The Inappropriate Ask

Celebrating 5 years since my lung cancer diagnosis

Truth is, no one really knows how hard it’s been, these last five years. I don’t like to talk about the hard times. That’s part of my coping strategy. I focus on what’s good, what’s beautiful, what’s true.

When I was first diagnosed, I woke up several times in the night. Chemotherapy or cancer side effects, and perhaps the stress of it all. I would look out the window and note the position of the moon and stars in the sky. Knowing they were still there, still moving as they had been prior to diagnosis, somehow helped, and I would go back to bed, back to sleep.

My faith in God has made a huge difference. I am grateful for the love God has shown me, and given me for other people. Any good you see in me is due to the difference Jesus makes in my life. I don’t talk about my faith much publicly, but I’m always happy to. Ask me about Jesus anytime!

It took a whole huge group of people to help keep me alive five years past diagnosis. I don’t know who they all are: researchers, doctors, scientists, statisticians, fundraisers, donors, nurses, administrators, number crunchers, cleaners, clerks, managers … I don’t even know all the categories of people to list, but I wish I could thank every one of them.

Getting me to five years has definitely been a group effort! During the hard times, even the smallest kindness or encouragement can make a big difference. Even a kind word or a greeting called out across the street! Many of you may not know what a significant difference you’ve made for me. Thank you.

While I was writing my blog yesterday evening, a group of amazing friends came carolling and gift-bearing to our door, in honour of my five year “cancer-versary”. This five year journey has been one of unexpected kindnesses, unexpected grace. I could never write them all down.

So many of you have made a difference for me, for my family these past five years. I am hurting my brain trying to come up with a framework which would help me to include and express all the many kindnesses we have received, tremendously moving and generous gifts which have helped us make it through the terribly difficult times over the past five years.

I simply can’t do it. I can’t list all the people. I can’t even categorize the types of gifts you’ve given us. Not even with the broadest of brush strokes or the vaguest of generalities. There is no way this human can find to thank all you wonderful people in one single blog post. 

I can say that each of you, even with the smallest of kindnesses, each of you who have helped us travel through this valley, have made a significant difference. You, perhaps, may have no idea. Thank you.

Thank you for showing love to this person affected by lung cancer. Thank you for showing love and kindness to my husband and children, also affected by lung cancer.

Not everyone has people like you.

Thank you for making a difference in our lives.

Lung cancer friends at Evening of Hope Lung Cancer Fundraising Gala November 2018

Could I ask just one more thing?

Help me win the Super Bowl Challenge! Whoever raises the most money for lung cancer research gets to go, and it’s not just about watching the game. If I win, I will tell my story to influential people who are in a position to help make a difference for people affected by lung cancer. Plus watch the Super Bowl … in Atlanta … in the Winter!

I would LOVE to win! Please help me!

Please click this link and help me win


https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

… Was that inappropriate?

Here are just a few special moments of lung cancer work over the past couple of years…

Please click this link and help me win!


https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

(Was that inappropriate?)  Thank you!

Hope!

Hope is an act of defiance.

I choose to act defiantly. I commit rebellion. I am an instigator.

Lung cancer is the deadliest cancer by far. The five year survival rate for lung cancer is 17%. 83 people out of 100 will die less than five years after diagnosis.

I was diagnosed with lung cancer 4 years and 364 days ago.

Diagnosed five years ago, less a day. I not only hope to … I plan to wake up tomorrow morning!

Never give up!  Choose defiance. Choose to believe. Act in hope.

If a lung cancer patient can hope, maybe other people can hope too! Join me in hoping. Join the Conspiracy of Hope! Dare to act defiantly.

Hope!

Jill xo

Seize the Day!

Wednesday morning I got up, went to wake up my daughter, and knew I had to go back to bed. Jono (my husband) called the cancer centre, and the nurse said, “Go to Emergency!”. So I spent Wednesday at the hospital. I slept in various chairs in a variety of spaces, generally upright, with blankets wrapped around me for most of the day. Tests, IV fluids, pills … eventually I started to feel better and they let me go home to my own couch and my own bed.

IMG_20181205_161350199.jpgI am thankful.

For health, for healthcare, for a caring oncologist, for great nurses, technicians, doctors, researchers, cleaners, administrators …  Thankful to be home and on the mend.

Who knows what tomorrow holds?

Don’t wait to do good. Do it now!

Say those encouraging words.

Tell them you love them.

Make the donation.

Do that one task.

Make the call.

Apologize.

Pray.

Share my dream!

Last night I had a dream

Enormous football arenas were overpacked with wildly cheering fans. The commentators were all familiar to me. Multiple cities across North America and around the world were showcasing similar events. Each was being telecast live, and I could see multiple large screens with views of the action around the world. Our view kept switching from location to location because there were so many action-packed venues. The energy in the arena was like nothing I’d ever experienced. The sound was deafening. The air electric. The crowds were cheering enthusiastically as lung cancer researchers made advances.

Lung cancer researchers? Yes, researching right on the field, and the commentators all were lung cancer advocates/activists/fundraisers, and I was one too, in my own arena. And we were doing the play-by-play, telling the crowds at home what was happening on the field. There were all kinds of half-time type shows, and great celebration and pageantry. Cheers would erupt as we would learn of advances in other stadiums. We were celebrating wildly!

And Chris Draft* would show up in one city after another, wild cheering breaking out whenever people saw him in their own city or on screen at a remote location. He would spend time with the commentators and with the crowds, and everyone would celebrate! He’d encourage everyone and the cheers would erupt and then he pop over to his next venue, and it would happen all over again.

Every arena, all around the world, enthusiastically cheering on lung cancer research! Advances being made in treatments and all manner of discoveries!

That is a dream worth having! An even better dream is for lung cancer to be cured!

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Chris Draft of the Draft Family Foundation: Inspiring Advocate!

* Chris Draft is a former NFL linebacker. This month, he and Keasha Rutledge Draft would have celebrated their seventh anniversary. She died of lung cancer. Chris tenaciously continues the legacy they both started. He is a tremendous lung cancer advocate, strategist and mentor. He is a hero to many of us in the lung cancer community. I am grateful to him for supporting and encouraging me, and teaching me so much! He has come to Ottawa several times, and phones regularly.

Chris started the Super Bowl Challenge, where lung cancer survivors compete to raise money for lung cancer research. Whoever raises the most gets a free trip to the Super Bowl. The second and third prizes are pretty good too!

I entered because I really want to go to the Super Bowl, but more than that, I want to raise money for lung cancer research. This is something I’m obviously passionate about!

I’ve met many wonderful people with lung cancer. Interesting, funny, generous, thoughtful, smart, caring people. People who are very much loved by their family, their friends. People who have made a tremendous difference in their communities and elsewhere in the world.

I love these people and I can’t tell you how much I want better outcomes for them, for us!

With 1 in 12 people getting it, you probably love someone with lung cancer too.

Please, help me raise money for lung cancer research! Would you give, and ask your friends and family to give as well?

Our family and friends are singing our lungs out for lung cancer research this month! We’re doing a song a day and posting them on YouTube. We call it “Love Songs for Lungs”, and we’re raising hope, awareness and funds for lung cancer research. We’re having a lot of fun doing it! If you haven’t seen us yet, check us out! And if you like what we’re doing, please “like” our songs and tell your friends, because that will help too!

Here’s the link to support lung cancer research, the good work of Chris Draft, and maybe even help me win a trip to the Super Bowl:

https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

And if you haven’t seen our songs yet … please check them out! Today will be #19, a classic love song done in a new way with a friend I’ve known since elementary school.

Here’s my YouTube channel: https://www.youtube.com/channel/UCe_-U2z2imwrQpKikpisxgQ/videos

Thank you.

Ottawa Lung Cancer Support Group Oct 2018 Cecilia Kim Jill Mariel Andrea Peggy Laurie Jan taken by Diane

Our beautiful Ottawa lung cancer group. (you may recognize Andrea (front left) from a “Love Songs for Lungs” video!)

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Living with Lung Cancer: Ottawa’s 1st Patient-Driven Mini Summit Nov. 27

I’m very excited about a significant event we’ve been working on. It’s about bringing hope to the Lung Cancer Community in Ottawa and the surrounding region… everywhere, really. It’s also about helping to improve outcomes for lung cancer patients, and those are two things that are very important to me.

Hope and Improved Outcomes are so important to me that I’m asking you to please help me spread the word about this Mini Summit which is happening soon here in Ottawa.

This event is extra-special because it’s for lung cancer patients, everyone who cares about someone with lung cancer, and anyone who wants to understand more about lung cancer. (That means you’re invited!)

It’s patient-driven, which means that fellow lung patient survivor Andrea and I have been instigating to make it happen, and working hard to bring our dreams to fruition. (We are Co-conspirators of Hope.)

And it’s happening! Tuesday November 27th, 5:30 – 8:00pm at The Ottawa Hospital Cancer Centre, in partnership with The Ottawa Hospital and Lung Cancer Canada.

It’s going to be terrific! We’ve got expert speakers: oncologists, social workers, patients, a caregiver, and time for Q&A. Topics include: latest developments in lung cancer treatments, dealing with symptoms and side effects, financial changes, community resources and more. I’m very excited!

Registration is required at the link below. It’s free of charge and a light dinner will be served, thanks to The Ottawa Hospital. We are grateful for the tremendous support! I’d like to give special mention to Dr. Paul Wheatley-Price and Jody Chaters. Jody made the invitation below, set up the event registration, and organized printing and catering. Thank you, Jody!

LC Summit Invitation

Here’s the link to register, please share it with everyone who might be interested:

https://www.eventbrite.ca/e/living-with-lung-cancer-ottawas-1st-patient-driven-mini-summit-tickets-52231479762

Lung cancer patients who are informed, encouraged and empowered generally tend to have better outcomes than those who don’t. This is why I seek out, raise up, gather and partner with “Co-conspirators of Hope for the Lung Cancer Community”.

I would love to see similar events to springing up across the country, driven by local lung cancer patients with support of local cancer centres and networks!

If you want to help lung cancer patients have hope and better outcomes, let’s connect. We are stronger together. If you’re thinking about doing an event like this, please contact me: I’d love to help!

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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