It is Saturday, August 14th 2021, and I’m relaxing at an AirBnB located on Corkums Island just outside the town of Lunenburg, Nova Scotia. It is a grey morning with a heavy fog but charming none-the-less. It was just like this yesterday but by mid-afternoon, the sun was shinning and reflecting off the water with beautiful rich hues of ocean blue. The weather station suggests some rain mid-morning and clearing in the afternoon.
I had a wonderful sleep last night from around 10:00 pm to 3:30 am, a short time up to look after nature’s call, a moment to stoke the wood stove, watch it ignite, and back to bed. I was asleep in moments and got up around 6:00 am. That is a remarkable sleep night for me. The days of going to sleep at 10:00 pm and staying asleep to 8:00 am the next day are only a vague memory. I haven’t slept that way for two decades. Interrupted sleep is pretty typical as you age.
I’m sitting on a most comfortable coach, reading a good mystery novel, coffee is brewing, had poached eggs to start my day, followed with the most delectable raisin bread toast, classical music is playing, the wood stove is warming me, and I’m in a place of emotional bliss. I don’t have works to fully describe my feelings right now but I am fully engaged with my world in the most possible way imaginable and clearly in a happy place.
Janet is up, took a break from reading, and is working on a puzzle. This moment puts me in mind of the Louis Armstrong’s pop jazz classic, What a Wonderful World.
Moments like this are to cherished. They are short lived but well worth aspiring to have as frequently as possible. I think the question I ask myself is what conditions precipitate getting to this wonderful emotional state? My goal in this post is to take a stab at answering that question.
I had an interesting conversation with my Oncologist last week. Our face-to-face conversations are always about the state of my physical health but frequently about the state of my mind. He often comments on how I am his favourite patient and I think that because I show up to appointments upbeat, inquisitive, supportive of all the remarkable care I’ve received throughout my treatment, and I was touched with how caring a doctor he is. It is a privilege having Dr. Wojciech Morzycki in charge of my treatment. He knows I refuse to allow cancer dictate how I live my remaining days. He is impressed with my active decision to live large and often calls me out when he thinks I’m pushing my physical envelope by doing too much or taking a risk where I might get injured.
I usually ask him how’s he doing. All our doctors are hurting from the challenges they face maintaining quality care for patients and compliance with COVID visitation restrictions. It is clear my Oncologist needs a break to catch his breath and recharge but that’s not likely in the near future. His answer to my question on how’s he doing came as a bit of a surprise at our last appointment.
His practice is massive. Most of his patients are in my age range from 50 up. He reports that most have not found a way to deal with their disease except in a most negative way. In more cases than he wishes to count, many blame him for their cancer. I can see the pain in his face that his patients paint him into that corner and there is no point in arguing with them. Some believe this to be the case or worse; he’s withholding a treatment that will cure them.
From when I was first diagnosed, I never spent much mental energy on thinking about how come I had cancer. I didn’t see much value in going down that road. I didn’t pick cancer, it picked me. I don’t know why or when but does it really make any difference to answer those questions? I don’t think so and I never for a moment thought about placing blame on anyone.
I was upset that there was a delay with my family physician getting me scheduled for tests because I think I slipped through the cracks and that was on her end. But that mistake didn’t have anything to do with me having cancer; it just slowed getting into treatment by a couple of months and that delay had no impact on changing the outcome. Early detection is hands-down the best way to ensure a positive treatment outcome, but my cancer likely stated two decades ago and there is no early detection of esophageal cancer as yet or most of the slow growing cancers for that matter.
To return to the subject of this blog, it is truly gratifying hearing from family, friends, and my support pillars that I inspire them to reflect on their own lives. I didn’t set out with that in mind when I started to post my ramblings; my goal was to help others in their own battle with a life-threatening disease to understand what was coming and better cope. Every aspect of an extreme treatment is terrifying. I have the benefit of being surrounded by a large loving family who are my stay. In the clinics and other treatment locations, I frequently encounter people without anyone in their corner to provide the kind of emotional support I enjoy.
When I started to blog in January 2020, those are the folks I hoped to reach in an effort to educate, prepare them, and offer comfort as they headed down the same road I’m travelling. I look at myself as a pretty regular guy who got dealt a miserable hand which immediately changed the course of my life. That is the same for everyone in treatment fighting the battle of their life. This battle is a lot easier when you are wrapped in an afghan of love.
By the way, when I started to blog, I believed my cancer was localized and consequently curable. I even created business cards with my blog address and the tag line, “Future Cancer Survivor.” As we now know, that is not the case. Since my diagnosis I have been on the same emotional roller coaster as others in a comparable battle. I hit the bottom of the track with each new crisis and have found the courage to cope. I believe that is a gift from God. When the coaster bottoms out, I have a tough emotional go for a while but it passes. Why? I think it is because I’m wrapped in love.
With that said, there were a number of crisis moments in which it proved difficult to remain focused and upbeat. My example is what every patient experiences more or less. Through most of these times. my despair was short lived and I still maintained a positive outlook to the future. It was clear in spite of my refusal to cancer dictate how I would live my life, it did influence the intensity and nature of what I could do alone safely. Most of the things I hoped to do had to be with someone else present in case problems surfaced. What follows is a summary of my crisis moments but everyone in cancer care has their own list of moments. Some do okay and others slip into the abyss for long periods. It is during those time that the care and concern of support pillars really makes a difference.
- Crisis 1 Dec-2019 – Learning I have cancer, looking like esophageal.
- Crisis 2 Apr-2020 – Treatment delay due to COVID.
- Crisis 3 May-2020 – Surgical change once on the table such that my stomach was removed.
- Crisis 4 May-2020 – Blood Clots filling both my lungs and ending up in Step Down.
- Crisis 5 May-2020 – One infection to the next and ending up in ICU.
- Crisis 6 Jul-2020 – Detection of some unexplained shadows on my liver.
- Crisis 7 Aug-2020 – Confirmation my esophageal cancer metastasized in my liver. Confirmation I am incurable.
- Crisis 8 Sep-2020 – Start of aggressive chemotherapy – lots of side effects, diarrhea, leading to extreme weight loss.
- Crisis 9 Feb-2021 – Chemo working to stall progress of cancer but destroying my bone marrow – must stop.
- Crisis 10 May-2021 – Chemo resistive – all chemo options exhausted.
In spite of all of the setbacks, I still find myself pretty optimistic and frequently wonder how come? What follows is a reasonable stab at answers for that question.
- Early on in my care I reconciled that death was a real possibility and accepted that and made sure all the usual end-of-life plans such as funeral arrangements, purchase of a grave site, plans for an evening wake/party, updating of wills, and payment of debt to secure Janet’s financial stability after I’m gone. Dealing with the topic of death openly and involving family, friends, and support pillars puts that uncomfortable subject behind me.
- Finding my voice to talk about my disease was through the ramblings in my blog postings. I do talk about my disease openly with anyone interested but I don’t make it the subject of conversations unless others ask. There are plenty of better things to talk about.
- Occasionally I feel sorry for myself as this is not the future I planned. At each of those moments I remind myself I want to live long enough for my grandson Jacob to have a memory of his Pappa. That almost always snaps me out of the doldrums.
- I set achievable goals; more short term and when I reach them, I set a new goal. For example, I meet Coach Brad Tuesday, Thursday, and Saturdays at his place to ride his bicycle trainer while he puts in time on the treadmill. I started with 15 minutes, then 20, 30, until I was up to 60 minutes. As the advice of my nutritionist, I’ve cut back to 30 minutes as she thinks I’m burning too many calories and a higher priority right now is to get my weight up.
- I set plans in motion for a family reunion in August, 2022. I don’t know if I’ll be around to attend but I now have that on my horizon as a long-term goal.
- I have a big bucket list of adventures. Admittedly not everyone is up for the things I’m doing but I think the important message is to create a realistic bucket list and start checking things off. For example, one of my things is to be a better cook. I have a long way to go but I am putting out the best food ever.
So how come I’m so frigging happy right now? (Do I sound a little like Scrooge at the end of Christmas Carol) I don’t fully know but taking StayCations with my wife is a time to relax, read a book, keep the music playing in the background, eat well, sleep well, enjoy a fire, explore a part of the province I haven’t seen before and collect my thoughts.
Although complicated to explain, I can confidently share reconnecting with people and letting them know how important they are to me, is a cornerstone of feeling good in my own skin and that all is right with the world. I have become quite comfortable letting people I know I love them without reserve. I don’t love everyone in my life but there are plenty of folks I am proud to call my friend and I let them know. I can’t think of any downside letter people know they count and are important.
What does this say about me? I don’t really know but it gives me a lot of joy making a conscientious effort to boast those who cross my path with words of encouragement and praise. I think it helps them to be a better version of themselves. Years ago I adopted the following line as a way I wanted my life’s direction to unfold, “It’s now what I do, it’s that I do something that changes you from the way you were to something that’s a little like me when I take my hands away.” That’s the teacher in me!
It is clear we are passing through a time with the highest degree of negativity I can remember, more mental health victims than ever, more lives displaced from loss of employment, etc. I can’t fix that but it is easy to remain upbeat and bring a positive message to anyone willing to listen.
I hope my rambling here has offered you something to think about.
As always, I am so glad to have my family, friends, and support pillars at my side. You and God continuing to hold my hand and give me courage, is motivating and right this moment I am at such a place of emotional peace.
Lots of Love,