YACC – These Are My Scars

Intentional Magic (Fog Cancer)

June 12, 2017 These are My ScarsLeave a comment

Intentional magic describes the alchemy that happens when you bring together a group of random people (who happen to be between 18-40) that share a common experience. That the common experience is living through or with cancer. You’d never know that was it, at least by looking at us. Young adults with cancer making lemonade from our lemons. Cancer is different for young adults.

When you are a young adult that has been diagnosed with cancer, it changes your life profoundly, in ways you don’t even know yet, and won’t know how far the ripples reach until you are looking over the wreckage of your life. It changes everything. It changes who you are. It changes who you will become. Nothing is the same as it was and nothing will be what you thought or planned for. Now add in that most of the patients in the waiting room are your parents age or older (yes I had medical staff talk to my mother instead of me and have had to correct them). That the majority of funding for support, care and treatment is focused on 45+ or 18 and under. That you will likely never get insurance, may never have children or will suffer from reproductive difficulties, are at risk for secondary cancers, and feel isolated and alone in an experience that few will share at lease at this age.

Now put these people all together and its magic.

As a young adult with cancer and a rare one at that, I can attest to the feelings of isolation and loneliness, confusion, frustration, grief, anger and sadness at losing the trajectory I had planned for my life. I have mourned my fertility and financial security. I have feared for my life, and sometimes still do. I know scanxiety, and loss. So much loss, my own and of others. Too many to count. It physically hurts to count, the beautiful vibrant lives this community has lost. I know, and so do those at Young Adult Cancer Canada. That’s why they are wizards. They create this intentional magic every year and every year its a homecoming for me. Every year we gather as a group to learn, laugh, cry, dance, and remember.

Its magic!

It has been about a week since I came home from my trip to Newfoundland for YACC’s Fog Cancer conference and I have say it has been a challenge getting back into the swing of things. I normally expect to experience withdrawal, but this year it seems even harder. I don’t know why, maybe its because I just turned 39 and I fear my time in this incredible community is winding down, or maybe I over extended myself, or maybe I fear that one day it will be me being remembered up on Signal Hill. Whatever way, life hasn’t been as vibrant and comfortable as it was a week ago. I feel a little more alone, a little more isolated, a little more mired in my own crap. I miss the cocoon of just getting it.

Amanda

February 24, 2017 These are My ScarsLeave a comment

Words escape me and I can’t quite express what I’m feeling in the way I want to. Week 5 of our MBSR should be up, but I can’t bring myself to write the post yet. You see, I just found out today that a friend and fierce cancer warrior passed away last night. So if you can bare with me, that post will go up in a few days time.

Losing friends hurts.

I met Amanda about six years ago at a Young Adult Cancer Canada (YACC) conference. It was shortly after I had found out that I was terminal/incurable. I had come to conference for strength in facing what would likely be my last year. I had no idea what would transpire at conference. Previous meetings were fun and offered helpful tips dealing with some of the issues faced by young adults (YA’s) like fertility, loss of identity, isolation, relationships, disintrajectorization*, and so many more. Most importantly, they offered a chance to be with others that just got it.

Most at conference at that time were dealing with their first diagnosis, or were recently out of treatment, there weren’t too many of us that were lifers, so I was surprised to hear about an informal meeting for metastatic participants. I jumped at the chance to attend! That’s where I met Amanda. She like me was one of the 10 who attended that meeting. It was a cathartic experience. It was raw and painful, we cried, swore and shared our most intimate fears, it was beautiful.

It always amazes me how open we can be with others, baring secrets that we don’t share with our most trusted friends and loved ones. One may wonder why that is? Honestly in my experience at that time, I didn’t want my loved ones to know how scared shitless I really was. I didn’t want to admit that I might die. I wanted to shelter and protect my family and loved ones from suffering, both mine and theirs. It was sense felt by many in that room, including Amanda.

In the months following that meeting, we lost three friends. Amanda was not one of them despite being riddled with cancer. It was everywhere, her bones, liver, lungs, and other major organs. She was a walking miracle.

Again we lost friends, but she endured.

We would go on to attend more conferences together. She attended some in a wheelchair and others rocking stilettos, but her spirit was always indomitable. She loved her daughter with ferocity and her whole heart, everyone knew that because she told us with pride. Her personality was big and bold, you always knew where you stood because she didn’t mince words and didn’t hold back. She lived her life with every fiber of her soul. She unknowlingly was my against all odds beacon of hope. screen-shot-2017-02-24-at-4-43-48-pm

Today my shores are a little dimmer.

*Disintrajectorization was a word coined by Travis Gobeil in 2005 and is a term that describes what happens to your life when you get cancer as a YA. Your life is disintrajectorized off its current path and onto another totally different path.

Ups and Downs

January 31, 2013June 16, 2016 These are My ScarsLeave a comment

Life has been quite a rollercoaster in the last few months, hence my notable absence from the Blog, writing, and working on These Are My Scars. November opened with an incredible opportunity to participate in a patient panel for Lung Cancer Canada. On November 1 LLC presented a national survey on the opinions of Canadians and lung cancer to kick off lung cancer awareness month (Yes November is Lung Cancer Awareness month). That evening I was asked to be keynote speaker at LCC’S second annual gala. I can’t tell you how honoured and humbled I am to have been asked to be part of these amazing events. It is amazing how sharing your story can touch so many people. From there, I went directly to Young Adult Cancer Canada’s annual conference. Four days of connecting and re-connecting with amazing young adults from all across Canada. I can’t even begin to tell you how wonderful it is to spend time with others who have shared an experience like yours, YACC makes that happen and I am so thankful to them for it!

The second week of November brought me to Ottawa to celebrate the marriage of our very own Naomi and the love of her life Palmer. It was such a privilege to be part of their union and Naomi looked radiant and just beamed all day. Also around this time, I became caregiver to my mom who fell ill with a mystery illness. I did my best (all be it a feeble attempt) in taking care of well, everything! We went to test after test and waited on pins and needles for a diagnosis. Because it involved her breathing and lung function I was immediately anxious and terrified of what it could be. Thankfully in December we got a diagnosis and she is being successfully treated and well on her way back to health!

At the end of November, I was asked to speak and present at a patient conference in Halifax. What a wonderful opportunity to share my story and perhaps help patients navigate though their diagnosis. Halifax is a great city, despite presenting, I had enough time to explore, eat, and even catch up with a friend, you can’t ask for better.

The first week of December rolled in quietly, but soon after, I was invited to Montreal to present my experiences with Xalcori (the ALK inhibitor I’m on) to a group at Pfizer’s annual general meeting. I have worked with Pfizer at a few events and felt it was a valuable opportunity to share my perspectives as a patient. The response was incredible. I never thought that by sharing my story I would be sharing hope, but all too often, those who work with lung cancer patients or in lung cancer research only see the bad or lose patience, so I think it is refreshing and inspiring when you can give people a glimmer of hope.

Things calmed down a bit until the holiday where I got sick, but then something I dreaded happened. Six weeks after getting married, our dear Naomi passed away. Her spirit and inspiration are one of the things that made me start These Are My Scars, and I can’t imagine where to start without her, but I’m inspired by her life, if she wanted something, she did everything in her power to achieve it. She led a wonderful life and I am so proud to have been called her friend. When I thought it couldn’t get worse, I found out that our friend Cori had passed away two days after Naomi. Cori was truly special, she wasn’t a part of the larger cancer community, but was a personal friend who was the first person to volunteer to share her story and be part of These Are My Scars. I remember when I first met her, she didn’t want to share her story, she wasn’t ready, but less than a year later she took a chance and bravely shared with us. As I write this, I still cannot believe my dear friends are gone. I miss them profoundly! As the new year is upon us, I am filled with renewed inspiration and focus, I know both Naomi and Cori would want These Are My Scars to succeed, and they are a testament to how powerful sharing our journeys are. Now more than ever, I believe that we need to share our stories and our scars, to connect with each other. For some of us it is healing, for others it helps them to feel like part of a larger community. I do it because of both those reasons, but mostly I do it because I don’t want the next person to be diagnosed to feel hopeless or isolated.

Wishing you all a blessed 2013.