Cheering

I don’t have words to tell you how hard a lung cancer diagnosis is, but I will tell you this: the friends we make through lung cancer are silver linings. I’ve met some amazing people and count that an honour and privilege!

We rejoice and celebrate when someone gets good news and we weep together when the news is bad. (Today is one of those hard days: a dear lung cancer friend is in a tough place right now.) About half of all lung cancer patients are diagnosed at stage 4, and many of us get scans every 3 months or less. That’s a lot of emotion at regular intervals!

But it’s not just the lung cancer patients who are silver linings. I’ve connected more deeply with a variety of people, including friends who have drawn closer in support, people affected by other kinds of cancers, caregivers, and all kinds of people who are helping and working towards a cure.

This is going to be a big week-end for me, cheering for some of my silver linings!

Sunday is “The Ride” fundraiser for the Ottawa Hospital, and I plan to go cheer for the cyclists who are riding to raise funds for cancer research, especially for Anna, the “Superhero” researcher who is riding for lung cancer research. She has surpassed her fundraising goal, thanks to generous donors who I’m also cheering for! Thank you! Let me know if you can come join me for some cheering at Tunney’s Pasture around noon this Sunday. I’d love to connect with you there.

Tonight is Stand Up to Cancer’s big show, 8:00pm on just about every TV channel, live from LA. At the LUNGevity Hope Summit in DC in April, we met many amazing people, including Sung Poblete, the President and CEO of Stand Up to Cancer. She listened intently and spoke passionately about collaboration and accelerated research, and what’s not to love about SU2C’s mission to turn every cancer patient into a cancer survivor! No wonder they’ve done so well at bringing celebrities on board! Tonight a show full of celebrities will be Standing Up to Cancer and urging people to give generously to cancer research. All money given in Canada will stay in Canada. I love that Stand Up to Cancer and all those celebrities will be cheering us on tonight. I’m looking forward to watching the show and celebrating the support!

But you know what else I’ll be cheering about? Many of my lung cancer community friends will be sitting in the audience, watching the show live in person!! SU2C was extravagantly generous, offering free tickets at the LUNGevity Hope Summit! I could have gone too, but this year I’ll be hanging out with my family, watching the show from my living room. (I hope you will too!) I’m pretty sure I won’t recognize all the celebrities on stage, but I’m going to be looking out for my lung cancer friends, and you can believe I’ll be cheering loudly whenever I catch a glimpse of any of them!!

Research is making a difference. (There’s still a long way to go.) Research is already starting to improve outcomes for lung cancer patients. Look at me! I’m here because of the grace of God and because of lung cancer research. That’s something to cheer about!

Jill Stand Up 2 Cancer pic

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What’s on TV tonight!

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Tennis Anyone?

I was always very active. I loved moving and played a wide variety of sports. Tennis is one sport I didn’t learn until I was in my 40’s. I took a beginner course at our neighbourhood club, where they taught with the latest methods: smaller courts and slower tennis balls. I was amazed that by the end of the course I was able to return the ball in bounds fairly consistently.

Tennis was fun and good exercise. I enjoyed playing regularly, often with our former neighbour Cynthia, and my skills continued to improve. Until lung cancer.

I was determined to play again, but I really haven’t been up for it. The combination of reduced health along with nerve damage (from chemo) to my feet make it challenging to stay upright. Last week, on holidays with good friends, we all went out to play a bit of doubles tennis. I can’t say I played well, but my family and friends were gentle with me! I had a great time and did much better than I thought I would.

What do you wish you had learned at a younger age? What do you feel like you can’t do anymore? Maybe it’s not too late. Why not give it a try?

Here are a few action shots my husband took last week:

Jill tennis 2018

Jill tennis 2018 cottage

Jill tennis doubles 2018

Jill tennis postplay 2018

My cancer meds make my skin very sun-sensitive!

 

The Ride

What are you doing Sunday September 9? My friend Anna is going the distance, riding her bicycle 117km to raise money for lung cancer research! It’s not too late to help!

I’m incredibly honoured that Anna is doing this big ride for me, my family, and the lung cancer community! Check out my story and picture here on Anna’s fundraising page. When you support Anna, you’re encouraging me and making a difference for the whole lung cancer community.

Helping cancer patients is nothing new for Anna. She works hard all week long as a cancer researcher at The Ottawa Hospital, aka “superhero” (see my post here). But working full-time against cancer isn’t enough for Anna. That’s why she’s taken to her bike.

She’s done The Ride before, and she’s a strong cyclist. If I were a betting person, I’d put money on her being the first female finisher. But her real strength is in wanting to make a difference for people like me. I can’t tell you how much it means that Anna O’Brien is doing The Ride -a fundraiser for The Ottawa Hospital Cancer Centre- for me, my family and all the lung cancer community.

Lung cancer is by far the deadliest kind of cancer, yet receives little research funding. We’re hoping to change that! One in twelve Canadians will be diagnosed with lung cancer, and we yearn for better outcomes!

Here’s the difference clinical trials made for our family, from the story I wrote for Anna’s donation page. Thank you, Anna!

Seventeen months after diagnosis, I had run out of treatment options and it looked like cancer was getting the upper hand. Telling our three young kids about my diagnosis was the hardest conversation I’d ever had. I didn’t want to have to tell them any worse news.

A clinical trial at The Ottawa Hospital Cancer Centre rescued me and changed our family’s story! That research extended my life two years: long enough for another cancer breakthrough to be ready when I needed it!

Four and a half years after diagnosis, I’m still on treatment, still going strong and so very thankful!

I was healthy and fit back in 2013 when we were blindsided by lung cancer. I had no idea that a non-smoker without asbestos or radon exposure could get lung cancer. I didn’t know…

Lung Cancer is by far the deadliest of cancers, killing more Canadians than the next three deadliest cancers combined. Research extends lives!

Only 17% of lung cancer patients are still alive five years after diagnosis. With the help of The Ottawa Hospital Cancer Centre and generous people like you, I hope to make it to five and beyond!

Cancer Research makes a difference. Thank you for supporting the Cancer Research team at The Ottawa Hospital!

If you’d like to help, please support Anna here: Anna’s fundraising page. Thank you!

Anna O'Brien

Anna loves her work!

In Between Bounces

ct scan oral contrast

Two large cups of Oral Contrast which I drank between 2:30 and 4:15pm, the day of the scan

I had another routine CT scan last week, followed by a few days of fairly typical post-scan fatigue. “You don’t bounce back quickly from these scans,” observed my hubby. We’ve often said this about my energy levels in recent years, but this time these words evoked an image which captured my imagination: a ball hitting a wall in super slow motion. What a perfect picture of how my energy level gets flattened, then takes so much longer to be back to “the new normal”.

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I can relate to that tennis ball, flattened on impact, then regaining its shape ever so slowly! (tennis ball video)

I don’t bounce back like I used to! There are many variations on the, “You don’t _____________ like you used to,” theme. Choose your favourite word or phrase to fill in the blank! I could write a whole series of blog posts about the ways we could fill in the blank, and the ways I grieve and miss my pre-cancer life. It would be easy to get caught up in this way of thinking instead of being grateful for what I can do and what I do have.

Rather than focussing on what I can’t do, I’d much rather focus on what I can do.

My intention is to invest time and energy into my priorities, like family and friends, being involved in church, leading Bible study well, and -lately- caring for lung cancer patients and helping to raise lung cancer awareness and funds for research.

It takes me a long time to bounce back, but in between bounces I’m trying to find my particular niche in the lung cancer landscape. I want to strategically help make a difference for lung cancer patients, improve outcomes and help us hold onto hope.

Lung Cancer is the deadliest cancer. Although it receives only a small amount of money for research, that investment is leveraged into a large impact for some lung cancer patients. Imagine the difference more funding could make!

If you’d like to work with us to explore ways to help lung cancer patients, please message me. It takes a whole team!

Real Live Superheroes

This morning something pretty awesome happened. I got to enter a room filled with superheroes! These are amazing superheroes who do their superhero work all day long, cleverly disguised as ordinary people.

I was asked to show up at 9:00 am on the first Wednesday in July to meet the person who would escort me to a secret location. Thankfully no blindfold was needed, no large sack thrown over my head.

As we reached our destination, the door opened and I recognized many of the people inside. There were nurses, administrators, researchers … a whole team of people dedicated to cancer research at The Ottawa Hospital!

This was a meeting of The Ottawa Hospital Cancer Centre’s Clinical Trials Superheroes (not their official name!), and I’d been invited to share my story with them!

About a month ago their team leader contacted me. She’d heard me speak at the big fundraising breakfast for the Ottawa Regional Cancer Foundation in May, and she wanted to connect with me.

I was excited to meet her, not only because I was curious to see what she had in mind, but also because I’ve been trying to understand the Lung Cancer landscape in Canada and had loads of questions about research. She answered many of my questions and then set up another meeting so I could learn even more.

As I got to know this inspiring team leader, I quickly realized she is amazing! She wakes up early in the morning to come up with new and better ideas for how she and her team can do their superhero work.

They strike me as a humble group. You won’t typically see them in their superhero costumes. They work hard day in and day out, many of them behind the scenes, caring for cancer patients and helping to develop better treatments for us. And I was given the privilege of telling them my story, how a clinical trial – THEIR CLINICAL TRIAL – saved my life.

A little over three years ago, I had run out of treatment options. I was coughing non-stop, weak, unwell. It looked like cancer was gaining the upper hand. Then the clinical trial. Everything changed. Three years later here I am!

A clinical trial at The Ottawa Hospital changed our family’s story! A new investigational drug extended my life two years: long enough for another drug to be ready when I needed it! In this way, that clinical trial is still at work, continuing to extend my life. Four and a half years after diagnosis, I’m still on treatment, still going strong and still so very thankful!

Of course, many of them already knew my story – at least bits and pieces of it – because many of them have played significant roles in it. In this room were people who filled out paperwork for me to enter the clinical trial, listened to me and listed all my many side effects, and did all the ongoing work (like booking scans and more paperwork) to keep me in the trial. There were nurses who extended kindness as they interacted with me, drew blood and ran tests. I went into the hospital at least twice every three weeks for almost two years, and I received excellent care.

Not only do they provide excellent professional care, but these superheroes actually do care. I’ve seen them go out of their way, above and beyond, to take care of people, and I know that is why they do their job.

These superheroes, cleverly disguised as ordinary members of the cancer centre’s clinical trials team, save people’s lives on a regular basis!

It was such an honour to be in the room with them. I’m grateful for the opportunity to thank them for their hard work and the difference they have made for me and my family. So many memories these past three years, so many milestones our family has been able to share. Because of the grace of God and because of superheroes like this awesome team!

Here is a picture of some of them right after I spoke this morning … and if you look very closely, you might even catch a glimpse of one of their superhero capes!

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An Act of Defiance

Three years ago I committed an act of rebellion way beyond anything I had done in my teens.

I didn’t do it alone: I recruited my family in this ridiculously defiant act.

I was diagnosed with lung cancer in December 2013. At that time, there were two treatment options for my particular kind of lung cancer: IV chemo and a new targeted therapy (pills) called Crizotinib. I underwent IV chemotherapy and then I took the brand new targeted therapy, but one and a half years after my diagnosis, I had run out of options. In May 2015, the cancer was growing and there were no more approved treatments.

Thankfully, my oncologist did his research and learned there was a clinical trial that I might qualify for. This clinical trial was for another new targeted therapy called Ceritinib. I underwent lots of testing to find out if I would be allowed to join.

My friends prayed as I went through the process. We had no idea if I would qualify, nor which arm of the trial would be the best one for me. I was approved and randomly chosen for the group that we now know is now best practice for this drug. All over the world now, people take Ceritinib with a low calorie, low fat breakfast, exactly as I did throughout that clinical trial.

I kept taking Ceritinib as long as it worked: almost two years! The side effects were difficult but bearable. That clinical trial extended my life – not just for those two years, but it also carried me through long enough for new treatment options to be available. Now I’m on a third targeted therapy, and it has been working well for a year and a half. We give thanks!

But three years ago, I had just started this clinical trial and I had all kinds of side effects. They tend to be worse the first few weeks of a new treatment, and I was also dealing with side effects from recently stopping the previous treatment. It was a very difficult season, I was in excruciating pain, and we had no idea if the clinical trial would work.

So in the midst of all the uncertainty and pain and grief, I decided to take a drastic step.

It had to do with an apple tree. I’m a bit of a gardener (not so much in recent years). For years, I thought about planting an apple tree but never did because it takes a few years to bear fruit, and I preferred plants that would give more immediate results. I did not want to wait for an apple tree to mature enough to bear fruit.

Three years ago, I chose to incite rebellion. I chose defiance.

Shortly after I started that clinical trial, my birthday was approaching. For my birthday I told my family the only present I wanted was for them to give me an apple tree and plant it in our back yard. A special tree, with branches of different kinds of apple trees grafted on so that we could have a variety of apples to enjoy. A tree of hope.

Hope is an act of defiance.

I started a rebellion and provoked defiant hope.

And it paid off: as I celebrate my birthday three years later, that tree is fruiting in a spectacular manner!

Three years later, more treatments are approved and available, and many more are in the pipeline for my kind of lung cancer and for other kinds too.

Three years later, there are baskets full of hope that were empty before.

There’s still a long way to go, though. I’m grateful that I’m here and I have a voice to speak up for lung cancer patients and all cancer patients.

This kind of defiant hope compels me as I seek to improve outcomes for lung cancer patients. I have so much to learn! I want to strategically invest my limited energy! Lung cancer has been neglected for too many years, and I’m looking for ways to change this.

It takes hope to plant a seed. It seems ridiculous that a small dead-looking seed will come to anything, but we know it can. We’ve seen it time and again: we eat food every day.

I’m planting my seed! I hope my small efforts will make a big difference for many of us.

Hope gathers us. Hope unites us. Hope holds us.

Hope is an act of defiance. Come join the rebellion!

Parliament Hill

I spent eleven hours at and near Parliament Hill on Tuesday, listening, learning and speaking. My first time serving as a lung cancer advocate in this particular setting, I was honoured to meet and have good conversations with MP Celina Caesar-Chavannes, MP Peter Kent, and MP Kate Young. It was a privilege to represent lung cancer patients, tell my story, and raise important issues. It was also a treat to make new connections, deepen ties with good groups like Canadian Cancer Survivor Network and Lung Cancer Canada, and spend time with dear friends who are passionate about this important cause. I was excited to be present at Question Period and see inside Centre Block again before renovations begin. A full day devoted to lung cancer issues: a day well invested! Now a couple of days of rest!

With thanks to John Major for the beautiful photo’s above, and CCSN and 3Sixty Public Affairs for organizing this strategic day.