7 Swans a-swimming – Silver Linings

Lung cancer is hard, but if you’re open you can meet some outstanding people that you wouldn’t have otherwise. There is grief, to be sure, but it is paired with the good gift and honour of knowing amazing people, the graceful swans or “silver linings of lung cancer”. So grateful! Research is helping more of us live longer. Please donate so more awesome people can live longer!

https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

6 Geese a-laying – Research

12 Days of Giving to Lung Cancer Clinical Trials

What is the connection between geese and lung cancer research? Why did “research” immediately spring to mind for the Sixth Day of Giving to Lung Cancer Clinical Trials?

The connection is the goose that laid the golden eggs. That is research. It may not feel like it to some researchers working away in their lab, but it is true!

This is a fabulously exciting time in lung cancer research! New treatments are being approved and people are living longer and better. We are expanding the horizon of the possible.

LUNGevity put out a compelling video last month with stories from people directly affected by lung cancer clinical trials. The link is below. Please take three minutes to watch it. “In the last three years, the FDA has approved more lung cancer treatments than in the last three decades, thanks to clinical trial patients.” The survivor stories are gripping.

I’ve been to just a few of the many conferences where lung cancer research has been presented this year, and it is phenomenal! There is no rush quite like the realization that thousands of brilliant and dedicated people are working hard all over the world to find cures for people affected by cancer.

We are seeing success! The research is working! New treatments for lung cancer are being approved at record rate! People are living longer and better.

We’re not there yet.

Research keeps laying golden eggs. Let’s be generous in our support.

Research works. Research matters. People matter. We need more research.

If you were thinking about giving me a Christmas present this year, or making a tax-deductible end of year donation, please give to lung cancer research here. Thank you.

#ResearchMatters

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

Click here to see the video It will open up to another page where you can click on the big picture to watch it. You can also see individual stories if you click on the smaller pictures below. It was an honour to be part of this project, because clinical trials matter. Thank you, Linda, Jack, LUNGevity and the whole team. You did a great job!

This image has an empty alt attribute; its file name is screen-shot-2019-11-30-at-4.21.51-pm.png
Click here to see the video

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou

5 Gold Rings Pillars of Lung Cancer

12 Days of Giving to Lung Cancer Clinical Trials

What do you think of when you think of lung cancer?

Before I was diagnosed, I did not know much beyond the connection between smoking and lung cancer.

For decades, an enormous anti-smoking, lung cancer prevention campaign has been waged. Huge amounts of energy and funding have been invested, but prevention alone is not enough. In spite of prevention efforts, the Canadian Cancer Society estimates that 29,300 Canadians will be diagnosed with lung cancer in 2019. That’s the size of a town. 

A town-full of people diagnosed with lung cancer each year.

Clearly a prevention campaign is not enough.

Candid conversations which evaluate the past and examine the present shine light on paths into the future.

It’s time for lung cancer to shift to a well-rounded campaign which dedicates appropriate resourcing to five pillars of lung cancer:

Awareness, Early Detection, Treatment, Research and Survivorship.

When we allocate funding appropriately, we will drive change in lung cancer survivorship.

A town full of people each year! Who will get lung cancer next year?

Anyone can get lung cancer.

The research we fund today might extend your life.

#ResearchMatters

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou

4 Calling Birds Sharing Stories

12 Days of Giving to Lung Cancer Clinical Trials

Here’s to all those who bravely share themselves, who share their stories. It can be hard to be vulnerable, to open up and reveal your authentic self, to share difficult details, engage in courageous conversations. It can be hard to go public with your story. Stories matter. Sharing stories shifts culture, drives change, changes the face of lung cancer. Here’s to all who brave those challenges who share their own stories.

Here’s to all who share lung cancer stories, hospital communications teams, writers, photographers, videographers, sound technicians, cancer centre public relations people, reporters, and all kinds of media and behind the scenes folks. Cheers to all those who are supportive and work hard to tell our stories well. Thank you for helping get our stories out, for they are important and need to be heard. You are changing the face of lung cancer, and we are grateful.

Here’s to Lizzie and Kayla, two brave young women who changed the face of lung cancer through sharing themselves, their stories, and fundraising. They knew the importance of sharing their story and the importance of raising funds for research. They were also both lovely people, kind and encouraging, loving and inspiring, deeply missed. What an honour to have known them.

Cheers to all those who join online lung cancer communities, who authentically contribute and genuinely care. That is another kind of brave and important story sharing! Online communities are powerful for support and information, and also fundraising.

I’m involved in several online groups, including one international ALK+ group. ALK is a rare kind of lung cancer. This group has almost 2000 members, and held its second annual summit this past August in Atlanta. Thanks to a generous family, I was able to go and meet some of my ALK family in person, and what a celebration that was! This group is so supportive and encouraging, and tremendously knowledgable. We heard from world leading oncologists at the summit, because this group highly values research. We know our lives may depend on being informed so we can gain access to clinical trials and latest treatment options. We know very well that research is life, and we fundraise for research into our particular kind of lung cancer (as do people with other kinds of cancers). The ALK+ group raised $500,000 USD last month alone, and this month they have secured matching grants up to $200,000 USD.

Research matters. People matter. More research means more survivors. Money = research = life.

Here’s to all who bravely share lung cancer stories! Here’s to all who tell them so well. Thank you. Stories matter.

Thank you for giving generously, for supporting lung cancer research, for opening pathways for more people to live longer and better!

To celebrate stories and survivorship, please give generously to lung cancer research!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #ThankYou

3 French Hens: Support Groups

12 Days of Giving to Lung Cancer Clinical Trials

All it takes is two. Put two lung cancer survivors together and anything could happen! Get three together and it could be a support group!

There’s nothing like meeting someone you really connect with! It has happened time and time again, the spark, the recognition that someone else gets it, they understand your experience, and they care.

Two survivors together is powerful. There is strength in numbers, and two is enough. Get three and now we’re really cooking! There is no telling what could happen!

Two survivors plus a social worker or psychologist, or any third who is willing to lead, and all kinds of good could come of that. Just ask Alyson and Christine about what happened in Winnipeg less than a year ago. The lung cancer support group they started in Spring of 2019 stood up and clapped with gratitude for them. They just celebrated the holidays with a party this week! What a difference this support group is making! Way to go, Alyson, Christine, Mike, Kelly and team!

It may seem hard to start a support group, but it’s not too hard. People do it all the time. Support groups are best practices and they do good for people around the world. It’s not too hard to start one. There are courses in leading groups, lots of books, experienced leaders, and other resources to learn from. Right in cancer centres all over the world, there are loads of trained, caring people working in psychosocial oncology. It’s not too late to learn. Alyson and Christine asked a lot of questions when they were getting started, and a social worker here in Ottawa helped them connect with teammates in Winnipeg. Reach out! Ask questions! Support groups are best practices, and lots of people could benefit if we had more of them.

We’re very grateful for the lung cancer support group in Ottawa. It was started (in October 2017) by Social Worker Diane Manii and a team here in Ottawa, with Lung Cancer Canada and the Ottawa Regional Cancer Foundation. It continues with their support and the support of The Ottawa Hospital. There is much generosity toward the Ottawa support group, and strong support within the group. The group has also started reaching out at the Cancer Centre with monthly hope tables (since August 2018) which are greatly appreciated. The group participated in Ottawa Race Weekend (#LungCancerStrong) in May 2019, raising funds as “Lung Cancer Team Canada” for Lung Cancer Canada, and growing numbers are participating in political advocacy for lung cancer.

I’m very grateful for the women and men I’ve met through our Ottawa support group. They are silver linings of lung cancer.

If you don’t have a support group and you would like to explore starting one, please start looking around and asking questions. You may be in an area where it may not look like there are enough people or resources for a lung cancer specific group, but don’t let that discourage you. People are willing to help; reach out!

Once you have three, there’s no telling what you can do!

To celebrate support groups and survivorship, please give generously to lung cancer research!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #ThankYou

2 Turtle Doves

12 Days of Giving to Lung Cancer Clinical Trials

Here’s to all the care givers, whether family or friends, and neighbours and even strangers who reach out with care, knowing that people going through lung cancer, or any tough time, need extra care. It’s not good to be alone. We all need team. Cheers to the people who reach out with kindness, compassion, care, comfort, empathy, gentleness, grace, support, understanding, muffins, meals, encouragement.

We all benefit from from kind words and actions. How much better our world is when people are uplifting, inspiring, cheering, caring and giving.

Reverend Dr. Martin Luther King said, Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.

Cheers to all the people who shine a light. Cheers to everyone who makes this world a better place by walking – even part of the way – through the valley with someone who has received difficult news like a lung cancer diagnosis. Cheers and THANK YOU.

It’s not good to be alone. We are better together, stronger together. #TeamMatters

Cheers to everyone who makes a difference through caring!

To celebrate care givers and survivorship, please give generously to lung cancer research!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #ThankYou

1 Partridge in a Pear Tree

12 Days of Giving to Lung Cancer Clinical Trials

Clinical trials mean life for people with lung cancer. They not only make a difference for people in the future. Clinical trials extend lives right now. Clinical trials matter!

Hope Matters. We all need hope, especially in hard times. Everyone goes through them, and in the midst of the darkness, hope is an act of defiance.

In Spring 2015, my health was bad. After a year and a half of first chemo then targeted therapy, I was weak and concerned that there might not be any more treatment options for me. My kids were 8, 11 and 14.

We were incredibly thankful for the clinical trial that my oncologist told me about. It brought hope, and I eagerly signed up. I wrote about it at the time, and here in An Act of Defiance, where I told the story of asking my family to plant an apple tree for me for my birthday in the Spring of 2015. The pear tree immediately brought to mind this story of hope.

Apple trees take years to bear fruit. Would I live to see it? Only one way to find out! Fast forward to 2019: we have harvested loads of apples and are very thankful I’m alive to enjoy them. Choose hope!

Hope is an act of defiance! When times are tough we can run low on hope. Hope matters. We need to nurture the hope within us, and when running low on hope, ask for help! #HopeMatters

That clinical trial kept me alive for over a year and a half, long enough for new and better treatment options to become available. I’m on my second treatment line since that clinical trial. I’m alive (and so very thankful) today because of grace and that clinical trial.

Research works. It is working to help give more and more people longer and better survivorship! Lung cancer research matters because people matter.

Four and a half years later I am filled with gratitude for that clinical trial and all who funded it, giving me the gift of extra years of life, such important years that I’ve cherished with my family and friends. My kids are now 12, 16 and 18. We’re incredibly grateful for these years.

Four and a half years later I know from the depth of my being that research matters. Four and a half years later I keep shouting from the rooftops: RESEARCH MATTERS!

I’m raising funds this month, posting these 12 days of giving to lung cancer clinical trials. Please give generously: your gift could mean years of life for someone like me, and what a difference that makes for so many!

To celebrate SiX years of lung cancer survivorship, please give generously to lung cancer research!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill

#12Days of giving to #lungcancer #clinicaltrials #HopeMatters #appletree #peartree #HopeisanActofDefiance #ChooseHope #Hope

SiX Years!

To celebrate SiX years of lung cancer survivorship, we are fundraising for lung cancer research! This is such an important cause because anyone can get lung cancer, even active moms of young children.

Join Team Jill to celebrate survivorship!

Lung cancer is the deadliest cancer by far, yet in Canada it gets less than 0.1% of all cancer donations from individuals and businesses.

Join Team Jill to celebrate survivorship and change that statistic!

This year, Team Jill is entering the 2020 Lung Cancer Survivors Super Bowl Challenge, raising funds for lung cancer research. Please join in and celebrate survivorship by supporting Team Jill!

Support Team Jill by:

  • making a generous donation
  • asking friends and family to donate
  • inviting Jill to speak at your workplace, community group or living room gathering
  • asking your colleagues to donate to lung cancer research
  • holding a bake sale or other fundraiser
  • sharing on social media
  • brainstorming ideas and acting on one or more
  • talking with Jill about your ideas, and working on them together

Team Jill’s page:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

Team Jill’s page for Canadian income tax receipts: http://donate.ottawacancer.ca/goto/jill

Support Team Jill now, because this special window is only open until December 29! We are entering the Super Bowl Challenge to raise funds for lung cancer research. This unique fundraiser gives lung cancer survivor-advocates the opportunity to compete against each other to raise funds for lung cancer awareness and cutting edge research. The top three fundraisers earn trips to Florida for the Super Bowl, Pro Bowl, and Taste of the NFL, but the real winner is the people (who may not have been diagnosed yet) who will benefit from the research.

People affected by lung cancer live with a sense of urgency! Lung cancer doesn’t wait. Join Team Jill now!

“This is a fight we can win, but it takes at team to tackle cancer, and we need your help,” says Chris Draft (of Team Draft & the Super Bowl Challenge).  Will you choose to stand up for your community?

Ottawa has a strong history of people standing up publicly to fundraise for lung cancer (many of whom are pictured above), but this is rare across Canada. I know of some and would love to hear of other efforts across Canada!

Stand up and support lung cancer research by supporting Team Jill now!

Thank you!

#ResearchMatters

Team Jill has chosen the Ottawa Regional Cancer Foundation as beneficiary for this year’s Super Bowl Challenge. 90% of funds raised will go to lung cancer clinical trials through the ORCF, provided we raise a minimum of $5000. USD.

The Super Bowl Challenge is a great opportunity to raise lung cancer funds and also potentially earn the experience of a lifetime, and speak about the importance of lung cancer on one gigantic international platform. Thank you, Team Draft and the NFL for this tremendous opportunity! Team Draft is an initiative of the Chris Draft Family Foundation dedicated to increasing lung cancer awareness and research funding; more information below. 

Team Draft’s Press Release:

For Immediate Release

December 3, 2019

Contact:  Randall Hawkins, rhawkins@chrisdraft.org

Team Draft Marks Giving Tuesday With A Call To Support Sixth Annual Lung Cancer Survivors’ Super Bowl Challenge

 (ATLANTA, GA) – Today is Giving Tuesday—a day designed to unleash the power of people to change their communities by supporting the organizations they care about.  On this Giving Tuesday, Team Draft is challenging people to help change the face of lung cancer by supporting its 6th Annual Lung Cancer Survivors’ Super Bowl Challenge.  This one-of-kind fund raising challenge gives lung cancer “survivor-advocates” the opportunity to compete to against each other to raise funds for critical public awareness of this often misunderstood disease and for cutting-edge research that is giving new hope to those battling it.  The top three fundraisers, announced on December 30, 2019, will earn trips to the Super Bowl in Miami, the Pro Bowl in Orlando, and the 29th Taste Of The NFL, an exclusive food and wine festival held in Miami the night before the big game where guests will savor dishes prepared by some of the top chefs in the country while rubbing shoulders with legendary players from all 32 NFL teams.

Team Draft was founded by former NFL linebacker and internationally-recognized health advocate Chris Draft and his late wife Keasha on November 27, 2011—their wedding day.  At the time, Keasha, a never-smoker, was battling Stage IV Lung Cancer after being diagnosed with the disease in December 2010.  Despite the diagnosis and knowing the long odds they faced, Chris and Keasha decided to fight back, and standing side-by-side, they launched Team Draft at their wedding.  Keasha died one month later.  

Since its founding, Team Draft has been dedicated to using its unique platform to raise lung cancer awareness and research funding through its Campaign To Change The Face Of Lung Cancer.  And the centerpiece of that Campaign is Team Draft’s annual Lung Cancer Survivors’ Super Bowl Challenge.  As Draft explains, “the Super Bowl Challenge gives us a unique opportunity to use the overwhelming media coverage surrounding the Super Bowl to raise lung cancer awareness on an international level.”

Team Draft’s efforts are paying off.  “The Challenge achieves some amazing things in terms of public awareness and changing perceptions about lung cancer,” says Dr. Ross Camidge, Director of Thoracic Oncology at Colorado University Cancer Center.

By giving survivor-advocates like Gina Hollenbeck, one of last year’s Challenge winners, a world-wide platform to share their stories, Team Draft is weaving a broader narrative about the true nature of lung cancer and the hope that now exists for survivors.  As Gina put it last year, “I am super excited about this opportunity to go to the Super Bowl with my husband, but I am even more excited to give lung cancer a voice”—a sentiment echoed by Jeff Meckstorth, another past winner.  “In many ways,” says Jeff, the Super Bowl Challenge is “a once and a lifetime opportunity to thank our community, fight for all lung cancer families, but most importantly to educate the public about the reality of lung cancer.”

In addition to raising critical public awareness, the Super Bowl Challenge also raises funds for lung cancer organizations and treatment centers across North America.  And because Team Draft’s National Campaign has always been about “we” and not “me,” just as Keasha intended, participating survivor-advocates who raise more than $5,000 during the Super Bowl Challenge may commit 90% of the funds they raise to a lung cancer organization or cancer center of their choice with the remaining 10% going to support Team Draft and its mission.  Of this aspect of the Super Bowl Challenge, Dr. Camidge says, “you need somebody working on the national level.  You need somebody working on the local level.  Everybody wins.”  

As Draft points out, “anybody can get lung cancer.”  “The disease doesn’t care where you live, but your zip code often determines the quality of care you receive,” he explains.  “In football, we understand the importance of the home field advantage.  By allowing survivors to direct where funds go, we’re giving people the opportunity to fight for better cancer treatment in their communities—to give themselves and their neighbors the home field advantage,” he says.  

But for the competing survivor-advocates, the Super Bowl Challenge is so much more than a fundraiser.  “Team Draft has really helped boost our family’s spirits during this challenging time,” says Dr. Lucy Kalanithi.  In 2015, Lucy and her husband, Dr. Paul Kalanithi, won Team Draft’s inaugural Super Bowl Challenge and were able to join Team Draft in Phoenix for Super Bowl 49.  Paul went on to write the bestselling memoir When Breath Becomes Air—a powerful and moving chronical of his life and lung cancer journey—before passing away at the age of 37.

While Team Draft hopes to have survivor-advocates from all 32 NFL cities participate in the Super Bowl Challenge, the ultimate goal is for all NCI designated cancer centers and lung cancer organizations—regardless of location—to identify and support a survivor-advocate in the Challenge every year.  “We know the key to winning this fight is for everybody in the lung cancer community to support one another,” says Draft, adding that “the only way a community or an organization loses is if nobody stands up.” 

On this #GivingTuesday, Team Draft is challenge everybody to make the choice to fight for their communities by joining the Campaign To Change The Face Of Lung Cancer by donating to the Chris Draft Family Foundation at www.chrisdraftfamilyfoundation.org or supporting a participating survivor-advocate in the Super Bowl Challenge at https://www.crowdrise.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge.  

“This is a fight we can win, but it takes at team to tackle cancer, and we need your help,” Draft says.  Will you choose to stand up for your community?

About Team Draft

Team Draft is an initiative of the Chris Draft Family Foundation dedicated to increasing lung cancer awareness and research funding.  To learn more or to donate, visit www.teamdraft.org.

###

Fundraising for lung cancer research in Canada.

When I sit back and reflect on 2019, it has been an amazing year. I’ve been able to meet so many new people, deepen relationships, and learn many things. The lung cancer community and advocacy work have both grown significantly. There are so many stories to tell and blog posts to write! 

When I look back, I clearly see growth in the numbers of lung cancer survivors who are stepping up and standing together to make a difference for others. This is largely due to the difference that new treatments make for us. Many of us benefit from targeted therapies, pills that we take daily which keep us alive and help us live fairly normal lives. Some benefit from immunotherapy, and the numbers of those who are doing well a year or more off treatment are increasing. Lung cancer research is making a difference. We rejoice and celebrate!

Anyone can get lung cancer. Increasing numbers of younger women are, and we have no idea why. We need more research to extend lives. More about this at the end of this post, and I plan to share some good news very soon.

The Ottawa support group is growing tremendously. The hope outreach tables that Andrea Redway organizes every month continue to make a real difference at the Cancer Centres. We have deepened relationships and built trust within The Ottawa Hospital, so that staff are excited about the tables and promoting them. Andrea, Kim MacIntosh and I gathered a team and entered race weekend as “Lung Cancer Team Canada”, raising money for Lung Cancer Canada (who sponsors our support group and provides patient handbooks to distribute), and showing that we are #LungCancerStrong! There are now two of us who serve as Patient Relations Advisors at The Ottawa Hospital, and I am slated to share my story there next month. I spoke at Grand Rounds with Dr. Terry Ng in June on biomarkers, a real honour and humbling experience. Another big highlight was our Second Annual Living with Lung Cancer Patient-Driven Summit in November, organized by Andrea, Dr. Paul Wheatley-Price, Jody Chaters and me, in partnership with The Ottawa Hospital, with support from LCC.

Across Canada, the most exciting highlight was the forming of a second lung cancer support group. Alyson is an advocate in Winnipeg who I’d been mentoring for some time, and she was doing great work. Wanting to grow the team, I kept looking for another lung cancer patient/survivor/caregiver in the city, who seemed interested in doing more. I found Christine’s wonderful blog and reached out to her. Together Alyson and Christine started connecting more with their lung cancer community, forming relationships with people at their cancer centre and looking for ways to serve their community. They wanted to start a support group. Our Ottawa Social Worker, Diane Manii, connected us with a social worker in Winnipeg, and the Winnipeg lung cancer support group started in the Spring! Group members stood up and applauded Christine and Alyson because they were so grateful they had started the group, which is flourishing!

Christine is in the middle with her husband, and Kim on the right.

I continue to serve as a patient research advocate, including as the patient representative for the Canadian Cancer Trials Group lung site. This Fall I served on the panel for the Canadian Cancer Society Team Survivorship Grants, and it was an interesting process, giving out $10 Million for cancer research. Sadly, none of it went to lung cancer research. I hope to learn why no lung cancer researchers applied for this grant money and work to drive change for the future.

The Canadian Cancer Survivors Network provided political advocacy opportunities at the local, provincial and national levels, and growing numbers of us took advantage. We are grateful for their ongoing commitment to and support of lung cancer survivors, and that they do very well at smoothing the pathways for us to be more easily involved in political advocacy.

It’s hard to say what my international highlight was for 2019, but I think it was participating as a mentor in the International Association for the Study of Lung Cancer (IASLC) inaugural STARS program for training patient research advocates. What an honour that Canada was chosen as one of only five teams, and both of us from The Ottawa Hospital! The six month process of mentoring Kim was enjoyable and rewarding. She has grown and flourished as an advocate. She is more knowledgeable and confident. She is finding her voice and using it in strategic ways. She spoke at our summit, has been tweeting effectively and growing relationships in Ottawa and beyond. It’s a joy to continue the mentoring relationship past the October endpoint of the program.

Part of the STARS program was held at the World Congress of Lung Cancer in Barcelona Spain in September. It was exciting to gather with so many people, all committed to conquering thoracic cancers worldwide! What a good gift to connect with advocates from around the world, united with shared passion. Some of us are exploring an international research project. I gave out many Canadian flag pins, generously supplied by MP Catherine McKenna, and also represented Canada by participating in a series of videos put out last month by Lung Cancer Europe (LUCE), which were filmed while we were in Barcelona.

It was great to gather so many Canadians at LUNGevity’s International Lung Cancer Survivorship Conference in Washington DC in April. LUNGevity shot video there which was made into a terrific video about clinical trials and released last month. It was an honour to be included. Through the generosity of a kind family, I was able to attend the ALK+ lung cancer conference in Atlanta in August, and while there I taught on Advocacy.

Social Worker Diane Manii and I presented about our Ottawa support group at the International Psychosocial Oncology Society Conference in Banff AB in September. I was surprised at how little was presented on lung cancer, but I learned a lot and met amazing people. Our presentation was very well received.

Participating in the American Association for Cancer Research’s Scientist <–> Survivor Program at their Annual Meeting in Atlanta in the Spring was a wonderful experience that opened doors. We learned volumes, met tremendous people, were greatly honoured as cancer advocates and came home changed. I am even more committed to lung cancer advocacy, and so very grateful.

I am also very grateful for Chris Draft who is a tremendous mentor to many in the lung cancer community, including me. Around the world, people speak highly of him and the difference he has made for them. He is making a real difference, supporting and encouraging us so that we can do more. His intentional engagement with a wide variety of people, and lengthy NFL experience result in a strong network with many connections who support his work in the lung cancer community. He is also a brilliant strategist who listens, thinks, and is not afraid to say what needs to be said. 

Advocacy is relational work, and requires candid conversations. One thing we often hear is that lung cancer is the deadliest cancer, yet receives very little funding for research. 

I’m a “glass is half full” kind of person who likes to focus on the positive and express a lot of gratitude. Effective advocacy requires an honest assessment of the problem. I’ll be honest with you: I’ve found it hard to speak or write publicly about one of the real problems with lung cancer research funding problems here in Canada.

If I may be open with you, for some time I’ve been aware that one of the big roadblocks to lung cancer research funding is a lack of invitations and obvious ways to donate. There aren’t foundations filled with people trying to raise money for lung cancer research. It’s rare to even find a link on a website to click on. Last year I asked the Ottawa Regional Cancer Foundation to put a link on their website to receive donations throughout Lung Cancer Awareness Month, and they did, which was wonderful, but it was only there for one month. Through my lung cancer journey, my experience is that it has generally been challenging to find a way to give specifically to lung cancer research.

It’s easy to donate to cancer in general, or to some other specific cancers, but the world’s biggest cancer killer? Very challenging here in Canada. This is a serious problem.

Lung cancer patients and advocates want more life-extending research (including clinical trials); researchers want more money. Lots of people care and are willing to give. I wonder how many have not yet given because no one asked them to give, or because they could not find a straightforward way to give.

If we want people to give to lung cancer research, we need to invite them, and also create clear pathways for them to give. 

I am passionate about this because research is extending the lives of so many people affected by lung cancer, and we need more research! We have been working behind the scenes to help open pathways for giving directly to lung cancer research here in Canada.

Research matters! More research means more survivors. Lung cancer research is cutting edge, exciting, life changing! We need to tell the stories and raise more funds for much needed research so that more people affected by lung cancer will be able to live better and longer.

Today is my six year cancer-versary. Look for exciting news about how we will celebrate!

#ResearchMatters #MoreResearchMoreSurvivors

Why I work hard as a lung cancer advocate:

Six years and seven weeks ago, like many other parents of young children in the schoolyard that year, I had a cold with a cough which persisted.

Six years ago I was constantly coughing, and beginning to realize that the inhaler the doctor prescribed wasn’t working. I coughed so much I had to step down from the choir I had been rehearsing with to sing Messiah. 

Six years ago we had started to suspect something was terribly wrong. I could hardly speak a sentence without coughing. When faced with a flight of stairs, I wondered if I could climb them. 

We knew something was wrong, but had no idea it could be lung cancer. I started undergoing a myriad of tests, and when we finally got my diagnosis that December, it seemed impossible. When I learned I had advanced lung cancer I had no hope.

I did not know what to expect, but I never expected this: that six years later I am living life!

I had no idea I would still be alive six years later, never imagined I could be this alive and vibrant.

I never dreamed I would live this long. 

Shortly after my diagnosis I read the research on Crizotinib, the first new targeted therapy pill my oncologist mentioned. I rejoiced that so many of the people on Crizotinib were still alive six months later. Six months seemed like such a long time, such a lot of opportunity to live, such a great gift for someone with lung cancer…  and here I am, six years later.

Six years: chemo, Crizotinib, Clinical Trial: Ceritinib, Alectinib, Lorlatinib. Cutting edge new research keeping me alive these years. Every time the cancer outsmarted a med, a new treatment has been available – typically just in the nick of time – so very grateful! Research is giving me so many days to celebrate, gifts of countless moments, memories, milestones.

My children were 6, 10 and 12 when I was diagnosed. They have had a Mom right with them as they’ve grown these six years. My daughter is now 12, my sons 16 and 18. My oldest started University this Fall (Electrical Engineering and Physics, still living at home!). I’m still in the picture. I still get to talk with them, cook for them, hug them, encourage them, love them.

“Grateful” is only the beginning of how immensely thankful I am to be alive and living so well six years later. I thank God for lung cancer research and the difference it makes. 

#ResearchMatters