It's been a crazy couple of weeks. After my last scan I got news I wasn't expecting. My oncologist has a lovely way of putting things. "If you were on a clinical trial, it wouldn't be enough to disqualify you." But the reality is that my main tumour has shown a millimetre of growth. That's the thickness of a credit card. Indeed it could be a different radiologist and a measurement error. But then there is a new spot - 13mm that's half an inch for my American friends. That's a little more serious. I've had spots like that before that have resolved and that's the hope. There will be another scan on Nov 10 and there is a wee bit more than usual riding on it.
Add that to chemo lite not being so lite. And I'm feeling a little disoriented. My WBC (White blood cells) are in range which is usually the big worry. But my RBC (Red blood cells) are as low as I have ever seen them and that comes with a price. Fatigue is the main one. I have to stop and take a break on my long hill. My 5K has dropped to 3.5 or 4 and there more walking than actual running. And I sleep a lot. There is a loss of appetite to go along with it all.
Travel Week
When my last infusion landed on a Thursday before my travel week I was pretty excited. I wasn't going to have to juggle that schedule. But I forgot that days four and five after the infusion are the bad ones. So when I climbed on the plane on Monday (Day 4) to fly to Halifax I didn't feel so hot. Actually I felt pretty crappy. Severe metal mouth and brutal fatigue.
It was a two hop to Halifax through Calgary. I have sprinted across Calgary airport to catch my next flight in the past. I had an hour layover. Imagine my relief when I came out of my landing gate looking for directions to my boarding gate at A22. The sign pointed to A21 to the left and A23 to the right. I realized that I was getting right back on the plane I had deplaned from. Relief.
Of course the plane circling Halifax for 45 minutes to let a thunderstorm pass put us in 45 minutes late. By the time we got to the hotel it was almost 11pm. Let me tell you when I went up to my room and though I could hear the latch open, the door would not open, I was not thrilled. The receptionist managed to get the jammed latch open though. I collapsed and slept like a log.
Patient Voice
Looking back on the year it is surprising how much the group has accomplished. The most poignant part of the afternoon was a followup to the "CMA Apology to First Nations." I had to miss part of it but later listened to the recording. It is a powerful and important step for the CMA to take.
We also began the process of looking forward to the next year and our activities. One project that I have chosen is an advocacy position on the Canadian Task Force on Preventive Health Care (CTFPHC). The CTFPHC is the governing body in Canada that develops and disseminates evidence-based guidelines for preventive health care, including cancer screening. The Patient Voice work will be to align with the Strategic Priority Initiatives that CMA has identified. The struggle is to make these Guidelines more current and useful on a national basis.
The next morning we undertook an advocacy training session with the CMA Young Ambassodaors program. This group of young folk includes medical trainees, residents, and young physicians. The task was to develop an advocacy program for an adminstrative challenge that physicians face. Bringing our advocacy experience together with their physician understanding and stories of the problem was insightful for both groups.
International Conference on Physician Health (ICPH)
My fellow Patient Voice members scattered back to their respective communities. I stayed an extra day and participated in the opening day of the ICPH. I knew the opening key note would be good but it exceeded all my expectations. Dr Hayley Wickenheiser brought her Olympic Gold medal experience to her experience as a medical trainee and now ER doctor at 38 years of age. Some memorable quotes from her talk:
- "Being the best in the world at being the best in the world."
- "Courage has to be one step ahead of fear."
- "Safe is death."
- "Rest is a weapon. The myth that we can survive on three hours of sleep is just that a myth."
The following sessions were as insightful.
- Augmented Intelligence (AI) is a much more raional approach to Artificial Intelligence. Being clear about what problem AI is trying to solve is a way of cutting through vendor hype selling solutions to problems that may not exist.
- Another session on creating compelling stories highlighted the importance of inspiring stories to support data.
- And my final session addressed the challenges of creating psychosocial health and safety for health care professionals. The metaphor of shoemakers children having bad footwear came up. Health and safety is complex and solutions need to be multifaceted.
I was surprised that my expectation as the only patient there wasn't true. I thought I would know only a few people in CMA leadership. Not true. I had at least fifteen come up and introduce themselves as a result of the #redtoque visibility on social media. The list included the editor of CMAJ and a prominent doctor in the transgender space in Alberta! Who knew?
Health eMatters
Late Thursday night I headed out to Toronto for the final leg of my trip. As I said to more than a few folk, a chance to reconnect with my cancer peeps. Health eMatters is a unique conference. While sponsored by Multiple Myeloma Canada, it brings together cancer affected social media influencers from across Canada. Not only do we share insights into various social media platforms but also dive into the technical aspects of cancer policy.
This year we had a speaker from the newly rebranded Canadian Drug Agency as well as our tradtional pharma panel. I remember the first year there was a palpable tension with the pharma panel. This year there was an eagerness and an excitement to learn how we could work with these folks. The visionary nature of a pharmaceutical company bringing a Chief Patient Experience Officer into the C-suite is exciting and very patient-centric.
Home Again
I arrived home late on Saturday night and immediately took up my pet rat sitting duties. Golly but how I miss having pets.
What I hadn't expected was that my exhaustion would last a week not just a few days. Hence the disorientation. I'm learning to accept that this chemo gives me fatigue - almost directly correlated to low red blood cell counts. My recovery times when exercising have definitely lengthened and my need for naps has increased. This is requiring me to make another adjustment in my thinking.
On Sunday afternoon I sat and listened to what has become my favorite church service - Jazz Vespers. The combination of music interspersed with short meditations gives me a space for thinking that I don't have anywhere else.
As I listened to the jazz orchestra and then a meditation on this passage from Ecclesiastes:
Ecclesiastes 4:9-12 RSV
"Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow; but woe to him who is alone when he falls and has not another to lift him up. "
Following this with a piece written by Allan Baylock called "El Abrazo" (a hug in Spanish) (https://open.spotify.com/track/4jLoUwlj7ME7DwfvEyz9iJ) left me in tears. Starting with a simple piano melody the piece deteriates into a beautiful cacophony of disorientation. Then it comes back to the beautiful piano melody to finish. While life may not return to exactly the same quiet normal, the metaphor was reassuring in the face of my disorienting week.
I am not alone. Whether it is my family, my cancer peeps, my recovery community, the larger patient community or just casual conversations with folks in the grocery store, I am not alone. I have a sense of belonging, purpose and service.
Thank you all for your support and grounding as I seek to orient myself to my new reality.