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,

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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!

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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!

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(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!

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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

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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”.

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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!

Thank you!

I’m so grateful that I could join about 200 Lung Cancer survivors and 170 caregivers at LUNGevity’s Hope Summit in Washington DC the end of April!

I arrived to cherry blossoms on Thursday afternoon and enjoyed a quick view of some of the monuments and museums from the Circulator Bus. I spent time in the National Museum of African American History & Culture. I’m grateful for the few hours I got to play tourist, the many steps I walked (about three times my usual), and the healthy food I was able to buy from a grocery store. I went to my room early and slept well in preparation for the packed schedule the next three days!

Friday was a special Advocates day, then a welcome reception to kick off the week-end. We listened to speakers, met amazing new friends and reconnected with dear folks who feel like family!

So much exciting new research! So much joy and love, tears and hugs. So much hope!

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Jill & Jill  # This Is Hope

I came home refreshed and renewed, encouraged and energized! I came home with inspiration, instruction and ideas! I came home with deep gratitude for the people who make this Hope Summit what it is: organizers, speakers, participants, and generous supporters like many of you!

Thank you for helping me go! Thank you! Thank you! Thank you!

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Linnea has the same type of LC as I do, and is celebrating 13 years of living life since diagnosis!

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Canadians are loved, welcomed, and (this year) honoured with a special ribbon on our name tags. (I chose the purple one for fun!)

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Two of us came from Ottawa! So exciting! 🙂

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Five Canadians participated this year! Four of us are pictured here with LUNGevity’s inimitable Katie Brown! How many Canadians will go in 2019?

 

 

“You’re not alone”

Having “the conversation” with people you love is one of the hardest things after a cancer diagnosis. Three and a half years later, I clearly recall some details of those painful conversations when I told my friends or family that I had cancer – serious cancer.

The anticipation was horrible. The conversations were difficult, but there were many moments of love and generosity outpoured, both during the conversation as well as afterwards. So much grace that I had not anticipated!

I remember telling my small group. Our group has met weekly for several years to study the Bible and pray together. We had grown to love and trust each other, and these were friends I knew I could lean on. I knew they would be there for me, but I had no idea how much.

“You’re not alone.” The first words I remember hearing from my small group when I told them my sad news. Many more words of love, support and solidarity have followed, but these words echo out across the years. These words echo when my friends pass the tissues and cry with me, when they gather around and pray for me, when they bring me food and organize an army of beautifully generous meal preparers, when they get on hands and knees to clean my house, when they sit with me and listen, when they take my kids out for treats and listen, when they have our family over for an evening of fun, …

It’s not good to be alone. We need each other. We need people to laugh with and cry with. We were made for community.

The gifts that I have received in vulnerable times mean so much, and I am grateful beyond words for the goodness that friends, acquaintances, and even strangers have poured out over us since my diagnosis. God’s presence, faithful love and abundance is always with us – so many passages of Scripture remind us! We have felt embraced by love and generosity … never alone!

Another good gift I have received is the community of lung cancer patients and caregivers. People who’ve had similar conversations with their family and friends. People whose conversations have not always gone well.

I’m grateful for so many of these fine folks I’ve been privileged to get to know online through patient forums. These groups are a good source of support and information for me. I’ve grown to love these people and to think of them as my tribe!

And recently I got to meet some in person through LUNGevity’s Hope Summit in Washington DC.

I left Ottawa one cold and foggy morning in April and arrived in a completely different climate zone. Spring had sprung in DC. I had already missed the cherry blossom festival, but there remained much beauty to behold!

The Patients’ & Caregivers’ Summits began on Friday night, with an Advocates meeting for a number of us keeners on Friday. I arrived on Thursday morning with the whole day stretched out before me. I hadn’t ever met anyone from LUNGevity before, and I was a bit nervous about being there all by myself. I checked into the hotel, right by the beautiful Key Bridge (which crosses the Potomac from Rosslyn Virginia into Georgetown). I was just about to head out the door to find my way to some of the Monuments and Museums in DC, but got distracted by people arriving in the lobby.

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View of the beautiful Key Bridge & Georgetown from the top floor of the hotel

I couldn’t help but overhear one of the conversations … it sounded vaguely like it could be between two LUNGevity friends who hadn’t seen each other since last year’s Patient Summit! I approached and asked if by any chance they were part of LUNGevity, and that is how I met my first two LUNGevity friends, Ivy and Don! They were so friendly and invited me to join them and others for a walk across the Key Bridge to Georgetown for lunch! It was pretty easy to choose getting to know them over sight-seeing!

I never did make it to any museums or monuments, but I have no regrets! I was privileged to spend a lot of time meeting new friends and walking back and forth multiple times across that bridge! No one was left behind … not even people with diminished lung capacity! 😉

I learned more about advocacy and what it means to be an advocate or an activist. Thought-provoking! So many good conversations both as part of the summit and in the unscheduled moments!

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Chris Draft of the Draft Family Foundation: Inspiring Advocate!

So many exciting new advances in Lung Cancer treatments! So many resources! So much reason for hope!

One of the presenters was Dr. Ross Camidge, a well-known expert in my particular type of lung cancer. Late Saturday afternoon I sat beside him at an “Ask the Expert” table discussion. So many questions I could have asked him, but my brain was chock-full of information so we mostly chatted about cross-cultural differences (he’s from the UK and works at the University of Colorado Cancer Center), and he told me funny stories! 🙂

I came away encouraged and inspired! I came home with ideas and direction! I’m so grateful for all the LUNGevity folks who welcomed me, and for the anonymous donor who made it possible for me to be there. Thank you!

But mostly I came away with a strong sense that I am not alone! There are so many others walking similar paths, and I am grateful for the opportunity to get to know some more of my tribe! I’m grateful to be able to walk across that beautiful bridge! I’m grateful to have met these beautiful people who are walking a similar journey to me – patients and caregivers and others who support and advocate powerfully!

I hope to tell you more in future posts. There is always so much to say! 🙂

Here’s some exciting news about next week: I’m participating in a webinar for Cancer Coaches on Monday afternoon, speaking about my clinical trial experience. This is my first webinar, and I’m grateful for this opportunity! Cancer coaches are a real gift, and they can help you with difficult conversations!

 

 

2017: Grief and Hope

We’re grieving some disappointing news we received a couple of weeks ago.

My CT scan in January showed cancer. Ugh. This means the med I was on for almost two years is no longer working effectively.

Thankfully, this is not the end of the line: many new meds are being developed, and there were a couple of options for me to consider. The best option, we think, is a new drug which is only very recently available to certain cancer patients here in Canada. Good news that I fit the criteria. Good news that the timing worked out for me. Good news that the company agreed to release it to me on compassionate grounds. Good news that we don’t have to pay for it.

Yet, in the midst of all this good news … still the grief.

Naturally we hoped I’d have a longer run on Ceritinib. I had even started hoping that “cancer” would become a thing of the past, that we would turn the page and start a new chapter which didn’t include cancer. That in future there would be chapters which didn’t include daily meds, side effects, frequent appointments and tests. Maybe even one day cancer would be beaten! That day will come, but I don’t yet see signs of its coming.

The reality is that we don’t know the whole story. We can’t see the BIG picture. We have no idea what the future holds.

Thankfully I got the tests I needed quickly. Thankfully my oncologist worked late to fill out forms requesting the new drug for me. Mercifully it came surprisingly quickly. Thankfully I’ve been taking it for a week now and things seem to be going fairly well.

In the midst of disappointment, I keep praying to have my eyes and ears open. I keep looking for reasons to give thanks. I keep trying to discipline myself to stay in the present and live each day faithfully.

It’s hard to write this update. I don’t want to have to share bad news. I know you don’t want to hear it. I was blindsided by this news, and it hit hard. Surprisingly hard.  I’m still working through the grief. I started this post a few days ago, and I don’t even want to read it over to check my spelling & grammar. So I’m not going to! (I’m such a rebel!)

In the midst of this difficult news, there is good. There is hope.

Hope is the theme I’m focussing on for 2017. I chose it toward the end of 2016, and had no idea how much I would need it! One of the ways I am focussing on “Hope” is by regularly reading passages from the Bible which speak to this topic, and spending time reflecting and praying about them.

I recently read 1 Kings 19, which tells about the time the prophet Elijah was exhausted and fearful since his life was in danger, and he met with the LORD God. The LORD asked him twice, “What are you doing here, Elijah?” It’s a beautiful encounter in which the powerful God whispers to Elijah. Elijah learns that the story is bigger than what he perceives, and that the LORD has a good plan which includes Elijah. It reminded me that the Living God knows my name and all about my situation. Here is a prayer I wrote in in response:

Lord, thank you that we can come to you with the whole story, as we know it. You invite us to speak, to tell it to you. You listen and care for us. You are powerful & show your power … and you are gentle & show your gentleness.

You are more powerful than our enemies. You know our name. You know our need. You tenderly care for us. You give us a role to play in your Great story. You gently open our eyes and ears to know that the story as we know it is not actually the whole story. Thank you.

(If you’re interested in reading this passage, you can find it here: http://bible.oremus.org. Search 1 Kings 19)

Cancer is not the whole story. Leaving the clinical trial and switching from Ceritinib to Alectinib right now is not necessarily all bad. There may be good in it that I can’t perceive. Certainly the side effects so far seem much easier to tolerate, and for that I am thankful!

I’m praying for courage to boldly step into God’s Great story.

Prayers, warm thoughts, and words of encouragement are always appreciated.

Here are some glimpses of love, light and goodness from the past couple of weeks:

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The hibiscus plant is blooming again (and again)!

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I managed to root jasmine and geranium last Fall, and they’re starting to bloom!

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My first lemons are looking luscious!

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Homemade heart-shaped biscuits with our broccoli soup last night!

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I set foot on the world’s longest skating rink (wearing a cozy hat made by the sister of one of my favourite clinical trial nurses)!

 

In Ontario, cancer medications given in hospital (like IV chemotherapy) are provided free of charge, however cancer drugs that we take at home (like effective new pills) are often paid for by the patient. Sometimes they cost thousands of dollars per month. Many cancer patients face significant financial fragility, and should not have to pay for their treatment medication. The Canadian Cancer Society is making it easy to speak out against this unfair situation. If you are an Ontario resident, please consider taking action! Click here to contact your MPP about this important issue!

 

November Awareness

November is Lung Cancer Awareness Month. If you follow me on Facebook, you may have noticed I changed my profile and cover photos for November. Have you noticed any other indications of Lung Cancer Awareness Month? I haven’t seen many.

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Did you know that Lung Cancer is by far the most common type of cancer, and by far the leading killer (of all cancers) in Canada?

Did you know that Lung Cancer kills more than 20,000 Canadians each year? Did you know Lung Cancer kills more people than Breast, Prostate and Colon Cancer combined?

I learned these sad facts through my involvement with Lung Cancer Canada.  lungcancercanada.ca They’ve got a few events that I’m planning to be at this month, including the Lung Cancer Patient Summit in Toronto and the Lung Cancer Canada Evening of Hope in Ottawa. I’ll be speaking at the Ottawa event. Busy month for me!

November can be a rough month, especially if one spends time reflecting on numbers like these.

Lung Cancer research is shockingly under-funded, especially when compared with funding for other cancers which don’t take nearly as many people away from their family and friends. Lung Cancer accounts for 25% of all cancer deaths in Canada. Ugh.

I’m thankful that these numbers aren’t the whole story! I’m thankful for researchers and doctors and nurses and administrators and fundraisers and so many generous people who are working hard to change these horrible stats!

I’m thankful that this clinical trial I’m on is making a huge difference for me and my family and friends. I hope this drug will help many more who follow.

I’m thankful for hope, and those to seek to inspire it for lung cancer patients.

Some members of my lung cancer community talk about “Outliving Lung Cancer”,  “Shining a Light on Lung Cancer”, and “Hope Beyond Cure”.*  I am thankful for them and for the hope that they help inspire in me and many others. Hope is good!

*  outlivinglungcancer.com   hopebeyondcure.com

I don’t know much about serving as a patient advocate, and I don’t know if this is my calling, but I’m hoping I’ll learn more, meet some great people, and be encouraged at these Lung Cancer Canada events this month. I’ll let you know how it goes!

This month I’ve been enjoying lots of walks, aiming to gradually increase my fitness. Let me show you some of the beauty I’ve been privileged to see … even in November! 🙂  Thank you for journeying with me: it’s good to have companions!

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