Friends

Challenges and Choices

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I won’t lie. This past month has been a challenging season, due to pain, nausea, fatigue and breathing challenges. Living with cancer can be very challenging, but thankfully the pain, nausea and fatigue are improving. I’ve had to hunker down and rest a lot, but am thankful to still be able to spend a little time with people, get some exercise and continue to do some advocacy work. We don’t get to choose all of our life circumstances, but we often get choice in how we respond. We can control the things we can control. Choosing to give thanks even in the midst of challenges can be a real game changer.

The upper endoscopy which happened the end of September (mentioned in the previous post) went well. We learned that my esophagus (food pipe) had narrowed to the size of a pin prick. No wonder swallowing was so challenging! The next day the phone rang with an appointment for a stent to be inserted in my esophagus the day after. A stent is a flexible tube to help keep the esophagus open to make it easier to swallow food and drink. I was very thankful for the opportunity to take advantage of a cancellation and get this taken care of quickly. That procedure was harder on me than I anticipated, and I slept for some time in the hospital afterwards. I’m thankful for Jackie Manthorne, President and CEO of Canadian Cancer Survivors Network (pictured below) who waited patiently, helped get my prescription meds and got me home safe and sound. So many people have supported by driving to and/or from appointments. What a good gift! Because this time was such short notice I put a request out on facebook, and had multiple offers within a few minutes. Thanks also to Robyn Denis who drove me to the appointment. So many have offered and have driven, and you have no idea how much it means. Thank you!

Awesome advocate Jackie September 2022
Awesome advocate Robyn 2021
Awesome advocates: Robyn’s daughter Elizabeth with Dr. Paul Wheatley-Price. Photo credit: awesome advocate Chris Draft
Kim Andrea and Robyn – awesome advocates. Photo credit: Chris Draft 2019

I’m very grateful that swallowing is so much easier than it was in September. In addition to liquids and puréed foods, I can carefully chew and swallow soft foods. This helped make (Canadian) Thanksgiving Dinner much more enjoyable. Very thankful for my middle child and her boyfriend who cooked a delicious vegan dinner for us. There was tons of food, mostly on the kitchen counter since it would not all fit on the table. I still eat very small portion sizes, and could not finish all the yummy veggies on my plate that evening.

Canadian Thanksgiving 2022
Canadian Thanksgiving 2022

I’m also incredibly thankful for the gorgeous weather we’ve enjoyed this Fall. I went out walking as much as I could, often with my youngest who I’m so grateful for, and our big sweet dog. Here is some of the beauty we’ve been able to enjoy this past month.

Today I’m especially thankful for two dear friends who popped by this afternoon. We are blessed with so many good people who generously support us. Love and support can make a world of difference, especially during the challenging seasons, and I can’t tell you how much that means.

Could I challenge you to choose a friend or neighbour to reach out to with love and support in the next few weeks? This does not need to be someone affected by cancer, but could be someone going through a difficult season. Please never underestimate the difference you can make for someone!

November is Lung Cancer Awareness Month! What is your Cancer Centre doing to celebrate survivors and raise awareness?

August 2021
Awesome advocate Catherine 2021
August 2021
Awesome Bill Weir Photo credit: Chris Draft 2022
Awesome Lisa Weir Photo credit: Chris Draft 2022
Photo credit: Awesome Chris Draft 2022
Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, 2022
Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, September 2022
Ribbon build in honour of Brigitte. Photo credit: Chris Draft September 2022
Photo credit: Chris Draft September 2022
Photo credit: Chris Draft September 2022

Replenish

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We all go through seasons when we need extra replenishing, and this is one of those seasons for me and many people I know. Whether it’s physical, emotional or another kind of replenishing, we human beings need regular replenishment.

Sometimes something so simple as a glass of cool water can make a huge difference. Maybe we need food, and a simple snack of veggies and protein can do a world of good. For most of my live, I’ve never been a napper, but many people find naps refreshing. In this current season of living with cancer, I nap frequently, waking up with a second wind. Rest matters, even if we don’t fully sleep.

The kids and I sometimes watch one of their favourite shows after dinner, and this can be a sleepy time of day for me. Sometimes no matter how hard I try, I can’t keep my eyes open. They watch me like hawks and call out to wake me as soon as they think I may be dozing off. Some of the time I’m just resting my eyes, but often they wake me up and rewind the show so I don’t miss anything important. How awesome are they! I’m so grateful for them.

Exercise is one of the best ways to recharge, and can really help reduce stress and cancer fatigue. As they say, it’s always wise to check with one’s care team first, and of course always listen to one’s body.

The hot days can be extra challenging, especially for those of us who don’t have air conditioning. On the difficult days I use fans and a cool, damp cloth on my forehead and/or the back of my neck can be a game changer.

It’s important to invest time in things that nourish us. This can be challenging as our various abilities shift from time to time. Several years ago, for example, I took up acrylic painting and really enjoyed it. When I started on a different med, though, my hands hurt and painting was no longer an enjoyable pastime. The treatment was definitely worth this side effect, since it was keeping me alive. It is important to be ready to make adjustments and shift to new things that fuel us.

For those who love a lot of people living with a deadly disease, it is not unexpected that we will lose people we care about. This weight of grief can be a heavy load to carry. I found a grief counsellor through Hospice Care Ottawa who listened a lot and gave good suggestions for self care. One of the best self care suggestions makes sense for everyone, not just those carrying an extra heavy weight of grief…

Make a list of things that we can do to care for ourself, and break it down by time required. A category for a few minutes, another category for up to an hour or a couple of hours, one for all day or even longer… Self reflection and experimentation is required to make the most of this opportunity. Post the list somewhere convenient for easy reference!

To get you thinking, here are just a few of the things I find nourishing right now…

Few minutes: glass of ice water, look for birds out the window, enjoy a snack, sit under the carport, listen to a song on the radio, dance, do a few exercises (stretching is so good!), cross a small job off the “to do” list, play a word game on the phone, message a friend, list things I’m thankful for …

Up to an hour or more: visit with a friend, read, reflect, journal, phone a friend, walk outside, do exercises, sit in the garden, do a medium job on the “to do” list, nap, watch a show, listen to a podcast …

What brings me most joy, peace and hope continues to be reading the Bible and praying (ever since I was 17 years old). This is how I am replenished many times each day, with thanksgiving.

What replenishes you? I encourage you to make a list and set aside portions of your days to do these things regularly. We all need regular replenishing.

Generous friends brought delicious dinner (polenta, peppers, egg and basil) and also a cute little dog for a visit this evening. Very grateful for good friends!

Steroids

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Dexamethasone, a.k.a. decadron, is a steroid commonly used by many people for many health conditions including cancer. I’ve been taking it in various doses daily since my hospital stay in February, almost six months ago. Something very important about this drug is to not suddenly stop taking it. It is critical to taper down before stopping. My care team has been working to find the best dose for me, and in process I’ve learned a few things.

First, can you tell these two pills apart?

If you look closely enough, yes you can, but don’t they look very much alike? These are both the same drug, but one is 4 mg and the other is 0.5 mg. How easy would it be to make a significant, health-altering mistake?

Dexamethasone is a steroid that people frequently vary the dose of, so often have both 4mg and .5 mg pills in their home, and frequently need to cut the 4’s in half. One of the two main issues I’ve bumped up against is how similar they look. It is possible to tell them apart, but very challenging. If you’re taking 3mg, for example, you would cut a 4 in half and add two .5’s, but if you accidentally got that backwards, you would ingest 8.25 and that could really hurt a person. The second is that it is very difficult for the ordinary person to break one in half. These seem like simple fixes with a design change on the 4 mg pill.

I’m feeling a little more energized and today I reached out to a dear friend who has a good friend who is a pharmacist to ask for contacts and advice on how to proceed it I’m seeking to drive change here. I don’t know how much energy I have for this, but could perhaps send an email.

Also really want to give a shout out to my pharmacist at the Glebe Apothecary who cut a whole bunch of 4mg pills in half for me last time I had the prescription filled. I asked about the cost of the pill cutter, but chose not to buy it, and when my pills were delivered they came like this. Such a good gift! This makes taking 2.5 mg daily so much easier! Very grateful.

#hope

#advocate

#living

#steroids

#decadron

#dexamethasone

#pharmacist

#pharmacy

Advocacy highlight

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One of many advocacy highlights happened at the AACR Annual Meeting in Atlanta in 2019. I was at the Convention Center, working on a presentation about immunotherapy for the Scientist <–> Survivor Program, while hanging out with several people, including Rhonda Meckstroth and Chris Draft. Chris knows just about everyone, and was talking with many of the researchers who were passing by there. He introduced some people to us, especially if they would be good people to interview about immunotherapy. Chris is a great connector and loves to share his resources with others. The lung cancer community has benefited so much from him. He’s always available to us.

Suddenly Chris nudged me and pointed to a small crowd walking by. In the midst of this crowd was a man who looks kind of like your stereotypical scientist. He looked very familiar to me. He looked very much like Dr. Jim Allison, Nobel Prize Laureate for his work on immunotherapy. I felt very excited and very shy. I asked Chris if it was really him. Yes, it was. (Of course it was – he was there presenting.) I wondered if I should go talk with him. Yes, I should! I went running after his entourage and tried to get through the crowd. They weren’t letting me, but when Dr. Allison heard that I was a lung cancer survivor advocate, he told them it was ok to let me in. He warmly welcomed me into his circle and a big wave of gratitude washed over me for this man and his team who were history makers, who had changed so many people’s stories and extended so many lives. I was very excited to be able to tell him that he had made a huge difference for the lung cancer community, saving many lives including some of my friends. I thanked him on behalf of the lung cancer community, telling him we were very grateful for him and his team. Expressing gratitude matters

#gratitude

#hope

Please note: some of my previous posts have not been saved as expected, so keeping this blog updated has been challenging. Also, a fairly recent post published before it was intended, so many edits were not made. The main correction to make clear is that we are not stopping treatment, just taking treatment breaks.

Recent Health Updates: Exercise

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I had a PET scan, and appointments with my family doctor, thoracic surgeon/respirologist (who may do a biopsy) and oncologist recently. Good news all around! (Which may not be 100% precisely accurately remembered / communicated here.)

First of all, you may already know this bit of background I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so we radiation on those pesky spots, but that didn’t work as well as we’d hoped it would. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed (IV chemo). This continued for 24 cycles, but in February 2022 I was admitted to hospital with shortness of breath of unknown causes. In Spring 2022 the experts determined that I was doing very poorly, likely due to the Pemetrexed, and stopped IV chemo for a treatment break. I continued on the Lorlatinib, but after an appointment with my oncologist very recently, we have decided to take a brief treatment break to see how I do on no treatment for a little while. Please note: these are just treatment breaks. 

My family doc has agreed to look into what may be causing the shortness of breath, since it’s not necessarily cancer, which is great news! My oncologist also is referring me to a specialist who may be able to help with this.

The thoracic surgeon / respirologist said the PET scan revealed there is a small spot which may be measurable disease that he can easily biopsy if needed for the clinical trial. He also said that shortness of breath is natural since my lungs have much smaller capacity because of the scarring from cancer, the treatments, pneumonias, etc. This could have been discouraging, however when I asked what I could do to maximize what I’ve got and live as well and as long as possible, his answer was inspiring! This expert said that exercise makes a difference. Exercise is helpful – even when suffering from shortness of breath and in need of oxygen – and will influence all aspects of health. It doesn’t have to be at the pace that we might think. He encourages, for example, walking at a slow pace where we can still have a conversation with a friend and breathe. It matters that we keep pushing ourselves, at a slow pace, and it will help us to live longer and better.

Survivorship can be challenging. We need to remember that we are stronger than we think we are and by pushing ourselves a little, at a slow pace, and asking our friends to support and encourage us, we can potentially live longer and better.

Very grateful for Andrea Redway, for coming with me to the thoracic surgeon and also taking notes! (Everyone needs support and an advocate.) Still grateful for the cake made and brought by the awesome Vanneste sisters back in 2017 for our outreach table for World Lung Day. What a great surprise and generous gift that was! August 1 is World Lung Cancer Day. What is your Cancer Centre doing to celebrate?

#hope

Also very grateful for the ALK group who hosted a zoom call recently with people from Nuvalent, the biotech company developing the drug that I’m hoping to gain access to, potentially through upcoming clinical trial later this year. (Very grateful for Nuvalent.) One of the things I love about this trial is that the team has worked very hard to make it as accessible as possible to as many people as possible. So, for example, you can have had multiple prior lines of treatment. You could be 107 years old. You could have ALK cancer, but not specifically ALK lung cancer – even rarer. You can even live in Ottawa Canada.

(Note: most pictures here are pre-COVID.)

Happy Cancer Survivors Day! advocacy + brief health update

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Happy Cancer Survivors Day! Cancer affects so many of us, whether directly or indirectly, and it’s exciting that right now the biggest cancer conference in the world (ASCO) is happening in Chicago and online because more research means more survivors and better survivorship.

There is much talk of new treatment options and potential cures, and I can’t tell you how thankful we are for research and all involved in the research process. Just over a week ago, terrific Canadian ribbon makers, Lisa and Bill Weir and awesome advocate Chris Draft and I were representing The White Ribbon Project, speaking to a group of the lung team members from a pharma company, communicating how thankful we are for the research they do, and how important research is to the lung cancer community. What a difference research makes! #ResearchMatters

This pharma company team did a terrific job all around. They were well-organized and effective communicators who sent a thoughtful and well-written thank you email afterwards including promises of ongoing partnerships. What a great day! The pharma company teammates made White Ribbons together with those three team members from The White Ribbon Project who were able to go in person and be at the same place to make ribbons together. I would have travelled there too had I been able, but instead very thankful that they effectively set things up so I could speak online.

Speaking of my health, I’m still on oxygen and we don’t know why there is still shortness of breath.

Dr. Nicholas, my oncologist, suggested it could be good to take a break from chemo to see how my body responds and also the cancer. Last week’s CT scan showed that the cancer remains stable or improved – great news! I still have shortness of breath, but most days am feeling much better, so that’s a real plus.

Dr. Nicholas has been working on discerning a good path forward. I may be able to participate in a clinical trial which may start in Toronto in the Fall, but there are still more hoops to jump through before this can happen. I’m very thankful for Dr. Nicholas who works very hard for his patients.

Celebrating cancer survival together with the awesome Andrea Redway on her seventh cancer-versary! Over fifteen years of survivorship (and two metres) between us!

Andrea (above) is also a patient of Dr. Nicholas. Here she is, celebrating her seventh “cancer-versary”, also on the same day as the ribbon build! When she was first diagnosed, the cancer had already spread through her body and she was very close to death. She and her husband advocated for her to get the life-extending surgery she needed, and a less experienced surgeon was willing to do it even when a more experienced one was not. Together with Dr. Nicholas, Andrea and Michael looked possible treatment options and talked about immunotherapy back in earlier days when it was not so common. He was quick to get the paperwork done and Andrea is alive and doing well seven years later. She is an amazing advocate and we are so very grateful for her and the good care she has received.

It matters to keep holding onto hope and continue advocating for more research and for advances in research to get to people who need them. Researchers are working hard to find cures. Research advocates have an important part to play, representing survivors, patients, their family, loved ones, and the public. It is important that we are trained and well educated so we act like professionals and work effectively.

Another meeting I got to be part of that same day was with the team that is working on Canadian Cancer Clinical Trial Network’s (3CTN) Precision Oncology Map that some of you may know about. Last Fall the Canadian Cancer Clinical Trials Group earned the Bayer Precision Oncology Patient Innovation Award grant of $25,000 and is using it to improve clinical trials for people living with cancer in Canada. 

This team has been working to develop a map of all the Canadian cancer clinical trials so that patients, caregivers & clinicians can more easily find suitable trials and researchers & sponsors can search for gaps where more trials are needed. We are still looking for feedback on how user-friendly the current test version is, and if you are interested, you are welcome to help.

If you would like to look at the map and potentially give feedback, please click on the link below and explore the map, then send a brief email info@3ctn.ca with your thoughts about strengths, weaknesses and suggestions for improvement. Precision Oncology Map: https://app.powerbi.com/view?r=eyJrIjoiNmM2MmE0NmQtMGI5OC00NDdjLTgxMzMtM2ZmNzQwYjRkMjM3IiwidCI6IjlkZjk0OWY4LWE2ZWItNDE5ZC05Y2FhLTFmOGM4M2RiNjc0ZiJ9

Below are some pictures from that awesome build mentioned above. Thank you to Lisa and Bill Weir (with the great tee shirts), Amy Hayes, Lorraine Hudson, Grace Oha, Lung Ambition Alliance, AstraZeneca and the awesome advocate and photographer, Chris Draft. Great day! Thanks also to Heidi and Pierre Onda, founders of The White Ribbon Project.

Bill and Lisa Weir, Lorraine Hudson, Amy Hayes, Grace Oha

#hope

#The White Ribbon Project

#lungcancerawareness

#sensibilisationaucancerdupoumon

Disappointing News

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One advantage of needing help getting into the cancer centre is being allowed to bring a friend into my appointment with the oncologist. I’m very grateful that I could bring dear friend and awesome lung cancer survivor advocate, Andrea Redway, into the little room to talk with the oncologist about test results. It means a lot to have her ears and wisdom, and know that she will feel free to speak up with questions and ideas. (Of course I ran it by the oncologist beforehand.)

Part of the disappointing news is that there is no news from the blood biopsy that was sent to Canexia lab in Vancouver BC. Just because they didn’t spot any cancer info doesn’t mean there is none present, similar to the way we don’t find a chunk of chicken in every spoonful of a bowl of chicken soup.

My awesome oncologist looked back over several ct scans, comparing multiple scans rather than merely the most recent to the one previous scan. When he put five scans in a row, it became clear that it looks like slowly progressing cancer growing. Disappointing news.

We control what we can control.

There are several potential options to consider choosing. I would love to participate in a clinical trial, but unfortunately the cancer is growing in a way (without “measurable disease”) that does not meet criteria for the trials that we’ve looked into so far. Currently I don’t qualify for any trials that we’ve found. I’m very grateful for the team who have influenced our thinking, including patients, survivors, caregivers, doctors and researchers, very thankful for those who have offered input to guide our choices. My oncologist and I have been communicating with each other, and including the thoughts of other experts.

A big shoutout to Colin Barton and the ALK+ Research Acceleration Committee who are made up of patients, survivors and caregivers. They not only stay on top of cutting edge research related to the type of lung cancer we’re affected by (ALK+), but also drive research. They are a brilliant bunch who also care.

Another big shoutout to our Canadian team of doctors and researchers. Through years of advocacy it has been a privilege to get to know and partner with many top lung cancer researchers, surgeons and oncologists from across the country, as well as around the world.

My oncologist reached out to several people including Dr. Alice Shaw, MD, PhD, also known as the Queen of ALK. Dr. Alice Shaw remembers me as the Canadian advocate who chased her from the escalator and interviewed her for this YouTube video at the American Association for Cancer Research Annual Meeting in Atlanta, 2019. #AACR19

Dr. Ross Camidge spoke to the importance of testing to find the most appropriate treatment. Here he is at an event in April 2019 at The Ottawa Hospital where Dr. Paul Wheatley-Price obtained permission for me to invite people to be part of a special presentation to patients. Dr. Camidge also fielded questions from people across the country who were able to participate remotely. Dr. Christine Lovly is another top ALK doctor/researcher who genuinely cares about people and remembers us. They are part of our lung cancer team, and they are terrific teammates! So very thankful! (I also included a few photo’s below from our ALK+ family summit in Atlanta in August 2019. Such a great gift to be with these amazing people.)

Dr. D. Ross Camidge, MD, PhD
Canadians at the ALK+ Summit in Atlanta, August 2019. Four were diagnosed with lung cancer. Can you tell which three are the caregivers?
Dr. Christine M. Lovly, MD, PhD, BA

But back to the news… my oncologist has asked a thoracic surgeon at The Ottawa Hospital about doing a procedure to get a biopsy to test. I’m waiting to hear back. Waiting is hard, but we can only control what we can control.

In the meantime, we continue the same course of treatment which is holding back much of the cancer, and we also take symptom management steps ahead. This seems to be a slowly progressing cancer, and being slow is a mercy which we’ll take.

The pain and symptom management clinic at The Ottawa Hospital gave an appointment next week. Research shows that people whose symptoms are well-managed tend to live not only better, but also longer. I’ll take it!

Yesterday morning I presented a White Ribbon to my awesome respirologist, Alyson, who came by to replace the oxygen machine which had started beeping. She has listened to a lot of advocacy talk about lung cancer, is very informed and empathetic. She goes above and beyond. Very thankful for her.

#hope

This just in! A call from the doctor’s office for a phone call appointment to discuss the potential procedure on Friday afternoon, April 29. (I asked and they don’t have a cancellation list.)

Ottawa Lung Cancer Support Group

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What is a cancer support group worth? Who can place a value on a group like this? We can encourage each other, support each other, lift each other up. We can help each other know we’re not alone. Together we can hold onto hope. Imagine what more we can do!

Together we are the Ottawa Lung Cancer Support Group. The Jelly Bean Gang. The Ottawa Circle. #LungCancerStrong

Here is how we looked on Zoom today. Due to COVID we’ve temporarily pivoted to the online world. Screenshot at 4:09pm EDT, shared with permission. Look at our faithful leader and all these beautiful lung cancer survivors, one on horseback, celebrating one year since diagnosis. Happy “Cancerversary”! Looking good, Ottawa!

Ottawa Lung Cancer Support Group, March 25, 2022, 4:09pm EDT

Wouldn’t it be good if everyone affected by cancer had a support group to be part of?

The Ottawa Lung Cancer Support Group welcomes people to the cancer centre through monthly (pre-COVID) outreach tables.

Queen’s Park, Toronto, Ontario, Canada
Federal cancer advocacy, The Parliament Buildings, Ottawa, Canada
Federal cancer advocacy, Ottawa Canada
Federal cancer advocacy, Ottawa Canada
Federal cancer advocacy, Ottawa Canada
Cancer advocates, Ottawa City Hall
En route to advocate at Queen’s Park (site of the Ontario Legislative Building, home to the Legislative Assembly of Ontario) in Toronto
Cancer advocates in front of the Parliament Buildings, Ottawa Canada
The Parliament Buildings
Federal cancer advocacy, The Parliament Buildings, Ottawa Canada
Federal cancer advocacy, The Parliament Buildings, Ottawa Canada
The Ottawa Lung Cancer Support Group advocating to municipal, provincial and federal politicians and other influencers.

The Ottawa Lung Cancer Support Group on the front page of the newspaper Monday October 30, 2017

The Ottawa Lung Cancer Support Group travelled to present at the International Psychosocial Oncology World Congress 2019

The Ottawa Lung Cancer Support Group together with family & friends declared #LungCancerStrong, National Capital Race Weekend 2019

Jellybeans represent people diagnosed with lung cancer. More funding = more research = more survivors. Advocacy matters!

#ResearchMatters

The Ottawa Lung Cancer Support Group invited family and friends to make #TheWhiteRibbonProject ribbons August 9, 2021

Getting our affairs in order

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I’ve heard people talk so comfortably about end of life matters, but it was never easy for me. With practice it’s been getting better.

My parents were both diagnosed with cancer within one week when I was 20, and within a year they had both died. Those were the first and second funerals I went to. Before that time I did not know much about grief except what I had read in books. That was an incredibly difficult season and grief continues, though not like back then. I’m working to prepare my children for life after my death, even though we are holding onto hope that I will live for many more years. We have had some really good and important conversations.

It’s always wise to make sure our will is updated and the other important things are communicated and ordered appropriately, but at times like this we feel the need to be sure all the more. It’s generally best to involve a lawyer. Specifics vary from place to place, but in Ontario Canada, the main pieces are: will, power of attorney for personal care, power of attorney for property.

There are many resources in communities and online to help.

For some time I’ve been connected with Hospice Care Ottawa, and recently have started taking advantage of some of their services. I’ve been meeting with a grief counsellor regularly since September because I was feeling the weight of many griefs, and this has been very helpful. Lung cancer advocacy can be a heavy load. Those who are uplifting and supportive matter so much. They can make a huge difference.

Some of Hospice Care Ottawa’s volunteers participated in an advanced care zoom meeting, which was filled with good information and resources. They invited us to play a “Go Wish Game”, where you choose your top 3 out of 36 wish statements relating to end of life care. It’s challenging to choose only three, but the point of this game is to get people thinking and talking, and that it certainly did. Many others on the call have also found that having these kinds of conversations with family and friends tended to turn out a lot better than they were expecting. There are lots of good resources and great conversations to be had.

Part of a handout from the advanced care zoom meeting

My word for 2022 is “rejoice”, chosen before 2022, before my health took a turn. It’s surprising how much joy there can be, even in conversations about end of life issues. It matters to me that people feel freedom to celebrate, not just mourn. We’ve spoken about grief many times. We acknowledge there is and there will be sadness along with a whole lot of different emotions, but there can also be joy and laughter. My desire is that in addition to sadness people will remember and celebrate the good and happy times.

My beloved three children mean so much to me. They have been living with their Mom having lung cancer for over eight years. They were only 6, 10 and 12 at diagnosis. Now they are 15, 18 and 20. We are very thankful for advances in research that have been a big part of the story, keeping this stage four cancer survivor alive all these years. What a difference research and good medical care has made, along with the support of some amazing people!

Our advocacy has been largely about working to extend and improve the lives of people diagnosed with lung cancer or other kinds of cancer. We’ve worked hard to support people and elevate the value of people affected by lung cancer and the importance of research. It is still possible that I can live on chemotherapy long enough for another discovery to be made and become accessible for me. This is what we’ve been hoping for.

This is how we’ve been living for the past eight years since diagnosis. Seven different lines of treatment: four different targeted therapies, radiation, two sets of chemotherapy … when one treatment option failed another one has always become available, sometimes just in the nick of time. Great timing of accessibility has helped keep me and many others alive. This rollercoaster ride has kept me and so many others going, and we continue to hold onto hope.

We celebrate researchers, fundraisers, primary care physicians, counsellors, storytellers, social workers, advocates, nurses, surgeons, administrators, oncologists and anyone who works as a good team member to help extend and improve the lives of people affected by lung cancer. These good teammates need to be uplifted and encouraged because the load can be heavy, the work can be hard. We are so grateful for those who encourage and uplift teammates. Together we can be a good team. We can drive change.

#AdvocacyMatters

#AccessMatters

#ResearchMatters

#ChooseHope

Inside scoop

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This is awesome! The Ottawa Senators care so much about people affected by lung cancer that they set aside time to sign a stack of The White Ribbon Project ribbons to give to people newly diagnosed with lung cancer at The Ottawa Hospital Cancer Centre. The Weir family is a major reason that The Ottawa Senators are part of The White Ribbon Project community.

Bill & Lisa Weir have made 400 The White Ribbon Project ribbons and given 370 of them out. They are very generous people who are giving with love, investing their time, talents and resources into people affected by lung cancer. They care. Their family is tremendously supportive. They have three grown children, twin grandsons and one due in July. Lisa is looking forward to turning 60 this year. Big milestones. In May 2020, Lisa was diagnosed with advanced lung cancer. Stage four. Both lungs. She started a clinical trial for her specific kind of lung cancer (KRAS G12C) in May 2021, and it’s working well. #ResearchMatters When she and Bill learned about The White Ribbon Project, they wanted to be part of it and reached out in the very early days to ask about making ribbons. By the end of February 2021 they had made 244 ribbons. Their daughter and son-in-law, Sam and Josh (who plays for the Senators), eagerly jumped on board as did many other family members, friends, teammates and more. What a difference their family and community is making for others. “In this family no one fights alone.” It’s so good to know the Weir family. They are kind people, good, generous and eager advocates, silver linings of lung cancer. Thank you, Weir family and extended community.

Sam Weir delivering stacks of ribbons to Ottawa, early 2021
Bill Weir mailing packages of ribbons across Canada, from British Columbia to Nova Scotia

Dr. Paul Wheatley-Price is another important The White Ribbon Project community member. He is a medical oncologist who has stepped into an even bigger leadership role at The Ottawa Hospital Cancer Centre, giving out ribbons with love. He knows the story of The White Ribbon Project and the importance of love in the making and giving of ribbons. He understands the power of the Ribbon to gather, unite and uplift the lung cancer community in love. He came over to our home today to pick this new batch up. (Thank you to first born for taking pictures.) He was at the Ottawa Community Ribbon Build back in August 2021, and gave out a stack of ribbons to the newly diagnosed in the Fall and Winter. He has been showing he cares about people affected by lung cancer for years. He has played a key role in advocacy, and is a terrific partner in advocacy. He helped us get the first lung cancer outreach table on World Lung Cancer Day, August 1, 2018 at the Cancer Centre (and has continued to support them), and he helped Andrea and me with the annual patient-driven lung cancer patient summits that we held prior to COVID. Having someone like Paul be part of the team makes a phenomenal difference. Multi-disciplinary advocacy teams are powerful game-changers. Paul is a real door-opener. We are so glad he has taken on this important role with The White Ribbon Project, giving out ribbons with love in Ottawa.

Below are some pictures showing just a small portion of Paul’s tremendous advocacy (over years) for people affected by lung cancer. He is a powerful force.

Paul was part of Ottawa’s community ribbon build in August 2021.

Here is Paul today, picking up ribbons at our home. Thank you, Paul, for consistently going the extra mile.