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.

A Dog’s Life is Filled with Hope!

I’ve never been much of a dog person, but my daughter sure is. She loves dogs. She’s on her fourth “Dog Calendar” now – you know, the kind where there’s a new picture for each day of the year, and for my daughter, each doggie picture is cuter than the one before.

A little over a year ago, our family decided to adopt a rescue dog. We went in thinking we knew what we wanted (medium size, preferably black or mostly black). We chose Colo, even though he wasn’t exactly what we’d planned for (he’s white and the size of a small house horse). It’s hard to explain how it happened, but we love this dog, and we brought him home.

Somehow this dog keeps digging his way deeper and deeper into my heart. I’ve learned to scratch his ears in just the right places, and I’ve come to understand that this dog is filled with hope.

When I reach for my shoes, he’s hoping for a walk. When he hears a crinkly sound, he’s hoping for a treat.

Tonight I was making chocolate chip cookies, and the dog plonked himself down on the floor at my feet, looking at me with those gorgeous brown eyes, expectantly, waiting, looking up, hoping, anticipating, at the ready, just in case some small bit of batter might happen to fly out of the bowl.

Which (he should know by now) was not likely! And even if some small bit of chocolate chip batter did dare take the plunge toward the eager dog lying in wait below … how could he imagine that I would not, with my lightening-fast ninja-like reflexes, intercept it long before he had even the remotest chance? This dog lives in hope!

He knows that I am not some clumsy cook who would carelessly cast off delectable delights, especially not ones containing compounds dangerous to dogs. Yet he hopes!

Why shouldn’t he hope? Why shouldn’t we? After all, here I am alive and baking cookies five years after a terrible diagnosis. Why shouldn’t we live a life filled with hope?

Especially when the baker is holding out a spoon, filled with good cookie batter, just waiting for you! Hope!

Advice for Christmas

Several weeks ago I was invited to contribute tips for Christmas to a big lung cancer organization’s blog. I thought I’d also post some here in case any of you might find them helpful. They’re not just for people newly diagnosed with lung cancer. 🙂

I was diagnosed on December 12, 2013. I received my second chemo on December 24th. I felt like a deer in the headlights that Christmas. There were so many emotions and pressures. My kids were 6, 10 & 12. I knew it could be my last Christmas. Thankfully, I’m still here five years later.

None of us know how long we’ve got. Cherish every moment! Say the things you know you should say. Seek reconciliation, ask for forgiveness, tell them you love them. Take lots of pictures. Laugh and be silly. Live life while you can. Seize the day!

Some practical tips:

Change your expectations. Cut down your to do list. Say no to some of the events. Schedule in rest times. Actually block out times on your calendar for you to rest! 

Conserve your limited energy for what matters most to you. Let other people do everything else. If anyone offers to do something for you, say yes, even if it’s uncomfortable. Invest your time with the people who are most important to you, and limit time with those who zap your energy.

Practice self care. Bring nutritious food to a potluck and eat it! Taste that decadent treat that looks so delicious! (but if it doesn’t taste as good as it looks, stop after the first bite!) Get fresh air and exercise every opportunity you can.

Savour the moments. Seek out beauty and kindness. Look for things to be thankful for, and give thanks!

Ask for help. 

… and for those of us who are Christians, remember what Christmas is about, that God loves the world enough to give us all this precious gift of Jesus. Focus on that and the rest will fall into place!

Merry Christmas!

(Photo’s from previous years … I haven’t taken any yet this year!)

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!

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,

42905180_10156603606724318_2221176117044183040_o

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!

38085705_10156460073569318_3536342287590096896_n

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!

38086007_10156461172749318_7569960127843794944_o

(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!

38127544_10155627241476884_8858178977789902848_n.jpg

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

ct scan oral contrast

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”.

Screen Shot 2018-08-11 at 4.48.43 PM.png

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!

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!