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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