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.
Well, that bump was bigger than expected! Sadly the radiation in October did not do the cancer-crushing work we were hoping it would. My recovery wasn’t going as well as anticipated, and tests showed I had pneumonia as well as cancer growth. My oncologist and I discussed chemotherapy, which is the only treatment option available to me currently.
My oncologist and I both reached out to some Canadian lung cancer researchers to investigate whether there might be a clinical trial suitable for me available in Canada, either now or in the near future. I was disappointed but not surprised to learn that there is nothing on the horizon.
There are some possibilities in the US, so I applied for the “ALK Second Opinion Program”, which is funded by some generous people affected by the same kind of lung cancer that is affecting me (ALK). I learned within a couple of hours that my application was accepted, so the program will pay for me to have an online appointment with one of the top ALK researchers in the world. I have met most of the doctors on their list, and it is a tough decision because they are not only brilliant but also very kind. I plan to go with the Boston team because, although Dr. Alice Shaw is not spending much time seeing patients there now, they may have a clinical trial appropriate for me in future, and Boston is much easier to travel to than Nashville or Colorado. My oncologist has very kindly offered to participate in the online appointment with me, and one of my dear ALK sisters has offered to walk with me through this process. I’m very grateful for the support.
I had my first chemo of 2020 on Monday November 30. It hit pretty hard, and I had to go to emergency with a fever which turned out to be another round of pneumonia. Antibiotics helped a lot, and I’m feeling much better. I’m still very tired, coughing a fair bit, and having problems swallowing (since August). Thankfully there is soup, and I’m very grateful for friends who have brought so much soup!! It’s great to have different kinds of soup that I don’t typically make, and it’s so nice to not have to make it myself!
My next chemo is Monday December 21, which will get me through the holidays, as my awesome oncologist noted. The following one is scheduled for January 11. Apart from the blood tests on the Fridays before, I’m hoping to not need any additional hospital visits! 😀
This is quite a change from the targeted therapy lifestyle, which tends to be much more smooth sailing, with fewer appointments and blood tests. I’m so very grateful for my many years of reasonably good health while living with stage four lung cancer. I never expected to live seven years past my diagnosis, and now I have much more hope than I did at diagnosis. I am hopeful for new treatment options. I hope that the chemo I’m on now will work more effectively with fewer side effects than the older harsher chemo I took in 2013-14. I hope researchers will develop new treatment options that will be available just when I need them. That has been my roller coaster adventure ride with lung cancer these seven years, and I hope for more! Oh yes I do!!
More than that, I hope for more research to extend the lives of many more people affected by lung cancer, because there are so many of us and we all want life and need hope. So if you know any lung cancer researchers, please thank them for the good work they are doing and encourage them to keep up the good work with diligence and urgency. So many of us are counting on them!
I’ve worked hard to keep doing light weights, stretching and walking through the Fall. My daily step count has fallen below my usual 9000-10,000, but I haven’t given up hope!
So grateful for friends, for so many delicious soups (and other yummy things!), and for so many calls and messages. This has really sustained me and helped keep me buoyed up.
I don’t talk about my faith a lot, and I would never want anyone to feel like I’m pushing Christianity on anyone. I want to be clear, please stop reading if you are feeling offended. My relationship with God means so much to me, and keeps me going. God is good all the time, and I am grateful for the love of God poured out through Jesus, and the ever-present comfort of the Holy Spirit. It’s the love of Jesus that motivates my advocacy, and any good I do is because of God working through me.
Six years and seven weeks ago, like many other parents of young children in the schoolyard that year, I had a cold with a cough which persisted.
Six years ago I was constantly coughing, and beginning to realize that the inhaler the doctor prescribed wasn’t working. I coughed so much I had to step down from the choir I had been rehearsing with to sing Messiah.
Six years ago we had started to suspect something was terribly wrong. I could hardly speak a sentence without coughing. When faced with a flight of stairs, I wondered if I could climb them.
We knew something was wrong, but had no idea it could be lung cancer. I started undergoing a myriad of tests, and when we finally got my diagnosis that December, it seemed impossible. When I learned I had advanced lung cancer I had no hope.
I did not know what to expect, but I never expected this: that six years later I am living life!
I had no idea I would still be alive six years later, never imagined I could be this alive and vibrant.
I never dreamed I would live this long.
Shortly after my diagnosis I read the research on Crizotinib, the first new targeted therapy pill my oncologist mentioned. I rejoiced that so many of the people on Crizotinib were still alive six months later. Six months seemed like such a long time, such a lot of opportunity to live, such a great gift for someone with lung cancer… and here I am, six years later.
Six years: chemo, Crizotinib, Clinical Trial: Ceritinib, Alectinib, Lorlatinib. Cutting edge new research keeping me alive these years. Every time the cancer outsmarted a med, a new treatment has been available – typically just in the nick of time – so very grateful! Research is giving me so many days to celebrate, gifts of countless moments, memories, milestones.
My children were 6, 10 and 12 when I was diagnosed. They have had a Mom right with them as they’ve grown these six years. My daughter is now 12, my sons 16 and 18. My oldest started University this Fall (Electrical Engineering and Physics, still living at home!). I’m still in the picture. I still get to talk with them, cook for them, hug them, encourage them, love them.
“Grateful” is only the beginning of how immensely thankful I am to be alive and living so well six years later. I thank God for lung cancer research and the difference it makes.