The thunder theory

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.

Tree And Storm 2 by George Hodan
Tree And Storm 2 by George Hodan
Advertisements

So what happens now?

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

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.

Sunny days

This past winter was a particularly miserable one for the city of Toronto, where I live. Cold, windy, grey, and what appeared to be never-ending. I often felt as though the weather outside was mimicking my own misery and sickness. That spring would come as I started to emerge from the darkness. I realize it sounds very narcissistic, to believe that I somehow can control the weather. But sure enough, this past week as I started to heal from my latest surgery and as my mood began to lift, the sun came out, the tree buds bloomed, and everyone seemed to let out a collective sigh of relief. We made it through the worst.

I made it through the worst.

I’ve been having quite a lot of, dare I say, fun the past few days. Friday I had my treatment, which ran just about as smoothly as that kind of thing can. Service in the chemo ward was top-notch, and I received multiple offers of pillows and apple juice. It was also fairly quiet, and no one around me appeared to be dying, which is always a nice bonus. Afterward, my mom and I met my sister and we got some frozen yogurt and went to the park and popped into a few boutiques. Then in the evening, the hubs and I went for a delicious dinner, where we sat on a patio, and relished the moment.  By the end of the day, I don’t think I even remembered that I had just had drugs injected into a vein near my neck a few hours earlier. Score.

Yesterday, I continued on my quest to be a normal young person in the city. After having a nice visit with my aunt, uncle, and little cousin (I am devouring my aunt’s butterscotch banana bread right now!) I had a nice walk through my neighbourhood and around the park and surrounding area. My feet ached from wearing terrible sandals. A regular person kind of ache. Not a chemo ache. There is a very, very big difference, and I was glad for it. Then at night, we went to see Iron Man 3.

Yesterday, getting ready for my date with Robert Downey (and my husband).
Yesterday, getting ready for my date with Robert Downey (and my husband).

I don’t know how to properly convey how excited I was to do something as simple as see a big blockbuster movie on its opening weekend. It has been a long time since I was able to do something like that. To be able to say I feel like doing this thing that many other people will be doing at the same time and then actually do it. It was amazing. Climbing the stairs up the large theatre was a bit of a challenge, but that was the only time I felt limited. I wore my wig, and from what I can tell, blended right in with the masses. Just another 20-something out on date night, watching a movie, wearing ridiculous 3D glasses. I enjoyed every second of it. I thought about how far special effects have come, and how watching a movie is one of my greatest simple pleasures. And I did not think about cancer. Explosions, and fast cars, and Gwyneth Paltrow’s abs. But not cancer.

Things are still difficult for me. My muscle and joint pain makes me feel as though I am a brittle old lady. When I sit down on the ground, it takes some serious problem solving to get myself back up. I am waking up each day, waiting for it to subside, but so far the pain is sticking around. I am also still wrestling with the emotional trauma from everything I have experienced. Sometimes it is these very moments, when I’m feeling happy and alive, that the fear creeps in. What if this doesn’t last too long? What if this is just a tease? What if I have a limited amount of happy, good days left, and then it all goes to shit? It is so hard to push these thoughts aside and it’s something I will have to work on. I don’t expect to have it all figured out anytime soon. But I’m trying.

I have my next phase of treatment approaching. I will go into more detail as it gets closer, but for now I don’t want to think about it for any longer than it takes me to type this sentence. I want to be young, and I want to play in the sun. So I’m going to go do that.

See ya.