Why I work hard as a lung cancer advocate:

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. 

#ResearchMatters 

The difference a team can make!

Before my diagnosis in the Fall of 2013, I didn’t give much thought to the lung cancer team here in Ottawa. Now I am very thankful for them and glad to be getting to know the folks at The Ottawa Hospital Cancer Centre (TOHCC), and others who’ve been working hard for people affected by lung cancer. There are many I’ve never met, and I don’t have enough pictures – couldn’t even find one of my own oncologist – but here are a few:

Above is Evening of Hope, November 24, 2016, organized by the phenomenal Louise and her dedicated team. It is one of the terrific annual lung cancer fundraising events in Ottawa. Top Left is Elizabeth, who blogged at this link, and changed the face of lung cancer. Her mom, Robyn, is pictured several photo’s below, from last month’s 2K.

Beverly (founding Ottawa support group member) with Chris Draft, NFL Legend & Legendary Lung Cancer Advocate, Sept. 2017
Our wonderful social worker, Diane, with some support group founding members (founded October 2017) – Jill, Andrea, Laurie, Peg, Kayla, Evening of Hope, November 2017
What a difference friends & supporters make! This creative friend surprised us with this lungs-shaped cake at the Cancer Centre on World Lung Cancer Day August 2018!
Anna, TOHCC researcher & prize-winning cyclist / fundraiser, with generous friends
Kayla (founding support group member) and Kayla’s Fight Club have done tremendous work
Michelle, a wonderful advocate and fundraiser, at a CCSN event on Parliament Hill in 2018
Dr. Paul Wheatley-Price, TOH oncologist and President of Lung Cancer Canada, ran the marathon as part of the same week-end event as our 2K, for for Canadians affected by lung cancer. Here he is giving a pep talk! We are grateful for the community of support! #RunOttawa2019 #LungCancerStrong #LungCancerTeamCanada
Paul with Robyn, lovely mother of Elizabeth, at our pre-2K rally #RunOttawa2019

Almost a year ago we held our first ever Lung Cancer Hope Table in our Cancer Centre. It was a special event for World Lung Cancer Day, which is August 1. You can read about that day and what led up to it here.

The first Hope Table was supported by many more people than are shown here!

That one Day of Hope made such a difference that we decided to hold them every month. This is what our terrific team has been doing ever since. Every month we co-ordinate with the cancer centre to have a table set out for us. We keep our supply of information from Lung Cancer Canada, the International Association for the Study of Lung Cancer (IASLC), and other organizations conveniently stored in a generous oncologist’s office at the Cancer Centre. Most importantly, every month we show up at the Cancer Centre to show love and share hope.

Some “Co-conspirators of Hope”, Support Group teammates staffing our table, June 2019.

What an honour to be there to brighten a person’s day! Our team makes a difference for lung cancer patients and caregivers, and everyone who stops by. People who work or volunteer at the Cancer Centre need hope and love just as much as the next person, maybe more. I can’t tell you how many people say things like, “This was just what I needed!” But they don’t need words to communicate the difference we make: we can see it clearly on their faces and in their body language. We are doing important work at the Cancer Centre.

Spring 2019 at TOHCC

This is a great way to tell people we have a support group and invite them to join us! We enjoy spending time together!

Ottawa support group, Fall 2018
Some support group members, Spring 2019

Our lung cancer support group has grown closer together because of these outreach tables. Our group has also grown larger! We have met so many wonderful people because we chose to invest a few hours sharing hope and love at the cancer centre. I want to give a big shout out to our support group for the difference we made at our Cancer Centre this year! Thank you for your great work! Thank you Andrea, for your faithful leadership! You kept us organized, and have established and maintained good relationships with people of our cancer centre!

The Cancer Centre has been very supportive. A big shout out to The Ottawa Hospital Cancer Centre! They supply the tables and have even started paying for our parking! They now post information about our group, with dates indicating when our next table will be. We have worked at building relationships at the cancer centre and earned trust. The oncologists have started telling their patients about us. It is encouraging and honouring that they do this, but it’s much bigger than that.

The amazing Jody, TOHCC
Two dedicated members of our TOH Cancer Centre Clinical Trials Team

When we partner together, then we can truly start making a difference for people affected by lung cancer. There is no limit to what we can do when people who work in differing ways in the lung cancer community partner effectively together. When doctors and social workers and caregivers and nurses and survivors and researchers and fundraisers and communicators and advocates … all work together, we can make a world of good for people affected by lung cancer.

One person can make a big difference by sitting at a Hope table, by getting to know people at their cancer centre, by forming relationships and becoming a team together, and who knows what kind of difference that team can make!

Get to know your lung cancer community! Ask questions! Reach out!

#StrongerTogether #BetterTogether #Team

#LungCancerStrong

So many great stories to tell, pictures to share, and blog posts yet to write! I’m feeling fantastic on my current med. I’m enjoying riding my bike. I’ve travelled three of the past five week-ends (all lung cancer related). I have loads of energy and I’m so very grateful.

#ResearchMatters #Hope #Grateful

On Saturday May 25, a fantastic group of lung cancer survivors, patients and friends are walking the 2K. It’s Ottawa Race Week-end, and we are joining in the celebration! “Lung Cancer Team Canada” is walking on behalf of all Canadians affected by lung cancer. We know that not everyone can walk, and we are walking to celebrate the fact that we can and to represent all who can’t.

If you can, we’d love for you join us! If you want to donate, we welcome that too. We are raising funds for Lung Cancer Canada, Canada’s only charitable organization devoted solely to Lung Cancer.

What I want most is for you to know that more research means more survivors and better survivorship! Please join in and celebrate the difference that lung cancer research makes. Cheer loudly for us, because we are lung cancer survivors, and we are strong!

We are also very grateful for our caring and hard-working #lungcancer team at The Ottawa Hospital. Dr. Paul Wheatley-Price, one of our terrific lung oncologists, is running the marathon for all Canadians affected by lung cancer on Sunday morning. Please join our group of lung cancer patients and survivors in watching for him and cheering loudly for him!!

Dr. Paul Wheatley-Price is pictured here with a select group of powerful, brilliant and beautiful advocates at a 2018 event on Parliament Hill.

On May 25, “Lung Cancer Team Canada” is walking 2K for all Canadians affected by lung cancer. We are #LungCancerStrong and we hope you will join us! Please walk with us, donate, and cheer for us! We welcome your support!!

Join us or donate by clicking here at this link!

We’re getting tee shirts! If you want one, please let me know straight away! They are purple with a green butterfly and white ribbon, and they say #LungCancerStrong in bold white letters.

Celebrating Life!

What a lovely Easter! If you follow me on facebook, you may have seen that I had beautiful times with church family and good friends on Sunday. Today I enjoyed a fun walk with my daughter in the morning, then my middle son tuned up my bike and we went cycling together – not super fast nor far, but I enjoyed the wind in my hair and the sun on my face. We went about 7km, which is a little over 4 miles, and it felt good to be out, moving this body and spending time with my son! This evening I let my oldest help with the taxes! 🙂

It was really good to celebrate the resurrection by being with people who I love and who love me, and being active in the beautiful spring weather! So much to be thankful for! So much joy! I can’t tell you how thankful we are for these meds which are holding back the cancer. We hope they will work for a long time!

#MoreResearchMoreSurvivors #ChooseHOPE

#ResearchMatters

Five years ago I was feeble and fragile, just finished my fifth round of chemotherapy, having coughed for months before diagnosis, still coughing because although chemo helped, it didn’t really help that much. Facebook just reminded me of that time with a photo of some of the many gorgeous flowers that beautiful people sent to us to encourage us, because we all need encouragement, especially when we are travelling rough places in our road.

I could hardly talk, couldn’t do much more than lie on the couch looking at beautiful flowers. I pushed myself hard, not wanting to give up one millimetre to lung cancer, but even so, those were difficult days. Some of my friends are going through hard times like this now. Those were hard days, because no matter how tough I was or how hard I pushed, lung cancer kept pushing harder, and chemo sure wasn’t doing the job.

Thankfully lung cancer research made a difference for me. I’ve been on a series of targeted therapy drugs for almost five years now, and they have been -not without side effects- better than chemotherapy.

I’m alive and well, and now I’m still fighting! I’m not fighting for my life at the moment, but I’m fighting for others, including those who have not yet been diagnosed.

I’m thankful that I’m not fighting alone. Here are a few of my terrific teammates gathered in Atlanta for the AACR Annual Conference:

Lung cancer research has been neglected, and I can’t understand why. New treatments are game changers, so let’s keep going and make a great life and death difference for more people! Let’s find new targeted therapies to work for more of the lung cancer patients. Let’s turn more patients into survivors!

Lung Cancer needs a little more love, and a lot more research money. More research money means more survivors. Look at me! I’m alive and I’m living life! I’m celebrating life every day because every day is a gift to be celebrated!

A bunch of us -lung cancer patients and others- are walking the Ottawa Race Week-end 2K this May 25. Come join us! We’re going to have a great time! We’re getting tee shirts! We’re just getting started! Stay tuned for more details, and sign up to join our team please! We are “Lung Cancer Team Canada”, and we’re raising $$ for Lung Cancer Canada. Here’s the link.

People matter. People with lung cancer matter. Lung Cancer #ResearchMatters . Tell everybody!

#ChooseHope

#Shift

This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.

I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.

It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.

Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.

On my way to share my advocacy story at my poster session

I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more

I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.

Ottawa to Atlanta

I can’t tell you how excited I am to be heading from Ottawa to Atlanta on Friday for the American Association for Cancer Research Annual Meeting. This is a huge conference, with 20,000-30,000 of the top cancer researchers in the world, plus many clinicians and so many others … including me! I’m participating in their “Scientist <–> Survivor Program”, which groups cancer survivor advocates with mentors, both in advocacy and also science. That’s right: we get connected with an expert in cancer advocacy, and also a scientist mentor to help us make the most of this amazing conference! There are so many sessions, but no one can go to them all. I’ve been trying to plan which to attend, and I’m facing scheduling conflicts. So many great options!

I’m thankful they have a conference app to help us figure it all out, because this event is packed with possibilities! If you are curious about what’s happening and who will be presenting, you can browse the sessions and check out abstracts from the comfort of your own home. Here’s a link to investigate the sessions and presentations. Here’s the link to my abstract. And this is the link to donate to the great work that the AACR does, through supporting my 5K walk on Saturday morning.

The app also has maps to help us find places. No getting lost at AACR Annual Meeting 2019! It will even show the path to walk from where one is to where a particular session is taking place. (In case you were wondering, it would take about 15 days to walk from where I am now to the Georgia World Congress Center, home to this preeminent cancer research showcase. I’ll stick to my plan to fly!)

Yes, I am quite excited about this privilege to participate in the AACR Scientist <–> Survivor Program. I feel very honoured that I get to be at the Annual Meeting, and I know I’m representing Canada as well as lung cancer patients, survivors and advocates. I will endeavour to make the most of this opportunity, and I expect I will spend time with exceptional people and learn a lot while I’m there.

I wish I could take all of you with me! Since we can’t all go, I’m going to try to do the next best thing. Here is one of the ways I’m going to step out of my comfort zone while I’m in Atlanta: I’m planning to post videos on YouTube of my time there.

Here’s a link to my first one! I hope you’ll follow my adventure in Atlanta on YouTube!

Choose HOPE! Inspire courage. Incite hope. Foment communities of hope.

#AACR19 #AACRSSP19