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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Marathon Weekend

Like many weekends for most of us, this past weekend was a marathon for our family … but what made it different was that my husband actually ran the marathon, and the kids and I volunteered at it!

Jono has run a few marathons before, but this time he ran to raise funds for the Ottawa Regional Cancer Foundation. Thanks to the generosity of a cheering crowd of supporters, not only did he run a personal best 3:25:29 but he also raised $1725 (so far)! We are happy with his achievements, and so glad that he is recovering well from the run.

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No pressure, but if you want to give, there’s still time: http://ottawacancer.kintera.org/ottawaraceweekend/jono

Speaking of recovery, at the end of each race is the “recovery” area where volunteers give food and drink to the runners. The kids and I volunteered there on Sunday, setting up and handing out yogurt, chocolate milk and bananas. It was a privilege to be part of the team who served 47,000 runners this weekend. So many of the runners expressed gratitude for the volunteers who served in a variety of ways. We were there for about 4 hours, and I am thrilled to report that I was able to complete my shift! I was exhausted afterwards and very stiff, but I also recovered well from my volunteering “marathon”.

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A quick photo with our friend who coordinates volunteers and generously welcomed us to her team. (My daughter was the youngest there.)

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Calm before the storm! It was a privilege to be part of the team who served 47,000 runners this weekend with a smile! Very well organized effort!

The past few months I’ve been deliberately pushing myself harder and harder to try to increase my endurance. Life is a marathon! I’m noticing my stamina has improved and also my ability to bounce back after exerting myself. I’m still not well enough to take on a job, but if this trend continues, I’m very hopeful!

Also on the weekend the kids and I put on a lemonade stand fundraiser for the Cancer Foundation. We surpassed our fundraising goal and raised $225.25! Thank you to all who encouraged our kids and donated!

We’ve been fundraising because I have the energy to, and because we are grateful for the ways the Cancer Foundation has helped our family and many others, through clinical trials, workshops, coaching, classes, etc. I have recommended their cancer coaching to two people this week alone!  The Ottawa Regional Cancer Foundation supports people who have been diagnosed with cancer and their families and friends. For more information: http://www.ottawacancer.ca

Now it’s time for a break from fundraising, time to focus on the next chapter, the next segment of our race. I don’t know what’s next, but I’m looking forward to it!

How’s your marathon going? Is it time to take a break from something? Time to dive into a new challenge? Time to keep on keeping on in some rough terrain? Are you running a good race? Looking forward to what’s coming next? I hope you are, and I hope you are surrounded by teammates who cheer for you and support you!

Thank you for cheering us on in our marathon … we all do better with encouragement and support, don’t we!

 

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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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!