Happy Cancer Survivors Day! advocacy + brief health update

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

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

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

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!

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.

Home, Emergency again, then Home again

I’m very glad to be home! Got home late Tuesday afternoon (Feb. 15) from hospital, then was admitted back to Emergency on Thursday afternoon (Feb. 17) after chemo but was allowed to come home again later on Thursday (yesterday, Feb. 17).

Tuesday was a flurry of activity to get everything ready for me to go home from hospital. I’m very grateful for all the people who worked hard to make that happen.

We did a blood transfusion and organized home oxygen which is definitely necessary. My blood oxygen drops very quickly without it, but the good news is that is comes back up very quickly with oxygen. My blood oxygen was very low Friday night when I went to emergency, at a level where a person can faint. They quickly got me up into the normal range. My friend Shonna loaned her pulse oximeter to stick on my finger to check at home. It has been showing good numbers for both the blood oxygen levels and pulse rate with the oxygen.

While I was in hospital they ran lots of tests and ruled out many bad things which is such a relief, but they weren’t able to determine the cause of the low blood oxygen. One of the tests they did was a bronchoscopy, and it will likely take a couple of weeks to get all the results back from that. They took samples and are growing cultures to see if there is a treatable infection that we’re dealing with.

I am so very happy to be with my kids. I had left the house on Friday evening (Feb. 11) for a CT scan, then ended up being away four days. I went suddenly to Emergency straight from the CT scan, then was admitted to hospital a couple of days later. I got home late Tuesday afternoon (Feb. 15) – thank you Mieke for the ride, and everyone else who offered – so very happy to be home with my kids. It was good to talk with them and listen to them and just be with them. They spoiled me with cookies and cake and we enjoyed celebrating together.

Thursday (Feb. 17) meant back to the hospital for chemo as usual, every three weeks (cycle #22). This time another lung cancer survivor advocate, Taylor Westerman, was also there. We’d met online and have been trying to connect in person. (He heard about The White Ribbon Project, and I really want to give him a white ribbon, but we haven’t been able to make that happen yet.) I heard a nurse say “Taylor” and it seemed that the guy across the chemo unit looked like the Taylor I’d been connecting with through Messenger, so I called out to him and sure enough, it was Taylor Westerman! It was so nice to see him in person, and when I was leaving I popped over to say a quick hello and take this picture (below), though we didn’t chat for long because I wasn’t feeling well. Notice Taylor’s great tee shirt, and I’ve got a LUNGevity HOPE pin on my lapel. Lung cancer awareness happens 24-7, 12 months a year!

After chatting with Taylor, I paused to say a very quick hello to the awesome clinical trials nurses who took such good care of me when I was on a life-extending clinical trial for the investigational drug “Ceritinib” from 2015-2017. (The trial was testing to see how effective it is when taken with or without food.) I am so thankful for that trial which not only kept me alive until 2017, but long enough for more new drugs to be approved and accessible here in Canada, drugs that are keeping me alive today.

I planned to head home after briefly chatting with the clinical trials nurses but they noticed I was looking puffier than usual. They asked a few questions and before you know it they got together a bag of snacks (big thank you!) and a wheelchair for me to be wheeled to emergency, treated with IV drugs and observed for a few hours. The good folks in emergency wanted me to stay overnight, but agreed to let me go home. Mieke kindly came to pick me up and take me home again. The traffic was terrible, the weather was awful, but Mieke drove very carefully and got us both home safely. Thank you, Mieke. Thank you also to other friends who offered to drive.

So I’m home again, again, and very grateful. Also extremely tired, thanks to the double whammy of chemo and Benadryl. I can barely keep these eyes open so hope this post makes sense. Special appreciation to the oxygen people. Also to my awesome oncologist who happened to be on call the week I was in hospital. He’s only on call about three times a year, so this was a huge gift for me. I also am grateful for a neighbourhood connection with the very nice family doc who was working on the floor. When she mentioned that she teaches family docs and med students I went completely into advocate mode and steered the conversation. She told me she had been in contact with another lung cancer advocate in Ottawa. Andrea Redway had already reached out to her. Way to go Andrea! Andrea is awesome! I made sure the doctor knew it, and encouraged her to reach out to either of us anytime. Then after the doctor left I messaged Andrea to tell her that I had also met the doctor. It’s so good to be part of a team. Very grateful for Andrea and others like her who share the load. The more we work together as a good team, the better we’ll all be. #team

Very grateful for people from Parkdale United Church who are bringing us dinners: yesterday, today and tomorrow. Three meals every chemo cycle makes our lives so much easier. Thank you! #team

Also a big shout out to Hospice Care Ottawa for delivering a lovely care package (photo below) on Thursday (yesterday) with a homemade valentine’s day card from a local school and some snacks. Very thoughtful!

Compassionate and Skilled Care

I’m taking a moment to let you know that chemo #21 went well yesterday. My nurse was very kind, caring and skilled. She never mentioned that she was overdue for her break; she did not rush or complain. (I only knew about her break since I overheard someone else quietly mention it.) She spent over an hour warming my arms and carefully searching for a vein. She ended up finding only one, in the same spot where it worked last time. Thank you to those who prayed and sent good thoughts. She got it on the first poke! Thank you also to those who suggested good ideas like warm blankets and smaller needles. The nurses are very skilled and use those great strategies. I used to have great veins early on in treatment days, but not so much lately. Eight years of constant treatment takes its toll. While we survivors are very glad to be alive, survivorship can bring challenges.

I’m very thankful to be scheduled to get a port early on the morning of February 17, before chemo #22. The nurse should be able to use it for that chemo the same day. If all goes well, no more hunting for veins for a long time! It’s such a relief that busy nurses won’t have to spend so much of their time to insert a needle.

My oncologist, Dr. Nicholas, came to see me at chemo. He is very kind and hard working. The nurses also appreciate him and recognize that he is caring and compassionate as well as up to date with the latest research. We didn’t take a picture, but The Ottawa Hospital has posted at least three larger than life pictures of Dr. Nicholas with a fellow cancer survivor at the General Campus, so here is a picture of one of their pictures.

Compassionate and skilled care makes all the difference.

#grateful

That was quick!

That was quick! This morning I received a call with an appointment for my port line to be installed. This is scheduled to happen on Thursday February 17 at 7am. The procedure takes about 45 minutes and is done with conscious sedation. I’ll be there for about 3 hours and won’t be able to drive myself. I should be able to make it to chemo later that day, and the chemo nurse should be able to use the port that day for chemo #22. We know that things can get rescheduled, especially during COVID, but the plan is for me to get a port in just over 3 weeks! That means that this coming Thursday may be the last time nurses need to hunt for a vein to give me chemotherapy. Very exciting! Very grateful!