A few thoughts about faith, hope, love and lungs

I don’t often write about faith or my personal life in this blog. This post is a little different, a glimpse into my inner life. Whether you choose to read further is naturally up to you.

I’m a follower of Jesus and my identity as a follower of Jesus is what inspires my actions and attitudes. The faith community has played a significant role in my life over decades and I am very grateful to connect with, be prayed for and supported in many ways by many different individuals, groups and congregations. It has also been one of my life’s deep joys to speak to so many individuals, groups and congregations.

Being a follower of Jesus was an intentional decision when I was 17 years old, and following Jesus is intentional every day since then. This is what motivates my life, and gives me love for people. This is what motivates my advocacy and what gives me love for people affected by lung cancer. When I say love, I don’t mean a soft and squishy feeling. I mean deliberately working hard for the good of people affected by lung cancer and other kinds of cancer. This is also where my hope comes from. This is what has kept me going all these years, through many difficulties, many hard times. Being a lung cancer advocate has been challenging. I have almost stopped many times. Much encouragement from Chris Draft and a number of other people has helped keep me going, as did a strong sense of calling. Advocacy is what I strongly believe I’m meant to do in this season of life. I have seized this opportunity and I keep seizing this opportunity, looking to live as best as I can given the circumstances, controlling what I can control. Saying yes. Thank you, God.

Below is a hymn that has been very meaningful to me for decades. My parents were both diagnosed with cancer when I was 20 years old, and died within a year, and that was when I first heard this hymn. I was introduced to it by opening up a used hymnal that I had just bought to a “random” page. I was planning to sit at the piano to play and sing some hymns, and the first time I opened it was to that hymn. The hymn captured me and spoke deeply to me right from the first moments I saw it, played and sang it. It was especially significant that year. It helped keep me going.

My Ottawa church, Parkdale United Church, sang this same hymn at the Maundy Thursday evening service this week. One of the ministers is planning to come over to anoint me with oil and pray for healing again this week. So grateful. I had a very significant talk and prayer time with another one of the ministers the other day, who has been praying for me and others affected by cancer for years. She is a strong supporter, a game-changer. She strengthens the soul. I’m very grateful for the pastors and members of this congregation who have supported us and kept us fed both physically and spiritually for years.

We’re strongly supported, and not just by Parkdale. So many of you have told me you’re praying, your team is praying, your church is praying. Thank you. I just got a lovely card and letter from someone from another Ottawa church the other day. Words cannot express our appreciation. I know I’m alive because God is merciful, because God hears and answers prayer. God gives skill to researchers, compassion to clinicians, wisdom and insight all around. God gives love. So very grateful.

The lung cancer community needs more love. I am working hard to pour more love into this community.

O Love That Will Not Let Me Go (Public Domain)

O Love, that wilt not let me go, I rest my weary soul in Thee;
I give Thee back the life I owe, That in Thine ocean depths its flow May richer, fuller be.

O Light, that followest all my way, I yield my flickering torch to Thee; My heart restores its borrowed ray, That in Thy sunshine’s blaze its day May brighter, fairer be.

O Joy, that seekest me through pain, I cannot close my heart to Thee;
I trace the rainbow through the rain, And feel the promise is not vain That morn shall tearless be

O Cross, that liftest up my head, I dare not ask to fly from Thee;
I lay in dust life’s glory dead, And from the ground there blossoms red Life that shall endless be.

#hope

Port update and today’s advocacy highlights

Several people have asked how things are going with the port, so it seems good to tell you that it’s going well! I’ve had chemo through it twice now, and having it changed the whole flavour of the chemo appointment. Instead of wondering with some measure of dread how many pokes would be required before success, each time the nurse had success on the first poke. Such relief! No more heating of the arms, no more slapping or pressing in search of sneaky veins. Both times the nurse simply inserted the needle into the port and all was well. Such relief!

Full disclosure: it hurts a little when the needle (for chemo) goes in. But so much less than when the nurse has to poke around for the vein. There are several pain relief options which could be used. Also, the phlebotomists at the Cancer Centre lab need to poke for blood draws for the blood test that we do every 24-48 hours before treatment, since they are not authorized to use the port. Blood draws don’t tend to hurt, and usually work on the first attempt.

Advocacy highlights: Great day today! Two significant conversations this morning to tell you about: one with someone diagnosed with lung cancer looking for support. She is interested in doing some advocacy also. The other with another person diagnosed with lung cancer who has set up a meeting for us with her MP to attempt to move access to Lorlatinib further forward. We spoke this morning to discuss strategy and make specific plans for this upcoming zoom meeting. I really appreciate being teammates with people who care and who appreciate the value of being part of a good team. Advocacy and life go better with good teammates.

Of course there were many more things on the agenda for today, but those are two being highlighted for today. Those and also this lovely card which just arrived from Martina, another good teammate and fellow cancer research patient representative good teammate. What a treat to receive such a thoughtful gift from a good teammate! #blessed #grateful #team

Disappointing News

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.)

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.)

Testing and Treating Lung Cancer

When I was diagnosed with lung cancer back in 2013, The Ottawa Hospital Cancer Centre tested for two specific kinds of (non-small cell) lung cancer: EGFR and ALK. How thankful we are that they routinely tested for ALK because knowing my specific diagnosis has made a huge difference in terms of my treatment. Because we knew specifically what kind of lung cancer, we could choose the best treatments which have kept me going for over eight years! How thankful we are for testing and treatments.

During those eight years, advances in lung cancer research have been outstanding! Now we can treat so many more kinds of lung cancers. It can be challenging for hospitals to keep up with testing, to keep testing for all the treatable types of lung cancer. I’m happy to report that now The Ottawa Hospital Cancer Centre tests for eleven specific types of lung cancer: PD-L1, EGFR, ALK, ROS1, RET, KRAS, BRAF, HER2, MET, NTRK, and PIK3CA.

Clinical trials can be the best way for some people affected by lung cancer to get the newest treatments, so testing must be aligned with treatments available by clinical trials or compassionate release programs.

Lung cancer research will continue to offer increasing treatment options for people affected by lung cancer. As more advances in the testing and treating of cancer arise, it matters that hospitals ensure that testing aligns with available treatment options.

How many types of lung cancer does your cancer centre test for?

(Note: this testing can also called by other names, for example: biomarker testing, molecular testing, precision oncology, tumour testing, genomic testing, … )

#ResearchMatters

#ChooseHope

Getting our affairs in order

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.

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

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.

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.

Quick update

I’m at cancer centre getting chemo. I needed help getting in since my shortness of breath got significantly worse overnight. Thankful for the new lovely friend who drove me, the porter, the receptionists at the COVID questions table and at chemo, and my good nurse Jessica who went above and beyond. She rolled me in to spend time with (and give a The White Ribbon Project Ribbon to) fellow lung cancer survivor undergoing treatment here at The Ottawa Hospital Cancer Centre, Taylor Westerman, and even took the following picture:

Jessica offered to help after seeing us take this one:

Here she is flushing my brand new port, inserted two days ago. Right now chemotherapy is flowing through it, into my body, fighting and destroying cancer cells! So excited and grateful to be using the new port! I know I’m new to having a port, but so far so good. Not painful. Thank you port insertion team. Thank you Jessica!

And thank you to the lovely young woman who brought ice chips!

In case you missed it, my shortness of breath got much worse overnight. I’m concerned and have talked to the nurses and asked for additional symptom control and supportive care. We continue to explore treatment options and hold onto hope.

Hope matters. Research matters. Supportive care matters. Keep holding onto hope!

No news isn’t always good news

Time for an update about my health in general. Many of you have reached out to ask how I’m doing, some of you have told me you’ve been wondering but haven’t wanted to ask. I’ve received so many messages that I haven’t respond to most of them. I’m very grateful for the care.

Unfortunately there isn’t any more news from the testing done while I was in hospital last month. I’m on oxygen due to shortness of breath, and we don’t know how to treat whatever is causing the shortness of breath. The hospital tests ruled out major things like cancer, heart issues, fluid build-up, blood clots, several infections. We ended up with an uncomfortable mystery.

Obviously breathing really matters, and not knowing why a person’s blood oxygen level dips so low is not good news. We would really like there to be better news to share with you, but right now, sadly, there isn’t.

So for now we will hold onto hope and stay the course with the current treatment while looking into other possible treatment options in case this may be caused by cancer growth (which it might be, though the scans do not clearly show this). There are no clinical trials that we know of that could be a good fit for someone in my situation right now. (If you are in Canada and looking for a clinical trial that might be a good fit for you, you can connect with the Clinical Trials Navigator who is there to help you! Canadian Cancer Clinical Trials Navigator: https://3ctn.ca/for-patients/clinical-trials-nav/ )

Since starting on chemotherapy in 2020, each scan has led us to believe that the cancer is either stable or smaller. We continue to believe that the current treatment is effectively slowing the cancer’s growth (even if not fully abolishing it), so it’s definitely better to continue than to stop. We will go ahead with chemotherapy number 23 tomorrow, do more testing (bloodwork to be done on Monday and sent to Canexia in Vancouver BC Canada), and hold onto hope.

(One of the ways I hold onto hope is to pray, another is to read the Bible, another is to listen to wise friends.)

Fellow lung cancer survivor Taylor and I plan to connect tomorrow morning. (We met in person last chemo and get chemo on the same three-week cycle at The Ottawa Hospital.) I’ll go in a little early to get to see him and give him a white ribbon www.thewhiteribbonproject.org . The White Ribbon Project connects people affected by lung cancer worldwide, and is helping to draw people into community locally also. The power of the white ribbon. How good is that!

You may have noticed I’ve been a little less visible on social media in recent weeks. Yesterday after the port insertion I missed out on uplifting and honouring amazing women for International Women’s Day #IWD2022.

Honouring and uplifting people is good to do every day. Since I didn’t yesterday, today I’m sending out a big general cheer for the women who do tremendous work in the cancer advocacy landscape (too many to name individually, so I’ll name some of the organizations where we may have worked as teammates together): CCTG, 3CTN, OICR, CCS, IASLC, ILCF, LCC, SU2C, LHF, CCSN, CAPO, IPOS, CADTH, TOH, CCMB, PMH, CIHR, LUNGevity, GO2, LuCE, ALK+, AACR, ASCO, … (+ numerous other advocates who have inspired outside of these organizations). What a list! If you are an advocate and there is a way I might help you connect with some amazing teammates in any of these organizations, please feel free to ask. Connecting and uplifting people is a passion. #team

In the pictures above are just a few of the amazing women (and some men) who have inspired many of us. (These are pictures I could quickly find and put on my blog tonight.) So many are not pictured above, and there are very many more to come!

#hope

Noting the unusual

Back in June after a day of fierce gardening, I noticed that there was a bit of dirt in my bra and that the skin of my left breast looked a little unusual. I didn’t think much of it, especially since this chemo gives me a rash sometimes, and I take a long time to heal from cuts and skin irritations these days.

After two weeks it hadn’t gotten better. In fact it was a little worse. I know that it is possible to have more than one kind of cancer at a time, and that unusual looking skin could be a sign of breast cancer, so I called my family doctor and got a phone appointment. I then went in for an in person appointment which lead to a mammogram. After the mammogram I was told I’d meet with a surgeon to discuss the possibility of a biopsy.

In September 2021 I had that appointment with the surgeon. It wasn’t until after I was at the appointment in the Cancer Centre that I learned I would have the biopsy that very day. I’m glad I didn’t have a lot of time to think about it! The surgeon was right: this was so much easier than the lung biopsy. Just a steri-strip, and a waterproof bandage that stayed on a week. It healed up very well. I had to wait another week for results. It could have been breast cancer, or lung cancer which had spread, or something else.

I didn’t tell anyone until September, and before publishing this I had only told a handful of people, including my kids. I’m not sure why. I think maybe because there has been so much grief and uncertainty in the world, and I did not want to add to it unnecessarily.

As I’ve reflected on it, I’ve had a growing conviction that it’s important to talk about it. I want to tell you now because early detection matters. It matters that we pay attention, and when we notice something, it matters to go to the doctor. Lung cancer doesn’t usually give the opportunity for an earlier stage diagnosis, but many other cancers have much better odds. We need to pay attention and if we notice something unusual, we need to act on it.

Early detection matters

I’m very happy to say that they didn’t think it was cancer back in September, but they have continued to follow it since there was a possibility that it was a rare disease, but just this past week the surgeon said it seems to be after-effects from the radiation done in October 2020.

Good news! I didn’t realize how much stress I had been carrying about that until I received this news and noticed my body relax. I’m very thankful and want to share that good news with you.

Thank you for journeying with me and for so many uplifting messages. I’m humbled by the ways so many people care, show kindness, pray… many people have said they pray daily for me. It makes a difference. So much appreciation, so humbled … thank you!

Port Insertion Update

Quite a few people have asked about the port, so it’s probably time for an update.

First, there are no substantial health updates. I continue to be very thankful for and doing well on oxygen while waiting for test results.

The port insertion was initially scheduled to take place last month, but was cancelled because I was in hospital. Good news is that my hard-working oncologist put in another request and now it’s rescheduled for next week!

The procedure takes about three hours, and no food or drink is allowed from midnight the night before. The mother of one of my dear friends from high school is generously driving me to and from the appointment.

People keep saying how much easier the port made things for them, so having the port definitely sounds like a good choice. I’m a little nervous about the actual procedure, so would welcome prayers and good thoughts for Tuesday morning, March 8th.