9:00pm. Sunday December 14th 2014
How I’m feeling: Good. Adrenaline is still pumping through me hard after watching my dance crew (Army Of Sass) put on a stellar performance last night. All night mixed feelings of excitement, happiness and sadness (because of my dance and performance training hiatus) overwhelmed me. And then when photos of me dancing/performing and of different stages through this cancer fight were blown up huge on the screens right before the group performed a piece to Beyonce’s “Survivor”, I completely lost it. Wow. My voice is gone (from cheering for my dance mates all night), so no video today. Instead, below is a peek in to what my experience with the first week of radiation therapy has been like:
Wednesday was my very first radiation session. Actually, I lied. I thought that it was going to be – but when I arrived, I learned that it was just going to be a practice round. No actual zapping.
As soon as I arrived, the woman at the reception desk on the radiation floor of Princess Margaret Hospital asked me if I had received a green card yet – and the answer was no. She then took my hospital and health card and printed a green card off for me and then preceded with demonstrating to me how to sign myself in each time I come in for a radiation session. She was very nice and hospitable. As I walked through the halls, I passed by many who were there for radiation therapy – at various stages of their treatment plan, with different cases and different cancers. It felt like the first day of school or work or when I started chemotherapy. I was the new kid and everyone knew it. I then realized that this was really going to be my reality over the next 4 weeks.
I signed in, and then had a seat in the waiting room. I did what I normally do when waiting for an appointment: did some reading and (occasionally) chit chatted with loved ones via my phone. For the most part, I like to use the time beforehand to enter the mental state I feel I may need to be in before each treatment/procedure/appointment. While I’m quiet and extremely focused, having company with me helps a lot. Just for the physical moral love and support. I don’t know what I’d do without it. Thankfully, my mother has been with me at practically every appointment. I don’t know what I’d do without her.
I get called in to a room, and a technician asks me to take every thing off up top and put a gown on with the opening in the front.
I then headed in to Unit #7, and was asked to lay down on a machine. The only thing that was between me and the hard surface was a piece of paper, a head rest and leg rest that was placed underneath my calves. Once I was laying down, the technician strapped my legs to the machine, asked me to place my hands to the side and to stay extremely still.
The other technician in the room opened up my gown which exposed my entire chest and stomach – and they both looked for the dot tattoos that were placed on me a few weeks ago. “Can you find them? I’ve been looking for them over the past little while” I asked and chuckled. I then learned that the dots have a hint of a blue sparkle under the lights. The technicians instructed me to relax and to allow them to move me around to align my body to the machine properly. After some big movements as well as some small nudges (which barely seem like they are making a difference) I was instructed to inhale, exhale, inhale and then hold my breath a few times. The technicians communicated a bunch of numbers to one another and adjusted me a few more times.
Apparently, every single millimetre matters. The radiation happens when my breath is held because when one inhales and exhales, the body moves – and the radiation zapping needs to be extremely precise so that as little unnecessary damage is done as possible.
A nose plug was then put on my nose and a mouthpiece attached to a tube was inserted in to my mouth. I’m handed a panic button of which I was instructed to keep my thumb on throughout the entire procedure – and then let go of if I felt panicked and couldn’t breathe.
The technicians left to head on over to another room where all of their controls are. I hear over the mic, “Stay extremely still, Carolyn. The machine will move around you but will not touch you”. I do so – I remain extremely still and the only thing that’s moving is my chest as I inhale and exhale deeply. I hear my breath through the tube – Darth Vadar-like.
“We’re going to start after this breath, Carolyn”
*inhales and exhales*
“Deep breath in”
“Deep breath in”
*Tube blocks air way*
At this point, I have to hold my breath for 40 to 45 seconds.
I hear all of these sounds: click, zoop, zap – and different parts of the machine rotate around me as if I’m an orbit. After what seems like too long I hear through the mic:
I let out deep exhale that has been just waiting to escape my lips.
This is done a few times before the technicians look at the images. I then hear and feel the machine move around beneath me and later learn that it’s the machine being re-adjusted before the real deal happens.
Holding your breath for 45 seconds may not sound so difficult to do – try it yourself. In fact, when I went in for the radiation mapping and prep, doing so was a piece of cake.
Now, consider adding factors like these:
- You are not just holding your breath, the device that’s in your mouth blocks the airway a few seconds after your inhale.
- You have laser beams zapping away at you. Pew pew pew!
- All of these sounds are coming from the machine you’re laying on top of.
- There are large parts of the machine rotating around you.
- You’re being radiated on. Quite the controversial procedure.
- Oh, and you have cancer
I almost let go of the panic button and as my state of panic peaked, I closed my eyes tightly and then opened them. After about half a second, I thought to myself “Nahhh…..”
A few seconds later I heard the prompt “Breathe normally” The release of my exhale wasn’t as explosive as the last. In fact, I was able to release it calmly and slowly.
Thursday December 11: Radiation Day #1 (The Real Deal)
While I almost let go of the panic button, I didn’t. With each round of breath holding, I tried different things. I’m still figuring out what works for me.
- Do I keep my eyes open? Closed?
- What do I look at?
- Do I press my tongue to the roof of my mouth when I hold my breath? Or just let it rest at the bottom of my mouth?
- What do I think about?
- Do I listen to all of the sounds in the room?
- Do I count the seconds that go by?
I notice that this photograph is on the ceiling. I suppose it’s there to help patients relax?
With the last two breath holds, I learned that thinking about the first and last time I went diving in Mexico does me good. It really helped calm me. I thought to myself “Sweet! I’ll go with that”
Friday December 12: Radiation Day #2
My appointment was in the evening. And so, I made a point to fill my day up of nothing short of incredible-ness. Although, I think I’ve always done this – but I’ve learned to make sure of it every.single.day throughout this journey of mine. Really, life is too short. We all preach it. And I certainly did before all of this – but now, I know it. I feel it. And so I’ve decided to change the way I live every day. It’s changed the way that I solve problems, love, communicate, connect, explore, learn and create.
When you are faced with not knowing if you are going to wake up from one day to the next, when the chance of no longer being able to hug your loved ones becomes very real and when you are faced with making decisions that are a matter of life and death – it changes you. I’ve allowed it to change me. All other decisions you make and life challenges all of the sudden impact you differently. There is a shift in perspective, compassion, purpose and understanding in the way life works.
Whoops I’ve diverged. Ok, back to it.
The waiting room was quite empty when I had arrived. After I was handed my gown, I headed on in to the changeroom. And I thought to myself:
“I can’t believe I have 3+ more weeks of this. Every single day”
“Wow. What if this doesn’t work? ”
“I don’t know if I can handle any more set backs and another round of treatment”
“I’m sick and tired of being sick. I’m over it. It’s getting old”
“I can’t believe I’ve been doing this for almost a year – as of mid-March 2015”
“I hate this place”
“I can’t get used to this”
etc. etc. etc.
I looked at myself in the mirror, teared up and then told myself that I have to stop these thoughts – for now at least. I knew that it wouldn’t be good to go in to a session with these types of thoughts zipping through my mind.
I panicked for the first few breath holds. In fact, the few I had to do before the re-adjustment and before the actual zapping were really challenging. I had to stop myself from trembling a bit as I held my breath.
As I heard the machine re-adjust, I felt really frustrated with myself. I then decided to really shake off any of those worrisome thoughts I had earlier as I had a feeling that they may have been contributing to the difficult time I was having with my breath and focus. I replaced those thoughts with the visualization of me under water and moving with calming oceanic currents and I made an active effort to not let my mind get sucked in to “what ifs” and any thoughts focused on the past.
The rest of the session went relatively well. It was really challenging and I considered letting go of the panic button – but I didn’t. I seem to be learning more and more about myself and what works and doesn’t work with each radiation therapy session. I just have to keep that going.
Tomorrow’s session is at 8:30am. Wish me luck 🙂