exercise

Challenges and Choices

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

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

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

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

Canadian Thanksgiving 2022
Canadian Thanksgiving 2022

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

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

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

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

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

Replenish

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recent Health Updates: Exercise

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

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

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

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

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

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

#hope

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

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

So much gratitude!

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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.