Back to Where it all Began

I can’t tell you how excited I was to give a speech at my daughter’s elementary school’s Terry Fox Day Celebration! Honoured, excited and unusually nervous … partly because I don’t normally speak to the Grade 1-6 set, and that kept me up late the night before, reflecting on my story.

My cancer story started at the very same time as my little girl started going to that Elementary School. I was active and healthy, with no idea that I could possibly get lung cancer. We were happy and excited about life. I had a cough after a cold at the beginning of the school year. My daughter was in grade one. The cough didn’t go away. Eventually we learned that it was lung cancer.

I was very sick and it really affected our family. I coughed all the time, and couldn’t even bend over to pick something up. We needed a lot of help with meals and cleaning and other things. There were a couple of times I even thought I was going to die.

I’m a lot better now, in fact you would never guess I had lung cancer just by looking at me. I think it’s a miracle I’m alive, and I’m incredibly thankful for innovations in cancer treatment that mean I can take pills at home every day and live a somewhat normal life.

I did not expect, didn’t even imagine there would be cancer research breakthroughs in time for me! I cannot begin to perceive all the steps that had to be in place for treatments to be available to keep me alive today. I am thankful for all of the people, every single member of that huge team, all those special someones who have made a difference, changed our story, helped to bring about life-extending innovations in the lung cancer world.

I know Terry Fox transformed the cancer universe for many of us! I’m grateful for Terry Fox, for all the runners and researchers, dreamers, donors and doctors – everyone involved in the relay race that has lead to me standing in my daughter’s Elementary school gym on Terry Fox Day 2018.

This experience was extra emotional for me too, because this wasn’t only my daughter’s elementary school: it was also my own elementary school, where I went as a little girl, walked the halls, played in the yard, laughed with friends, learned all about fractions, performed in my school play, and at piano recitals. It was also the school where I did a practicum when I was a student teacher. So many memories!

I got pretty choked up when they showed the video about Terry Fox before I spoke. Terry Fox is a hero to me. He was long before my cancer diagnosis, and even more so now.

I managed to wipe the tears from my face before the lights went back on, and told the group the good and age-appropriate part of my story, making sure they understood the connections between their Terry Fox run, the importance of cancer research, and the difference that they were making for cancer patients and our families.

When you run, you raise money

so that scientists can do cancer research

and invent medicines

that doctors can give to cancer patients like me.

THANK YOU!

Today you are making a difference for cancer patients and our families! I’m so grateful that I get to be here and say “Thank You!”

But the teacher in me didn’t stop there: I also gave them a little lesson on getting through the tough times in life.

HOLD ONTO HOPE! Be like Terry Fox: DON’T give up! There is always reason to hope!

ASK FOR HELP! friends, family, teacher… find your team of encouragers, even if only one or two others (Terry Fox didn’t do it alone: he had a lot of help, including his brother and a friend in the van!)

HELP OTHERS TO HOPE (Sometimes that can help us hope too!)

. ..  …   ….   .. . ..   ….   …  .. .

I received lots of positive feedback after my speech, but as I walked home I couldn’t help but think of a few of the significant things I didn’t say to those beautiful children, the teachers, the VP, the parent-volunteers …

The statistics are heart-breaking: 1 out of every 12 of them will be diagnosed with lung cancer – that’s about 2 kids from each class – all the more gut-wrenching because it’s the deadliest cancer by far.

Lung cancer research is grotesquely underfunded.

We need a lot more research, and the time is now!

I can’t bear to think of those sweet children, grown up and enjoying life with a happy family, their a precious little daughter or son in grade one, then devastated by a diagnosis of incurable lung cancer!  I want a cure!

 

Icing on the Cake

You may have heard me say that hope is an act of defiance. You may have heard me mention a conspiracy of hope… I’m happy to report a growing crowd of co-conspirators!

It’s taken me a while to tell this story. That’s because I can’t figure out how to tell it. I can’t do it justice, can’t even come close.

August 1st 2018 was unlike any other August 1st I can remember. It started small and kept on growing.

I spent weeks getting ready for it! I painted “Hope” rocks,

37878023_10156455262974318_4517379153766383616_oand more hope rocks,

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and more hope rocks …

38481222_10156469364944318_3341712253979197440_oI bought chocolates, ordered supplies, connected with a variety of folks, including key people at the Ottawa Hospital Cancer Centre and Lung Cancer Canada …

I organized a lung cancer awareness table staffed by lung cancer patients at the Cancer Centre. It really wasn’t that big a deal! But it was, after all, WORLD Lung Cancer Day!

And it was, to my knowledge, the first time such a thing had ever been done!

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I wanted to make a difference, brighten people’s day at the Cancer Centre, inject a little hope, raise some awareness about lung cancer … hence the hope rocks and chocolates and information. But what ended up happening was so much more!

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(OK, I know it looks like we were blocking the elevator, but that elevator was out of service!)

We enjoyed a beautiful collaboration among a number of different groups and individuals who all want the same thing: to help and support lung cancer patients.

We didn’t count the number of people we had conversations with, but there were many! There were always at least two of us staffing the table, usually three and sometimes more! It seemed there was a constant flow of people who stopped by wanting to talk. I couldn’t estimate the number!

Here’s the thing: I was blown away by the difference we made! I can’t find words to describe the impact that we seemed to have on people. You could see shock and bewilderment on the faces of people when they first stopped by the table … especially when they found out we were there because of lung cancer. Many could not grasp that most of us were actual lung cancer patients / survivors. We looked so healthy …

Lung Cancer is the deadliest of all the cancers. We know that far too well. But that doesn’t mean we can’t enjoy each other’s company! 🙂 We cry together and we laugh together, and on August 1 it was a tremendous privilege to gather with some of my lung cancer sister-friends and bring joy and hope to the cancer centre! I don’t have words to describe how much it meant to me to be bringing hope to the cancer centre together!

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A conspiracy of hope! (In a place that can be so difficult to walk into.)

Here’s an excerpt of a letter I wrote to thank the team:

Thank you so much for your support yesterday! It was such a gift for us to be able to connect with lung cancer patients, other cancer patients, caregivers, staff, volunteers and friends! I loved the looks on faces when they learned we are LC patients/survivors! I’m confident we made a significant difference for many people yesterday.

It was significant for me too! Last year I painted hope rocks and brought them to the cancer centre all by myself. While I am glad I did that, and think it was a good thing to do, this year was so much better because I was doing it with you! Better because it made a bigger impact, and better because I got to do it with you!

I’m honoured to have served the Cancer Centre with you in celebration of World Lung Cancer Day 2018.

With love and appreciation –
Jill

But there’s even more!

Two of my dear (non-lung cancer) friends came and surprised me! They made and brought a huge, lungs-shaped cake to the Cancer Centre for us to share. What unexpected joy! They blessed us so we could in turn bless others even more! No words for how much this means to me! 🙂

A conspiracy of hope surprise party?

Here’s the best part, the icing on the cake: because we’ve got strong co-conspirators and teamwork, we’re going to keep these events going, raising hope and awareness about lung cancer. Monthly awareness tables, in ongoing partnership with Lung Cancer Canada and the Ottawa Hospital Cancer Centre, organized by my dear friend and co-conspirator, who is alive and making a difference thanks (in part) to excellent medical care and lung cancer research!

Hope could benefit from a whole lot more co-conspirators!

World Lung Cancer Day Aug 1 2018 TOHCC LCC Jill Cecilia Peggy Andrea

(Apologies: I don’t know who to credit for all of the photos. Most of them are from Mieke. Thanks again Mieke!)

 

In Between Bounces

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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.

Thank you!

I’m so grateful that I could join about 200 Lung Cancer survivors and 170 caregivers at LUNGevity’s Hope Summit in Washington DC the end of April!

I arrived to cherry blossoms on Thursday afternoon and enjoyed a quick view of some of the monuments and museums from the Circulator Bus. I spent time in the National Museum of African American History & Culture. I’m grateful for the few hours I got to play tourist, the many steps I walked (about three times my usual), and the healthy food I was able to buy from a grocery store. I went to my room early and slept well in preparation for the packed schedule the next three days!

Friday was a special Advocates day, then a welcome reception to kick off the week-end. We listened to speakers, met amazing new friends and reconnected with dear folks who feel like family!

So much exciting new research! So much joy and love, tears and hugs. So much hope!

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Jill & Jill  # This Is Hope

I came home refreshed and renewed, encouraged and energized! I came home with inspiration, instruction and ideas! I came home with deep gratitude for the people who make this Hope Summit what it is: organizers, speakers, participants, and generous supporters like many of you!

Thank you for helping me go! Thank you! Thank you! Thank you!

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Linnea has the same type of LC as I do, and is celebrating 13 years of living life since diagnosis!

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Canadians are loved, welcomed, and (this year) honoured with a special ribbon on our name tags. (I chose the purple one for fun!)

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Two of us came from Ottawa! So exciting! 🙂

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Five Canadians participated this year! Four of us are pictured here with LUNGevity’s inimitable Katie Brown! How many Canadians will go in 2019?