I feel a bit like the boy in the story crying "Wolf." I have been crying "cancer" for much longer than I expected (and I suspect longer than most of you expected.) When I got the prognosis that said "Five percent make it to five years" I didn't think I would make it. Those odds didn't look good to me and I prepared myself. I got my affairs in order; I prepared a client transition plan; and I bade farewell to doing first aid. All this in the face of my brother telling me to go buy a cruise ticket for five years out. I didn't do it.
Knowing that longer newsletters don't get read, and the more time passes the longer they get, it's still been hard to get this one written. So I made some executive decisions. This one is a high level summary of the last three months. In the future I'll keep them shorter by writing more frequently. As well, I'll bring more of the personal stories that you love. Oh and I'll take the detailed conference reports into the Waypoints section of my blog.
Still many of you want to know what is happening and continue to support me. Let me bring you up to date on what has happened in a busy autumn.
I'll start by getting health issues out of the way. Part of my fall travels took me to Montreal and four days after I came back I tested positive for covid. My fears realized. My good fortune was that it was mild. A runny nose, sore throat, and a mild fever were my only symptoms. The fever broke the morning after I tested positive. I had to make a decision about taking the covid busting drug paxlovid. After a conversation with my oncologist I decided to wait. And to my fellow carcinomies, I learned that the side effects of afatinib are enhanced through the interactions with paxlovid. I decided to hang on and see if the symptoms got worse. After all I had five days where it would still be effective. While the cough is still hanging on, the rest of the symptoms passed quickly.
The real concern, more mine than the oncologist's, was whether it would mess up my four month CT scan. When the oncologist walked in to the exam room with, "There was nothing remarkable in the CT scan." There was instant relief.
Those who know me know I'm a worry wart so blood pressure is always an issue with the stress of seeing a white coat when I go for my checkup. But this time it was a wee bit higher than usual. I convinced the nurse after I brought my blood pressure down twenty points (from 190/110 to 170/95) by a few deep breaths that the rest was just nerves. I hadn't quite realized how much the stress of potential bad news had been weighing on me. See I'm a worry wart.
The end result is another four month reprieve with a checkup in two months. Good news indeed.
Advocacy and Conferences
One of the things that happens the longer I live in the advanced lung cancer world is that I see more folks dying. Many were diagnosed around the same time or after me and are now gone. That has been tough to take. Not to mix metaphors much but a bit like canaries in the coal mine, they go first and I see the path that my life will take. When I read this to a friend she told me to "Get off the cross, they need the wood." And this takes me right back to where I started with crying wolf.
Recently I went to a celebration of life for a man that I knew through my advanced cancer support group. It was odd to hear his family and friends who had known him all their lives while I had only known him 17 months. Some of our conversations were profound and I got to see an intimate side of him as he faced death. During his service, I was processing more loss. The youngest member of our local BC lung cancer group had passed away that morning. Am I anything more than an ambulance chaser or a grief tourist? I was wondering if attending these services would bring a sense of closure to processing these losses and working out how to carry on without "survivor guilt." I don't have answers.
In the initial stages of dealing with cancer I focused on my personal survival. Now, I find it has shifted to advocacy for others affected by cancers of the lung. My advocacy took me to four conferences.
In mid-October, together with Lung Cancer Canada, the BC Lung Cancer Group on zoom held the first BC Lung Cancer Summit live. We spent an exciting afternoon with experts who gave us information face to face. They covered treatment options, nutrition, exercise and managing finances. Meeting people, who had only met virtually over zoom, was the most valuable part.
In late October, I gave a brief presentation to the Health eMatters conference in Toronto. This patient-driven conference focuses on providing tools to social media influencers. My talk was entitled "Inspiration Porn - Ethical Storytelling Checklist." It drew a line between empowerment and exploitation of patients. As well, I almost reached my fun networking goal of meeting all seventy people present.
Mid-November saw me flying to Montreal for another rushed weekend. BioCanRx Immunotherapy Summit Learning Institute paired a young investigator with a patient scholar. We worked together for the duration of the conference. Technical and hopeful, I will say I didn't get to see much of Montreal.
The final conference was virtual, the day after I tested positive for covid; and virtually attended the BC Cancer Summit. Filled with out-of-the-box presentations (for example, Dr Alika, the incoming president of CMA (Canadian Medical Association) sharing his vision for medicine.) I was once again proud of the province I have chosen to call home. BC Cancer is doing world class research not only in cancer, but specifically in lung cancer.
Other opportunities have opened up as well that combine my writing interests. For example, in September, ILCN (International Lung Cancer News) asked me to sit on their editorial board. So, every two weeks I sit with researchers in lung cancer. We discuss the leading edge of lung cancer research in the news. An article I wrote in the ILCN discusses the patient deaths I mentioned earlier (https://www.ilcn.org/passing-of-the-baton-on-the-death-of-patient-research-advocates/.) I have to come think of it as "Passing the Baton" particularly in the advocacy circles.
As I mentioned in September, I am part of the Canadian Cancer Society's Advisory Council on Research (ACOR.) I have now had several meetings. What a thrill to see the new Breakthrough grant program and the research that it will fund. Patient engagement is a new phenomenon in the research world. I'm privileged to bring the patient perspective to the ACOR table.
I need to remind myself that, almost five years on, "I'm more than a cancer diagnosis." My creative writing and painting continue. In a presentation I made to RCLAS (Royal City Literary Arts Society.) I talked about translating poetry from Spanish, and my favorite Latin poet, Pablo Neruda.
I've been reading at various zoom-based open mics as well. From a daily poem writing discipline, I have over seven hundred, what my friend, Nefertiti calls, "poetry shards." I've been working a bit on beefing up my knowledge of the RCMP. My goal is to improve the Mountie character in "Petaigan Stalk," my
Three-Day Novel - (an annual writing contest.) I want to expand this character and gain a deeper understanding of RCMP crime-solving work.
Daily paintings will result in another calendar shortly. I'm not sure where my painting will take me. It is pretty hard to imagine a show of index card paintings but I was able to use them as a backdrop for some of my slides in my eMatters presentation. There are a few available to see on my blog.
I have begun singing in choir again and attending church in person. The lingering cough folowing covid put a stop to my singing in the Christmas Cantata this past Sunday. Still I was able to attend, and sway along to the beautiful music and lyrics.
In the morning of the "Great Vancouver Snowmeggedon", I was out walking. In a moment of gratitude for being alive, I dropped down and made a snow angel.
I keep up a running practice and doing my regular EXCEL (University of Calgary Wellness Lab guided) workouts twice a week.
For those who are new to this blog, rest assured I'm not proselytizing. For those of you who do know me, it is my custom to bring my post to a close with a Christian Biblical reflection.
Jeremiah was not only a bullfrog (as the song goes) but has always been my favourite Bible prophet. "I’ll show up and take care of you as I promised and bring you back home. I know what I’m doing. I have it all planned out — plans to take care of you, not abandon you, plans to give you the future you hope for." Jeremiah 29:11
Thanks for your ongoing support. It means a lot to me. May the hope, joy, love and peace of the season be with you.