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!

Lung Cancer Screening Matters!

The International Association for the Study of Lung Cancer holds the World Conference on Lung Cancer every year. This beautiful picture was taken at WCLC19 in Barcelona. COVID has not stopped lung cancer research, but due to COVID-19 WCLC20 has been happening this month, virtually rather than in Singapore. I’m going to briefly summarize two key presentations below. (After I tell you about these amazing smiling people below)

#WCLC19 Barcelona

I love looking at these amazing advocates from several continents, gathered in Barcelona in September 2019 to learn and celebrate research. We know that research means life, and lung cancer research is extending many of our lives. Many of us are now taking treatments that did not exist when we were diagnosed. Some of us are holding onto hope for new research to come up with an effective new treatment to help keep us alive before our current treatment stops working.

At the time of that photo, nine of us were on treatment (later stage diagnosis), two diagnosed early stage (had curative treatment), three never diagnosed, and all fourteen fierce lung cancer advocates. I’m grateful that though some of us have gone through very bumpy paths, all are still alive. How happy we are that we were well enough to travel to Barcelona and be physically present together with top researchers in the world, learning the newest potentially life-extending news!

For people affected by lung cancer, research often means the difference between life and death. For those of us who know many people affected by lung cancer, losing people we care about is far too common. Most of us are diagnosed at a later stage with a very poor prognosis. If more people were diagnosed at an earlier stage, way more would live much longer.

Let me get to a quick summary of the research!

First, experts are saying we can double lung cancer survival in four years! Sounds great, and it’s not complicated. We need to educate doctors and implement lung cancer screening programs. Here’s the beginning of the article from IASLC Lung Cancer News. You can read the whole thing at this link: https://www.iaslc.org/iaslc-news/ilcn/improved-screening-uptake-could-help-double-lung-cancer-survival-2025, but the basic summary is that more doctors need to know that lung cancer screening works.

Lung cancer screening works, and more doctors need to know it.

When we test people using low-dose CT scans, way more will be cured. Lung cancer screening has the power to shift the stage when the majority of people tend to be diagnosed from late stage to early stage, which makes a huge difference for survival. In very broad strokes, when we don’t screen, about 3/4 of the people will be diagnosed later stage (with very poor prognosis). When we screen, about 3/4 of the people who are diagnosed will be early stage with a very good chance of living long and not dying of lung cancer.

Lung cancer screening makes sense!

Second, a new study from Taiwan (“TALENT”) shows the importance of lung cancer screening for ALL high risk individuals. Most screening is done for people with a long history of heavy smoking. These researchers from Taiwan did lung cancer screening for people who had never smoked but were at high risk from other things like family history or cooking without ventilation. They found lung cancer in a larger percentage of people than is typically found in a screening study with heavy smokers. This “TALENT” study found lung cancer earlier and people will live much longer because of that.

If you’re interested, you can read the article here: https://www.iaslc.org/iaslc-news/ilcn/lung-cancer-screening-never-smokers-east-asia-catches-very-early-stage-disease.

Screenshot of my Tweet

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Lung cancer screening matters for all people at high risk, not just smokers. Anyone can get lung cancer.

Anyone. People who eat broccoli and blueberries. Triathletes, daughters, sons, sisters, brothers, moms, dads, friends. Lawyers, nurses, teachers, receptionists, reporters, pharmaceutical reps, professors, personal trainers, doctors, administrators, health educators, financial experts, engineers, ministers, vice principals, social workers, writers, rocket scientists…

Maybe even you, dear reader.

I definitely don’t want anyone to get lung cancer, but if you’re going to be diagnosed, an early stage diagnosis is a way better diagnosis than a later one.

Lung cancer screening can mean the difference between late or early stage, a poor prognosis or a cure.

Early detection matters! Let’s catch it early!

Lung Cancer Screening matters – for all people at high risk!

Tell your doctor. Tell a politician. Get a white ribbon and tell the world.

Let’s act now!

Awesome Ottawa lung cancer survivor advocates Andrea Redway (lawyer), Kim MacIntosh (nurse) and me.
All diagnosed later stage, all very grateful for life-extending lung cancer research.

Health and Advocacy Update

First the good news: I haven’t had a scan yet, but based on my perception, the chemo seems to be working! I’m breathing better, coughing less and swallowing a little better. Good news! So very grateful for another extension on life!

I had my third round of chemo on Monday January 11, and brought in one of the amazing white ribbons that Heidi and Pierre Onda from Colorado have been generously making and sending out with love to whoever asks for one. This is an inclusive, unbranded campaign to raise lung cancer awareness, and it goes by the hashtag #TheWhiteRibbonProject. It has a growing presence on social media and at cancer centers across North America.

This exciting campaign is growing, and here’s a video (generously made by Katie Brown of LUNGevity) which gives you a small taste of the number of lung cancer advocates, oncologists, researchers and others who have keenly participated. If you look closely, you may recognise awesome Eastern Ontario advocate Kim MacIntosh near the end, and me with the chemo receptionist at The Ottawa Hospital. That first video got stuffed full of photo’s, so Katie started a second one, and then a third one for Canada, and she keeps adding photo’s as we send them to her! Everyone is welcome to participate!

There I go again: I was supposed to be giving you a health update but got distracted by some of the amazing advocacy work that is going on!

Healthwise, so far I have had several really rough days each three week cycle. I spoke with a nurse to get insight on how to better manage the symptoms. I’ll plan and prepare, and this will help me better cope next cycle. I’ll also keep managing my mindset. I’m grateful for Chris Draft who calls and encourages. He is a tremendous advocacy trainer, and offers helpful wisdom like, “We control what we can control”. He is a strong supporter of so many health advocates worldwide, and we are grateful.

Exciting news: my barium swallow study is scheduled for this afternoon (i.e. Tuesday the 19th)! Ordered back in November, I’m very hopeful that this will answer questions about what is happening when I swallow, and give us good information to help me avoid getting aspiration pneumonia again. I also hope to be able to eat more kinds of foods! I have eaten a LOT of soup since the summer!

I’m back from the hospital, and the study went well. I felt a little nervous beforehand, but very relaxed this afternoon and grateful for the support from my support team of friends and also The Ottawa Hospital team. Emilie, the Speech-Language Pathologist was very kind and knowledgeable. She got me to sample a variety of textures of food and drink with barium added in, then the x-ray machine tracked what happened inside. I didn’t choke on anything. We gained new information which informed us about which further tests need to be ordered. I’m being referred to more specialists, and that support is very welcome. I feel privileged to live so close and be connected to the tremendous resources at The Ottawa Hospital.

Here is my amazing Speech-Language Therapist who ran the test. She was eager to take a picture in support of lung cancer awareness, and very supportive of this person affected by lung cancer. I’m very grateful for our big lung cancer team!

Emilie, The Ottawa Hospital Speech-Language Pathologist

Friends make life better

I’m so grateful for friends! Several of my friends are Speech-Language Pathologists, which means that they are experts who do tremendously important work helping people communicate better. Some S-LP’s are experts in helping people swallow better, and today a swallowing expert colleague of one of my S-LP friends came over to watch me swallow a variety of things and give me information about how to avoid choking or aspiration pneumonia. I learned that while swallowing is something we generally do without much thought, it’s actually quite complex and there are many ways it can potentially go wrong. I’ll need a barium swallow test (which involves ingesting radioactive food & drink, and watching what happens to it) to give us more insight into what exactly is going on when I am swallowing.

Many of these are definitely not on the “easy to swallow” list.

I was very grateful for the swallowing expert who came over today. She taught me about the mechanics of swallowing, and gave me a long list of practical tips to help things go down more easily. I feel more empowered to fuel my body better with less risk.

The very brief summary of the plan is to patiently stick with puréed soup and other soft mushy foods. Definitely worth it if that means avoiding pneumonia!

I’m so very grateful for friends and colleagues of friends!

My Roller Coaster Adventure Ride

Well, that bump was bigger than expected! Sadly the radiation in October did not do the cancer-crushing work we were hoping it would. My recovery wasn’t going as well as anticipated, and tests showed I had pneumonia as well as cancer growth. My oncologist and I discussed chemotherapy, which is the only treatment option available to me currently.

My oncologist and I both reached out to some Canadian lung cancer researchers to investigate whether there might be a clinical trial suitable for me available in Canada, either now or in the near future. I was disappointed but not surprised to learn that there is nothing on the horizon.

There are some possibilities in the US, so I applied for the “ALK Second Opinion Program”, which is funded by some generous people affected by the same kind of lung cancer that is affecting me (ALK). I learned within a couple of hours that my application was accepted, so the program will pay for me to have an online appointment with one of the top ALK researchers in the world. I have met most of the doctors on their list, and it is a tough decision because they are not only brilliant but also very kind. I plan to go with the Boston team because, although Dr. Alice Shaw is not spending much time seeing patients there now, they may have a clinical trial appropriate for me in future, and Boston is much easier to travel to than Nashville or Colorado. My oncologist has very kindly offered to participate in the online appointment with me, and one of my dear ALK sisters has offered to walk with me through this process. I’m very grateful for the support.

I had my first chemo of 2020 on Monday November 30. It hit pretty hard, and I had to go to emergency with a fever which turned out to be another round of pneumonia. Antibiotics helped a lot, and I’m feeling much better. I’m still very tired, coughing a fair bit, and having problems swallowing (since August). Thankfully there is soup, and I’m very grateful for friends who have brought so much soup!! It’s great to have different kinds of soup that I don’t typically make, and it’s so nice to not have to make it myself!

My next chemo is Monday December 21, which will get me through the holidays, as my awesome oncologist noted. The following one is scheduled for January 11. Apart from the blood tests on the Fridays before, I’m hoping to not need any additional hospital visits! 😀

This is quite a change from the targeted therapy lifestyle, which tends to be much more smooth sailing, with fewer appointments and blood tests. I’m so very grateful for my many years of reasonably good health while living with stage four lung cancer. I never expected to live seven years past my diagnosis, and now I have much more hope than I did at diagnosis. I am hopeful for new treatment options. I hope that the chemo I’m on now will work more effectively with fewer side effects than the older harsher chemo I took in 2013-14. I hope researchers will develop new treatment options that will be available just when I need them. That has been my roller coaster adventure ride with lung cancer these seven years, and I hope for more! Oh yes I do!!

More than that, I hope for more research to extend the lives of many more people affected by lung cancer, because there are so many of us and we all want life and need hope. So if you know any lung cancer researchers, please thank them for the good work they are doing and encourage them to keep up the good work with diligence and urgency. So many of us are counting on them!

I’ve worked hard to keep doing light weights, stretching and walking through the Fall. My daily step count has fallen below my usual 9000-10,000, but I haven’t given up hope!

So grateful for friends, for so many delicious soups (and other yummy things!), and for so many calls and messages. This has really sustained me and helped keep me buoyed up.

I don’t talk about my faith a lot, and I would never want anyone to feel like I’m pushing Christianity on anyone. I want to be clear, please stop reading if you are feeling offended. My relationship with God means so much to me, and keeps me going. God is good all the time, and I am grateful for the love of God poured out through Jesus, and the ever-present comfort of the Holy Spirit. It’s the love of Jesus that motivates my advocacy, and any good I do is because of God working through me.

#hope

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

Four Down, One to Go

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

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

Never doubt the difference you can make for someone.

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

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

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

Bump in the Road

Time for an update about my health and treatment …

The lung cancer pill that I take daily is working very well, for the most part. Most of the cancer has shrunk and stopped acting like cancer, which is what the pills are supposed to do. But, cancer cells are not always all identical. In my case, right now, most of the cancer is under control, but some of the cancer isn’t. Some is growing and causing problems, so we need to take action.

I’m very thankful for my great health care team and the new addition to my treatment plan. We will add five radiation treatments to zap those pesky spots. Adding on some radiation is best practices, often called “weeding the garden”. Radiation starts on Monday, five days in a row, then back to taking the same routine of pills. Just a little bump in the road.

I’m very thankful for supportive friends who are giving strength and love, praying and offering to do groceries and bring meals and muffins. I’m thankful that I’ve been walking about 10,000 steps a day, stretching and doing weights. There is so much to be thankful for, including beautiful Fall colours!

So, good news that the pill continues to work effectively against most of the cancer. Good news that I’m in good hands with a solid treatment plan. Great news that I’ve got support. This is just a bump in the road, and we are holding onto hope.

Partnerships beyond Banff

A team of five cancer advocates are excited to announce that the article we wrote was published today!

A year ago today, Diane Manii and I were travelling to Banff Alberta to participate in an international conference for professionals who support people living with cancer.

My goal was to represent people with lung cancer and introduce myself to as many people as I could, kindly challenging them to do more for people affected by lung cancer.

I brought a pile of Canadian flag pins from the office of Catherine McKenna, my elected official. I’d been to her office for pins quite a few times in recent years, and her staff were always generous with pins and pleased to talk about lung cancer with me. Pins are a great excuse to build relationship, near and far. I gave out quite a few in Banff, while telling my lung cancer story to people and asking lots of questions about them and the situation where they work.

I had great conversations with a wide variety of people, including some that I had met prior to the conference. There are so many skilled and caring people working in the cancer world, but the people at this conference – social workers, physiotherapists, psychologists, and the like – asked me way more questions about my family and my cancer journey than most people typically do. I felt cared for as a person, and that was a good gift.

Many people came to hear Diane and me, when we presented about the Ottawa Lung Cancer Support Group. They listened intently as we spoke and asked thoughtful questions afterwards. I deeply hope that many of them have started up lung cancer support groups in the past year. We certainly challenged them to do so. If you want to start up a support group, it’s not hard and there are lots of people willing to help. Diane was an excellent leader who really got us started well, then left us in the very capable hands of Dr. Sophie Lebel when she retired.

For the first time ever, this conference was “Patients Included”, not only incorporating experiences, but also offering five scholarships for people affected by cancer to participate in the full conference.

These scholarships were earned by: Lorna Larsen (@TeamShan Breast Cancer Awareness for Young Women), Karen Haas (@caringcancermom Childhood Cancer advocate mom), Margaret Ng (Brain cancer survivor and wellness worker), Dr. Vicky Forster (@vickyyyf Childhood cancer survivor, cancer research scientist and science writer), and myself (@JillHW lung cancer survivor advocate). It was great to be able to connect with them all!

Vicky and I met when I was looking for a spot for lunch and noticed an empty seat beside her. It was a treat to meet someone so likeminded and engaging. Like me, she is a real people person and connector. We quickly discovered that we were both going to be in Toronto a few weeks later to serve as patient representatives with the Canadian Cancer Society.

We’re excited to share with you this paper about our experiences attending the conference. It is written by all five advocates, and Vicky Forster gave great leadership to the process, putting her connecting and communicating skills to work. Thank you, Vicky!

Research shows that partnerships lead to better research! Thank you to the International Psychosocial Oncology Society, The Canadian Association of Psychosocial Oncology, Dr. Fiona Schulte and Dr. Linda E. Carlson for strongly supporting patient/survivor advocates.

Thank you all for being #team.

You can read the whole article here.

#IPOS19 #CAPO19.