RIP Kim MacIntosh, Lung Cancer Survivor Advocate

Before I met Kim MacIntosh I knew I would like her, because of the way my friends were speaking of her.

I couldn’t go to the World Conference on Lung Cancer in Toronto in 2018 because I had suffered progression. Andrea and Peggy promised to tell me all about it when they came back, and they did!

There were so many exciting stories: people they’d met, promising new research, fun times, but of all the details in all the stories, Kim was the person who stood out by far! I couldn’t wait to meet this lung cancer survivor advocate that I’d heard so much about.

Kim started driving in to our Ottawa lung cancer support groups – more than an hour each way, and she fit right in with the group. It was so good to get to know this lung cancer sister.

Kim cared about people. She deeply loved her family: husband Dean and daughters Ceilidh and Sadie, her parents, siblings and extended family; and friends, especially her besties. She spoke often of them and participated in all kinds of traditions with them that filled her calendar with meaning, joy and laughter. She knew half of Cornwall, and a good deal of other people as well.

Before Kim was diagnosed with lung cancer she worked as a nurse and had a fierce passion for advocacy. Kim brought her medical and scientific knowledge, her understanding of how the system works, and her prior passion for people and advocacy to her lung cancer advocacy. She could often be overheard encouraging people to apply for their disability parking pass or tax credit, reminding them that they were entitled to it and telling them step by step how to go about applying. Kim cared about people.

Andrea and I compiled this list of highlights of Kim’s lung cancer advocacy:

– early member Ottawa Lung Cancer Support Group (October 2018)

– IASLC World Conference on Lung Cancer, Toronto 2018

– staffed outreach tables at The Ottawa Hospital Cancer Centre

– shared her cancer story at the Ottawa Lung Cancer Patient Summit, November 2019

– went to LUNGevity conference in Washington DC, 2019

– member of the EGFR Resisters

– started the EGFR Canada fb group

– early leader in the Canadian Lung Cancer Advocacy — Breathe Hope fb group

– very strong presence on Twitter and on fb. Shared lots of research etc.

– co-designed the Lung Cancer Strong tee shirts and organized the ordering, printing and distribution

– completed IASLC’s STARs Program in 2019 and attended WCLC 2019 in Barcelona

– participated in June 2019 CCSN/LCC Breakfast and meetings with MPPs on Parliament Hill

 – made a video on her experience as a LC patient for CCSN’s Right to Survive campaign

– did a podcast for LCC with Dr. Paul Wheatley-Price

– member of Programs Committee, Lung Cancer Canada

– participated in The White Ribbon Project for lung cancer awareness and travelled in both Ontario & Quebec distributing white ribbons to lung cancer patients, advocates & medical staff

Kim was a good friend to many, a devoted wife and mom, and a fierce advocate for lung cancer and other important causes. She was deeply loved and she is missed. RIP, Kim, and thank you.

Kimberley Ann (Moran) MacIntosh September 30, 1967 – November 17, 2021

Kim’s obituary can be found at this link.

#hope #team #gratitude

Happy One Year Anniversary to The White Ribbon Project … What is your Cancer Center doing for Lung Cancer Awareness Month?

I first met Heidi in a Zoom call organized by Team Draft the summer of 2020. Right away it was easy to see that she is a loving person who genuinely cares about people. A few months later she told us (in a zoom call organized by Team Draft) that she was fed up with her cancer center’s reluctance to promote lung cancer awareness, that she had asked her husband Pierre to make a big white ribbon for their door, and then they started making them for friends and strangers. She generously sent them out to everyone on that call, even me in Canada. I was the only Canadian on that call and, knowing that international shipping can be expensive I didn’t want to ask. Heidi’s love and generosity made my concerns seem ridiculous. She wanted to give ribbons to everyone willing to stand up for lung cancer, to make people feel cared for. Heidi is rare and meeting her was very special.

Those first few ribbons have multiplied into a movement! Hundreds of lung cancer advocates are rising up with their ribbon, taking photo’s and posting on social media, raising lung cancer awareness across the US and Canada, and the Netherlands, the Philippines, Ireland and expanding across Europe in partnership with Lung Cancer Europe, as well as other growing international partnerships. Together we are driving change.

Heidi and Pierre have made 832 ribbons, and also assisted at other builds as they traveled around the US on The White Ribbon Project Tour. Heidi and Pierre have paid for all the ribbons they have made and sent, and all their expenses on the six-week tour. As they travelled around, rather than taking donations, Heidi and Pierre encouraged people to invest in their local community, to form a team, host a build or contribute to one, participate in making ribbons with love and giving them with love. Teams have been forming in many communities, and this is where the action happens!

We are very grateful for teams in Canada like Lisa and Bill Weir who have made 244 ribbons, Alvin and Carolanne Johns who have made 45, the Monds’ team who made 20, and others who are in process of team building.

The Ottawa team held a community build in solidarity with The White Ribbon Project Tour. People contributed their time, talents, supplies, food, drink, even hand sanitizer. In keeping with the inclusivity of The WRP, patients, caregivers, survivors, family, friends, doctors, nurses, administrators, politicians and others were invited. There was much love and laughter at our outdoor venue that hot August afternoon. What a gift to be together, building relationships as well as ribbons, loving and serving our community.

The Ottawa team knows that advocacy is relational work which doesn’t just happen during Lung Cancer Awareness Month in November. We are committed to making people aware and making people feel loved year round. That’s why we set up outreach tables in our cancer centre to welcome people, show them love and give them information. We started annual summits to gather the community and offer learning opportunities. We also gathered a team to put together a welcome package which includes a letter from lung cancer survivors with contact information. This is given out year round, to everyone newly diagnosed. The Ottawa team made a choice to be involved in making people aware, and making sure people know they are loved.

What is your cancer centre doing for Lung Cancer Awareness Month this November? What is the plan for lung cancer every day?

The White Ribbon Project is committed to making sure people affected by lung cancer know they are not alone. Together we are committed to changing the public perception of lung cancer. Together we are driving change. It takes a team of people who decide to take action to get the job done. Let’s work together! 

#TheWhiteRibbonProject #love #hope #inclusive #unbranded #international

www.TheWhiteRibbonProject.org

Happy World Cancer Research Day!

Biomarker Testing + Research + Access = Life

I’m alive today because of biomarker testing, research, and access to new treatment options. Yes, and great care from my oncologist, Dr. Garth Nicholas, and healthcare team at The Ottawa Hospital Cancer Centre.

I was diagnosed with stage 4 ALK+ lung cancer in 2013 when my children were only 6, 10 and 12.

I started on chemo, then four different targeted therapies … Most treatment lines lasted only a year or two; each gift of time meant more life, more time with family and friends, more opportunities to serve as a lung cancer advocate

Every month, every year has meant memories and milestones, opportunities to celebrate life and be with my kids as they have grown. 

My youngest was just about to start grade one when I had a cold with a cough that wouldn’t go away which was eventually diagnosed as lung cancer. Now she is in grade 9, just started high school. My middle child can play almost every musical instrument and will graduate high school this year. My oldest, who was in grade 7 when I was diagnosed, is now in third year university, studying Electrical Engineering and Physics.

I can’t tell you how thankful I am to still be with them. Very thankful for biomarker testing, research and access to new treatments… and my terrific healthcare team.

Targeted therapy is such a game changer. New targeted treatments are so much better than chemotherapy – it’s a night and day difference – and these new treatments keep getting better and better!

Targeted therapy means more energy, more good days, more ability, more time for the people we love, more time for what matters, more life.

My children are my top priority. I am also passionate about lung cancer advocacy. I started on Lorlatinib in 2018, and it has given me great quality of life, so I have been able to invest about 30-40 hours a week in lung cancer advocacy.

This is an excerpt from a presentation I’ve been making (as part of a team) to a number of groups this month. Next come many slides with pictures and quotes from people affected by lung cancer, people who I love, who are like family to me. They are living life more fully, because they have access to new life-extending treatments called targeted therapies. These are people who matter and are worth fighting for. I’m honoured to “bring them with me” as part of these presentations, and appreciate very much their willingness to share pictures and stories with the goal of increasing access to new drugs.

The presentation is about the importance of fighting for people to get access for new targeted therapies, because this is a matter of life and death and people matter. Research alone isn’t enough. We need to enlarge the boundaries of our concept of research to also include biomarker testing and access.

What are new drugs worth if we don’t do biomarker testing to find out which people will likely benefit from the new treatment? With 100% biomarker testing we will know specifically which type of cancer more people have, and be able to match more people with effective treatments. With 100% biomarker testing, we will also be able to more quickly accrue more patients to our clinical trials so the trials will show results more quickly, and effective new treatments can get approved and funded sooner.

What is the value of researchers working hard to develop effective new treatments, if people cannot get access to them? Access matters. It is often a matter of life and death. We must work to close the gaps and make sure people can benefit from research. Could you imagine how hard it would be to be a dying cancer patient who knows there is an effective treatment that would very likely extend their life, but they can’t get access to it? How hard would it be to be the patient’s loved one? The patient’s oncologist?

Biomarker Testing + Research + Access = Life

On this World Cancer Research Day, let’s celebrate research and researchers! Let’s celebrate fundraisers, administrators and patient partners! Let’s celebrate the entire research team! Let’s broaden our concept of research and fight together for more people to benefit from effective new research.

#BiomarkerTestingMatters #ResearchMatters #AccessMatters

#Hope #ResearchWorks #WorldCancerResearchDay #PeopleMatter

(Note: photo above is Dr. Vicky Forster, Toronto; photo’s are all pre-COVID.)

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

Kindness

Last June I asked a really lovely medical oncologist/researcher friend, Dr. Narjust Duma, if she knew the YouTuber @chubbyemu. I was thinking that my son would really like it if @chubbyemu reached out to him. COVID was turning everyone’s world upside down, and I knew my son was a big fan, so I hoped it might help make his world a little better. Turns out she didn’t know him, but chose to reach out on our behalf anyway, and @chubbyemu said he would be happy to connect with my son. I got all teary when I read her message, and I’m feeling the emotions again as I reflect on it now. So very grateful!

@chubbyemu emailed my son, and my son was thrilled. I was very excited too, and messaged @chubbyemu to thank him. I also mentioned that if he ever needed a lung cancer advocate, he could reach out.

In September, @chubbyemu messaged to ask if I would be willing to share my lung cancer story. A conversation ensued, culminating in this video shoot and release in March. Here is the link for the video on his @HemeReview YouTube channel: Interview with a Stage 4 Lung Cancer Survivor (Jill Hamer-Wilson) .

What an exciting experience that was, especially since we were filming it separately in different countries, and Dr. Bernard was masterminding the production and helping me navigate various technical challenges at a distance!

Naturally, The White Ribbon Project was part of the 25 minute interview, and we were honoured to send Dr. Bernard (aka @chubbyemu) a White Ribbon, with sincere thanks for his support of people affected by lung cancer and The White Ribbon Project.

It’s so important that people affected by lung cancer know that they are not alone, they are loved, they are welcomed, they belong, you are loved, you are not alone. If you or someone you know would like a White Ribbon, please reach out. The White Ribbon Project is about #love and #hope.

It also matters that we recognize The White Ribbon Project is inclusive, including lung cancer doctors, nurses, researchers, fundraisers, administrators, physiotherapists, social workers, technicians, cancer centre CEO’s, media, newly diagnosed, care givers, people who have lost a loved one, survivors, former smokers, current smokers, never smokers, early stage, late stage, surgeons, radiation oncologists, medical oncologists, pharmacists, cancer centre staff, managers, social workers, respirologists, primary care physicians, health educators, friends, family members, speech-language pathologists, YouTubers, bloggers, and so many more! #inclusive

Thank you, Heidi and Pierre, for making the first Ribbon with love, making this particular Ribbon with love, and sending it with love to Dr. Bernard.

Thank you, Dr. Bernard for supporting The White Ribbon Project, this lung cancer survivor advocate, and so many other people affected by lung cancer. Thank you for raising lung cancer awareness. Thank you for your compassion, generosity, and kindness. Thanks also for the great photo’s! #thewhiteribbonproject

Thank you, Dr. Narjust Duma for choosing to reach out to a stranger to do a great kindness for the son of a lung cancer advocate. Thank you for being a fierce thoracic oncologist, Asst. Prof, researcher and advocate! Thank you for supporting people affected by lung cancer and The White Ribbon Project. We are grateful!

#gratitude #kindness

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

Advocacy in my DNA

When I was a little girl, my Mom was a neighbourhood activist. She connected with people from all over our neighbourhood and worked to change traffic patterns. My mom worked with a team who mobilized the community with teams and block captains. They fought City Hall and won! Our neighbourhood streets were slated to become arterial thoroughfares, but because people took action, our neighbourhood is now one of the most desirable and most walkable areas in the city.

It seems advocacy is in my DNA!

Advocacy brings me joy. I love connecting with people and doing meaningful work. Advocacy can include amazing things like working with teams of people to decide which international research proposals gets funded (prepping for this tomorrow), or giving input into Canada’s cancer research priorities for the next five years (online meeting tomorrow). It’s important that people affected by lung cancer are represented in these kinds of conversations.

I’m keeping quite busy with my regular lung cancer advocacy work. I have a number of regular meetings and ongoing projects, and there are also frequent additional opportunities to learn, connect, and/or serve in some way.

On Saturday, for example, I worked with someone from an organization I’m connected with to shoot a brief video via zoom for an upcoming conference, participated in a great zoom team meeting for The White Ribbon Project, and had a prep meeting via zoom for a speaking engagement that I was invited to do through my volunteer work with the Canadian Cancer Trials Group. I’ll be team speaking with a dedicated cancer advocate and an oncologist about clinical trials at a big online meeting in May.

Over the weekend I spent a lot of time connecting with lung cancer advocates from across North America, which I really enjoy. Advocacy is accomplished through relationships and teamwork, a lesson I learned as a little girl from my Mom and have seen repeated over and over again. I am grateful to get to know so many amazing people! This is one of the silver linings of lung cancer.

Advocacy work lights my fire!

#lungcancer #advocacy #lcsm #CCTG #thewhiteribbonproject #joy #relationships #team #Mom #itsup2us #grateful #neighbourhood #walkable #teamwork #work

So much gratitude!

You may already know I had a very rough time healthwise in the Fall of 2020. We added radiation to the targeted therapy drug with hope that this one-two punch would knock out the progression I was facing, but sadly it didn’t do the job. I got pneumonia, suffered more progression, started chemo then got pneumonia again. It was a difficult time, and it became hard to keep up with walking the (large) dog twice a day. I was very weak and tired, could not swallow hardly anything, and had no appetite.

I’m so happy to say that I’m doing much better now. I continue to feel a little better each day, and am very grateful! I haven’t had any further swallowing appointments or procedures, but gradually I’m able to swallow a slightly increasing range of soft foods. The chemo is definitely working to kill the cancer, and it’s not too hard on me.

I seem to have settled into a rhythm each three week chemo cycle, and the side effects seem to be getting more manageable. Every three weeks I have about five rough days, when I feel extremely tired and experience side effects like nausea, general unwellness and a rash.

We are given a prescription for pills to counteract the nausea, to be taken as needed. I’ve used them a few times, but generally find that the anti-seasickness bracelets (that I also used to reduce morning sickness during my pregnancies) take the edge off enough for me to manage. Combine that with eating frequent small meals, and I feel quite well. The nausea only hits for a few days out of a three week cycle.

I’ve worked at being proactive, preparing for the phases of the cycle as best as I can. I take steroids for three days around the day when I get chemo, to help keep my body from reacting too strongly to the chemo. The rough days are largely a reaction to stopping the steroids. I make sure to plan to eat well and keep hydrated. I prepare foods in advance that will entice me to eat when I’m struggling from loss of appetite. I greatly reduce my expectations about what I’ll be able to accomplish those days, though I do find light exercise and phone calls with friends energizing.

I’ve been using aloe vera to help with the rash, and last cycle I applied it preemptively, before I had any rash symptoms, and did not get much of a rash at all! My skin was only a little pink, and not hardly itchy! Now the nerd in me is thinking we should do research on this, dividing patients into randomized trial groups to see if it was the aloe vera that worked, or merely gradual lessening of side effects, which is common as the body adjusts to a new treatment. I’m so curious, but I don’t want to experience the itchy rash again so I plan to apply it preemptively again next time!

We’ve been the recipients of so much generosity and kindness. What a difference that makes! Thank you so much to all who have brought or sent flowers, food, masks, food, prayers, food, lovely cards, kind thoughts and words, or food. We have been strengthened and uplifted with the love and support of so many. Thank you! So much gratitude!

I’ve also had the great gift of getting several sheets of exercises from two different oncology physiotherapists to help improve breathing and some trouble with my neck / shoulder region. I’m grateful to be seeing some improvement. It’s hard to know how much is the multiple sheets of exercises that I do every day, and how much is the cancer mercifully shrinking away. Either way, so very grateful.

I’ve been very busy with lung cancer advocacy, like the ongoing work as patient representative for the Canadian Cancer Trials Group Lung Site, 3CTN, The Ottawa Hospital, International Lung Cancer Foundation, and new connections with research teams in other cities. There is so much to tell you about how The White Ribbon Project is growing, and how people have stood up to raise awareness and proudly represent in eight Canadian provinces already! So exciting! Also continuing this month I’m part of a team exploring how to accelerate new drug approvals for people with lung cancer, and continuing conversations with a YouTuber who wants to help raise awareness about lung cancer. There is so much important work to do. It takes a team!

I’m so very grateful for lung cancer research that is helping to keep so many lung cancer survivors alive so we can do the things that matter to us.

More research means more survivors.

Research is life.

Research matters.

I really want to make sure you know I’m alive and quite well, doing a little better every day, and oh so very grateful.