In the Bleak Midwinter

First of all, dear friends, let me remind you that January is radon month, so if you haven’t checked your home for radon, please do it this week-end! Radon is the second leading cause of lung cancer. Please protect yourself and your loved ones by getting a test kit this week-end and using it! You can read more in my previous blog post: How Two Trips to the Basement Could Save Your Life. Thus ends my radon public service announcement! 🙂

You’re probably wondering what I’ve been up to lately, besides hanging out with my boys and walking the dog. The answer is LOTS!

The Ottawa support group is going well: 13 out at our January meeting. We have an awareness day planned at the General next Thursday. Drop by the Cancer Centre and say hello if you’re around!

Our December Ottawa support group party, with a delicious and generously catered meal from Chances R Restaurant

I’m working at collecting and connecting lung cancer patients across the country, so if you know of any, please send them in my direction! Today I was talking with dear folks in Winnipeg. Yesterday it was Calgary. It can be pretty lonely here in Canada, without other lung cancer friends around! That’s why I’m working to find and connect lung cancer patients in various geographic regions across this large land. I hope we will have patient support groups, awareness days and summits across the country!

There aren’t enough hours in the day! I love serving as a catalyst, a creative problem solver! I’m energized by this work, and eager to meet people, gather them together, and help build lung cancer communities.

I joined the Canadian Cancer Trials Group as (volunteer) patient representative, Lung Site, in November. The CCTG develops and conducts clinical trials, and includes all major cancer centres and many community hospitals across the country. This will afford me the opportunity to meet people doing lung cancer research across the country, and that should help with my community building work! As patient representative, I have opportunities to give input into the clinical trial process at many points along the way. Steep learning curve and big responsibility! It’s important that I get to know a wide variety of lung cancer patients so that I can fulfill my obligation to represent us all. I hope to listen and learn a lot in the coming months and hopefully years. I hope to live long enough to fulfill my three year term commitment. Perhaps another clinical trial will help extend my life once again!

I’ve also applied to the Scientist-Survivor program at the American Association for Cancer Research Annual Meeting this Spring in Atlanta. What a wonderful opportunity to meet researchers, advocates, oncologists and learn many things about research into all kinds of cancer, then pass my learning along to many others! I should hear any day if I’ve been accepted, and I am eagerly hoping!

Christmas Day 2018

But it’s not all lung cancer around here. Sadly, Jono’s Mum is extremely unwell. Jono and our youngest rushed off to Australia right after Christmas to be with her and the rest of Jono’s family. We wished we all could have gone. They shared many joyous times together in the midst of such sorrow, and have just returned home. We’d be grateful if you could spare a prayer or warm thought for the family as it seems the end is drawing near.

Super Fun!

Well, that was the most excitement I’ve had in a long time! I can’t believe I almost won (i.e. almost came top three) the Super Bowl Challenge! Thanks to you, for a while there I was even in SECOND PLACE!!!! I’m getting excited again, just thinking about it!

Thank you for your tremendous support, encouragement, and generous donations! Together we raised a lot of money for lung cancer research and lung cancer survivor support. Together we raised a lot of excitement and encouragement for this lung cancer survivor too! Thank you!

One of the ways you increased my joy was by inviting your friends and family to participate as well. You told people my story, you widened the circle, you grew the team, and that was terrific! It takes a real team effort to compete in the Super Bowl Challenge! Thank you to all of you who are Team Jill, all year long. I can’t thank you enough!

Screen shot taken from https://www.crowdrise.com/o/en/campaign/2019superbowlchallenge

These top three will do a fantastic job representing all of us lung cancer survivors: Patty at Super Bowl 53 in Atlanta GA, Jeff & Rhonda at 2019 NFL Pro Bowl in Orlando, FL, and Gina at Taste of the NFL in Atlanta GA. They will have opportunities to share their stories with key influencers, and they will have a LOT of fun!

Grand total raised so far is: $32,594 USD, and Patty is holding another big event on January 19th. This is something to celebrate! I’m still hoping to make it to Atlanta, maybe even before Summer – watch this space!

Lung Cancer Advocate (and former NFL player) Chris Draft visiting our family

Chris Draft works with tremendous energy and tenacity to encourage and support the lung cancer community. Team Draft is Changing the Face of Lung Cancer, focusing on Awareness, Early Detection, Treatment, Research and Survivorship. Chris genuinely cares about people, thinks strategically and acts to make a significant difference. Plus, he knows football and enjoys taking people affected by lung cancer out to games, Survivor at Every Stadium.

www.TeamDraft.org – that’s Chris at the upper right

Thank you!! I had a lot of fun participating in the Super Bowl Challenge this year! That was one exciting ride! Thank you for your generosity.

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!

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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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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