Scan Results, Swallowing and Advocacy

Time for another health update (with a bit of an advocacy update)!

I had another regularly scheduled CT scan, and like all the scans since I started chemo it showed that the cancer has either shrunk or remained stable. Good news! Amazing news, actually! Even while on a treatment break the cancer is held at bay. So very grateful! Seems like a miracle! My symptom management (palliative care) doctor thinks that perhaps my immune system now recognizes the cancer as something to attack. Really great news!

I haven’t heard a recent update, but it seems the clinical trial I’m hoping for probably won’t open up in Toronto until maybe December or next year. Ottawa probably won’t open it until the Spring. There are many hoops to jump through, and COVID has affected cancer research which affects so many people. The good news is that it does not seem so urgently needed by me right now. Of course urgency matters tremendously, as things can change very quickly. We never know how long we may be able to wait, and there are many people who need more treatment options urgently. Survivors matter!

More research means more survivors and better survivorship! I continue to pursue a variety of advocacy efforts, including cancer research and fundraising for research. Today, among other things, I connected with the Canadian Cancer Society who want to share my story again, and people from the Ontario Institute for Cancer Research and Canadian Cancer Trials Group. I also messaged Prime Minister Trudeau about lung cancer.

But back to the health update … I’ve faced swallowing challenges since the summer, even though I’m very careful when eating or drinking. I lean forward and place my chin on my chest when I swallow. I’m eating a lot of soup and some other very soft foods, one very small mouthful at a time alternating with sips of water. I only eat very small, very healthy meals, and try to eat four or five times per day to get as much nutrition as I can manage.

I reached out to the Speech-Language Pathologist who helped me a couple of years ago when I was having swallowing issues previously and did the swallowing study. She is lovely and we had an online appointment last week where she gave me a lot of helpful tips and reassurance.

A referral to an Ear Nose Throat doctor was made, with an upper endoscopy scheduled for this afternoon. I’m looking forward to learning what the procedure will tell us, though a little nervous about having a camera stuck down my throat. There will be sedation, and I think my kids are looking forward to seeing if I’ll still be feeling the effects when I get home. Apparently some people don’t remember anything about the procedure, so I’m hopeful it won’t be as difficult as the similar procedures I’ve had before.

November is Lung Cancer Awareness Month. What is your Cancer Centre doing to celebrate? #LCAM

Health and Advocacy Update

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

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

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

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

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

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

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

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

Emilie, The Ottawa Hospital Speech-Language Pathologist