Our ALK+ Family Summit July 31 – August 1

I spent the week-end enjoying our ALK+ Family Summit, and learning about the latest in research for our particular kind of rare lung cancer. Don’t let the term “rare” fool you: we had over 700 people register for our summit. I enjoyed the hospitality of Jo-Ann and Craig Smith for the first day: together we watched the Summit in their awesome space and enjoyed great conversation while they served terrific food and drinks.

I opted to participate in the Summit from home on Sunday since I was leading a “Breakout Room”, which meant that I talked about The White Ribbon Project five times in a row, to five different groups of people who came into the breakout room for 20 minutes each session. It was a great was to spend a chunk of the day, interacting with people I knew, meeting people for the first time, and talking about one of my favourite subjects: lung cancer advocacy!

The White Ribbon Project is an inclusive, unbranded, international grassroots movement, changing public perceptions of lung cancer. As I said in my presentations, we are looking for regional ambassadors – champions – who will host Ribbon Builds and distribute Ribbons. If you are interested in learning more about The White Ribbon Project, please check out our new recently launched website. You can also connect with us through email or social media.

I filled the slide deck with pictures of some amazing people who are part of The White Ribbon Project, many of whom are part of our ALK community, some of whom participated in the breakout room today. In case you’re interested, I’ve put copies of most of th slides below. Heidi and Pierre could not be part of the presentation today, but generously pre-recorded a five-minute video which was part of the slide deck, but not included here.

A big thank you to everyone who is in the photo’s and/or took photo’s! Special shout-out to Heidi & Pierre, Chris, Anne, Michelle, Bonnie, Rhonda and Dave – The White Ribbon Project #team.

www.thewhiteribbonproject.org

Health and Advocacy Update

First the good news: I haven’t had a scan yet, but based on my perception, the chemo seems to be working! I’m breathing better, coughing less and swallowing a little better. Good news! So very grateful for another extension on life!

I had my third round of chemo on Monday January 11, and brought in one of the amazing white ribbons that Heidi and Pierre Onda from Colorado have been generously making and sending out with love to whoever asks for one. This is an inclusive, unbranded campaign to raise lung cancer awareness, and it goes by the hashtag #TheWhiteRibbonProject. It has a growing presence on social media and at cancer centers across North America.

This exciting campaign is growing, and here’s a video (generously made by Katie Brown of LUNGevity) which gives you a small taste of the number of lung cancer advocates, oncologists, researchers and others who have keenly participated. If you look closely, you may recognise awesome Eastern Ontario advocate Kim MacIntosh near the end, and me with the chemo receptionist at The Ottawa Hospital. That first video got stuffed full of photo’s, so Katie started a second one, and then a third one for Canada, and she keeps adding photo’s as we send them to her! Everyone is welcome to participate!

There I go again: I was supposed to be giving you a health update but got distracted by some of the amazing advocacy work that is going on!

Healthwise, so far I have had several really rough days each three week cycle. I spoke with a nurse to get insight on how to better manage the symptoms. I’ll plan and prepare, and this will help me better cope next cycle. I’ll also keep managing my mindset. I’m grateful for Chris Draft who calls and encourages. He is a tremendous advocacy trainer, and offers helpful wisdom like, “We control what we can control”. He is a strong supporter of so many health advocates worldwide, and we are grateful.

Exciting news: my barium swallow study is scheduled for this afternoon (i.e. Tuesday the 19th)! Ordered back in November, I’m very hopeful that this will answer questions about what is happening when I swallow, and give us good information to help me avoid getting aspiration pneumonia again. I also hope to be able to eat more kinds of foods! I have eaten a LOT of soup since the summer!

I’m back from the hospital, and the study went well. I felt a little nervous beforehand, but very relaxed this afternoon and grateful for the support from my support team of friends and also The Ottawa Hospital team. Emilie, the Speech-Language Pathologist was very kind and knowledgeable. She got me to sample a variety of textures of food and drink with barium added in, then the x-ray machine tracked what happened inside. I didn’t choke on anything. We gained new information which informed us about which further tests need to be ordered. I’m being referred to more specialists, and that support is very welcome. I feel privileged to live so close and be connected to the tremendous resources at The Ottawa Hospital.

Here is my amazing Speech-Language Therapist who ran the test. She was eager to take a picture in support of lung cancer awareness, and very supportive of this person affected by lung cancer. I’m very grateful for our big lung cancer team!

Emilie, The Ottawa Hospital Speech-Language Pathologist