Research Matters

On Monday March 14, The Ottawa Hospital Cancer Centre lab drew blood to be analyzed by Canexia in Vancouver, British Columbia, to test to see if there is a treatable kind of cancer attacking me. We’re still waiting for results and holding onto hope.

Biomarker testing matters.

If the testing comes back with information about a treatable cancer, then taking daily pills could potentially turn my health around. Many lung cancer patients go from extremely poor health to feeling quite well in only a matter of days, once they start taking the right treatment (targeted therapy pills). This is what we are hoping for me. New research, as you probably know, is a game-changer for many people affected by cancer. We are hopeful that there will be some effective new research that will make a difference for me.

It’s possible that I may have to travel to get access to the pills through a clinical trial. We won’t know until we get information from the test. As many of you know, there can be challenges for people affected by lung cancer to get access to the life-extending treatments they need. Advocates fight for drug approvals and funding, for better access to clinical trials and for clinical trials to be offered in more geographical locations. Access matters.

Research matters – it matters for testing, for treatment options and for access to those treatments. Research matters, to me and to so many others, for people with lung cancer and so many other kinds of cancer. Advocacy matters! Research matters!

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.

The Weekend, The Sens, and Guy Lafleur

People are asking for updates, so it’s good to let you know that though there have been a rough few days, the weekend was a little bit better. It’s hard to believe it’s already Wednesday evening. A busy few days taking care of some important items on the to do list.

Another important health update: our awesome friend and neighbour, Chris, drove us to the Cancer Centre for blood work on Monday. Blood has been successfully drawn and sent off to be tested for some potential new circulating tumour DNA which might lead to a potential precision oncology treatment option. Now we wait. With hope.

Back to the week-end update!

The kids and I have had some very good conversations, and we spent time singing together on Saturday, with the middle child on the guitar. For years, a vocal chord has been paralyzed so it’s been challenging to speak, sing, etc. Lately it’s been gradually improving, and the past few days it’s noticeably better. Very thankful! Singing is nothing like it was before cancer, but it’s very good to have recently gotten back almost an octave and a half. So thankful.

Our wonderful church family brought three meals on Thursday, as they have been doing every chemo cycle for quite some time. For a long time before then, dear friends had been bringing food. We had asked for only one meal each three weeks, but suddenly realized that one meal wasn’t quite enough. That realization coincided with a call from one of the pastors asking if the church team could bring food for us. It made good sense (since our need had increased) to give our friends a break and switch to a bigger team. We are very grateful for the abundant generosity of our community.

Friends have been coming by with bagels, treats, additional meals, additional treats, additional bagels, additional treats, and more. We are blessed and appreciative. Thank you so much!

Here is a big treat from Sunday:

Canadian White Ribbon maker and fellow lung cancer survivor advocate, Lisa Weir came (from London Ontario) to visit us with her daughter Sam today. (Thank you to my first born for taking this picture.) The Weir family has made 400 White Ribbons – with love – as part of The White Ribbon Project. We have so much appreciation for them and others who have worked together as a good, kind, loving team to make and give out ribbons with love across Canada. Lisa has also been a great friend and strong supporter. She and Sam came with armloads of dinner for us. They are very kind and good, supportive friends. #grateful

This past year, Sam brought several armloads of ribbons from London to Ottawa to be distributed with love. She is awesome! Thank you, Sam. Sam is married to Josh Brown who plays for the Ottawa Senators. They are huge supporters of Lisa and others affected by lung cancer. Sam has also brought White Ribbons for the Sens to sign. Some have already been given (with love) to lung cancer survivors. Dr. Paul Wheatley-Price is coming by this week to pick up more to be given out to people diagnosed with lung cancer. #thankful

Ribbons made with love by the Weir family were given to Hockey Legend Guy Lafleur who is a powerful advocate for people affected by lung cancer. The Weir family had sent a bundle of ribbons to Robert and Melina in Montreal so they could give them out with love there. Seeing how Guy Lafleur (who had been diagnosed with lung cancer) was advocating for research motivated our team to get him a White Ribbon to express our appreciation for his good work. Reached out to Dr. Normand Blais at CHUM (we’ve both been part of Canadian Cancer Trials Group Lung Executive). Dr. Blais connected with M. Lafleur’s team and worked to make it happen. Robert and Melina brought White Ribbons to Dr. Blais who took them into the Cancer Centre. Here are the pictures. (Dr. Blais is on the right.)

Many of you know that Canada is a bilingual nation, with 20-25% of Canadians speaking French as their first language, including people pictured above. The White Ribbon Project is an international movement, and right from early days we discussed how important it is to make ribbon labels in local languages, and how we could best do this. The reason language matters is because language is love and The White Ribbon Project highly values love. We really wanted to make ribbon labels in French. We were not able to make it happen in time for this photo shoot above, but at the Ottawa community build in August 2021 we made the first French ribbons, many of which have been given with love. (Since then, Ribbons in other languages have also been made and given with love.) Here are some Ottawa build pictures from August.

Canadian advocacy opportunity

Dear Canadian friends,

Here is a terrific advocacy opportunity that could bring years of life to some of the people affected by lung cancer. You could send this letter to your MPP and even email it to 5 friends / family members asking them to also do the same. (Note: it’s already addressed to the federal Health Minister, Minister Duclos, so please send one to him also.) (*You can easily google who is your MPP.)

This could help open access for people affected with lung cancer to get life extending drugs like the one that has helped keep me alive since 2018, Lorbrena (also called “Lorlatinib”).

The Lung Health Foundation has made a video with two lung cancer survivor advocates (Loverne Wowk and me) and Dr. Geoffrey Liu of UHN, the top Canadian researcher for this type of lung cancer. Together we urge you to stand with us, to advocate for life for Canadians affected by ALK lung cancer.

I have lived over eight years with ALK lung cancer, because I’ve been able to take drug after drug. I’ve benefited from four different targeted therapies and a total of seven different lines of treatment. This has greatly extended my life. The quality of life on targeted therapy is so much better than chemotherapy. Last summer on Lorbrena (also called Lorlatinib), I was up on the ladder painting our whole carport. I also stained our shed, planted a new garden bed and painted some of the inside of our home. I have been able to live well on targeted therapy.

Shouldn’t every Canadian be able to get access to effective life-extending treatments?

Please seize this great advocacy opportunity today!

(and let me know when you do)

Best,

Jill

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

Port successfully inserted

A quick note to let you know that I’m home from my morning appointment: the port was successfully inserted earlier today. The clerk, nurses and doctor were all very kind and competent. One nurse successfully inserted an IV line in one try with virtually no pain. She also brought ice chips afterwards. 🙂 Very thankful!

The procedure itself was pain-free and easy (for the patient). Before arriving at the hospital I felt a bit nervous, but meeting some of the people on the team and learning more about what was going to happen quickly made me feel a whole lot better. I put myself into their competent hands and relaxed even before they gave the drugs that help the body relax. Big thank you to everyone who prayed, sent kind words and/or thoughts.

I don’t feel any pain but do feel a bit tired. The plan is to rest today.

Below are some pictures from the passenger seat of a moving car on the ride home: Canada’s Central Experimental Farm (Ornamental Gardens), the Dominion Arboretum, and the Rideau Canal Skateway (Dow’s Lake) – World’s Largest Skating Rink and UNESCO World Heritage Site. What a beautiful, sunny day! Very grateful!

#thankful #joyful #life

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.