The blog title is a quote from Carl Jung. I will translate it later.
That is not me in the picture. Like me, that individual is engaged in reflection. That is where I have been through the last several weeks. To be honest, I had moments of feeling sorry for myself but I am past that and ready to move forward. I think that’s a normal reaction to discovering that the cancer you carry is incurable. A friend, Caitlin, who’s medical specialization is a Palliative Care, shared the following message which is powerful and is now part of my mantra.
We are all living but we are all dying too – and it’s painful to know you’re further along on that timeline than you’d hoped. I think you are so wise to focus on what it means to be living.Caitlin Lees, MA, MSc, MD, FRCPC
PGY5 Palliative Medicine, Dalhousie University
In case this is the first time you’ve read my blog, my challenge with cancer started about a year ago. At the time I decided to share the experience through this blog as a “teachable moment” for others. As well, at the time I fully expected to be calling myself a cancer survivor which is no longer on the table.
I have the good fortune of belonging to a large loving family, blessed with the genuine affection of a massive and global collection of friends, and believe that God is at my side holding my hand. There are many who are on a similar journey without the support pillars I enjoy. My mission from the outset was to provide comfort and hope for others through sharing the knowledge I’ve garnered along the way. Living with cancer is frightening but the more we know, the better we cope; at least that’s what I believe.
My journey began with difficulty swallowing and a visit to my family physician in August 2019 to determine the cause. After a barium swallow in November and an endoscopy in December, Dr. Alison Wallace diagnosed Esophageal cancer with a tumour, likely malignant, growing around the distal end of my esophagus where it meets the stomach.
The good news was it appeared to be localized to that location and was treatable with radiation, chemotherapy and followed by surgery. Dr. Wallace marked the drawing detailing the problem area and advised that the surgical plan was to remove almost all of my esophagus and stretch my stomach up to rejoin with what remained.
Twenty-five Radiation treatments and weekly chemotherapy sessions started in February and then Covid 19 arrived so surgery was delayed. On Friday, May 22nd, 2020 I checked into the Victoria General Hospital at 6:00 am for surgery at 8:00 am. Although I didn’t know it then, that morning was the last time I was to see my wife, children, or friends for the next twenty-one days.
I woke up in recovery around 10:00 pm and was moved to a private room in the Thoracic Ward around midnight. On Saturday I learned that the surgical plan changed when I was on the table. The tumour was more in the wall of my stomach. Consequently, my stomach was completely removed, about half of my esophagus was removed, the top of the duodenum sealed off, and a section of small intestine dissected and used to rejoin what remained of my esophagus to my small intestine. The join is just past where the duodenum changes from a smooth tissue attached to the walls of the abdomen to the jejunum which has many ridges to increase the surface area for abortion of food. This put the join after the duodenum so secretions from my liver and pancreas would continue to help in the digestion of food.
I felt pretty good. There was no apparent pain but that was a result of lots of meds. I had tubes coming out of everywhere to serve as drains or to administer pain meds. The most obvious was the drain going through my nose to my abdomen. There we so many bandages on my abdomen that it was hard to tell where the tubes were going through the skin. When I look in the mirror today, my abdomen looks like a mine field. I will not be removing my shirt in public for a time to come, if ever.
Patients are encouraged to get up and walk as soon as possible after surgery. The biggest challenge was lugging the IV pole as I headed down the corridor with a nurse at my side. Given I had run a 5K a few days earlier, I was surprised by how difficult it was just getting one foot in front of the other. While walking, I had some difficulty getting a full breath and my oxygen level was lower than it should be. An X-ray revealed that my right lung was about 40% collapsed. I understand this is common. In goes another tube to drain and assist with helping the lung inflate; another hole but this time under my arm and another device to lug along as I walked the hallway.
There was a scale at the end of the corridor. I stepped on and the readout showed I was 90 kg (199 lbs). That was a shock. I was 82 kg (181 lbs) when I arrived two days ago. I hadn’t eaten anything so how was this possible? I only needed to look at my ankles and wrists for the answer; they were huge. I was storing fluid in my extremities. I understand this is common and worsens as the time on the operating table increases. I was on the table for about ten hours. Apparently it normally resolves over time.
Around 9:00 am Sunday morning I was scheduled for a second X-Ray to check that my right lung had inflated through the night. The porter came in with a wheelchair and the nurse helped me to my feet. I got in the chair and the nurse noticed that my oxygen dropped from 96% to 52%. She instructed me to immediately return to bed and moved to help me up. As I stood, searing pain ripped throughout my chest and I was unable to breath. I settled back into the bed with a nurse on each arm and as I dropped back all I could think was, “How could I die now alone and without Janet at my side?” Tears started to flow and I heard an untold number of voices shouting instructions to open the oxygen wide, inject blood thinners, and it was blood clots. I don’t know how many people were in the room but I’m guessing eight to ten. They arrived in seconds. In spite of the searing pain I could sense the urgency in their voices. The nurses on each side were caressing my arms and encouraging me to be stay calm to allow the blood thinners to take effect. My memory of what ensued after that is non-existent until I heard someone saying my name and opened my eyes to a new location. I was in the step-down which is one stage away from ICU. I felt total exhaustion but I was alive.
For the remainder of the time in the hospital I went from one infection to another, in and out of ICU, Step-down, and the Ward. Even now, Meredith (my daughter who was the main point of contact for my care team as Janet’s hearing lose makes it difficult for her to hear on the phone) tells me about events that are news to me. And with no visitors permitted due to COVID, I had moments of extreme loneliness. But the time passed and after twenty-one days, Janet and Meredith picked me up to go home. As I saw them outside the entrance, I started to cry tears of joy uncontrollably.
In July I had a PET scan. To make a long story short, cancer cells from my original tumour metastasized in my liver. As described in blog titled Worst Possible News, I learned there is no cure but there are chemotherapy options to extend my life.
The chemotherapy I’m talking about is aggressive and will continue as long as it proves effective. So every two weeks, I sit in the chair for three hours and then for about two days I wear a bottle that keeps dripping this toxic mix of drugs via a port-a-calf directly above my heart through a line permanently implanted in the right jugular vein. There are a number of typical side-effects but after my first treatment, mine were minimal. For now, my general good health contributes to coping better with the side-effects. The most noticeable was a sensitivity to cold. For example, without thinking I reached into the fridge to grab three eggs for breakfast. My hands went numb instantly. That side-effect passed after a few days but the effects of chemotherapy are cumulative so I can expect side-effects to last with each new treatment.
So now you have most of the story. There are a bunch of fine details but I’ve hit the high points. If effective, the chemotherapy will slow and hopefully prevent the cancer cells from replicating. At my first treatment, the clinic nurse mentioned there are patients on my treatment for years. I asked her to sign me up for that plan. This moment is the sunrise on the next stage of my life and my plan is to live large and cherish every moment.
I haven’t posted for a while. I needed time to reflect and process the fact that officially I’m now a Palliative Care Patient with Stage 4 cancer in my liver. Obviously there is nothing to get excited about in this diagnosis but none of us get to choose the roads we travel. We do get to chose how to be the best version of ourselves while on the ride.
I plan to return to my original goal with this blog. My ramblings will attempt to provide those wearing the same cancer shoes I have now with some comfort and hope. This may prove really beneficial to those fighting this battle without the support pillars I enjoy in my life. I refuse to allow cancer to define how I live my life and my plan to make it a good fight.
I encourage you to share my story with anyone you know who might benefit. I have plenty of room for new friends in my life.
Stay tuned … I have lots to say and plan to post at least once a week going forward.
As always, I thank you for being as my side. It is a source of strength for me. With your support and God holding my hand, I know there are wonderful moments in my future to come.
Vocatus atque non vocatus, Deus aderit by Carl Jung translates to:
Invoked or not invoked, God is present.