Sunday, October 21, 2012

Radiation & Cancer Lodge Living Reflection

My poor poor skin has taken a beating. A burning beating, that is. And it is now itchy, red, crispy, burnt and sore. It feels like months that I lived in Vancouver during the weeks at the cancer lodge... but now FINALLY radiation is complete. My final 28th round was last Thursday and I am SO glad it is over. My skin has had enough. I am tired. My arm is sore. The implant is a bit warped and annoying. And my chest feels tight and leathery.

So not awesome.

But I know I had to do this rads business and I needed to give it everything to minimize my risk. I can only hope that if there were any minuscule cancer cells camping out that they were zapped and killed off for good. I also like to think that even though 10% of my lung was in the line of radiation that I will not have any issues with this in the years to come. Likewise with the risks of this treatment causing a cancer to occur down the road, I hope and wish that I will be spared this kind of b/s down the line.

Radiation treatment every day was exhausting, monotonous and a tiny bit depressing. On that note, I must say, I fail to understand why the person who invented the word 'treatment' put the word "TREAT" in there. There is nothing 'treat-like' about cancer 'treat'ment! There are no freebies, prizes or bon-bons when you are stuck to an IV during chemo or  laying under the crazy radiation machine hoping to God that you have made the right decision. They should seriously re-frame the term into something more appropriate. Like, 'medicate-ment' or 'prescribe-ment' even 'endure-ment'.

(rant off)

So yes, I endured radiation 'treat'ment, which has, as expected, caused me quite a bit of crankiness and fatigue. Staying at the Jean C. Barber Cancer Lodge was exhausting too mostly because I didn't sleep well the majority of nights. But I thankfully met two new friends in the last few weeks that I was there. One of them was my roommate for 10 days of my stay. Her name is Arvon, she is 42 and is currently facing her second round of an acute (fancy name) type of leukemia.

Arvon and I became pretty comfortable with each other fairly soon after we were paired together. I was so grateful for her company. She is someone who I feel like I have known all my life and I was so thankful for the friendship that we formed.

When Arvon finally got a bed at Vancouver General to do her stem cell transplant I was so happy for her. Not because of the daunting procedures and drugs that she would have to face but because she had a deadline to get in by a certain date so she would have enough time to get strong enough in order to go to the Barbara Streisand concert on October 29. I love that her goal was always to be able to make it to that concert. Her tenacity and courage through everything she has already had to go through inspired me beyond words.

Once Arvon was checked into the Leukemia ward at VGH I was solo at the lodge for a week. It was lonely. But it was also nice to have space and quiet time to be with my thoughts (also dangerous too because I spent a lot of those nights crying myself to sleep like a little baby...ha! No surprise there.)

Not surprisingly, it didn't take me long to feel a little isolated again at the lodge without a buddy to hang with and so I filled my days with visits with friends. And when I had a few hours to kill before my daily treatment I was able to go visit Arvon a few times at the hospital. She is a total rock star cancer fighter. Her bravery amazed me and her kind friendly spirit warmed my heart.

A second friend I made was Ashleigh... She is roughly 3 years out from her Hodgkin's lymphoma diagnosis. She is young like me and volunteers at the cancer lodge once a week at the front desk. It was refreshing to talk with another person who struggled with post-treatment trauma and the emotional ups and downs of finding a new identity after cancer. On a few occasions I grabbed a chair and sat with her behind the front desk and we shared cancer stories. We even met for lunch and tea a few times which was nice. Hearing her express her fears, anxieties and worries post treatment made me feel normal. It was sobering to hear someone else tell it like it is without sugar coating and skewing the truth.

I met a few other people at the lodge who I didn't exchange info with but who I will forever wonder about. My first roommate, the french woman who was so sick from her chemo drugs. A sweet elderly couple from Prince George who I often chatted with at the weekly healing touch and relaxation sessions. A very nice woman named Natalie from Haida Gwaii who I enjoyed chatting with about nutrition. An 40-something adventure-driven guy named Wayne from the Yukon who lived on a lake... He and I got to talking one morning and I ended up learning that his girlfriend is a breast cancer survivor who was diagnosed at age 29 and is now 45. (This gave me some hope)

All of the people I met I wish I could know that they will be cured someday. Seeing them feel worse over the weeks, losing weight, losing hair, or just feeling frustrated that they couldn't be in the comfort of their own home... it broke my heart and made me angry all at the same time. Angry that we were all dealing with cancer. Sad that some of them had a poor prognosis. We were all there trying to get better. Trying to improve our chances. Just trying to get into remission so we could get back home and recover. Getting to know them I was realizing that it was actually good for me to be there and with them... "my kind" as I have been calling it. Sometimes it just helps to be around other cancer peeps.

As much as being away from home was difficult and I missed my own space and seeing Mike... It was convenient to live kitty-corner from the Cancer Agency. I didn't have to worry about travel arrangements, being in some one's space, bus schedules or racing to catch the ferry. I was also able to meet up with a lot of friends, old co-workers and pals that I haven't seen in a very long time. These social distractions from cancer-life made the days and weeks fly by. And although I had very mixed feelings about the accommodation in that first week, having made some new friends during my stay, I am thankful I 'settled' for bunking in at the lodge. However strange an experience it was, it was what I was meant to do.

A few other things to report before I head for snuggle times:

  • This can be categorized under 'Too Much Info' for some, but I am happy to say that my monthly girly times returned a few weeks ago. I have never been more excited to have my period! 
  • I have been attending some very cool classes at Inspire Health which are transforming things in my life in a very positive way.
  • I have a counselor at the Cancer Agency. I didn't realize, first of all, that I NEEDED this... and also that this was available (for FREE!) and am now taking full advantage of it on an as-needed basis.
  • Mike and I are soon going to be taking a much needed mini-holiday.
  • Shortly after we committed to that much needed holiday Mike (along with several others) was laid off from his job at Wakefield Homes. The timing could not have been more shitty... but we agreed that our sanity absolutely would be at stake if we didn't take off for an anti-cancer vacation. The super responsible side of me really dislikes going into more debt for the break, but sometimes it is a must! And besides, I could use this kind of freedom-therapy at this point in my recovery and Mike needs this break just as much as I do!
  • My hair continues to grow. Still very ashy and grey though, so I have been wearing my wigs 'Bennett' and 'Harlow' because they make me feel more like my 29 years of age and less like the female version of Benjamin Button. 
  • I am to start the estrogen blocking drug Tamoxifen on November 1. I am not stoked about this in any way and am actually in the midst of researching other avenues because the side-effects of this 5-year long drug ride are anything but comforting. But who knows, it may be the only shot.
  • I have several more appointments, tests and procedures coming up including: plastic surgeon follow-up and nipple reconstruction consult, a follow-up ultra-sound on my 'good' boob, a pelvic ultra-sound, bone scan and...*wait for it* ....colonoscopy. Woohoo - Fun times. Ohhh 2012 would just not be complete without adding on a few extra BONUS exams on like these!
Fun times indeed ;)


  1. Sooo happy we're both done! Mine is still itchy, sensitive and red as well. My oncologist told me that it will probably even get worse once I start chemo because your skin gets really dry and stuff.

    You know I think it's great that you were able to make the best out of your stay at the radiation treatment lodge. You really are a smart/strong person Ash!

    I'll keep reading your blog to find out about your experience with Tamoxifen. Will you do the injections as well? I hope the side effects won't be too bad for you! *fingers crossed*

    We'll keep in touch! XX

    1. Thanks for your message Ciel! We are both done! Wahooo....

      I will totally be here for you during your chemo... if you ever have any questions just ask! I will let you know how Tamoxifen goes... so far I am most worried about my moods... I am already so wishy washy these days.

      I dont plan on doing the injections along with it. Are you referring to the ovary suppression harpoon Goserlerin/Zoladex??? Will you be having it during chemo? Heads up that it makes you hot flash caaaraaaaazy!!

      Hugs xo

  2. Ciel's comment of praise deserves a repeat: "You really are a smart/strong person, Ash!"

  3. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?



    1. Hi Cameron... couldn't see an email on your profile?