Scan results

Scanxiety is real… the anxiety many of us can feel around scan time. Most who’ve been diagnosed with lung cancer are on treatment, whether it’s a targeted therapy in pill form, chemotherapy, immunotherapy, or a new kind of therapy devised by researchers to keep us living longer and better. Whether alone or in combination, most are on treatment and get regularly scheduled scans to see if the treatment is working.

Sometimes some get cues that the cancer may be growing or shrinking, side effects that may be indicators, that might give an idea of what is happening inside our body. Often it’s a mystery. Lung cancer can be sneaky.

My 13th round of chemo was on Thursday August 12. I also continue to take a daily targeted therapy, Lorlatinib. This combination has growing popularity with some of the top lung cancer doctors in the US. I’m thankful to be able to have access to both treatments here. Lorlatinib is very effective at keeping the cancer from spreading to the brain. My CT scan was Monday morning (the 23rd), and results just came in: all is stable or slightly better! Such great news when someone gets good scans!

In the past few months, Several dear friends have gone through progression and questions about what kind of treatment path to take forward. Some have faced serious health challenges. These can be scary times. So grateful every time there is good news. We keep holding onto hope for more research to bring more treatment options which will help further extend life. Often there is uncertainty, and it can look like the research may not be keeping up with the need. And then there’s the issue of access: what about people who cannot use a treatment because they can’t get it? Maybe it’s too expensive or not available where they live or when they need it?

Lorlatinib is a drug that has helped keep me alive and living very well for years. I’m very grateful for it and have been working with others for some time to get better access to Lorlatinib for more Canadians. I’m thankful for the compassionate release program from Pfizer which has meant that every month a package of life-extending medicine, probably worth over $10,000/month, is delivered to the door at no charge. This morning, a cheery FedEx employee handed over the small box with a lovely greeting. He had no idea how thankful I am for that delivery.

Very grateful to continue to receive free Lorlatinib and that scans are good. Very thankful for researchers, clinical trials opening space, terrific care teams, dedicated advocates, and hope. It’s so important to hold onto hope.

(Apologies for the older photo’s. My phone is not currently working.)

Our ALK+ Family Summit July 31 – August 1

I spent the week-end enjoying our ALK+ Family Summit, and learning about the latest in research for our particular kind of rare lung cancer. Don’t let the term “rare” fool you: we had over 700 people register for our summit. I enjoyed the hospitality of Jo-Ann and Craig Smith for the first day: together we watched the Summit in their awesome space and enjoyed great conversation while they served terrific food and drinks.

I opted to participate in the Summit from home on Sunday since I was leading a “Breakout Room”, which meant that I talked about The White Ribbon Project five times in a row, to five different groups of people who came into the breakout room for 20 minutes each session. It was a great was to spend a chunk of the day, interacting with people I knew, meeting people for the first time, and talking about one of my favourite subjects: lung cancer advocacy!

The White Ribbon Project is an inclusive, unbranded, international grassroots movement, changing public perceptions of lung cancer. As I said in my presentations, we are looking for regional ambassadors – champions – who will host Ribbon Builds and distribute Ribbons. If you are interested in learning more about The White Ribbon Project, please check out our new recently launched website. You can also connect with us through email or social media.

I filled the slide deck with pictures of some amazing people who are part of The White Ribbon Project, many of whom are part of our ALK community, some of whom participated in the breakout room today. In case you’re interested, I’ve put copies of most of th slides below. Heidi and Pierre could not be part of the presentation today, but generously pre-recorded a five-minute video which was part of the slide deck, but not included here.

A big thank you to everyone who is in the photo’s and/or took photo’s! Special shout-out to Heidi & Pierre, Chris, Anne, Michelle, Bonnie, Rhonda and Dave – The White Ribbon Project #team.

www.thewhiteribbonproject.org

Quick update

A quick update to let you know I’m doing well, and I hope you are too. I’m enjoying this beautiful summer, spending some time with friends, doing lots of jobs around the house, and loads of lung cancer advocacy.

Very thankful that the chemo is working. Twelve rounds since November 2020, and I’m feeling well, better every round. So very thankful, and holding onto hope.

If you’re facing chemotherapy and feeling nervous, be assured that chemo today is not like it used to be, not like the movies have portrayed it. Many people never lose their hair, and there are great new drugs to deal with nausea. It’s much more effective now, and much less toxic. Cheers to researchers! #ResearchMatters

Cheers to everyone who has ever gone through chemo, or supported someone going through chemo. #SupportMatters Being on chemo can be a mental / emotional battle as well as a physical one. It makes a real difference to receive kindness and care. We all need support and encouragement.

A big shoutout to my great care team, including the nurse who found a vein on the first poke today. That’s always good! My oncologist is kind, humble, wise, hard-working, and a great oncologist. So much to be thankful for.

Shout outs go to researchers and all who work to make the world a better place for people who are affected by cancer, whether it’s awareness, early detection, biomarker testing, treatment, research, survivorship…

Sending love out to all who care about and support me. It means so much. Thank you.

#TheWhiteRibbonProject now has our website up: TheWhiteRibbonProject.org

#thankscoach

#12rounds

#grateful

Together We Make a Difference

A huge thank you to all you wonderful people who wrote letters, called and/or emailed for people with ROS1 to get access to Crizotinib. I asked you in a blog post on September 13, 2020, to write officials requesting for Crizotinib to be added to the formulary for people with ROS1 lung cancer. I heard from over 30 of you who took the time to help save lives. Thank you! Together with all the other people who communicated, our voices were heard and Crizotinib was approved! Together we make a difference!

This is wonderful news for so many people, including B. who dropped by to chat and pick up two The White Ribbon Project ribbons today. She was diagnosed fairly recently with ROS1 lung cancer and is taking Crizotinib. She’s a lovely person with a family and strong support community who love her. It meant so much to give her two ribbons with love: one for her and one for her to give to a supportive friend.

Thank you to Bill and Lisa Weir, Canadians who make each ribbon with love and give each ribbon with love. Following the lead of Heidi Nafman Onda and Pierre Onda , making and giving ribbons with love. Thank you Lisa Weir and Bill Weir for working with care, ensuring that each ribbon is exactly like the originals. Same measurements, same materials, same fonts, same stickers. Strength in uniformity. Love in every single detail. #thewhiteribbonproject bringing people together, reminding us we’re not alone. #love #team

#thewhiteribbonproject #inclusive #supportive #anyonecangetlungcancer

Thank you!

Made in Canada with Love

Strengths, Stories and Opportunities

Team Draft works hard every day to encourage, uplift and strengthen lung cancer advocates. I have been the beneficiary of that encouragement and advocacy training in various ways since I first heard of Team Draft through this video What’s the Biggest Cancer Killer? made by Team Draft with our friend Keith Singer and the Catch it in Time team. I met Chris in person in 2018.

Team Draft has traveled worldwide to connect with the lung cancer community in cancer centres – over 60 in the first year – as well as meeting people in restaurants, at games, and in people’s homes. It matters to Team Draft to really get to know people and help them develop their strengths. Seeing people in their contexts is the best way to more fully understand their story and better support them. Team Draft works strategically, developing leaders and encouraging everybody.

With COVID Team Draft has quickly pivoted to making the most of opportunities. Thanks to online platforms such as Zoom, they meet regularly with a wide variety of people in many places, right from the comfort of home.

Team Draft values the importance of following best practices, such as researching our audience and tailoring our messages to our listener. Team Draft embraces the power of story and audience-appropriate messaging for advocates: “We have to know our audience and we need to know our ask.”

Through Zoom, Chris has introduced some lung cancer advocates to his friend Dr. Dennis Rebelo, a professor, coach and consultant who has developed an effective method for helping people tell their stories better. It’s called StoryPathing, and as we’ve started down this path it’s helped us more deeply explore the power in our stories. This process has great potential for helping advocates tell our stories better.

Advocacy is about relationships and storytelling. More effective storytelling means more effective advocacy and in this case, that can mean better outcomes for people affected by lung cancer.

I’m pumped about the possibilities!

Thank you, Chris Draft, Team Draft, and Dr. Dennis Rebelo!

Four Down, One to Go

Many thanks to all you who have prayed, called, and messaged this week while I’ve been undergoing daily radiation treatments. I’m very grateful for your care and support. Cancer can be hard in many ways, and many of you know firsthand what it is like to be diagnosed or to walk with someone diagnosed with cancer.

We all need support, and this week has powerfully reinforced the difference supportive caring people make for someone facing cancer. Treatments this week have been challenging, and your words and actions have tremendously encouraged and helped. Thank you.

Never doubt the difference you can make for someone.

This is why I’m so passionate about lung cancer support groups. They can make a huge difference! It doesn’t take much to start one up. If you’d like to talk about it, please reach out. Helping get another support group going is definitely something worth investing time and energy in!

Four down and one to go! I’m so grateful I’m not journeying alone.

(All photo’s were taken prior to COVID-19, except the one of our Ottawa lung cancer support group meeting by zoom.)

A day in the life of an advocate

Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!

Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …

International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful

Chris Draft (far right) with some of the terrific lung cancer advocates from Australia, the Netherlands, Mexico and Canada at World Conference on Lung Cancer, Barcelona, 2019.

A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.

My awesome oncologist, Dr. Garth Nicholas, who is part of this team (photo taken before COVID-19)

What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.

The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!

The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.

There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!

My day was filled with conversations, emails, messages and more, but before it ended I also decided to participate in research. I filled out the first survey for the Canadian Cancer Trials Group study: CCTG SC27 – The Impact of the COVID-19 on Canadians Living with Cancer. If you would like to learn more about participating in this study, please click here!

There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team

photo credit: Chris Draft

Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude

World Lung Cancer Day 2020

World Lung Cancer Day is August 1, and this year the focus was on team building for a group of over 30 lung cancer advocates from across North America! Team Draft gathered advocates online to welcome author and inspirational keynote speaker Marques Ogden as he – for the first time – shared his own personal story of losing his grandmother, the matriarch of his family, to lung cancer.

Not everybody is ready to be an advocate after they lose someone they love. We recognise that this can be a very hard thing to do. It takes courage to share one’s story, so it is important that we welcome people and provide a supportive environment that allows them to share their story. We are very grateful to Marques for opening up and telling us his story.

Marques Ogden’s life story is compelling, and he tells it well. After his six season career as an NFL offensive linesman, he navigated the challenging transition to life after football. He started a construction company and grew it to one of the largest in Baltimore Maryland. Marques shared openly about mistakes he made, and the bad company culture he allowed to grow. He went from being a multimillionaire to going bankrupt in a matter of months, then did some significant self reflection before charting a new course and pursuing it with steadfast determination. He is now a key note speaker, executive coach, business leader and author.

Marques has wisdom to share about life, business and teamwork. He shared some important words for lung cancer advocates, and we were taking notes! Lung cancer needs more advocates who work together as a team.

Marques’ words sparked thought and conversations about team building values, culture, communication and perseverance. He challenged us to be intentional every day, and to work together as a unit to reach our goals. Chris Draft also spoke about the importance of team, and how team building needs work, time, relationships, and valuing skills and strengths.

Thank you, Marques, for sharing wisdom, and also your personal lung cancer story. Thank you, Team Draft, for setting up this World Lung Cancer Day celebration and team-building opportunity. Thank you also for this great book which I’m enjoying reading.

Thankfulness at the End of the Decade

Thank you for supporting Team Jill in the Super Bowl Challenge! Together we raised over $1000., whether you count in Canadian or American dollars! That is over $1000 that would not have been raised if Team Jill hadn’t taken action to raise lung cancer funds, and if some of you hadn’t taken action to give them. Thank you! Thank you also for your many encouraging words of support, the “likes”, retweets, shares, etc. This kind of support matters too! While writing this, another person gave $50. Thank you!

All together so far, the Super Bowl Challenge has raised over $77,000 USD. That is money that might not otherwise be raised for lung cancer. The SBC has ended, but you can still give until Feb. 3rd. Thank you Chris Draft and Team Draft for the work you put in to make the Super Bowl Challenge happen this year. What a great opportunity for cancer centres and other charities to raise funds and get huge publicity for the important work they are doing!

As the year-end draws near, I’m thankful for life and meds that help keep me healthy, thankful for all I was able to accomplish this past year. A lot of the work I’m doing is new for lung cancer. For example, I’m the first Canadian Cancer Trials Group lung site patient representative who has been affected by lung cancer. Before my oncologist asked me to sign up, Carol had been kindly representing lung cancer patients, even though her cancer experience was a different kind of cancer. We owe a debt of gratitude for the good lung cancer work being done by people not affected by it. Much lung cancer work has been left undone. Many groups are only starting to wrestle with how to include the patient voice. Some are not yet convinced of its value. Being the first in new territory is harder, like carving a path in the jungle. (My University degree in Engineering where I was sometimes the only woman in classes of a few hundred men, and summer work where there was no women’s washroom, helped prepare me for this, along with summer work tree planting and working as a surveyor – not in a jungle, but in all kinds of terrain in the Ottawa region.) I work, not just to do the work, but also to carve paths to (hopefully!) make it easier for others who will come after me.

There are a few interesting projects in the works, which may be announced soon. I’m also sharing my story at my hospital in January, and continuing with my usual volunteering as patient representative for the Canadian Cancer Trials Group, The International Lung Cancer Foundation, and at The Ottawa Hospital. Our monthly support group and outreach tables at the Cancer Centre will be ongoing as usual. Too many to list them all!

Here’s a great opportunity for anyone affected by lung cancer in the Ottawa area. Back in November, Dr. Dugald Seely, Founder and Director, Ottawa Integrative Cancer Centre and Prof at uOttawa, set up a meeting with Andrea Redway and me. He wanted input from people with lung cancer experience as his team worked on developing a program for people affected by lung cancer. (He had also spoken at our summit in November.) So nice when others take the initiative for lung cancer. The free program starts January 23, and runs Thursday afternoons. Here’s the link for info and registration. Thank you, Dugald and OICC!

As 2019 draws to a close and we make the most of each last day that we are given of this decade, I have been doing a lot of reflecting. I may share some of it with you, but in case I don’t blog again before January, Happy New Year to you and yours! May the next decade be filled with love, joy, peace and thankfulness.

12 Drummers Drumming – Advocates

12 Days of Giving to Lung Cancer Clinical Trials

Drummers keep time. We’re loud. We call out, “We are here!” We have picked the time and place and we are letting you know where we are. We are not going to hide. The place is here. The time is now.

Drummers beat out the call to action, heart cry of the advocate. Advocates bring sense of urgency. Some of us embody it. We know lung cancer is life and death and we are not willing to wait!

Advocates are trained to watch and listen, ask questions, spot gaps, speak appropriately, and drive change.

Advocates are trained in best practices and how to apply them.

Advocacy is #team. We all need a team. We are stronger together, better together. In lung cancer we need everyone, patient, survivor, caregiver, friend, any age, every stage, anyone, everyone.

Our hope is that in 2020, the lung cancer advocacy community keeps growing, supporting, learning, applying best practices, driving change. We are powerful, especially when we are a good team.

We beat the drum. The place is here. The time is now.

We are here. Gather together. Support each other. 

We drive change.

We call for action.

TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight*. Please give and ask people to give. Advocate for lung cancer clinical trials today!

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 #TeamDraft #ChrisDraft #Please #Give #Advocate #ThankYou #lcsm

* Please give. TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight: technically very early tomorrow morning – 3:00am New York City time.