The social media cancer world has its own unique language. Muggles describes people who don't have cancer. "Carcinomies" is a gentle blending of carcinoma and gnomes (or maybe homies) words for loyal friends. It is a word that we often use to describe ourselves. Language as it turns out is becoming more and more important to me.
I have been engaging more and more with the advanced cancer community. One of the palliative researchers for the podcast "Waiting Room Revolution" recently interviewed me. He snagged after he heard me declare that the podcast had changed my life. He heard me in a zoom dialogue sponsored by the Canadian League of Poets and the medical community. The talk between a doctor/poet and the palliative researcher was fascinating but dry. And they knew it. So when the Q&A started, I jumped in with my bad joke about a country where everyone drives pink autos - a pink carnation. After the laughter subsided I described a change in language. Changing from talking about a "timeline" approach to prognosis to a "roadmap" let me to talk about the future with my oncologist. The peace of mind it gave me was incredible.
Many of you have heard me talking about "scanxiety" YouTube video . It's another word from the cancer world to describe the anxiety we feel as we approach yet another CT scan. The last time I had a CT scan my anxiety was nil. The roadmap discussion about what will happen when we see progression took it away. In comparison to my scan in late August, my scan in early October was a non-event. No anxiety, no apprehension. Despite that fact that we were doing it to followup on a spot flagged by the radiologist, I wasn't worried. Since it hadn't changed, I didn't even think it was important enough to report back to you.
Just before Christmas I had followup again on that spot. The usual round of appointments: an early evening CT scan on Monday; blood work on Wednesday; and then a scheduled call with my oncologist on Thursday afternoon. The worry factor seemed low again. Once again I wasn't fretting about it because I knew what would happen if the spot had grown. I wasn't noticing anything in my body. If anything, removing ramapril from my medication list seems to be helping with my cough.
But what hit me with the relief of discovering that the spot had resolved itself, was how deep the relief was. I knew that to some extent over the previous week or so, I had been going through the motions. I have a lot of routine in my life. Writing habits, exercise habits, meeting habits, and friend conversations. And that had kept me going. But my heart wasn't in it. There was a lack of ambition. Mild depression.
Oh I could get out of bed, after I rolled over and tried to grab a few extra winks. I could write a poem every night - yes I have managed to keep that up since April - but the poems were brief and perfunctory. Done but no craft to them. I could outline an article for a patient perspective on genomic testing for the ILCN (International Lung Cancer News.) But I couldn't bring myself to do the research or begin the actual writing. At some level there was denial and malaise.
When I talk to people who have any experience of lung cancer, they expect me to be on oxygen, struggling with shortness of breath, and easily tired. I'm not but I'm not at my best either. It is hard to put into words. A lot of prominent advocates in the lung cancer world have died recently. I interacted with many on a regular basis. Until the final few months you would not have known most of them were ill.
And that brings up the real heart of my struggle. What does it mean to be ill? Or what does it mean to be well? We have this whole movement called the "Wellness Movement." They focus on the whole person, spiritual, mental, and physical. Websters defines wellness as "the state of good health." WHO describes health as being “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”
Interestingly Pfizer -the "big pharma" company has some thoughts on wellness:
Wellness is the act of practicing healthy habits on a daily basis to attain better physical and mental health outcomes, so that instead of just surviving, you’re thriving.
...Several key areas of your lifestyle are considered dimensions of overall Wellness. They include: social connectedness, exercise, nutrition, sleep and mindfulness. Each one has an impact on your physical and mental health. By making simple and healthy choices on a daily basis, you will be well on your way towards reducing stress, having positive social interactions and achieving optimal wellness.
A lot of oncologists like to use the term NED - no evidence of disease. How does the absence of disease square with illness and wellness? And if that disease is present but not growing - stable - what then?
Ach it's complicated. And I don't have answers. Do we describe it as function - do I have good habits? Or do we describe as emotions and physical sensations- do I feel well?
What I do know is that there is a Creator who loves me. And my job is from their strength to show love and kindness in the world. The prophet Isaiah tells us that wellness is a fleeting thing - often described as "beauty" he reminds us:
Isaiah 40:6-8 - The Message
A voice says, “Shout!”
I said, “What shall I shout?”
“These people are nothing but grass,
their love fragile as wildflowers.
The grass withers, the wildflowers fade,
if God so much as puffs on them.
Aren’t these people just so much grass?
True, the grass withers and the wildflowers fade,
but our God’s Word stands firm and forever.”
I may not have answers but I have a lot of people that pray and support me and for that I am grateful. Thank you.