Real Live Superheroes

This morning something pretty awesome happened. I got to enter a room filled with superheroes! These are amazing superheroes who do their superhero work all day long, cleverly disguised as ordinary people.

I was asked to show up at 9:00 am on the first Wednesday in July to meet the person who would escort me to a secret location. Thankfully no blindfold was needed, no large sack thrown over my head.

As we reached our destination, the door opened and I recognized many of the people inside. There were nurses, administrators, researchers … a whole team of people dedicated to cancer research at The Ottawa Hospital!

This was a meeting of The Ottawa Hospital Cancer Centre’s Clinical Trials Superheroes (not their official name!), and I’d been invited to share my story with them!

About a month ago their team leader contacted me. She’d heard me speak at the big fundraising breakfast for the Ottawa Regional Cancer Foundation in May, and she wanted to connect with me.

I was excited to meet her, not only because I was curious to see what she had in mind, but also because I’ve been trying to understand the Lung Cancer landscape in Canada and had loads of questions about research. She answered many of my questions and then set up another meeting so I could learn even more.

As I got to know this inspiring team leader, I quickly realized she is amazing! She wakes up early in the morning to come up with new and better ideas for how she and her team can do their superhero work.

They strike me as a humble group. You won’t typically see them in their superhero costumes. They work hard day in and day out, many of them behind the scenes, caring for cancer patients and helping to develop better treatments for us. And I was given the privilege of telling them my story, how a clinical trial – THEIR CLINICAL TRIAL – saved my life.

A little over three years ago, I had run out of treatment options. I was coughing non-stop, weak, unwell. It looked like cancer was gaining the upper hand. Then the clinical trial. Everything changed. Three years later here I am!

A clinical trial at The Ottawa Hospital changed our family’s story! A new investigational drug extended my life two years: long enough for another drug to be ready when I needed it! In this way, that clinical trial is still at work, continuing to extend my life. Four and a half years after diagnosis, I’m still on treatment, still going strong and still so very thankful!

Of course, many of them already knew my story – at least bits and pieces of it – because many of them have played significant roles in it. In this room were people who filled out paperwork for me to enter the clinical trial, listened to me and listed all my many side effects, and did all the ongoing work (like booking scans and more paperwork) to keep me in the trial. There were nurses who extended kindness as they interacted with me, drew blood and ran tests. I went into the hospital at least twice every three weeks for almost two years, and I received excellent care.

Not only do they provide excellent professional care, but these superheroes actually do care. I’ve seen them go out of their way, above and beyond, to take care of people, and I know that is why they do their job.

These superheroes, cleverly disguised as ordinary members of the cancer centre’s clinical trials team, save people’s lives on a regular basis!

It was such an honour to be in the room with them. I’m grateful for the opportunity to thank them for their hard work and the difference they have made for me and my family. So many memories these past three years, so many milestones our family has been able to share. Because of the grace of God and because of superheroes like this awesome team!

Here is a picture of some of them right after I spoke this morning … and if you look very closely, you might even catch a glimpse of one of their superhero capes!

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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!

Good News and Good Gifts

Here’s a bit of good news that made me cheer yesterday morning:

My regular clinical trial protocol has changed! So, instead of going in to the hospital two days in a row every three weeks, I’ll now have all my appointments on the same day – yay! It will be one long day, but only one day and I’m pretty sure it will be less tiring overall!

To celebrate, I slept in this morning! My 8:30 am appointment was cancelled because I did all my tests and meetings yesterday! I feel tired today, but not as tired as I typically do on the second appointment day!

Yesterday at the hospital, I rejoiced again to receive comments about how thick my file is and how many weeks I’ve been on this trial. I’m very thankful that these meds continue to work for me! I’m grateful that I get to keep taking them, and hopeful that the good work they are doing will continue for a very long time!

In other exciting news, my kids have been away at camp (a great opportunity for which we are deeply grateful!), and they’re coming home soon! I wrote a poem this year which I will have posted below. (Sorry about the formatting: not exactly what I wanted, but it’ll do!)

I hope you will enjoy the rest of the Summer (or Winter, for those in the Southern Hemisphere), and give thanks for the gifts of each day! Our doorbell just rang, announcing the good gift of a dear friend visiting and presenting me with a gorgeous shirt she just made for me! I’m feeling rather bowled over by this generous gift! I am grateful for so many gifts, including your ongoing prayers and encouragement! Thank you!

Heart Pressed

They bump out the door,

Duffle bags bulging with sleeping bags and swimsuits,

Enough for fourteen fun packed days

The door bangs behind them,

Its vacuum pulling my heart along with them, 

Pressed up against the glass,

Aching for their presence

Yearning for their laughter

Echoing around these now empty rooms

And they’re off!

Bundled into the car

Bright smiles, cheerful waves and calls of, “I love you!” “xoxoxoxo!”

Last year, she said, she blew me kisses all the way down our street, down the next one and the one after that, and even along the highway …

Our love is a bungie cord

It stretches and stretches and

Will not break

My heart squeezes out through the door and sneaks into the car with them,

Travelling that 400km journey, tucked away like the messages I hide in their bags,

Like my note she keeps safe under her pillow at camp

And I remain, heart pressed against the glass,

Aching for them to deeply know the One who will never leave nor forsake them,

Yearning for them to encounter Him in bigger and truer ways,

Trusting that as they grow, He is always more than enough.

Heart eagerly pressed against the glass,

Excited about the people they will meet, skills they will learn, songs they will sing, stories they will savour, beauty they will behold …

And bundle up to bring back home to me

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A sample of our summer adventures:

(Diefenbunker, Nature Museum, History Museum)

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My firstborn, serving his delicious homemade ice cream!

Fundraiser: an inside look

They say the vast majority of people are so afraid of public speaking that they would rather die than give a speech. I’m certainly not in that category! Yesterday I spoke about clinical trials at the Ottawa Regional Cancer Foundation’s fundraising breakfast, and had a great time doing it!

I was privileged to be able to share my story and to thank some of the people who help make a difference for cancer patients, their families, friends and broader communities through clinical trial funding.

This was an extremely well-organized event, with loads of people working hard both upfront and behind the scenes.

I don’t know the exact numbers, but there were about 50 tables of 8, each with a table host and an “expert” (e.g. oncologist, cancer coach, etc.). Our table expert was a cancer fitness instructor, and I would have loved to have had more time to pick his brain! 🙂

I am very grateful for the many people who invested so much time and energy into making this event a success. There is a great commitment to excellent cancer care in the Ottawa region!

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Even with a crowd of 400 or so, I didn’t really feel nervous. I felt moments of nervousness, but I prayed and breathed and felt peaceful and calm. I felt like I was meant to be there and really excited for the opportunity! I give thanks to the Lord for this good gift of confidence and peace!

Just as the breakfast was about to start, one of the Cancer Foundation people asked me if I’d do an interview for a local radio station right then, so I ducked out and missed the opening few minutes of the breakfast. Again, I felt completely calm and glad to do it! I haven’t heard the story yet – don’t even know if it has aired.

The breakfast was so well organized that I knew well in advance exactly when it would be my turn to speak. They confirmed it with me again before the breakfast yesterday morning, but there was also someone who came to my table at the right time, to get me and practically escort me right onto the stage! No backing out! haha 🙂 Seriously, I felt very well-cared for by the team in the lead-up to the event, during it, and afterwards. Very encouraging!

The mayor served as MC, and did a great job! He helped me to relax in the moments before I spoke, while they showed a video much like the one which had been on the news last month. He quietly asked about my kids, where I live, people we know in common, etc. For a very brief moment I considered mentioning to him that the sidewalks on our street are in terrible shape and could really use his attention (I’ve been emailing our Councillor about that lately!), but instead I chose to focus on why we were there! 😉

My speech was only 5 minutes long. So much more I wish I could have said, but these are busy people who need to get to work. I honoured the 4 – 6 minute range they gave me.

I spoke about the strong community of support we have, and the generosity lavishly poured out on our family. I specifically mentioned the prayers, encouragement and the food!

I mentioned that the Lord has made a huge difference for me. Afterwards a woman I didn’t know approached and kept thanking me for speaking and saying, “Praise God!” I’m assuming she was a Christian: it was encouraging to hear from her and shake her hand!

It was good to connect with people who introduced themselves to me afterwards. It’s a small world, and I spoke with a few folks I knew or who knew who I was. I am so thankful for the two friends who came with me, and the team of dear people who weren’t there, but encouraged me and prayed for me. I carried this support with me, and felt carried by it.

Here’s an excerpt from my speech, the end bit:

Every day is a gift! I don’t know how many more I’ll have, but I want to make the most of each one.

I’m thankful that research continues to develop new and better treatments that I hope will help extend my life for many years. I want to celebrate many more birthdays with family and friends, and I’d love to see my kids grow up and even my grandchildren. Clinical trials are helping me to have hope!

Your generosity in supporting clinical trials is making a significant difference for cancer patients, their family, friends and communities. Thank you for standing with us, as members of our support team.

I dream that one day soon the treatment for cancer will be 3 months of a daily pill, and then you’re done. That’s a dream worth working towards, and we get to play a part in that!  Thank you for the part that you are playing.

(Where do you think I teared up? If you guessed when I mentioned my kids, you’d be right!)

The feedback I heard the most afterwards was that people were inspired, and that I spoke clearly and powerfully …

… but what really excites me is that the Foundation raised over $215,000 at the breakfast yesterday morning! What generosity! I hope it makes an even bigger difference!

I’m thankful that I could play my small part!

I count you all of you, dear readers, as members of our support team, and I thank you!

The Ottawa Regional Cancer Foundation helps fund local clinical trials and offers cancer coaching to anyone who has been affected by cancer, including family members and friends.  http://www.ottawacancer.ca

If you’d like to donate to the Cancer Foundation, consider supporting my husband Jono’s fundraising efforts as he runs the marathon next week-end in support of the Foundation.  http://ottawacancer.kintera.org/ottawaraceweekend/jono   (No pressure!)

Now I’m off to run some errands and enjoy this beautiful Spring day!

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Thick Files

Lately quite a few medical folk are commenting how thick my file is. My first reaction is sadness: I’ve had so many appointments and tests that the paperwork is ridiculous. My second reaction is gratitude. I wish I’d never needed a cancer file, but now that I’ve got one I’m glad it keeps growing! While I wish we could close it down and file it away deep in the archives, the reality is that I’m still living – with cancer – but living!

Chart Thick File April 26, 2016

Part of my file: my oncology nurse leaves the rest in the office since it’s too heavy to carry!

Yesterday marks the one year anniversary since I started this clinical trial, and I’m thankful that the clinical trial nurses have run out of pages for my pharmacology file and had to make more copies to fill in my chart. I am currently in cycle 18 and my latest scans are still good. Praise God!

I am thankful for these pills I take every morning.

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I’m thankful that although I suffer side effects, they are manageable and the pills are effective. Many people can’t tolerate the side effects and have to discontinue this drug. I’m thankful that my numbers are good.

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blood pressure, pulse, blood oxygen%, temperature

I’m thankful that I don’t have to travel long distances for good medical care. (Some cancer patients travel hundreds of km, or even to a different continent for treatment.) I’m thankful to receive cancer medication free of charge – a benefit I receive from being on the clinical trial.

I’m thankful for Spring and the explosion of vibrantly colourful beauty! (Way too many photographs to post here!)

I’m thankful to have celebrated our 20th wedding anniversary last week, and for the friends who brought and ate yummy dessert with us.

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I’m thankful for field trips, music recitals, school bake sale fundraisers, and so many more moments that I get to share with family and friends … even ones that may seem mundane. I’m ridiculously thankful that I was able to bake four cakes for my kids’ school fundraisers this past month, and volunteer for a few different things. I keep praying for wisdom and trying to stretch myself further while asking the Lord for “daily bread”: everything I need for each day. He gives generously, pouring an abundance of grace over our lives.

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I’m speaking at the fundraiser for clinical trials next week – can’t believe it’s next week – and very grateful for the difference that generosity can make!

While I would love to be completely healed of this disease, in the meantime I am very thankful that my medical file keeps getting thicker!

In the News

A few appointments ago, my oncologist asked if I’d be willing to speak at a fundraiser for clinical trials. I agreed to consider it, and a few conversations later this was on the news:

 

I’m grateful to Patricia Boal, Bryan the camera operator, and the CTV news team for doing such a great job telling the story.

The breakfast is next month. I’m feeling a bit nervous, but I said yes for a number of good reasons and I’m glad I’m doing it. I hope my story will encourage and bring hope to others. I also hope it helps raise funds which will make a difference for many.

I dream of the day IV chemotherapy will be obsolete and cancer will be cured by a few weeks of daily pills with insignificant side effects. I hope it happens in my lifetime!

Sweet Springs

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Dear Friends,

It’s nearing the end of January and I’m noticing a pattern. When I started this blog two years ago, my goal was to post at least once per calendar month. So far so good. But lately I’m pleased to report that there isn’t much to say on the health front. Refreshingly dull, really! So dull, in fact, that my oncologist almost forgot to tell me that my latest CT scan again showed “No Evidence of Disease”!

If I reflect for a moment, I’m sure I can cobble together a few more updates for you from this month …

My physiotherapist graduated me from appointments for my shoulder. I continue to do daily exercises and see small improvements from week to week. She thinks I should be better in another four to six months.

I keep taking the daily meds, continue to go to many appointments and have regular tests as part of the clinical trial. One week out of three is pretty full of this activity, and it still really tires me out.

My energy level continues to gradually increase, as does my desire to make plans for the future and my hope to one day be able to work again.

I continue to have side effects. But here’s some exciting news: a couple of weeks ago a member of my Bible study began a comment with, “Now that you’re feeling better …”. I had to clarify that while I’m feeling somewhat better, I’m actually still suffering from a lot of nausea and other things that I then described to my Bible study group. A week later I told them I was feeling remarkably better: Significant improvements in those areas I mentioned! “It’s good to know specific things to pray for,” replied a Bible study member. Just as I suspected, they have been praying for me!  I give thanks, and it spurs on my own prayer life!

I am grateful beyond words for those who pray for me. Some of you I see regularly. Many of you I don’t even know. Thank you. You continue to make an immeasurable difference for me and our family. I’m sorry if I should have been more forthcoming about some of the difficulties I’ve faced. I don’t like to complain, but I also haven’t meant to be dishonest. It’s better for me to try to focus on the improvements, no matter how small, rather than getting bogged down in the mire of the many struggles I face daily.

Thank you for the words of encouragement that continue to buoy me. Thank you for the gifts which serve as a reminder of so much good. Thank you for the many kindnesses which have helped our family soldier on through what has been a sad and scary time.

We’re not all the way through the valley yet, but lately I’ve been reflecting and realizing that there is much value in this valley. We often yearn for those exhilarating mountain-top experiences, but rivers flow in valleys, and I’ve been privileged to drink deeply from  sweet springs. I’ve been surprised by joy and hope and love and grace and mercy in this valley … and we journey on.

May you drink deeply from the sweetest of springs,

Jill