LCSM

Virtual / Reality

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We have a carport and it’s a great place for visits most of the year. A dear friend from High School ordered a heater for us and had it delivered shortly after a chilly visit last Fall, and that has extended the carport visiting season. So grateful!

It’s very special to be able to meet with people in person, and this summer quite a few friends are coming to town and making time for carport visits. Yesterday a childhood friend (we used to play piano duets together) came from the Seattle area and her Mom (who still lives in the same home with the same phone number (which I and so many others still remember)) came to visit. Such a treat! It’s so good to see people in person, even from 6 feet apart outside. In my opinion, it’s better in person than at a distance. Better in reality than virtually, in my opinion.

Don’t get me wrong, virtually is good, and in some circumstances it can open doors and provide opportunities that would not otherwise be possible. This is one of the silver linings of COVID and don’t get me wrong, I am grateful. It’s so good to meet “face to face” virtually when it’s too challenging (for a potential variety of reasons) to really meet face to face. There are good reasons for both. There is a season for everything. So grateful for a variety of options.

This is one of the reasons I’m such a fan of and advocate for CRAFT, 3CTN’s framework to make clinical trials more accessible for Canadians living in remote and rural parts of our geographically huge country. So important! 

Here’s a short video about CRAFT with some great quotes from a few people which was made over a year ago. CRAFT has now been rolled out and is serving people at several locations.

Zoom and other similar platforms have enabled many of us to speak at international conferences and other events the past couple of years. I’ve spoken at so many virtually, and we recognize the upside of not having to travel and spend time away. This has been a good gift which has also been a real difference maker for many of us.

Speaking personally, these visual platforms have also transformed much of my patient research advocacy in other ways. I used to have so many phone call meetings prior to COVID, and some of them with quite a large number of people. Initially I hadn’t met all the researchers in person and I did not always recognize all the voices. Sometimes some of the people did not introduce themselves when they started speaking and it could be challenging to figure out which person (from which place) was speaking. It’s so much easier with platforms that can show faces and even list their names. So much easier to get to know people and be better able to contextualize their comments. So  much better for community building than a mere large group phone call. So grateful for this!

In recent months, many members of the lung cancer community and other friends have sent gift certificates for our family to order food in. It means so much to receive this support that comes with love and appreciation. One ordered pizza for us, several have brought food, and many friends including our church community has brought much food and sent food in various ways as well. It’s such a treat and very much appreciated. Twice people have sent fruit bouquets which are so delicious, and so many other yummy things have arrived at our door – too many to name, and received with tremendous appreciation whether sweet or savoury. Thank you!

I’m very grateful for local friends who have done things this week – again, too many to name – like offer to pick up a walker for me, or regularly walk our dog. The reality is that there are times when we need real physical, local support. So many people here in Ottawa have offered and/or given support when needed, for example, rides to appointments, picking up groceries etc. Where would we be without our local people?

As much as we appreciate the virtual reality, we recognize there are some things that obviously cannot be done from a distance. Even for those who are part of strong virtual support groups, it seems obvious that it’s important to make sure we are also cultivating relationships with people in our own geographic community. We never know when we might need local support.

Please let me say again that we are incredibly grateful for the reality of this local support as well as the support from a distance.

#love

#hope

#support

August 1 is World Lung Cancer Day. What is your cancer center doing to celebrate?

Brief Summary of Treatment in Two Parts

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A bit of background for those interested in a summary of treatment lines, in two parts. With a huge load of hope!

First since 2018:

I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so did radiation on those pesky spots, but did not get hoped for results. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed / Alimta (IV chemo, 3-week cycles). This ultimately continued 24 cycles, till March 31 2022.

In February 2022 I was admitted to hospital with gradually worsening shortness of breath of unknown causes which had become very serious. I started on constant oxygen and have continued gradually increasing the flow. Many tests were done, but nothing jumped out as a likely cause. Steroids, puffers, a transfusion and a couple of other drugs were added to my list, but no major improvement.

In Spring 2022 I continued to decline and was doing very poorly. The experts wondered if it was due to the Pemetrexed, and decided to stop the IV chemo. I continued on the Lorlatinib, and every scan since has shown the cancer remains stable or shrinks a little. I’m still on oxygen, still not much better, but a little later today we’re going to talk about whether we should consider pausing Lorlatinib to see if that helps with breathing.

Always holding onto hope!

Now since 2013 Diagnosis:

December 2013 – April 2014 IV chemo, still coughing (4 months), pneumonia several times

July 2014 – May 2015 Crizotinib (11 mos)

May 2015 Ceritinib start. Scans clear fall 2015 (20 mos)

Jan. 2017 Alectinib feel better than had since Dx (20 mos)

September 2018 started Lorlatinib feel fantastic!

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October 2020 radiation, 5 days – then back on Lorlatinib

Pneumonia

November 2020, started Alimta (Pemetrexed) 3week cycle. Pneumonia after first cycle.

March 24/21, still going strong. Feeling better on Pemetrexed and getting stronger. Praying for new treatment options. 

April 6/21, very tired this cycle, but on evening of 12th starting to feel energy returning. Praying for new treatment options.

Feb 2022 hospital for shortness of breath

April 2022 still short of breath and uncertain why Still praying for new treatment options. 

NVL-655 May be an option

#hope

Advocacy in my DNA

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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

World Lung Cancer Day 2020

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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.

Research and Hope

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Research makes a world of difference! Research is a reason to hope, and daily there are advances in cancer research.

Patients, survivors and caregivers can speak into the research process, making it better. There is need for people who have cancer experience to participate as research advocates.

I’m glad to finally have my computer back and running, the corrupted hard drive replaced. Not having a computer made life and advocacy much more challenging. Even without it, I’ve been busy with a lot of lung cancer activities, including ongoing research advocacy with the Canadian Cancer Trials Group and the International Lung Cancer Foundation.

If you are a lung cancer survivor advocate who is interested in learning and growing as a research advocate, please consider applying to the (IASLC) International Association for the Study of Lung Cancer’s “STARS” program, in which I participated as a mentor for six months last year. Such a great learning opportunity! You’ll need a reference and to set aside a few hours to apply. (The AACR Scientist <–> Survivor Program is also excellent, and open to advocates for all cancers.)

Awesome STARS advocates at the World Conference on Lung Cancer, Barcelona, September 2019.

I spoke as part of a team to a group of patient advisors at The Ottawa Hospital in January, with the goal of working together to improve cancer clinical trials. They were engaged and inspiring! We are walking in new territory and innovating new pathways. I’m hopeful.

Our monthly lung cancer hope outreach tables at the Cancer Centre continue with good coordinating work from Andrea Redway, with support from The Ottawa Hospital, Lung Cancer Canada and the IASLC. It is clear that the information and conversations make a real difference for survivors who stop by, many are newly diagnosed or in process of being diagnosed, which is one of the most challenging parts of the lung cancer journey. We are privileged to invite them into community, share information and stories, and (perhaps most importantly) listen. It is clear by their facial expressions and body language that they tend to leave much more uplifted and encouraged. We have an amazing team of compassionate and skilled people. From time to time, we talk about the emotional toll it takes on our team. Most agree that it leaves us feeling a little emotional fatigue by the end of the day, but after a bit of rest we are restored. Overall, this work brings so much joy and fulfilment to team members. We get along well and enjoy each others’ company. It’s really good to work together as a team. I’m very grateful for these people and other teammates who invest a day each month.

Some of our outreach table team members chatting with Dr. Paul Wheatley-Price in January. (That day I spent a lot of time talking with Ottawa Hospital employees as well as patients!)

There are many amazing people doing good work for people affected by lung cancer and other cancers. What a privilege to get to know some of them, and sometimes connect them with each other! It brings me joy to connect people to form strategic partnerships.

It was great to meet Amy Desjardins, Director of the Canadian Cancer Society, Ottawa Region, in person in January, and to learn that their holiday fundraising appeal which used my story has raised over $280,000 for cancer research.

I’m part of several online lung cancer communities, which offer information, empathy and support. I’ve met many hundreds of people around the world through these groups, and it’s exciting to meet in person. When Kim told me that she was coming to Ottawa for the Family Day long week-end, I asked my kids how they felt about having her family over for dinner. They jokingly gave me the “Stranger Danger” talk! They are very supportive of my lung cancer work because we’ve talked about it and they understand how important lung cancer survivor community and advocacy are. They know that it’s up to us to support people and stand up for better outcomes for people with lung cancer. We were very happy to welcome Kim and her family into our home. It was great to spend time together.

I continue to connect with many people affected by lung cancer and spend hours each month listening, encouraging and seeking to inspire hope. It’s an honour. We have the choice to live in hope or fear, so why not choose hope?

I’m doing a little art these days when I can set aside the time.

Did I mention that my youngest turned 13 recently? That’s right, now all three are teens and life is wonderful! I can’t tell you how grateful I am to be alive and be here with them and for them. I cherish these precious moments, and hope for many more. I dedicate time and effort to advocacy with hope that this will help improve outcomes for others affected by lung cancer, today and in the days to come.

My 13yo made this cake for a little Leap Year Day party we held with some good friends!