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Seeing the Light



Not your average tanning salon

Five weeks of daily radiation therapy began on December 4, 2012.  The impressive “Elekta” external beam radiation machine only rests on weekends and holidays, so to date I’ve had 17 of 25 treatments.  Here’s a recount of the events leading up to my first treatment, and of the treatment itself.

Setting the stage
The first day, dubbed "Day zero", was a preparatory session held in the radiation room.   At this inaugural session I became acquainted with Elekta, had a succession of slides (x-rays) taken by her, and spent about an hour lying around while the radiation therapists took measurements and shifted me this way and that to determine the required treatment position.  When receiving treatment for your chest wall and axillary, as is the case with me, you lie on your back with your treated arm raised up, back and to your side in a handy armrest.  Elekta then shines beams of light across your chest and the radiation therapists shift you around by tugging at the sheet upon which you are lying.  The goal here is to line the lights up with markers (tattoos, actually!) that were placed on your chest during a previous session.  Yes, I have 5 tattoos now, albeit pin pricks.  The administration of these reconfirmed what I already knew – I am not, nor will I ever be a tattoo person, and I have an all new respect for those of you who have them!  Sorry, back to the subject at hand.

Once properly centred on the bed with tattoos lined up, the therapists then check your treatment plan on the computer and rattle off a series of numbers corresponding to your appropriate horizontal and vertical position in relation to the machine.  It was very funny hearing this for the first time.  It sounded as though we were in a cockpit with the pilots confirming and reconfirming their equipments settings prior to take off.   “Ok, we’re looking for 7.7 left.”  “7.7 left…check.”  Then the bed would move in to position.  “Now 8 supe.”  “8 supe…yes, we have 8 supe.”  It is very comforting knowing that they are cross referencing and triple checking the set up for such a precise treatment.  A millimetre off and we could be zapping more of my good parts and less of my bad ones!  After what seemed like an eternity, one of them uttered “Ok, we’re good to go.  Don’t move.  See you in a bit.”  Then they scurried out of the room faster than field mice, stopping only to crank the volume on the CD player for my benefit.  You’ve got to love their sense of humour, blaring the Beach Boys while I settled in for my first tanning session of the season.  

My son playing with the controls on Elekta.  He watched my treatment on the monitor in the adjacent room - after they assured me that he could not override any controls!
Curtain Call
After the therapists had fled the room, there was a huge, awkward silence as I waited for Elekta to kick in to gear.  I was staring up at her searching for the source of the beams when I realized that that section had rotated out of my field of vision.  Elekta spins 360 degrees around you so that beams can be delivered from all possible angles.  Her starting position was actually behind my left shoulder, delivering a blast up through my back.  I found this very sneaky and underhanded!  I heard a whoosh of air, and it sounded like an airplane starting up (yes, there is a theme here).  Next a bunch of very high-tech mechanical noises, much what you would imagine a master computer to make, and then the actual noise generated during the beam was almost like a very subdued “rrrrrreeeee!”, the sound I always associated with “perimeter breached!”  Fitting, I suppose.  There were ten beams from this position, some just 3 seconds long, others what felt like about 10 seconds.  Then it rotated up slightly for the next dose, more noise, this time as though metal plates were sliding and reconfiguring, before the next set of beams, this time 6 in total.  Then up slightly more for the next round, then finally Elekta’s beam was directly facing my left underarm.  After these four angles she rotated all the way around to my right side, and at this point I could stare right at the beam generator as it was only about a foot away from my chest.  It looked extremely scientific and somewhat ominous <enter Dr. Who theme song, once again>.  This is when I decided to close my eyes.  Stupid, I know, as the beams were of course directed nowhere near my eyes, but it made me feel better about the whole experience. My treatment plan, as I would come to memorize, involved radiation from 7 different angles.  Each position delivered a minimum of 6 and a maximum of 15 shots of radiation, the majority being 10 or greater.   In total it took about 15 minutes to deliver the full treatment, after the initial 5-10 minute set up.  After the first day, I found I would be in and out of the centre in about 35 minutes.  

The exception to this was of course if there were any unforeseen delays during treatment.  Like the time the therapists forgot to move the opposing arm rest fully out of Elekta's path.  Nothing quite like lying underneath large, super-precise, computer-guided radiation equipment only to have it hit something on the way down!  The first time it happened, I let out a yelp and a "we've hit something!"  As they were watching from the monitor, they were on it - the machine shut down, I heard scrambling in the distance and then running footsteps and they were in the room in seconds, terribly apologetic, and saying how they really need to remember to push that out of the way.  Indeed!  The second time it happened I laughed really hard.  Now I check it myself before we start each session.

Side Effect Bios
Although the session lasted about an hour that first day, I was at the Cancer Centre for almost 3 hours.  The rest of that time was spent meeting the radiation team, touring the facility and discussing side effects.  I learned that I would not be radioactive.  I also learned that Radiation side effects could not be compared with those of chemotherapy.  Unlike chemo, which is a systemic treatment, radiation is local and thus the side effects are limited to the treatment site.  The most prevalent side effect is dryness and reddening of the skin, much like a sun burn, with skin changes typically starting 2-3 weeks after treatment begins.  To combat this, moisturizing is key, so one must apply lotion twice a day every day once treatment begins.  In Canada, there are only two recommended lotions, Glaxal Base and Boiron Calendula Cream, the latter of which has been discontinued (but may still be out there – I haven’t found it).  I was told that Calendula diaper cream, which I had in abundance, was not an appropriate substitute!  I started applying Glaxal Base liberally prior to treatment, and after about 15 treatments I starting noticing a slight darkening of the skin, but no dryness.  I believe my darker complexion has put me at an advantage over my paler counterparts.  I am told however that skin will be at its worst 2 weeks post treatment, so I still have a little ways to go. 

The only other side effect worth mentioning is fatigue.  Not the knock-you-off-your-socks fatigue I experienced with chemo, but a subtler but more predictable fatigue which is far easier to manage.  Although naps do serve a purpose (though napping parent is an oxymoron), the recommended treatment for fatigue is actually moderate exercise, as in a brisk, daily, 20-minute walk.  I haven’t done these yet, tsk tsk I know, but I am so un-Canadian and shiver looking at the cold, much less enjoy being out in it!  I’m hoping to rekindle my love of cross-country skiing by introducing it to my kids, but I’m not there just yet.  Instead, I’ve decided to sign up for the one kind of exercise I love doing – dance.  Just need to figure out if it will be more of the same (Belly), a flash from my past (Swing) a new recent love (Bollywood – see Blessings Report!), or uncharted waters (Burlesque).  Expending energy to increase energy levels is a well-known secret (and that goes for you non-cancer people too!).

Critic’s Review
It may be a bit premature to make the call, but my guess is that the people who advised me that radiation would be the easiest of my three treatments were right.   What they didn't tell me was how stealth-like it would be.  You feel absolutely no sensation during or after treatment, and you leave the building doubting if you were actually treated at all.  You can drive yourself home, go about your daily activities and pretty much lead a normal life, if you can get a handle on the fatigue.  The effects of chemo, however, linger long after its course ends, and the increasing brain fog or “chemo brain” is unsettling.  I try not to think about it, which is actually very easy to do, given the nature of this particular beast <wink>.  Here’s my most recent illustration:

As I was about to settle down in to my computer nook, I noticed my Kleenex box was missing.  Upstairs I went to fetch another.  I opened the cupboard and saw we were out, so set out to retrieve one from the powder room cupboard.  On the way there I passed through the kitchen and saw the coffee pot smirking at me, beckoning for a second helping.  I eagerly grabbed a mug & opened the fridge to get some milk when I spotted some pomegranate seeds.  Those will be yummy right about now.  I grabbed a small bowl and gave myself a generous helping of seeds.  I poured some milk in a mug and stuck it in the microwave to take off the chill.  Off to the powder room for the Kleenex box I went, and on passing the kitchen on my way back had a strange feeling.  Beeeeeep.  Ah, the microwave.  Retrieved the mug and poured my coffee, added a dash of coconut palm sugar and was ready to return to the basement.  Or was I?  What's that little blue bowl doing out?  Oh, the pomegranate seeds!  Stared vacantly in the direction of the front door, wondering…wondering if I had everything; right, the Kleenex box, the reason for this little adventure.  Kleenex box, coffee mug and pomegranate seeds in hand, I triumphantly descended to the basement and settled in to my computer nook.  Reached down to store away the box and oh look, there was the old box in its rightful place.  Chemo brain strikes again.

Now quickly, before I forget… 

Blessings Report

Children’s Christmas concerts
What is more precious than a bunch of 5-year-olds singing Christmas carols while sporting garland crowns and jingling sleigh bells?

Babies learning to crawl
My little dear decided that Christmas week was as good a time as any to get moving.  Perhaps she knew big brother & sister would be home for two weeks?  In any case, picture a wind-up baby doll (the kind we had when we were kids), perfectly poised in crawl position and moving methodically while not really going anywhere.  Priceless.

Bollywood Birthday bliss
I convinced 12 of my closest friends to take a Bollywood dance lesson to mark my 40th birthday.  They were such great sports and fascinated me with their display of creative choreography.  I would post an action shot of the group here but as I would like to celebrate my 41st birthday, this will have to suffice.


No denying these roots
Queen’s Diamond Jubilee Medal
Though not normally one for formal accolades, I was humbled to learn that my workplace had nominated me for this most prestigious medal, meant to honour significant contributions and achievements by Canadians.  I was awarded this medal for reaching out to others about my experience with cancer. What’s more, I received my medal during a formal ceremony in December in the presence of none other than HRM The Queen – well, a nice portrait of her!

Three cheers for Ellen, winner of the Avery...I mean, Diamond Jubilee Medal!
Kindred Spirits
And finally, I feel blessed to be connected to an ever-increasing number of individuals who’ve reached out to me this year amidst their own battles with cancer.  Thank you for your courage, your humour, your kinship and your light.  My love goes out to all of you. 

Seeing the light

For the first time since diagnosis I found myself asking the kind of questions that I’d never felt necessary to ask; that I’d felt were unanswerable and that would only make me feel worse.  I’m of course talking about the “what if I have a recurrence?”, “what if my primary cancer has spread”, and most importantly “what will become of my kids if I don’t survive?”  This is a scary path to embark on, with many dips and turns and deep ditches on either side.  It is a road which changes your perspective just two steps in, forever leaving a lasting impression.  I suddenly found myself crossing in to new territory.  Fear.  Doubt.  Worry.  Anger.  Nothing that is out of the ordinary for a cancer patient, I suppose, but terribly out of the ordinary for this cancer patient.  I spent a good part of December walking these strange lands, trying to understand what was not to be understood.  When I surfaced, I came out with a better understanding of myself and the realization that the answer to all of these questions was the same.  Faith.  Fear, doubt, worry, anger - there is no emotion that Faith cannot overcome.  And it is through our Faith that we can let go of negative emotions and let in the light that was meant to shine through all of us. 

Faith manifests itself in many forms, some spiritual, some religious, but always true to us.  It is unmistakable, and if you have ever doubted if you’ve experienced it, then you likely haven’t – but that is not to say you won’t.  The sheer will to find Faith may start out as a fleeting flash of light during a time of despair, but soon grows to a strong, radiant beam.   

Perhaps the most vivid example of Faith I’ve ever seen was during an interview I saw just days after the Newtown tragedy.  The mother of one of the fallen angels was asked how she felt towards the killer.  This was her response:

"I felt bad for him, because I can't even imagine the state of mind that someone is in to do something like that...that's such a dark and evil and awful place to be, and if anyone's in a position like that I just can't even imagine how hard that would be, and I feel so sad that that's where he was." 

I watched that interview three times, each time in disbelief – how could a grieving mother be so strong, so forgiving, so compassionate?  Then I realized that it was her Faith that kept her strong, that let in light when she was surrounded by only darkness.  It shone through her brighter than any star. 
 
Today, as we start a New Year, I challenge you to let go of any feelings of fear, anger and resentment you may have in your own life, and instead let in the light.  If you’re unsure how to accomplish this, I bid you this advice, and wish you all happiness, health and light for the New Year. 

When you walk to the edge of all the light you have
and take that first step into the darkness of the unknown,
you must believe that one of two things will happen:
There will be something solid for you to stand upon,
or, you will be taught how to fly

~Patrick Overton
Wings of the Morning by Edward Robert Hughes




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