Truth

The Inappropriate Ask

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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!

Jill’s story

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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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True confession time

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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

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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!

(Inspirational pictures from a museum display a few years ago)
(Inspirational pictures from a museum display a few years ago)
I was honoured to meet Darrell Fox, younger brother of Terry, a couple of years ago.

 

Parliament Hill

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I spent eleven hours at and near Parliament Hill on Tuesday, listening, learning and speaking. My first time serving as a lung cancer advocate in this particular setting, I was honoured to meet and have good conversations with MP Celina Caesar-Chavannes, MP Peter Kent, and MP Kate Young. It was a privilege to represent lung cancer patients, tell my story, and raise important issues. It was also a treat to make new connections, deepen ties with good groups like Canadian Cancer Survivor Network and Lung Cancer Canada, and spend time with dear friends who are passionate about this important cause. I was excited to be present at Question Period and see inside Centre Block again before renovations begin. A full day devoted to lung cancer issues: a day well invested! Now a couple of days of rest!

With thanks to John Major for the beautiful photo’s above, and CCSN and 3Sixty Public Affairs for organizing this strategic day.

What Power?

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Several weeks ago, a lovely woman at church told me that her husband had written a list of things that cancer does not have power over. My first response was, “I’d love to see that list!” My second thought was, “Maybe it would be better if I made up my own list!”

I am so grateful that it got me thinking more deeply about these questions: what actual power does cancer have in my life, and where am I giving it power that I shouldn’t.

My recent skate on our backyard rink was something I didn’t think I could do. My feet are fairly numb so my balance is lousy right now, and my body is startlingly weak. I had no idea what would happen as I attempted to glide out on the ice. I was afraid of falling and adding to my bruise collection (or worse). I was afraid of scaring my kids, of looking foolish, of not being able to get back up … I was feeling powerless. Fear and uncertainty were holding me back. But I made a decision that I was going to (carefully) go for it and see what happened. Even if the very worst I feared did materialize, we would manage. I’m so glad I did! The sun was glorious, the weather warm enough that I could breathe fairly comfortably, and my body remembered how to skate! I didn’t fall at all, although I did feel rather awkward (and somewhat powerless) at times! Fear can hold a huge amount of power over us. I’m so glad it didn’t stop me from skating!

We all have life circumstances which challenge us on a variety of levels. We may choose to give away power, or not recognize the power we do have within / in spite of them. We believe lies. We can allow ourselves to be paralyzed.

As I continue to wrestle with these questions, I realize more and more how important it is: not only to wrestle, but also to step out boldly in truth and love as best as I can.

What about your life circumstances? What power do they actually have over you, and where do you inappropriately give power to them? What power will you choose to give to them, and what practical differences will that make in your life?

(This photo is of a list I discovered on a bulletin board at the hospital. What Cancer Cannot DoI have no idea who wrote it.)