill. The list is long. The most common ones are: Hot flashes. Weight gain. Hair thinning. So I will be a fat, menopausal, bald man. It’s just all so glamorous, I can hardly stand it.

So, that’s essentially where I’m at. Mentally, I am in a bit of a strange place. I am feeling happy, and hopeful, and enjoying every second of my life, with a deep appreciation for every minute that I am allowed to feel good. Every step I can take, every hour that I’m not ill in bed, feels like some sort of small miracle. Yet it is during these happy moments that I am also filled with anxiety and fear. The fear of not knowing how long it will last, or what the future holds. Or what it doesn’t hold. The fear of my lifetime of happy moments being much shorter than everyone else’s lifetime of happy moments. I feel this need to hang on to every second. To pause time. To soak up everything and everyone, for fear it will all be taken away from me.

This is what it is to have had cancer. To have danced with death. To have lived through hell. This is what I’m stuck with now. The good, and the bad. So what do I do? I go on.

Life goes on.

Playing with my nephew. Happy moments.

Playing with my nephew. Happy moments.

To my mother

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Today is Mother’s Day, so it seems fitting to write about the woman I call Mom. (Actually, I call her “Mommy” because no one ever told me or my siblings that adults usually drop the extra “my“, until it was far too late for us to break that habit.)

This is my mom:

She still pretty much looks like this

I have always had a great relationship with my mom. I am lucky. Growing up, all my friends loved her and wanted to be around her. She was funny and kind of weird, in a good way. She was the “cool” mom. Of course, she embarrassed me from time to time, and still does. As all good mothers should.

My siblings and I are, and always have been, completely spoiled by my mother. There is no denying this. She will always drop whatever she is doing to help us with even the tiniest task. If we realize we are in need of something, she will likely show up with it the next day at our doorstep. She loves making us happy and doing things for us, even when we are all now (somewhat) capable adults. I have never known anyone as selfless as my mother, and I am fairly confident that most people who know her would agree with that statement.

The day I found out about the big fat C, I called my dad and told him to call my mom. I couldn’t stand to tell her myself, to give her that news that no parent expects to hear. To make her world fall apart, yet again, after dealing with so many health crises in my family over the past several years.

In typical mom fashion, she immediately started doing what she does best: taking care of me.

Throughout this whole ordeal, she has been there. Buying me a pretty notebook to bring to my appointments. Buying me an iPad upon realizing I needed way more than a notebook. Bringing us endless amounts of groceries and household supplies. Getting me fancy designer button-down pajamas to make it a little less depressing that I couldn’t raise my arms. Helping me get dressed. Holding my hair back while I threw up in the hospital. Sleeping on my couch after my surgery. Cooking dinner for us when we weren’t able to. Driving me all over the city. Listening to me agonize over decisions that could affect my survival. Rubbing my back and sitting by me while I cried in pain. And even today, bringing me some sort of futuristic cooling pillow to help with the hot flashes that keep me up all night.

My mom took me to one of my chemo treatments a few months ago for the first time. I didn’t think much about it because I had already been several times, and was used to the routine. It wasn’t until after that I thought to myself how strong my mother is. How hard it must be to sit and watch your daughter get hooked up to machines and witness as she slowly gets sick in front of your eyes. I think a lot of people would crumble in that situation. But not my mom. She got me settled, gave me lunch, refilled my water, talked when I wanted to and went silent when I didn’t. She did everything I needed her to do, putting all my needs ahead of hers. As she always has, for the past 28 years.

My mom is truly a wonder woman. It might take Mother’s Day for me to publicly express how wonderful she is. But I hope she knows that I am thankful for her each and every day, and always was, long before this cancer crept into our lives and gave us something new to tackle together.

I love you Mommy.