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

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.

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!

Seven years – Wow!

Cheers to the researchers, and the whole team who has helped keep this mom of three alive for seven years since a stage four lung cancer diagnosis December 2013!

I’m so grateful to be here! My life is enriched through knowing and spending time with a variety of very special people (whether online, on the phone or in person). I’m blessed with dear friends and meaningful work as a lung cancer survivor advocate. This weekend, two of my fellow lung cancer survivor advocates sisters gave our family this feast to celebrate my seventh “cancerversary”, along with a beautiful card. Thank you, Andrea and Kim! (photo’s of people all taken before COVID).

This seventh year has meant a lot because my youngest turned 13. She was only 6 when I was diagnosed, and she doesn’t have many memories from before then. During these seven years she has grown and matured, and I catch so many glimpses of the amazing young woman she is becoming. Now we’re in this brief, sweet spot where all three are teens. Parenting adolescents isn’t easy, but it’s a privilege and there is so much joy. The oldest is doing well in his second year of Electrical Engineering and Physics at University, and the middle one is currently enjoying a high school co-op placement perfectly suited to him and his love of music and music education. What a gift to walk with them through this season! #ResearchMatters

Here are some photo’s of the kids from the past seven years. We are so grateful for milestones and memories!

We owe a debt of gratitude to the researchers who, through creative brilliance, steadfast discipline and diligent tenacity navigate the twists and turns, false starts and dead ends that form the research pathway from bench to bedside, from idea to effective treatment.

And the whole team of administrators, statisticians, economists, funders, panel members, visionaries, regulators, encouragers, and so very many more very necessary and important team members, Thank you!

Way to go, team! Thank you! Thank you for working to keep me alive these seven years! On behalf of family, friends and communities, THANK YOU!!!

We had no idea I’d still be alive seven years after diagnosis. Please keep working hard with urgency so that I and others like me can live longer and better!

thank you

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

Three More Reasons to Hold onto Hope

In a challenging season, there are opportunities to be seized. When life is hard, there is still good going on. Here are three more reasons to hold onto hope…

3) Canadian Cancer Society/Canadian Institutes of Health Research Cancer Survivorship Team Grants

Last summer Jennifer Wilson, director of research operations for the Canadian Cancer Society, asked me to serve with some awesome review panelists to help decide which survivorship team research projects would receive funding. The $10 million competition, CCS/CIHR Cancer Survivorship Team Grants, had the goal of improving health outcomes for cancer survivors. We anticipated that at least four teams would be funded, but then just before the announcement could be made, COVID-19 struck.

Everything changed.

Prior to COVID-19, this $10M competition would have been the largest investment in cancer survivorship research ever made in Canada at one time.

The recipients were announced this month. During the delay brought on by COVID-19, additional partner funds were secured from the Alberta Cancer Foundation and McMaster University, which enabled SIX grants!!

Jennifer Wilson and team worked hard during a global pandemic to make the largest investment in cancer survivorship research even larger! Way to go team! Here is the announcement

2) Great news! The US FDA approved SEVEN new lung cancer treatments in May 2020 (during COVID-19)!!

Tabrecta – Capmatinib (METex14)

Retevmo – Selpercatinib (RET)

Opdivo – Nivolumab + Yervoy – Ipilimumab

Tecentriq – Atezolizumab (first line)

Alunbrig – Brigatinib (ALK)

Opdivo – Nivolumab + Yervoy – Ipilimumab + chemo

Ramucirumab – Cyramza + erlotinib – Tarceva (EGFRex19 or ex21)

WOW! WOW!! WOW!!!

What tremendous achievement from multiple teams! Time to celebrate!! #ResearchMatters

1) What a feeling!

This is insignificant in comparison, but I am also thankful because I have feeling in my hands this evening.

Neuropathy (nerve damage / dysfunction) is a common side effect from some cancer treatments. My hands have been generally numb or in significant pain (usually burning, stabbing or electrical) for the past six and a half years of survivorship. I try to keep perspective, since these are side effects of drugs that are keeping me alive.

Tonight I was making biscuits, and as I rubbed my hands together to remove bits of dough, I realised that I could feel the palms of my hands. They felt almost normal, and they still do, a few hours later. Happiness and gratitude! So thankful to be alive six and a half years after diagnosis!! My kids were 6, 10 & 12 at diagnosis, and now they are 13, 17 & 19. That means so much! I’m so glad I get to be here with them. So very grateful!

The costs of survivorship are real. New and improved treatment options mean that (in general) people are living longer and better post diagnosis. Survival rates vary significantly, but about two thirds of people will live at least five years after a cancer diagnosis. This means that over one million Canadians are now living with cancer, and that number is expected to rise dramatically in the next twenty years. (Canadian Cancer Society statistics)

Research matters, to improve both quantity and quality of life.

Research brings hope.

Hold onto hope.

The difference lung cancer research makes

Right in this moment, today friends, I have to tell you that I am overflowing with joy and a sense of wonder and well-being. Maybe that sounds a little crazy to you because of the lung cancer, but it’s true.

I am grateful beyond words for so much good in my life. The best is that I am loved, by God, by so many people, including my sweet daughter who makes me little “I love you” notes all the time. She is filled with love and joy, and I cherish her. I am so thankful to be here with her and with you all.

We were made to love and be loved. Love gives us a reason to live. I’m thankful to be alive so I can love, be loved, and make a difference for others.

And I am alive, more than five years after my diagnosis, I am alive! In fact, I feel better than I did a year ago. I keep feeling better and better. I can breathe well, most of the time. I can move my body in ways I haven’t since this whole thing began. Cancer, chemo and meds weakened me, zapped my energy, and made my body stiff and sore. But I’m regaining muscle strength and flexibility, which is such a good gift. For the past five years, I’ve pushed through the pain, telling myself, “Use it or lose it!” I know what it means to push through pain, being a former national athlete and a mom who delivered two of my babies without pain relief. (Did I mention the second one weighed almost 11 pounds?)

I’m feeling better, more able to move, in much less pain, with much more energy, and I am rejoicing! What a difference lung cancer research makes!

This new lung cancer med is doing more than keeping me alive. It’s helping me to live! I give thanks for lung cancer research! Let’s have more of it!