Jill’s story

I find it weird how few details I remember from what was such a momentous day in my life.

It was a Thursday in December in Ottawa. So, I imagine that it was probably cold and pretty bleak. There must have been lots of people heading to work, and many others on their way to confront mall crowds to pick up the latest hot toy or special gift to put under the Christmas tree.

I had probably woken up at the usual time, helped my sons get off to school and my daughter, who was in Grade 1, to her bus stop.

But the truth is that I don’t really remember.

It was just another routine day — until it wasn’t.

Until it became my personal nightmare.

And my family’s nightmare.

And the day that changed my life.

It was the day that I met with doctors to get the results from a bunch of tests that followed my complaint about a cough that wouldn’t go away.

At least I thought it was a cough. And wished that it had been a cough.

Instead, it was lung cancer.

Many people who get horrible news like that say that they remember so many unusual and often irrelevant details, similar to the war vet or the witness to history: the odd pattern on the doctor’s tie or maybe the light bulb in the waiting room that needed to be changed.

Not me. I remember pretty well nothing. I don’t remember what I was wearing or the weather or anything about what I ate.
About the only thing that I remember was the part where my doctor uttered the bottom line: “Jill, you’ve got lung cancer. We cannot cure you.”

There were lots of other words, I’m sure. Stuff details about my diagnosis and the lack of options and the horrific prognosis.

But after hearing the bottom line, the rest of it didn’t seem to matter much. Maybe that’s why I remember almost none of it. After hearing those words, my world just went into a dizzying blur. It was like I had entered some alternate universe that had completely different physical properties to the one that I was used to. 

Maybe I had been dropped into an episode of the Twilight Zone.

It must have been something weird like that because the doctors said “lung cancer” and I remember thinking that that made no sense.

That’s a smokers’ disease and I’ve never smoked.

That’s a type of cancer that I associated with older men. And i’m a mom with three young kids.

Like most Canadians, I didn’t know very much about lung cancer.

That’s no longer true.

Yes, it’s true that many lung cancers are caused by smoking. But we could remove all of the lung cancer deaths in Canada that strike smokers or former smokers and lung cancer would still kill just as many people each year as breast cancer. To say that another way: As many non-smokers die of lung cancer as women die of breast cancer. 

Lung cancer is also the leading cause of cancer deaths world-wide and is responsible for about 30 per cent of all cancer deaths in Canada. That’s even more than the deaths caused by the next three biggest cancer killers combined.

I don’t want to diminish breast cancer or any other type of cancer, or those smokers who contracted lung cancer. All cancers are horrible and all cancer victims have friends and loved ones and lives that they want to continue.

I want to point out what to me is painfully obvious and a gross injustice. This hellish disease that attacked my body and has placed me and my family under extreme stress for more than four years has a problem. Or, at least the battle against the disease has a problem.

It’s a PR problem.

People don’t seem to have as much sympathy for its victims as they do for other cancer victims, even though one in 12 Canadians will at some point in their lives get lung cancer.

One in 12!

Yet, despite that staggering number and the fact that lung cancer is responsible for about 30 per cent of all the cancer deaths, this disease gets about 7 per cent of cancer funding.  

How does that make sense?

It doesn’t.

And that’s not just the opinion of a lung cancer victim. According to the experts at McGill’s Rosalind and Morris Goodman Cancer Research Centre (GCRC), there are two factors behind the lack of research: first, the stigma around lung cancer. As I mentioned, this disease has a PR problem. 

And two, the grim survival rates. Only 17 per cent of lung cancer victims are alive five years after being diagnosed. It’s the deadliest form of cancer, which, in a very odd way, contributes to the PR problem because it means that there isn’t a very big pool of advocates to speak out about the need for more research.

I’m doing everything I can to remain one of those advocates – and a wife, friend and mother — for as long as possible.

I’m well aware that the fight against this disease needs people like me. I’m also very aware that I’m only here today because of new forms of treatment, which comes from research, which comes from generous donations.

Seventeen months after my diagnosis, I was weakening, running out of treatment options. Honestly, I thought my lung cancer was getting the best of me.

But a clinical trial at the Ottawa Hospital gave me a shred of hope and a life line. It extended my life by about two years. During that time, new treatments became available. That meant another life line and another one after that.

It’s now been more than four years since my diagnosis. I’m still here. I’m still a wife and a mom and a person who loves music and my friends and who gets lots of joy from my life.

That’s all thanks to God and to research and to generous donors.

I thank all donors from the bottom of my heart for that and ask that we each do whatever we can to beat this horrible disease. We need another life line. I need it and so do countless others.

Cancer affects all of us and we can and must win this battle.

I’m betting my life on it.

 

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It’s easy to help save a life. You can fund lung cancer clinical trials by designating “Lung Cancer” on the drop down menu (pictured above with the blue highlight). Please give generously at the link below, or to other specific lung cancer research charities. (I provided two others in my previous post.)

https://ottawacancer.thankyou4caring.org/donate/single-gift

Donations made to this designation will go to Lung Cancer clinical trials. Thank you to the Ottawa Regional Cancer Foundation for honouring my request for that designation. November is Lung Cancer Awareness Month, but you can give every month of the year!

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Love Songs for Lungs

Lung cancer doesn’t get much recognition. I’ve never been to a run for lung cancer, not even a walk. How many people know what colour the ribbon is for lung cancer, or that November is Lung Cancer Awareness Month?

Lung cancer is seldom talked about, even though it’s by far the deadliest cancer, killing more people every year than breast, prostate and colo-rectal (the next three deadliest cancers) combined.

Lung cancer doesn’t get a lot of love. Nor does it get much funding! In fact, lung cancer receives less than 0.1% of cancer donations from individuals and companies. That’s right: 99.9% of all cancer donations from people like you and me go to other cancers.

Lung cancer turned my life upside-down. It turned my family’s life upside-down. In the years since my diagnosis, I’ve met so many amazing people whose lives have been turned upside-down by lung cancer. Beautiful, amazing people. Too many lives cut short by this deadly killer.

And we know that research extends lives. We’ve seen it in my own life! Lung cancer patients are gathering together and funding research to try to extend our own lives!

We could use some help! Lung cancer patients could use some more support! Lung cancer research desperately needs more funding.

So this month our family is doing something crazy to try to raise funds for lung cancer research. We’re not fundraisers, so we’re starting with what we’ve got and trying to turn it into a fundraiser!

My musician-husband Jono and I are posting a love song on YouTube every day for the month of November in honour of Lung Cancer Awareness Month!  We’re calling it “Love Songs for Lungs“! It’s relaxed, minimally rehearsed, done ideally in one take in the living room, and so far it’s pretty fun! #30in30 #Hope

It’s especially meaningful for me because I love to sing, but lung cancer took my voice away. It’s only in recent months that I’m starting to find it again. It’s still not what it was, but I’m so thankful to be singing! You’re invited to celebrate with me!

Check us out! …and if you like what you see, or you want to encourage us, please share with your community and make a donation to lung cancer research.

I still haven’t figured out the fundraising part of this. I’m thinking about maybe starting a crowdfunding page (like gofundme) or something. I’m working on it and I’m definitely open to suggestions!

For a start, here are some links you could make donations to:

ALK+ Research (Patient-driven research into our own particular kind of lung cancer.)

Super Bowl Challenge (Funds go to support lung cancer survivors like me and research… and if I raise a LOT of $$, then I might even get to go to the Super Bowl!!!)

Thank you very much!  (For Lung Cancer Awareness Month 2017, I made a Jelly Bean video.)

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True confession time

Lung Cancer is nasty. While I was working hard with all my advocacy and community building, trying to make my little part of the lung cancer world a little better, lung cancer snuck up on me and outsmarted the drug I was taking.

I really liked the targeted therapy drug I was taking, and I was disappointed it didn’t work longer for me. Some people get a lot longer than I did. I have to be honest, I was hoping for three years or even more. I got one year and eight months.

So at the end of the Summer when I was feeling tired, and when the kids were going back to school and I was exhausted. That was the cancer. I was coughing a bit and I kept telling myself it was because we were swimming in chlorinated pools, but it was the cancer.

I’m thankful for my oncologist, and the fact that he makes me have CT scans even though I don’t like them. I’m thankful that he keeps on top of latest developments, new drugs and how to gain access to them. That can be tricky for cancer patients.

I can’t tell you how thankful I am that there was another drug I could jump to. It’s called Lorlatinib, I’m getting it free from the pharmaceutical company, and so far it’s working well with limited side effects. What a great gift!

I’m feeling really well! I’m relieved and grateful.

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I’m beyond thankful for another extension on my life. That’s what these amazing drugs do for me. They let me live longer, give me the opportunity to be there for my kids, my husband, and all the other important people in my life.

That’s why research means so much. Every new drug developed gives me and other survivors like me the gift of life for a little longer… another few months or years to share with our friends and family, a chance to see our kids grow a little taller or perhaps even graduate.

My oldest son was 12 years old when I was diagnosed, and I’m so happy that I’m alive to see him reach grade 12! The past two Saturdays I got to tour local Universities with him, hang out with him and help him as he decides where to go and what to study next year. With this new drug, I’m really hopeful I’ll get to see him attend University!

I know many of you have given to Lung Cancer Research. Thank you. You are making a life and death difference for people like me, for families like mine, not to mention our friends and communities. You are giving the gift of life for a little longer, the gift of opportunity for moments and memories, a gift that is precious and treasured. Thank you.

Onwards to a cure!

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PS: November is Lung Cancer Awareness Month.

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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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