Beauty, Love, Cancer and a Van

Biopsies and Beginnings

A new car is exciting. There’s something special about driving away in an immaculately clean car, complete with new-car smell and an unfamiliar dashboard.

A new camper van, however, is bewildering, even for a techie like me. Plumbing, black tank, solar panels, house batteries, propane, water heater, fridge, fans, convection/microwave combo oven, inverter, USB, AC, propane fill, city fill, breaker panels, mains switch, a dozen light switches, an awning...

So it was in this bewildered and excited mood on November 30, 2019, that I drove away our new Winnebago Travato from the dealership. Sara, my daughter, was strapped into the bed in the back with the strangest seatbelts, and Hendrika, my wife of 24 years, followed in the car as I tentatively plied the pavement towards home, worrying about the first challenge ahead, where will we park it?

Fortunately, the van did fit in our driveway, just barely. I was able to pull in frontways and back into the parking space in the front of our house. It took four or five cuts, but it worked. Sometimes things just work out.

And sometimes they don’t.

Just before the Thanksgiving weekend of that year, Hendrika asked me to go for a walk around the neighbourhood in a way that told me something was up. A minute into the walk, a tight hand squeeze led to the news that her breast cancer from four years prior was back and had spread into her abdomen. The basic message from the doctor was “You’re fucked. Things will go fast. Have a nice day.”

This probably should not have been a surprise, but it was. Hendrika had terrible abdominal pain episodes that escalated in frequency and intensity during the previous months. Visits to the ER, CT scans and scopes finally culminated in laparoscopic surgery where the docs had a direct look and took biopsies.

Then, when she got the results from the hospital portal, we all took a collective sigh of relief. The two biopsies were clean!! Whatever was ailing her was not the return of her breast cancer. I didn’t even bother coming to the oncologist appointment she had that Friday.

There was a third biopsy.

Did you know you have an organ named an omentum? I had never heard of it. But that’s where her cancer was found. And Dr. Google said that when they find it there, the average life expectancy is six months. The oncologist Dr. Chu,¹ concurred by quietly filling out social assistance forms stating a life expectancy of 12 months. Chemotherapy pills named Palbociclib were prescribed, and we were advised that it was not a cure, just a slow down. This was the best that could be done.

We talked openly and calmly that evening. But what was there to say? I promised I would be there to the end. Which then and now seems very empty. I don’t want to be anywhere else. Where would I go?

Being of the belief that one is responsible for their own health, I would have predicted that I would be offended by the way the news was relayed by the doctors. Oddly, I didn’t and don’t feel particularly disgruntled or manipulated.

We also carefully gated the news. We let the family Thanksgiving weekend play out as it always does. Walks in the blossoming fall colours. Bike ride for me. Dinner at Gramma Jenny’s.

Back at home, it was time for the family meeting with kids, Ryan, then in his third year at Guelph University, and Sara, starting her first year at Trent University.

“What’s different this time?” Ryan asked.

We expanded the news to immediate family and close friends. Phone call to my sister, Mika. Phone calls to Hendrika’s sisters, Susan and Trudy. Chat with Hiro, my dad. Phone calls and coffees with friends. There’s no good way to say it, so we just said it.

Sharing the news offered a slight sense of relief. Or perhaps it’s just getting the job done.

And people want to help and often do, perhaps without realising it. Tom, my bandmate who lost his wife to cancer, taught me the importance of hope. “Hope is huge,” he had said. This has stayed with me throughout our journey.

Sara taught me acceptance. When you’ve done what you can, you’ve done what you can. There’s nothing more you can do.

But there’s no way to entirely avoid the helplessness or the sense of pending dread of what will come.

And just for extra flavour, our cat, Potatoes, was squished on the road a few weeks later. It was quite a tragic moment; Hendrika futilely calling the cat home in the hopes that the unrecognisable mess I had discovered was not actually Potatoes.

But, life rolled on. Hendrika’s pain and discomfort was a roaring fire in her belly when it flared up. Morphine was pure disappointment. But, Hendrika kept on charging forward with painting, walks, trips to Guelph to see Ryan, hosting visiting friends and group art events. Most days were still good days.

On our way to Trent University with Sara on Thanksgiving Monday, we happened upon the Wutai Shan Buddhist Garden, still very much under construction. Rolling hills and peaking fall colours reverberated around the walkways and statues. It will be spectacular when it’s finished.

I had also tried to quit the rock-and-roll cover band I was in with Tom. You know — “higher priorities right now.” Bye-bye. But we ended up making Hendrika an honorary member, and we worked on some songs together and had a great time playing the likes of “These Boots were Made for Walking,” “I Can’t Get it Out of My Head” and “Mr. Blue Sky.”

I continued to work on my software development projects. I didn’t like commuting and being far away when I went downtown, but I was also able to immerse myself. I was starting to learn that the absorbing and relatively controllable work-world was an emotional life raft for me.

We had been thinking about a van or something for some time. We had even attended an RV show earlier that year and were already primed with the knowledge of some models, had quite a few Youtube videos under our belt and had a number of favourites in our minds. We were weighing the pros and cons of this model versus that, as one does. What became clear later on is that many of these purchasing concerns become completely irrelevant. You really need to just do it and adjust as needed.

And we just did it. It was now or never. With the expectation that we may only get a few months out of it, we cracked open our retirement savings and bought the Winnebago Travato, 50/50, and named her “Winnie.” Your perspective of your retirement savings certainly does change when you think you’re in your final months.

Journey

Hendrika, Music by Ken and Hendrika, 2012

Was it by the water

Or with the wind

That the spirit entered

And I welcomed him in

He said the birds are flocking

By the river bend

Why are you out here walking?

I said “I'm looking for a friend”

I had heard the voice

Of a great company

And I thought I'd see

If they had a place for me

Have you seen them passing

By the water way

Can you help me please

I've been walking all the day

—

Was what it from the woodland

Or autumn breeze

That the spirit entered

And I fell to my knees

I said I want to journey

Won't you guide me please

He said it's years too early

You're not ready for peace

When you can calm the storm inside of you

When you can quell the stinging rein/rain/reign

When the words you speak are all kind and true

I will come to you again

—

Was it in the star light

Or moonlight beam

That the spirit blessed me

And I fell into a dream

I said, I tried to do the things you told me to

But I failed so often and now my time is through

He said “you've passed through dark and shadowed days,

with only memories of the sun

yet your aim stayed true so there's a place for you

now your journey has begun”

Watch

Gummy Bears and Key West

Pelee Island, the most southern part of Canada, had been on Hendrika’s bucket list for a long time, and the last ferry of the season was upon us. So, off we went on our inaugural trip.

We got a quick glimpse at Point Pelee National Park, in its somber colours of early winter, and settled into the Leamington Walmart parking lot to wrestle with the unfamiliar van appliances and our first night in Winnie. In the morning we caught the ferry to Pelee Island.

On the ferry, I had a call to India with a candidate for one of my software development teams. There I was, sitting on a boat in the middle of Lake Erie, getting paid to have a video call with someone on the other side of the planet. This digital nomad lifestyle was showing promise.

We explored the island and parked right by a beach for our first nature boondocking night. The sound of the wind in the trees and the waves on the sand, the propane heater keeping the cabin warm, the beach just outside the door, all lulled us to sleep. This van life is also showing promise.

On our way out, we had to drive around looking for a spot with adequate cell service so I could stop and do a work call. A puzzled and friendly local stopped to give us a hand — with whatever problem would cause these weird van people to pull over in the middle of nowhere, with nothing but browning empty fields around.

Nomad life hack: Sometimes moving a few hundred metres can make a huge difference in your cell reception. Cell towers are surprisingly directional.

Then it was off to The Pinery Provincial Park, where we got to try plugging in the van to a 240 volt hook up. It took a borrowed extension cord, a call to a tech support call centre, a borrowed screwdriver and opening up panels to flip a very well hidden breaker, but we did manage to get the electric heater working.

Whether van camping is a luxury is a question of perspective. Coming at it from the perspective of “real” camping — like tents and a canoe — it’s GLAMPING. Coming at it from the perspective of posh hotels, I suppose it’s roughing it. For us it was glamping. And we loved it.

Our next trip was a few days in Algonquin Park, where we winter camped in earnest. Trails were good for both cross country skiing and fat biking. And they had a skating rink with a warming hut. We stayed toasty warm in freezing cold temperatures.

Ryan joined us which was delightful — sort of. One of our main concerns about the Travato was how to sleep three people. But the sleeping arrangements weren’t the main problem. It’s just too tight a space for three people. I guess I don’t mind improvised sleeping on the floor, but glamping immediately becomes camping with three people in the van.

And Hendrika started feeling better.

We met with the nutritionist at the cancer clinic, who pulled out a diet sheet for people experiencing blockages due to tumours, which essentially advocated low fiber.

When in big trouble, clear liquids. Which happens to include Gummy Bears and hard candies.

When in moderate trouble, opaque liquids can be included. Who would've thought that peanut butter is counted in that category? When things are quiet, never more than 2 grams of fiber. This means being very aware of fruit and vegetable fibre counts.

You could summarize by saying “Don’t you dare eat that broccoli, but gummy bears, sure, go nuts!”

In other words, we were learning how to cope, and knowledge was an important step to wellness. The cancer diagnosis itself was a good thing. At least it clarified why Hendrika had been unable to eat and had lost 20 pounds in half a year. And the ratio of good to bad days got better. The flare ups became fewer and farther between.

We had Christmas at home. The thought that it was likely our last as a family of four; Hendrika’s last was always just beneath the surface. But, I was honing a key coping strategy: Live in the present. And it was a good Christmas.

On Boxing Day we were off on our next adventure. This time we had our sights set on the US South. Sara was with us for the first leg. When we reached Norfolk, Virginia, we drove by the airport and she tucked-and-rolled out of the van to make it home for New Year’s Eve.

Our first stop was a night in Niagara, where we enjoyed fireworks by the falls and another Walmart parking lot. Then we crossed the border to warmer climes. We explored State parks and stayed at Brown’s Orchard and Family Farm, a Harvest Hosts host. Harvest Hosts is a social network with an app that allows businesses to invite RVers to stay in their parking lots and take advantage of their services.

Then it was time for a mini family reunion. Mika was visiting her daughter Risa, who was a student in Baltimore, so we visited the aquarium and explored some neighbourhoods and coffee shops and arranged to meet the next day at the Mall in Washington for some more museuming.

That night we stayed in a driveway in Arlington, a Washington suburb, arranged by another social networking app named Boondockers Welcome, which allows homeowners to invite RVers into their driveways. (In 2021, Harvest Hosts and Boondockers Welcome became integrated and owned by the same company.)

Next was a chilly but spectacular visit to Assateague State Park, where we camped a couple of nights right on the beach and enjoyed viewing the wild ponies. I somehow coaxed the cell service to hold up for a few business calls.

Nomad life hack: Put the cellphone with the hotspot in a window where you think the cell service is coming from, and the Open Signal app will point you to the tower you’re using.

Then further south, Holden Beach in North Carolina, Huntington Beach State Park, Charleston, more Boondockers Welcome and Harvest Hosts and genuine warm weather.

Soon it was time for a difficult right of passage and hazing ritual that all RVers must confront. The first visit to a dump station.

Here are the basics: Most RVs have two wastewater storage tanks. The black tank and the grey tank. The toilet goes into the black tank, and everything else goes into the grey. There’s a receptacle on the rear (literally) of the van used to empty the tanks. You attach a “stinky slinky” (stored in an outside compartment) by removing an outside cap and twisting on one end and putting the other end into a hole in the ground. And then you pull a valve, and the black tank violently gushes into the septic system, offering a stored up stench for all to enjoy. You then close the black tank valve and open the grey tank valve to empty it and perhaps wash the stinky slinky somewhat. Then, if you’re lucky enough to be at a dump station with a hose with a proper connector (the normal garden hose type), you open the black tank valve again, rinse your black tank with a special sprinkler activated by attaching the hose and let the water run for a few minutes.

And that’s exactly how it went on our first dump experience. We were slow and careful, but we passed the are-you-smart-enough-to-be-an-RVer test with flying colours. We were buoyed with confidence. We were competent pros.

My fatal newbie errors didn’t show up until our next visit to the dump station…

Error #1: Not closing the black tank release valve after the final rinse. This causes the black tank contents to fill up the pipe leading to the outer cap.

Error #2: Not checking the position of the black tank valve in case the idiot who emptied the tank the last time forgot to close the black tank valve after the final rinse.

It was towards the end of our trip and we needed to empty the tanks before heading back into the freezing temperatures of Toronto. We discovered that a store named Camping World offered member customers free use of their dump station. The timing was perfect, we’d be there 15 minutes before they closed.

We confidently drove up to the station. After all, we were good at this now.

We cheerfully waved to the man in the truck who was waiting for us to close the gate (I guess we missed our 15 minutes-before-closing-target by a few minutes.) Meh — this won’t take long…

I grabbed the stinky slinky from the storage and got ready to attach it.

I knelt down to position myself to twist off the outer cap. It is low and requires a firm hand to twist off.

I reached for the outer cap and gave it a good twist and popped it off.

Immediately, days worth of poop and pee started pouring onto my hands and the ground around me. Solid turds started rolling away like rats fleeing from a doomed ship. I remembered then that the nurse had said that Hendrika’s oral chemotherapy was toxic and to take “extra care” in the bathroom to avoid harmful contamination.

I scrambled to twist the stinky slinky in place and ensure the exit end of the slinky was correctly in the ground hole. Due to my skillful recovery, I think most of the black tank contents did end up taking their intended route. Measuring by volume, it was probably 75% successful. (The black tank is 13 gallons.)

As a seasoned software engineer, I’m very accepting of less than perfect early releases. We’ll fix the problems in the next release.

Needing to be back in Toronto every four weeks for a meeting with the oncologist, CT scans and picking up the next round of meds, we blocked out our calendars and planned away-windows for our next trips. Liking our home time as well, we started a pattern of two or three weeks away followed by five or six weeks at home.

With an audio book rolling, we’d start heading south in the freezing cold and gleefully call out the temperature when the van’s dashboard reported a new high. Minus 2 Celsius. 5 degrees! 12 degrees!!! 28 degrees!!!!

Spending time getting to the warmer climates let us really enjoy the off-season emptiness of great spots along the way. Wintery locales in West Virginia or Pennsylvania were enjoyable stopovers. Blackwater Falls State Park in West Virginia offered great views of the falls, lots of mountain roads and paths to explore on my fat bile. Another favourite was Camp Creek in West Virginia, which has great hiking and biking trails as well as good (hilly!) quiet roads for road biking.

And 10 degrees Celsius at a beautiful beach was still really enjoyable. Even cold, windy and cloudy days offer up an austere spectacularness. Holden Beach, Folly Beach and Myrtle Beach in the Carolinas and Santa Rosa Island in the Florida Pan Handle all feel low pressure and peaceful in the winter months.

Savannah became a favourite that we would visit repeatedly. Such a great city to explore. I’d go for a run and then work in the van parked by one of their famous squares, as Hendrika toured historical houses. We’d often choose audio books related to our travels, and “Midnight in the Garden Good and Evil” made our visits to Savannah even more enjoyable and helped the miles drift by effortlessly.

I was surprised how much we liked Florida. I didn’t expect more than highways, minigolf and beach hotels.

The inland springs were an unexpected discovery. You can swim in some of them. The water temperature is typically around 75 degrees year round. In Wakulla Springs, when I was going for a dip after my daily bike ride, there were Manatees in the designated swimming area. I kept my distance of course to give them some peace, but still, SWIMMING WITH MANATEES!!! How cool is that?

Blue Spring State Park is another marvel. Kayaks are available to explore the river, and there’s a great paved bike path through the park and nearby neighbourhoods. Silver Springs State Park and Rainbow Springs State Park are other great areas to visit.

And of course there’s the Everglades. Sprawling savannahs in the dry season separate lower lying pools (lower by a few inches) where wildlife collects. There are ample forests and waterways to explore. The bugs are supposedly relentless in the wet season (summer), but they were not a problem when we were there in January and March.

No gush about Florida would be complete without raving about the beaches. The variations in the sand quality are remarkable. The talcum powder-like sands near Pensacola are quartz crystals that have outlasted other minerals over the millenia. A lack of “new” sand deposits allows it to keep its purity. The endless beaches are often on long barrier islands and bordered by vast inland marshes teaming with life. On the east coast, Daytona and a gas guzzling car culture allow people to take their cars directly on the beach sand. Hendrika’s caution and visions getting Winnie stuck as the tide came in prevented us from trying it.

Cities like St. Augustine on the east coast or St. Petersburg on the west coast are also great beach experiences. In contrast to the wild beauty of the isolated national seashores, we explored ice cream shops and restaurants, met up with friends, took boat tours and enjoyed an urban touristy experience. Parking rules are sometimes lenient enough to allow you to boondock overnight on streets — sometimes with a beach view.

I started using my fat bike to explore endless stretches of beach — ideally in preserved national seashores, but biking where there were lots of hotels and houses was fun, too. Folly Beach (South Carolina) has oak-shaded streets reminiscent of old “low country cities” right beside the beach so you can mix things up between city streets and beachfront. The wet sand near the water is usually hard packed and makes for a faster ride; I could pace myself with pelicans, as sandpipers and gulls scurried out of my way. A strong wind could make the average speed 10 km/hour going into it, and 25-30/kph going with it.

Ample bike riding choices avail themselves in inland Florida, unlike the Carolinas’ low country, where paved shoulders seem non-existent. Ocala National Forest and Santos Trails are some of the places we enjoyed off-road biking, and a very long paved bike trail is handy. Lots of paved bike trails offer the safety and peacefulness of zero traffic. A bike trail (lots of it paved) circumnavigates Lake Okeechobee.

We also connected with friends Adrian and Alina from our Toronto cycling club who moved to Winter Park, near Orlando. I was able to join them on club rides where we’d snake our way through an endless suburban maze and occasional stretches of countryside. The talk of the biking-town was of a cyclist who ended up spending a night in jail after being arrested by a hyper-vigilant policeman for not coming to a full stop at a stop sign. Gotta love the Land of the Free.

Another “Land of the Free” moment happened at night when we pulled off the interstate for gas. We saw police lights near our intended gas station. I figured it was just a traffic violation stop. When we pulled into the gas station three or four police all had their guns out pointing at a large man standing in the doorway of a neighbouring building. One of them was using one hand to aim his gun and the other directing us to get the fuck out of there. Being Canadian, we promptly complied, and filled up at the next exit.

I’m a freelance consultant and have no health insurance. I can buy a travel insurance policy for myself, but Hendrika was completely uninsurable. Fears of a sudden infection or some ugly new curveball that the cancer would throw at us made us want to stay close to the Canadian border. We told ourselves if something happened we might be able to white-knuckle it back to the civilization of Canadian socialised medicine. Or we’d self-insure and simply eat the costs if it came to that. And there are online doctors you can talk to for a price.²

With health concerns in the back of our minds, we were reluctant to go too far from the Canadian border. But as we got more and more comfortable with travelling in the US and as Hendrika continued to be stable, we became more and more adventurous.

Accordingly to Google, Key West is 26 hours of drive time from our home north of Toronto. As always in a camper van, the journey is the destination.

On a Thursday night in late February 2020, after wrapping up some medical stuff at home, we set off. A late-ish crossing of the border meant a quick wait. Our first night was at a rest stop on the New York interstate in Angola. The freezing wind was so strong that empty trucks were not allowed on the road and we were rocking and rolling in the exposed parking lot as we grabbed a bit of sleep. Day two was a bit of a driving marathon, booking about 1,300 kilometres, but we took restorative stops in Camp Creek in West Virginia and Lake Norman State Park in North Carolina. We stayed the night in another rest stop near Savannah.

By Saturday morning we were in Florida! We still pushed hard on mileage (700 km), but had a great walk and swim at Rainbow Springs State Park and made it to St. Petes to meet with friends for a boat tour and dinner.

Then it was moochdocking with our dear friends Paul and Jane at their condo in Longboat Key. We were treated to a ride in their boat, a fun Mexican meal and an awesome sunset.

One more 500 km push, which included a quick business meeting in Miami, and we were in Key Largo, the first of the Florida Keys. We made it.

Well, it’s still another 100 miles of keyes and bridges to Key West itself, but the drive is so entertaining, it doesn’t count. We spent about four days on Keys. Hendrika enjoyed a boat tour and snorkelling and toured Hemmingway’s house, while I did some work. I found some non-suicidal bike rides every day to feed the addiction, and we met alligators and miniature deer before it was time to start picking our way north.

It was around this time the new COVID-19 virus was ramping its initial deadly foray into the US. We started to be careful — but not quite careful enough.

Hendrika made a delightful pancake breakfast when we were at New Smyrna Beach attempting to satisfy a pent-up desire to succumb to the endless pancake houses we seemed to be passing. It was a great breakfast, but I was beginning to optimize food choices based on the mess they made. Like, oatmeal is fine for at home, but on the road granola is a much better choice. Pancake-battered pots were a definite deterrent to making them.

So, when we were in Daytona Beach, we decided to pull into an iHop and fulfill our pancake house fantasies. It was bike week, and the place was packed. Our desires were fulfilled, but we both got the snuffles and aches, which in different times would be entirely unremarkable. But, with the pandemic news sounding WAY WORSE, we picked up the pace and headed home. Our plans for New Orleans in April, Cape Cod in May would have to wait. In the meantime, we were happy to get across the border and start our mandatory isolation period.

Down by The Sea

Lyrics by Hendrika, Music by Ken and Hendrika, 2020

Come away from the city through valleys and rivers

Rest by the sea

You will find there a cabin of driftwood and sea shells

Wait there for me

Through towers on concrete and rivers of asphalt

Is someone calling me

All memories are soaken with wine and salt water

Look to the sea

As I reach the doorway the dogs will come running

Wild with glee

Through the wide open windows the ocean waves welcome

There I will be

And I dream of the ocean, the wind and the water

The spirit of the sea

As I walk by the seashore the gulls cry for gladness

Here we are free

And the evening will find us by moonlight and laughter

Stay here with me

We walk by the water so glad ever after

Down by the sea.

Watch

Ibrance

I-what?

If you haven’t heard of Ibrance (a.k.a. Palbociclib), that’s a good thing. It is used to treat metastatic breast cancer. Specifically, it targets HR-positive, HER2-negative breast cancer, which is what Hendrika’s biopsy revealed in 2015 when we first discovered the cancer.

After learning the cancer had spread to her abdomen in 2019, Hendrika started taking Ibrance as soon as it could be arranged. It is given on a three-weeks-on and one-week-off basis to allow time for the patient’s immune system to recover. A few days after the last dose, blood tests are done and if all is OK, the next cycle starts.

And it worked!

Gradually her tummy troubles improved. Not cured, but definitely improved.

We went for long stretches where we could almost forget about the cancer and just enjoy a busy and active life. It would not occur to you that Hendrika had health issues if you were to meet her during that time.

Priceless.

And that’s pretty much how Pfizer, the developer of Ibrance, thought about it, too.

According to a Wall Street Journal article in 2015, after a process of figuring out what the market would bear and knowing that the drug was literally a life saver, they initially released it in the US market at $9,850 per month, and it started flying off the shelves. Since then the price has been pushed up. At time of this writing, drugs.com says it is $13,500 USD for 21 pills. That’s $642.86 USD or $877.38 CAD per pill.

But we live in Canada, with our great single-tier socialized healthcare, so that doesn’t apply here, right?

A piece to the Canadian puzzle is at the federal level. The Patented Medicine Prices Review Board “protects and informs Canadian consumers by regulating the prices of patented medicines sold in Canada, and by reporting on pharmaceutical trends.” This process added about a year and a half delay after it was approved in the US before it was approved in Canada. I wonder how many Canadians died earlier than they could have due to this delay.

Finding Canadian prices online is murky, but in our situation, we were told that Ibrance would cost us about $6,000 CAD per month. This is about $275 CAD per pill. It was quite a shock when we learned that treatment was so expensive.

Unlike chemo that is delivered intravenously at a hospital, take-home cancer medication is not covered by Ontario’s public health insurance, OHIP. Being a freelance contractor myself, and Hendrika being retired, we had no private healthcare insurance.

The Ontario Ministry of Health established a “compassionate review board” where you can plead your case through a bureaucratic application process to get partial relief. Apparently, they’d rather spend the money on these processes to second-guess the front-line doctors than covering it. Anecdotally, I have heard of them turning down funding for advanced targeted cancer treatments because a patient had already received general chemo. I guess they have to protect the provincial coffers from those incompetent front-line workers.

According to the Canadian Cancer Society:

“Coverage eligibility for THCD [Take Home Cancer Drugs] varies significantly across Canadian provinces, creating interprovincial differences. In Ontario, Quebec, and the Atlantic provinces, THCDs do not fall under the jurisdiction of the public cancer agency budget; patients have no choice but to rely on private plans, out-of-pocket cash payments, provincial drug programs (if eligible), or compassionate programs provided by pharmaceutical manufacturers when a drug is not covered by programs available to the patient. In contrast, Canadians living in the western provinces have their cancer drugs paid for by the provincial government regardless of their age, socioeconomic status, and the drug’s route of administration.”

We were assigned a social worker (incurring more system costs, no doubt) to help us through the application process and eventually did receive about 60% coverage. Low-income individuals would have received more help.

Part way through the treatments, one of my clients put me on the firm’s health plan. Initially, the plan covered 100% of the drug costs. However, a few months later, due to huge claims, the insurance company gave my client a choice of a hefty premium increase (the firm was a small business) or instituting a cap. Reasonably, the firm elected a $8,000 per year cap. This covered the drug for about 1.25 months.

Later on in the process, we were also able to apply directly to Pfizer for compassionate relief. I guess it’s some sort of frequent-flier program. This was aided by a patient navigator funded by the province. We’re grateful for the help, of course, but you wonder how this system complexity contributes to the cost of care compared to just covering the damn drugs.

At the end of our tenure on Ibrance, we were out of pocket about $1,000 per month and happy that my successful consulting practice allowed us to take this in stride.

Handling this precious life-saving gold took some practice and required establishing best practices, especially on the road.

On our first US trip, Hendrika had carefully packed the Ibrance into daily pill boxes and stored it in the van’s bathroom cupboard above the toilet.

Caution: Items may shift during transport.

I opened the cupboard looking for something else only to have the plastic pill box fall into the toilet, break open and dump a few pills into the “water”. (It wasn’t just water.) We fished out the pills and had an awkward phone call with the pharmacist where we concluded they could still be consumed. Yum! Choke that one back, Hendrika!

And then there was the time that “week one” was carefully packed into the daily pill boxes and “week two and three” somehow made into the recycling. This was discovered the day after garbage day. After a panicked call to the clinic and then Pfizer, they graciously resupplied us for free.

The timeline for when Ibrance comes off patent is murky because of extension processes and multiple patents. Once it is off patent, we can expect the prices to come down due to the ability to manufacture generic versions of it.

2034 is the latest expiry of the newest patent — 12 years from this writing.

According to The Pharma Letter:

The US Patent and Trademark Office issued a US Patent Term Extension certificate for Ibrance in Oct. 2021. The certificate extends the term of US Patent No RE47,739 (‘739) by more than four years until March 5, 2027.
Breast cancer treatment Ibrance is currently approved in more than 100 countries and has been prescribed to more than 350,000 patients globally. The drug generated full-year 2020 sales of $5.39 billion, up 9% year-on-year.
In March 2019, several generic companies notified Pfizer that they had filed abbreviated new drug applications (ANDAs) with the US Food and Drug Administration seeking approval to market generic versions of Ibrance.
In November 2020, Pfizer has filed a patent infringement petition against Aurobindo (BSE: 524804) and Dr. Reddy's (BSE: 500124) in the US District Court for the District of Delaware, alleging that the Indian drugmakers were planning separately to come out with generic versions of Ibrance before expiration of its patent.

Similar drugs, priced in a similar way, are coming to market. For example, Abemaciclib, a.k.a VERZENIO, from Lilly, is one of the follow ups we investigated for Ibrance.

Cancer being what it is, Ibrance only delays the inevitable.

Hendrika’s reprieve was due to the drug attacking specific cellular attributes of the tumours. However, not all cancer cells are susceptible due to genetic variations. These survivors happily set up shop in the environment that their siblings could not tolerate and go back to the business of growing and reproducing. This process is known as microevolution.

Two and a half years into the Ibrance treatment, Hendrika noticed an uptick in tummy problems. It was unclear what was happening, and we continued to juggle our management techniques. Over the coming months, things deteriorated quickly. By the time we got to looking for Ibrance alternatives, symptoms had gotten so bad that we felt there was little choice except to go back on palliative IV chemo, a last resort with harsh side effects.

If you are on Ibrance, my advice is to plan on its inevitable weakening by exploring other targeted treatments that may take some time to identify and try.

I wish we had done that.

A Great Pandemic

After returning from Key West, we stayed home for a couple of months, like everyone else on the planet. As the weather warmed up, the road began calling, and Winnie was ideal for traveling and staying isolated — lock down or no lock down. We figured our only exposure came from filling up the gas tank and dumping the waste tanks — an acceptable risk. We loaded the van with groceries, and tried to minimize any shopping on the road. What could be a better way to self-isolate and enjoy the outdoors than in a camper van?

We explored our own beautiful backyard in Ontario. We enjoyed immaculate fresh-water beaches, like Wasaga, Wahnekewening Beach and Balm Beach on Georgian Bay; Grand Bend, Ipperwash, The Pinery, Inverhuron, Bruce Beach and Sauble Beach on Lake Huron (Ontario’s West Coast, as they say); Sandbanks and Presqu'ile on Lake Ontario; and Long Point, Turkey Point and Rondeau on Lake Erie North Shore.

Later in the summer season, when the mosquitos and black flies had subsided, we toured, hiked, biked and paddled the rugged Ontario northlands. Killarney Provincial Park (a favourite), Algonquin, Grundy, Lion’s Head Provincial Park, Bruce Peninsula National Park, Arrowhead, Bon Echo, Kap-Kig-Iwan Provincial Park, Temagami and Marten River Provincial Park were all enjoyed.

During the lockdowns, parks and campsites were often closed. We got used to “boondocking,” parking overnight in some place unofficially. Well OK, so there’s a sign that says “No Camping,” but they must mean setting up tents and well, camping. We’re just “parking.” If you arrive late and are quiet and tidy, there are rarely any problems. Generally, enforcement is complaint-driven, and if it’s a remote or rural area, no one will see you and no one is on shift to do enforcement anyway. The pandemic really upped our game “winging it” for places to sleep.

In the winter, our focus shifted to cross-country skiing. Wasaga and Arrowhead provincial parks have Nordic ski centres. And there are great ski and fat bike trails at Horseshoe Valley. We’d “moochdock” at friends’ places and integrate some outdoor social time with friends.

I was able to score a pair of “skate skis” — quite a feat during the pandemic. Skate skis have no “tread” on the bottom, so you use your legs to propel yourself with a skating motion. Groomed ski trails often have two tracks, one with grooves for “classic” (skis with threads) and another for skate skis that are wide and smooth. At the beginning of the ski season, I was constantly being passed by skate skiers (often the young female kind), as I trudged away in the classic ski grooves.

I figured skate skis versus classic skis were like a road bike versus a mountain bike; of course, you would go faster with faster skis, so I tracked down and bought a pair of skate skis. They were a lot of fun. And a lot more hard work than I had imagined. And I was constantly passed by skate skiers (often the young female kind), but it was even worse because I’d have to make room for them to go by.

In March, as winter’s grip began to ease, we went back to Point Pelee — the furthest south the pandemic would allow.

Killarney

Poem by Hendrika Ono 200?

Out, where,

the evening is deceiving

And where,

the night brings true repose,

out where ,

cricket song is sketching

Out the,

tempo of the soul

Out, there,

shooting stars are streaming

Over,

hills of flesh tone stone

Out there,

sleepy waves are gleaming

Here we,

once had made a home

Deep lakes,

silently reflecting

Where God,

quarried heaven from

Here I,

know of joyful blessing

Here I

Know where we be long.

And I Listen to The River

Poem by Hendrika Ono, 200?

Here I listen to the river

Harmonizing with the trees

Here where native spirits gather

Drawn by ancient melodies

And I listen to their stories

Tales of love ; some to despise

Here I spend my days exploring

Lore and wisdom, lure of lies

If I spend enough time sifting

Through the twisted tangled ties

Will I see of wisdom, clearly

Will I then be surely wise?

Receiving healthcare services during the pandemic was a mixed bag of wins and losses.

The wins were the sudden and miraculous ability to communicate with doctors as if it was 1998. Wow! Use email to send photos and have phone calls! What a concept! And schedules that were roughly adhered to when an in-person visit was required. Previously, every doctor’s office seemed stuck in the 1970s, forcing patients to cram into waiting rooms and wait, sometimes for hours past their appointment time.

A big downside for us was that I was no longer able to attend doctor appointments with Hendrika. During the occasional in-person visit, Hendrika would dial me in, so I could cram my phone against my ear, close my eyes and catch about two out of three words. It worked well enough, I suppose.

Luckily, Hendrika was riding the Ibrance wave through the worst of the pandemic, most visits were routine. I’m glad we never had to spend much time in the hospitals when the pandemic was raging.

During the pandemic, my consulting practice flourished. One of my clients shut down due to Covid, but another in the healthcare space received some Covid funding, and I got busier than ever with that work and my other clients.

And every team I was involved with instantly went 100% remote. The software industry was well prepared to be fully remote. I cannot think of a single new tool that was used. The existing mechanisms and processes easily allowed for an overnight and seamless transition to fully remote teams.

For someone embarking on a digital nomad lifestyle, this was a big win. Previously, I could get away with remote work, but it was a bit of a compromise. If you’re in a meeting with seven people, and you’re the only one dialing in, it’s like you’re not making an effort. Then, during (and, so far, after) the height of the pandemic, it was expected and normal to be remote.

People I met with would see I was in a vehicle and would give them a tour of the van and surroundings by turning my laptop around. As one colleague put it, “Your work days are like everyone else’s vacations.” Yup, pretty much…

My dad, my mom and my mom’s husband, all mid-80s plus, made it through unscathed.

I was very fortunate. There were so many people that were impacted terribly by the pandemic. By dumb luck, a number of things went in our favour and, with no small amount of guilt, we had a great pandemic.

Life on the Road

Van life skills are like most other skills in that it takes practice. There are also many diverse dimensions: learning how to drive on windy days, figuring out how to stay connected, picking out a good spot to tuck the van in for the night, just for starters.

Staying Connected

I was working remotely throughout our adventures, so staying connected was paramount during weekdays. An entire book could be dedicated to all the options and ins and outs — and it would need constant updating, which is pretty much what the Mobile Internet Resource Center does.

There’s no single product that is the best for all cases, and I developed an arsenal of tools.

The big game changer came in spring 2022, when Starlink for RVs arrived. Starlink is an internet system where you aim a dish at the sky and communicate with low Earth orbit satellites that are constantly moving relative to the Earth’s surface. Its big impact to us was the ability to get snappy internet anywhere. When we circumnavigated Lake Superior, we’d arrive at a spectacular and isolated beach with barely a whiff of cellular service, I’d pop up Startlink and — tadah! — fast responsive internet for Zoom meetings and movies.

Starlink’s nemesis is trees. Even in a largish parking lot hemmed by trees, Starlink would suffer minute-long outages. This further deterred us from staying in provincial and state parks, where treed sites are the norm in the East.

To compensate, I installed a 25-foot telescoping mast that allows the dish to be proudly erected by grasping it and pulling and twisting. In some situations, this can improve your chances and get around bushes that are in the way.

Our version of Starlink hardware does not support in-motion use. Starlink introduced a larger dish that does support in-motion use in October 2022, but, as of this writing, you’d have to get another subscription (making it expensive to use both dishes) and it was not yet available in Canada. It consumes power at double the rate (a problem when camping without power or driving much) and stays on your vehicle, so cannot be hoisted or set up away from the vehicle to clear trees.

Starlink is great, but not sufficient for all connectivity. Cellular is still an essential part of staying connected. It performs better in densely populated areas, does not require setting up and works in transit. A cellular booster can really help in dicey areas.

Nursing flakey cellular service is a bit of an art form. Knowing where the cellular towers are helps because you can position your hotspot accordingly. Moving around, even just a few hundred meters, can be a big boost.

Nomad life hack: For conference calls, audio is almost always much more stable than using the internet. Most conferencing tools allow you to use a voice line for audio. So you can stay in sync with the voice conversation and the video can flake out and catch up at will, but your conversation can still be pretty good.

Often, when you are using your phone for a call, the hotspot suffers. This is where a second line, in a cellular modem or another phone, can be a big help.

Switching networks — 3G, LTE or 5G — can also help.

I also purchased a wide-area network (WAN) product from WiFiRanger whose Wi-Fi range is further than a phone or laptop. However, it’s finicky and challenging to set up, and the number of times I needed it was low. The WiFiRanger product also had a cellular modem, which was sometimes very helpful, but WiFiRanger’s implementation was unreliable and slow and switching SIM cards was a major headache, so I only used it in Canada. I’ll probably upgrade to a better cellular solution.

Boondocking

When sharing my adventures with a friend in my bike club (as we were zipping along the road in the back of the pack), he asked “But where do you park it at night?”

To which I replied “Wherever the fuck I want.”

Well that’s not true, but after the pandemic honed our boondocking instincts, that became more true. During our trip around Lake Superior we moochdocked three nights (staying a friend’s driveway), used Boondockers Welcome three nights, stayed at a provincial park three nights (because we had an awesome beach sight that was Starlink compatible) and boondocked 17 nights.

It certainly cuts down on expenses when you only pay for three out of 26 nights. Free is nice, but the attraction was more about isolation and freedom. Or maybe it was just skipping the hassle of booking a site and needing to be at a specific location at a specific time. There are many nice campgrounds, but there’s something special about being parked a few feet from a beach with absolutely nobody around.

For boondocking spot selection, generally, what works and what doesn’t:

Boat ramps are often very scenic with permitted overnight parking in large lots
Municipal conservation areas are often gems — but they can be more closely monitored. If it’s too popular or official, it is dicey.
Rest stops — usually too noisy and not scenic, but there are some really nice ones
Street parking or community centres in small towns — often perfectly legal and safe
Casinos, Walmarts, shopping malls, Cracker Barrels are usually good and welcomed
Anywhere inside a provincial or state park, unless you’re actually camping there, is generally a bad idea. Some people who work there have “enforcement” in their job titles and, in Ontario at least, they publish a list of offences and the related fines
Parks and conservation areas in or near urban areas are too high profile or dangerous

Another golden rule is to only stay one night. Be quiet and respectful, and then disappear like the morning mist.

We’ve had three “night knocks” so far. Two violated the “near urban areas” rule, and the other violated the “not in a park” rule. We always had a backup in mind, but rarely needed it.

Trip Planning

We’d typically have a general route planned and have specific night stops pinned down a few days ahead of time.

We’d anchor on specific targets like meeting friends, campground reservations, business meetings, touristy activities like horseback riding, kayaking and tours and then fill in the gaps with whatever looked interesting along the way.

Helpful tools:

Google Maps. As well as basic route planning, Google Maps is a great tool for discovering boondocking spots and activities, for example, by searching for “boat ramp” and using the satellite view to look at the space. Since Starlink needs so much clear sky, open areas can be found with the satellite view as well. Streetview is patchy but often useful.

Google Maps’ “Saved places.” This feature is a handy way to keep track of your boondocking ideas so you can save all your digital scouting work. These locations appear on the map, you can add comments (like when you’ve stayed there) and can be privately shared.

iOverlander. An app where people share their spots and experiences, iOverlander has a wide range of user types, so many spots are geared towards 4 x 4s and completely out of the question for Winnie. It is good for indicating what to avoid. User comments about bad experiences or enforcement are helpful. I occasionally contribute, but, probably like a lot of other van lifers, don’t like to post my boondocking secrets out of fear that too many people, or worse disrespectful people, will wreck a spot by causing signs, bylaws or enforcement to go up.

Boondockers Welcome and Harvest Hosts, RV Parky, Overnight Parking, Campendium, Sekr and Allstays are other apps I have used.

Winter Trips

We winter-camped in the van quite a few times, depending what you consider winter. In February 2022, we camped at Arrowhead Provincial Park. It. Was. Cold. Evening lows of -31C. We had electricity, which made a big difference. Some learnings about living in the van when it’s that cold:

The Truma heater on electricity kept the cabin mostly above freezing (OK for night — still a bit of ice on cups near the window)
The Truma heater on propane is needed to get it cozy (sort of)
Let the sun in if it's sunny by opening window blinds
Set the convection oven for 99 minutes on 425 degrees for an extra boost
Oddly the fridge and freezer didn’t work well
Blankets on back door makes a big difference
The floor by the sliding door was always really cold, but a blanket over it with towels/laundry along the bottom helped
Electric blankets are good
Put the window shades with reflective side in
Zip two identical sleeping bags together to make a big sleeping bag
An extra blanket against the bed wall helps
Hats are cozy for sleeping in
Putting ice skates on when it's -20C is miserable

Our neighbours' equipment was a car and a tent. From the comfort of Winnie, we wondered how they made out.

The wisdom of the Trees

Poem by Hendrika Ono

The winter wind has stripped away

The wild fall excess

Revealing limbs of beauty under

autumn’s wanton dress

This world of whitened visions

And a pearl grey sky

A land without horizons

Where ancient memories lie

We drift in dreamy silence with the

Softly falling snow

And follow faint footsteps

Where the deer and rabbit go

And deep within the forest

Where the hours have no meaning

Your heart can hear the rhythm

Your soul can hear the singing

If you stop to listen

You will hear the forest pray

For redemption of her children

Who have lost the sacred way

Who eradicate forest

Who cannot hear the pleas

Who turn their back

To the wisdom of the trees

A Thousand Times and More

Poem by Hendrika Ono

I’ve walked this way

A thousand times

A thousand times and more

And yet each day

I see something

Something unseen before

I’ve walked in hand

With winter winds

With winter in my heart

And still the land

Will hold my hand,

A share a place a part

Summer fun

Is so soon done

But the best of all

Are golden days

Of goldenrod and aster

But now the leaves are

Turning fast

And days are falling faster

There comes the time

I wave my hand

And walk this way no more

Exercising on the Road

For me, exercise became an addiction more than anything else. So, putting aside an hour or two each day was mandatory.

The great thing about exercising on the road is that it is a terrific way to explore and enjoy your location. Cycling requires a bit more planning than running. Strava, a social cycling app, has a premium feature where you can see heat maps that show the most popular routes. It also attempts, and largely succeeds, in showing the road surface types (gravel vs. paved).

The downsides of exercising on the road are limited space and limited laundry. As I am primarily a cyclist, the bikes were necessary cargo. I settled on bringing two bikes: my road bike, which is only good on pavement, and my fat bike, which has five-inch tires inflated to about 5 psi and can go over a wide variety of terrain.

Securing the bikes is somewhat problematic. I’ve never had a theft while on the road, but keeping the bikes on the back of the van is not ideal. I typically have the bikes covered, which in itself is somewhat of a deterrent. I also purchased a long tow chain from Home Depot, which I thread through the bikes and lock with a padlock.

Working on the Road

It was easy to keep a full-time workload while travelling. If you budget two hours for exercise, two hours for driving, two hours meal prep, etc., that leaves plenty of time for a full work day. Longer drives can be left for weekends or exercise rest days. Being a freelancer, I can work less to fit in touristy activities or long driving segments.

On travel days, a useful pattern is to sleep “wherever,” like a rest stop, Cracker Barrel or Walmart that is nearby to an awesome place to be the following day. Arrive early at the day spot for optimal parking, spend the day and move on to the next spot in the evening. This strategy is also quite economical because day passes at parks are typically pretty cheap or free, and you’re not paying for the overnight spot.

The criteria I used for finding a good work spot:

Scenic view (e.g., see the water from my workstation)
Quiet (e.g., not beside a busy road)
Internet (decent cell service or open sky for Starlink)
Access to fun activities (hiking, biking, running, swimming, museums, historical houses)

A typical work day schedule:

Wake up and make tea, leg stretch if we’re at a beach or park or have to walk the dog
Put in a couple of hours of work while Hendrika is sleeping
Have breakfast
Hop on the various scheduled calls and work until 11ish
Break up the day with an exercise activity
Clean up by jumping in a lake and work the until supper time
Driving might be inserted in the morning or evening if it’s a move day

What’s Not to Like?

Around the time of this writing there was a bit of a backlash against van lifer social media influencers who only paint the bright side. Van life, part- or full-time, is not for everyone.

Our perspective is tempered by having financial resources and being able to generate almost the same income while traveling compared to being at home.

Issue	Problem	Mitigations
Decision Fatigue	Getting tired of deciding where to sleep, where to shower, pouring over maps, making plans and contingencies, booking nights, route planning, exercise planning, and on and on	Stay at places you like longer. Return to places you like.
Staying Connected	Dealing with flakey or non-existent cellular service.	Develop an arsenal of tools (cellular booster, Starlink, hot spots, modes, Wi-Fi as WAN) and the know-how to use them.
Dishes	Rationing water and fuel makes meal cleanup troublesome.	Buy foods that don’t make a mess. Use compostable plates, cups, cutlery (although, the cutlery failed for me, because I always ended up washing it anyway). Use the dishwasher when you get home.
Limited Battery Power	Need to keep the fridge turned down — so no freezer. Running out of power for the laptop and Starink. Solar stretches the batteries, but is limited by weather.	Go out for ice cream. Get a portable lithium battery. Drive at least an hour a day. The next van will have lithium batteries and perhaps a better design
Hard to separate conversations	Two people having simultaneous conversations with others is difficult.	One person goes outside (weather may not cooperate). Use headphones/earbuds, talk softly, mute yourself.
No hot tub	Hendrika loved baths, and they often helped through rough patches.	Spend a night at a fancy hotel. (Didn’t actually do this yet.)
Laundry	Daily exercise generates copious amounts of laundry, especially in the cold. Many parks don’t have laundry facilities.	Make short trips, do laundry at home. Hunt down laundromats. Fantasize about a tiny washing machine that fits in the RV and a way to use the heater to turn the bathroom into a hanging clothes dryer.
Winterizing	A 90-minute tedious procedure of blowing out water lines and filling them with antifreeze is required when the seasons change or when returning to the cold from the south.	Wish for a better designed RV.
Vehicle Troubles		Burn cash

Life Figured Out

One morning, I believe it was at the John Pennekamp Coral Reef State Park in the Florida Keys, we were parked at the beach while I was having my daily team meeting. The sliding door was open and my view was of the spectrum of Caribbean blues in the sea, lush greens of palms and mangroves, dazzling sunshine and an idyllic beach. During a pause in the meeting, a passer by, in an elegant southern drawl, says loudly enough so all my colleagues could hear:

“That guy has life figured out.”

The whole team broke out in laughter. Well, not the whole team. Most of them had received about 18 inches of snow the previous day.

The Nomads

As we settled into our nomadic lifestyle, tripping and being home psychologically merged. It was very common that we would only be home a day or two before leaving for our next “trip.”

The van carried all of our essentials, and we were quite comfortable in it. In July 2022, Hendrika rented a cottage near Georgian Bay and invited family and friends. We ended up sleeping in the van parked in the driveway every night, even when there was ample room in the cottage. It was more convenient, and there’s something more comfortable about sleeping in your own bed.

We also observed that we spent more time at Wasaga Beach than our friends who lived in the town of Wasaga Beach. I think this is because, when you’re in a van, you take your whole house to the beach. Everything you need is right there. Food, stove, laptop, swim stuff, change of clothes. So it’s more practical to spend more time at the beach. And when it’s nap time, you have a proper bed. No messing about trying to get comfy on a towel in the sand.

As we entered our third year of having Winnie, the US borders finally opened, and we leveraged our nomadic skills for longer trips.

Our first trip to Key West in 2020 was two weeks (three weekends), which seemed quite frantic compared to our Key West trip in 2022, when we spent four weeks (five weekends). We were much more focused on living and playing in beautiful natural surroundings than actually treating it as a “trip.”

This highlights what Hendrika and I loved so much about our time travelling. Waking up on a beach or in a forest, soaking in the beauty, sounds and fresh air. Having time to explore. And then doing it all over again in a different spot the next day.

Love's Domain

A poem by Hendrika Ono

Fields of gold and gold again

Is echoed in the leaves

Autumn in her dancing dress

comes waltzing through the trees

Her kiss is gold and golden leaves

Hang dreaming in the air,

- Whirling twirling aspen leaves

and willow in her hair.

She will not spare the golden rod

This queen of golden rules

She breathes to life the mellow sun

And bathes in golden pools

All the enchanted forest

A wilderness choir, sing

Willow and aspen, a shimmering harp,

voices in harmony ring

Mini Vacations / Life is One Long Vacation

I always found the typical vacation model somewhat broken. It’s stressful getting ready to go, you have a huge pile of work to get out of the way before you go, air travel sucks, and you have a huge pile of stuff waiting for you when you get back.

What works for me personally is treating exercise and touristy excursions as mini holidays. This does mean I work at least a little pretty much every day with no prolonged breaks, but it fits my personality and van life very well. To a certain extent, I’m “always on” from a work perspective.

However, if you genuinely enjoy your remote work (I do!), then there’s little or no feeling of obligation to work. Collaborating with colleagues feels like social time. Coding and debugging feel like games such as crossword puzzles or sudoku.

And, of course, we were living in what previously were holiday destinations for us. There was no need to “get out of the city” and “get back to nature” because that is how we were living.

Circle Tour

One of our most enjoyable trips was circumnavigating Lake Superior in August 2022.

We took our time getting to the closest edge of Lake Superior. Hendrika started the month off at her annual gathering at a cottage on Lake of Bays, while I stayed home and then drove up and met her. We bummed around Muskoka picking up a concert in Huntsville and boondocking and staying at a friend's cottage for a week or so.

When we started moving in earnest, we typically didn’t drive for more than a few hours per day.

Having Starlink opened up our options tremendously. There were many days where we were in remote and spectacular locations with barely a whiff of cell service, yet Starlink delivered all-you-can-drink connectivity for meetings and movies.

For a full month, we meandered from gorgeous spot to gorgeous spot. During work days, I’d break up coding and meetings with cycling, running and swimming, while Hendrika would set up her art table and break up her art studies with gentle bike rides, walks and yoga.

Northern Shore

By Hendrika Ono, August 2022

Towering trees

that cleanse the air

Turquoise water

every where

Endless waves

An inland sea

Carefree days

with you and me

This stolen land

of myth And dream

This secret time from

Time unseen

These tumbled shores

With polished jewels

Where water reigns and

Raven rules

The northern light

The northern hue

The shifting shades

ecstatic blue

Wash Your mind

Refresh, renew

Clean your soul

In mystic blue

Worship

Hendrika regularly read the Bible and attended church at St. Paul’s in Nobleton remotely or in person. She also attended prayer groups.

While I marvel at the miracle of creation, the “Jesus died for me” narrative never resonated with me. So, Hendrika’s church life and biblical study was an area of her life separate from mine.

Hendrika’s poetry and art intertwines nature and her god. Her poems frequently involve God, but I have never seen a reference to Christ specifically. And her visual art is typically nature-focused. Animals. Lakes. Trees. Flowers.

As we shared the awe of an amazing sunset, waterfall, crystal-clear lake or snorkeling trip, we both sensed the same magnificence. Worshiping the same thing. We just put different human constructs between ourselves and what we were admiring. God and Christ vs. evolution and scientific mysteries.

The Weaver

By Hendrika Ono

HE asked me what we’re doing

And this is what I said

I weave a loving life

By feeling every thread

And of the greater pattern

There is no master plan

It is the living thread

That motivates the hand

And as I sit here trembling

With music in my head

I am so very grateful

That I am too a thread.

Chained

By Hendrika Ono

I saved myself from the city

I live out by the trees

I spend my days by the river

Doing whatever I please

The river, green and golden

Is minstrel to the trees

We spend the evenings singing

Harmonizing with the breeze

If sometimes I get lonely

Under the indigo sky

Turn my face to the water

And watch stars sailing by

The stars of long lost lovers

Are stars for wondering eyes

Their constant light a promise

Behind ever changing skies

I might spend my whole life watching

Under wide open skies

And maybe I am waiting

r someone to open their eyes

It doesn’t really matter

At last I’m finally free

My heart is chained to the rive

here is where I want to be

Levitate

By Hendrika Ono

Buoyed by colour

Lifted by light

Swept into eddies

By birds in flight

The wind sounds like water

Rippling through the leaves

With each breath

My burdens ease

The Worst Dog Ever

We started traveling with our dog, Yoko. She has good moments and not so good moments. And like so many of today’s youth, she has an unwarranted sense of entitlement.

Nomad Life Hack: To improvise a kennel, get two gates and put them between the beds and beneath the centre board.

With immediate family, she is a calm, charming and playful pup. For example, whenever Hendrika takes a nap, it’s very important for Yoko to be by her side. If Hendrika is napping outside on the hammock, Yoko is on edge waiting for the chance to get to her side. Open the door, and she’ll charge out and lie right beside her. Of course, getting to Hendrika’s side in the hammock often means jumping on the hammock, spinning Hendrika around and dumping her out on the ground — a scene that’s played out more than once.

Not so good moments, include, but are not limited to, the dog:

Calling 911 on Hendrika’s phone (that’s OK, Hendrika did that once, too)
Smashing through the screen door of the van (had to be replaced)
Biting the park warden (well, it was just a scratch, really)
Biting my sister-in-law (understandable—- just kidding, Trudy, so sorry again..)
Biting my Mom (drew blood that time)
Breaking my wrist (yup)
Juicing herself in a tyrannical frenzy of barking when anybody came near, despite our efforts to calm her

The warden-biting incident happened when she was tied up at our campsite, but clipped with the little dog tag ring, not the collar ring. The warden came by, she charged, the ring snapped and the poor guy, who was just doing his job, had to fend off a snarling beast. Not to belittle the incident, but it was just a scratch. But reports had to be filed, and, not unreasonably, we had to provide public health officials with vaccination records.

We sought professional help of the dog trainer type, and Hendrika spent countless hours trying to correct the dog’s reactiveness. Progress was made, and, with the exception of the warden incident, the bites (yes, there were others) were more “herding” than aggressive. More a pinch than a bite.

The broken wrist occurred when I took Yoko on a fat bike ride with me through some logging roads near east side of Algonquin Park. I have a “walky dog” that I can attach to my bike to leash her while riding. It works great. Even if she tries to charge a squirrel, the bike is stable, and she can actually pull like a sled dog which is cool. But she has to match my speed and does not have as much fun compared to when she is off leash and can run around. So I let her off.

To return the favour, she chased a chipmunk and ran in front of me causing me to spill. I tried to break my fall by putting out my hands — I guess I should have tucked and rolled. I knew the moment I fell down that I had broken my wrist. I called Hendrika to tell her to start packing up the van.

I was out of the hospital by lunch. We went back home, cutting short a multi-week trip we had planned.

I guess it’s not Yoko’s fault. Two mammals, one has an enlarged neocortex and the ability to compute risk. The other, not so much…

The break was not that painful an experience the day it happened. I even did my usual “daily stand up” work call on the way to the hospital. I was knocked out for the initial setting and casting, and whatever other drugs they gave me put me in a party mood and I had a great time. (Damn, I should have written down what they gave me.) The only “intense” experience was having it reset and recast a couple of weeks later. \

We continued to take Yoko on short trips, but it wasn’t very relaxing.

Bog Dog

By Hendrika Ono, Inspired by Chester

I got a dog, a big brown dog

He is a dog of mine,

With a nudging nose and a scratching paw

And Oh! Such a pleading whine

I got a dog a dog of mine

He is a brown bog dog

With a thumping tail and a drooling mouth

And oh! Such a big bed hog!!

I got a dog a big brown dog

Who yips and whines all day

I got a dog, a big bed hog

Who only wants to play

I got a job dear big brown dog

Where I grumble and whine all day

So go away you big bog dog

I’ve no time to play

Living with Cancer

Before living through my experiences, cancer seemed like something to sweep under the mental carpet as soon as possible.

I was in awe of friends and acquaintances who bravely battled the disease. And then, when it happened to us, I realized that no one volunteers for cancer. It simply shows up in your life, rudely and uninvited, and you just have to deal with it the best you can.

Humans can naturally normalize extremes over time. After the initial shock, calluses form and a new normal materializes. Gradually, you’re able to talk about cancer treatments and death the same way you talk about grocery shopping.

Compartmentalizing

Definition: divide into sections or categories: "He had the ability to compartmentalize his life."

One of the earliest and most helpful coping mechanisms for me was compartmentalizing. I found I developed this ability naturally, probably aided by my nerdy ability to deep focus on technical topics that most would find painfully boring.

After reading an article on https://rethinkbreastcancer.com/ that used the term, I further leveraged the strategy by consciously employing it.

Helping Hendrika manage the cancer was a part-time, not full-time, job. Sometimes the duties were light. Other times, whether it was learning and researching, managing flare ups or attending scheduled appointments, it became more intensive.

Once you’re at the point where you’ve done all you can, put it away and get back to living life.

Balance is important, though. If compartmentalizing becomes escapism or denial, it has been taken too far. And health needs to be the priority, so you can’t get too distracted from the important care required.

Humour

Our relationship greatly benefited from Hendrika’s finding my jokes funny — even really bad ones.

Even in emergency room settings, we always seemed to find something to chuckle about.

Best Dog Ever

Our pets were an enormous comfort to both of us.

Hendrika usually had the cat and dog curled up with her when she was having her morning tea. And getting back to the pets was one of the draws pulling us back home.

Despite Yoko’s xenophobia, when home with the family she was an excellent comfort dog.

Pain Management

Pain management was tricky for Hendrika. I don’t think we ever perfected it.

Opioids were effective at pushing back the pain, but they carried a lot of side effects with them, namely constipation and nausea. This in turn caused more pain. We were fighting a loop. Pain -> take meds -> get constipated -> pain-> …

So opioids were taken reluctantly. Good old Tylenol and ibuprofen were helpful but limited in their effectiveness.

Massage

Hendrika loved getting massages, and I greatly appreciated being able to give them. We set up a portable massage table by a window overlooking our backyard. I’d turn up the heat and put on spa music to try to make the experience authentic.

In a sea of “nothing you can do,” it was something I could actually do to help. And Hendrika consistently said the massages helped level her up.

Ask for Help

Friends and family want to help. Of course, the disease being what it is, there’s only so much that people can do.

What helped me was phone calls to close friends who had gone through similar situations. I’m not sure why it helped, but I’m certain that it did.

Acceptance

You’ve probably heard it a million times: “Live in the moment.” But what if your moment sucks horribly?

I found The Power of Now (actually a condensed version) had a good answer. You can either:

Change the situation, if you can.
Leave the situation, if you can.
Accept the situation as is. If you can’t change, leave or choose not to leave the situation, you may be forced to accept it forever, or at least until things change and you can take another action later.

And once you accept the situation, living in the moment is still helpful, at least for a caregiver. For example, if Hendrika was suffering pain, I could focus on the act of massaging or simple nursing tasks like getting water or medication. This allowed me to fulfil my role in a calm and dedicated way that did in fact change the situation, if only by a little.

Talk About Death

In some respects, a terminal diagnosis of cancer does not particularly differentiate one person from everyone else. We all know we’re going to die one day. And, just like for everyone else, it can remain an abstract and unexplored topic.

However, deeply knowing your own attitudes, which can be developed by talking about them, will help when the time is closer. If you’re caring for someone, knowing how they think about death and, hopefully, knowing that the person is comfortable with it can be enormously helpful when coming to terms with death after it happens.

Unlike sudden heart attacks or accidental deaths, cancer does afford you the opportunity to make peace with dying. If you take advantage of this, it will be easier for everyone when the time comes.

Fall

The Fall Leaf, Fall 2022

By Hendrika Ono

Swirling, swirling the wing sings a harmony

Intervals like a ladder to heaven

Rising floating I spin in light and colour

Falling with the leaves

If you want this to be a story of triumph over cancer, this is a good stopping point. Hendrika and I couldn’t be more grateful for the time we spent together, loving, discovering, mutually caring. Soaking up the beauty of the land. Dwelling on peaceful shores. A decisive win against a terrible disease might have been a perfectly acceptable end to the story: She got cancer, they bought a van and lived happily ever after. The End.

The planet keeps spinning, all things must pass and metastatic cancer has a way of catching up with you.

Looking back, May 2022 had the first warning signs that the drugs had stopped working. By September, all of Hendrika’s tricks for getting her tummy problems sorted out had stopped working well. With Ibrance out maneuvered by the cancer, we were back to square one.

Dr. Chu, Hendrika’s oncologist, was advising the next step was a round of chemotherapy, depending on how Hendrika was feeling at the next check up in four weeks.

I consulted Dr. Google looking for clinical trials or anything that might be helpful, and quickly realized I was not capable of effectively parsing the information I was reading. I shifted my focus to finding experts that we could hire, and reluctantly followed the ads of companies that had outbid their competitors for the keywords I was using in my searches.

I came across Alex Rolland and Michelle Morand of ctoam.com (Cancer Treatment Options and Management).³ They seemed to have the skill set I was looking for, but I was suspicious. I began tapping healthcare experts in my personal business network by barging into inboxes of acquaintances I highly respected. The responses were heartwarming. One particularly helpful response:

“Dear Ken:

My heart is with you…

Given what you describe, my main question is whether there is at least one person in your wife’s clinical team that you both trust, and who could support you through this critical period. Such a person could be invaluable to determine whether her case could be reviewed in a way that would be equivalent to what groups such as CTOAM offer for a fee. Even though I do not know the latter per se, they seem to be legitimate. The main risk, once one goes down this path, is to fall onto a slippery slope, which tends to be full of unscrupulous people who feed on despair, and above all, on fear and the urge to do anything, so that regret could be avoided later on.⁴”

I decided to give CTOAM a try and booked a second opinion call with its expert, Alex. I’m glad we did. I feel it was a valuable perspective. I should have done it sooner. Dr.’s Chu’s perspective was that the advice was impractical. Indeed, Alex is not a doctor. CTOAM, which is based in British Columbia, also demonstrated a complete lack of knowledge of the realities of the public insurance realities in Ontario.

The overall strategy CTOAM advocated was precision oncology, which targets cancer cells. General chemotherapy, which Hendrika had endured eight years prior after her initial diagnosis, interferes with all cells that reproduce quickly. Fast reproducing cells, like cancer cells and hair, are impacted the most. It is sickening, literally. Nausea, vomiting, aches and pains, brain fog are just a few of the side effects. For all of these reasons, it should be treated as a last resort only after all targeted treatments have been exhausted. Target treatments attempt to avoid the systemic side effects by impacting only the cancer cells.

So how does one find a targeted treatment?

By sequencing the genome of the tumour.

CTOAM identified two companies that perform such sequencing. Their own and Foundation. The tests are not covered by Ontario Health Insurance Plan, but some private insurers do cover it. It was an expense we were willing to pay, if it made sense. It is normal practice to bank the biopsies, and we had two biopsies available for sequencing, from the original 8-year-old tumour and the metastatic tumour we discovered three years ago. Neither seemed like an ideal candidate, since the Ibrance had likely changed the genetics of the tumours we were battling.

There was also the problem of a lack of targeted treatments for breast cancer in particular (unlike lung cancer). We had checked Ibrance off the list; Venzio was inconclusive; and Picray, we learned, was targeted at a very specific mutation. Perhaps there are more, but we did not hear of them. Dr. Chu thought that the chances that Hendricka had the gene mutation for Picray were very low (the doctor had never seen a case like that before). Michelle at CTOAM encouraged us to get the testing, but I feared the advice was commercially biased, or perhaps just their standard practice. The odds of the test leading to a new treatment seemed low.

Another recommendation from CTOAM was to get a PET/CT scan.

A normal CT scan, of which Hendrika had many, is like an x-ray except it provides a three-dimensional image. What provides the blackness or whiteness of the resulting images is the varying density in the body. Alex pointed out that sometimes tumours have the same density as the surrounding tissue, or perhaps the tumour is necrotic (having dead cells) and not of concern, or small but highly aggressive. Density alone fails to give a complete picture.

A PET/CT scan makes the tumours glow in the dark for the CT scanner. A sugar that is bound to a radioactive isotope is injected prior to the scan. Cells, including cancer cells, that rapidly ingest sugar soak up a lot of the radioactive isotope. An SUV (standardized uptake value) is measured, and a radiologist can pinpoint where the tumours are and how active they are.

At the time, a PET/CT scan in British Columbia, where CTOAM is based, cost about $1,000 CAD. The cost in Ontario was about $3,000, and, despite its usefulness, it was not covered by Ontario’s public health insurance. We found a clinic, Windsong Radiology in Buffalo, New York, about two hours from our home, for $1,700 USD or ~$2,300 CAD. So we decided to make a road trip out of it.

We hit the fall colours perfectly. We spent the first two days exploring the Erie North Shore at Port Maitland and Rock Point Provincial Park. After boondocking at a beach parking lot close to the border, we crossed into the States and spent a morning in Buffalo getting scanned.

Then we boondocked at Kinzua Dam and a boat launch in the Allegheny National Forest in Pennsylvania and then stayed at Heavenly Sunset Llama Farms, a Harvest Host. We went horseback riding at Summit Trail Rides and toured the Corning Glass Museum.

Hendrika’s tummy problems continued to worsen at a worrying pace. We did our best to enjoy the trip, but the pain was eclipsing other realities.

So we headed home, with a brief leg stretch at Letchworth State Park. We were blessed by a perfect rainbow by the falls.

A few days later, it was finally time for the next meeting with Dr. Chu to discuss next steps. We had sent Alex’s recommendations beforehand, which targeted drugs including Venzio, a similar compound to Ibrance. And we had the report from the PET/CT scan.

At the end of the meeting, we felt the best course of action was the three rounds of general chemo that we were hoping to avoid. Alex’s suggestion of Venzio was guess work without the genetic testing, and Hendrika’s symptoms were escalating quickly.

Dr. Chu thought the PET/CT didn’t give her any additional information. Hendrika and I were glad we had done it because we could use it as a baseline to measure the impact of future therapies. Perhaps we’d take a trip to British Columbia for the next one!

Dr. Chu also ordered a procedure to drain the fluid that had been collecting in her abdomen and attempt to get a fresh biopsy. The procedure, where they drained 1.8 liters of fluid, provided immediate relief from Hendrika’s back pain. But, for reasons that are unclear, the next few days were terrible. Perhaps the draining had caused some shifting of the tumours or it was just the tumours wreaking havoc. In any event, leading up to the scheduled chemo, Hendrika was unable to eat or drink and endured terrible pain and nausea. “I’m not going into the chemo from a position of strength,” Hendrika mused.

After a moderate rebound for a couple days, chemo day arrived along with prescriptions for steroids, immune system boosting injections and more anti-nausea pills.

As promised, it was terrible.

Dr. Chu kindly arranged for a home care nurse to provide an IV to address Hendrika’s desperate dehydration. Homecare, still reeling in staff shortages presumably, kindly phoned and invited Hendrika to sit in their clinic for four hours for the IV (while cramping and vomiting). No thanks. They did end up showing up a couple of days later. But, I started investigating private nursing for round #2.

About a week later, Hendrika’s symptoms from the treatment itself had cleared, and, perhaps, we were seeing some benefits of reduced tumour size and activity. We even began thinking of squeezing in a short trip before the next treatment.

We considered a trip to Virginia or Maine, but elected to stay closer and in Canada. Hendrika liked the idea of Pelee Island again. She said it had a certain symmetry. I guess she was thinking that perhaps it would be our last since our first trip in Winnie was to Pelee Island.

This time we spent more time on the island, and we were able to really immerse into the serenity of the place. We were blessed with some amazingly warm November weather. And, of course, the journey is the destination, and we stayed at Port Burwell, John Pearce Provincial Park, Rondeau Provincial Park and returned to our old favourite, Long Point Provincial Park, on the way home.

While we were on Pelee Island we received an exciting phone call from Dr. Chu. The biopsy had tested positive for the PIK3CA mutation, the mutation that is required for the Piqray targeted treatment. We did the happy dance when we learned our date with the chemo clinic was canceled.

We started to navigate the bureaucracy to get started on a new targeted treatment. Our hopes were pegged squarely on Picray. Optimistically, we thought we could gain an additional year before arriving back to the bleak outlook of general chemo as a “palliative” strategy.

“We’ll go to Nashville, Tennessee, New Orleans, Texas, New Mexico and California to see my sister. We’ll leave the van at an airport, fly back to Toronto, do our medical stuff and then fly back to the van,” I thought.

It was with that hope that we started the Picray, two pills taken once a day. We also started upping the pain pills since the cramping had returned with a vengeance. Pain, nausea and vomiting went from bad to worse in the next couple of days. At first we thought it was the Picray, but the timing of the problems wasn’t right. Eventually, we concluded that the nausea was a reaction to the escalating tummy pain.

And by “tummy pain” I mean, imagine a medieval torturer twisting knives into your stomach. As Ryan and I discussed, “Dying OK,” “Dying in agony, not OK.”

The palliative pain specialist suspected a blockage and told us to get to the emergency department right away.

After a tough day packed into the ED waiting rooms, we were admitted to the oasis of the surgical department at the brand new Cortellucci Hospital.

What was clear was that things were getting worse very quickly. Our plane was in a nose dive. The Picray was our one hope of pulling up before crashing. Will Hendrika live until Christmas? Will we ever be well enough to go on another trip? Will we have one more good year courtesy of Picray?

We did make some good progress on learning how to cope with the new realities of the advanced stages of Hendrika’s cancer. We expected to be out in a couple more days, and Hendrika was still getting ready to host an event at home in the coming days.

But then things took a sharp turn for the worse.

While walking around the ward for exercise, Hendrika suffered a perforated bowel. After a challenging night, she passed peacefully in the loving embrace of her husband and children, while a gray November rain pattered on the windows.

The date was November 30, 2022. three years to the day after driving home Winnie for the first time.

Death and Dying

In September 2021, by happenstance, an acquaintance, Alex Jadad, a brilliant and accomplished researcher, distributed “What would it take to die well” on a feed that I happened to be on. It helped organize my thoughts by providing key attributes for a good death:

Relief from physical pain and other physical symptoms
Effective communication and relationship with health-care providers
Performance of cultural, religious or other spiritual rituals
Relief from emotional distress or other forms of psychological suffering
Autonomy with regards to treatment-related decision-making
Dying at preferred place
Not prolonging life unnecessarily
Awareness of the deep significance of what is happening
Emotional support from family and friends
Not being a burden on anyone
The right to terminate one's life

Relief from physical pain and other physical symptoms

Relief from physical pain was an obvious priority for us in the late stages. Being able to clearly articulate this goal to our healthcare providers was an important part of my advocacy.

It was also clear that the role of the healthcare provider impacted the ability to accommodate this priority. Nurses are simply able to follow the latest orders from doctors. Most doctors, except palliative specialists, are unable or unwilling to extend pain relief beyond the point of life-shortening risk to the patient. As one doctor stated when refusing my requests to increase the opioids, it amounted to “euthansia” and “it is beyond my competence.”

Things quickly changed when the palliative specialist took control. Our pain management priorities immediately were aligned. We confirmed with Hendrika that the pain reduction strategy could shorten life, and she agreed without hesitation. A continuous drip of an opioid was prescribed, and we were no longer battling bouts of pain when the “safe” levels began to wear off.

It’s common practice for hospitals to put a DNR (Do Not Resuscitate) flag on patient’s charts. They should also develop Pain Management Prioritized flags. This would have given physicians who are not palliative specialists the tools to meet patient goals in situations like ours. We also found the pharmacy department slowed down access to pain medications. I suspect the orders were considered outside of safety norms, and they required further confirmation before issuing the medications.

A Pain Management Priority flag would have smoothed the process and made Hendrika less uncomfortable.

Effective communication and relationship with health-care providers

Our face time with doctors during the process was uniformly good throughout the journey, including our last hospital stay.

In the hospital, what hampered communication was limited availability of doctors and the need to communicate via nurses. The nurse would enter information into the hospital medical records system, a doctor would review, sometimes in a timely way, sometimes not, and enter orders for the nurse to follow.

I was confronted with the prospect of having Hendrika wheeled around the hospital to get an x-ray during what turned out to be her final few hours, when the slightest movement and jostling could be terrible if we were outside the peak opioid window. Pushing back via the nurse was slow and awkward. A quick synchronous discussion with the presiding doctor would have helped me understand the doctor's thinking, allow me to convey the situation and express our priorities and an optimal course determined.

The nurse suggested a portable x-ray. I consented as it seemed like a good compromise. I’m mixed-minded on the actual benefits we received. It was helpful to know that Hendrika was suffering from an “unsurvivable” bowel perforation. We decided to let the kids know, and they decided to come right away. On the other hand, we had already decided to prioritize pain management, so it did not, as it turns out, impact our medical course of action.

Performance of cultural, religious or other spiritual rituals

As for religion, Hendrika was very active in her church’s prayer group that fall. Knowing that the church connection was important to Hendrika, I did reach out to her pastor. It didn’t amount to much in our situation. Things happened very quickly at the very end.

Zooming out, religion was an obvious source of strength and comfort for Hendrika and, indeed, a huge percentage of the population. Being atheist-minded myself, Hendrika’s religious life did not overlap with mine, but I was very happy to see it be such a source of love, friendship and strength for Hendrika and for Hendrika to provide the same to others in return.

Relief from emotional distress or other forms of psychological suffering

The prior discussions about dying and accepting its inevitability were important. And, clearly Hendrika’s faith was enormously helpful. I also believe that my presence and advocacy provided some relief. I was also proactive at getting anti-anxiety medications flowing.

Autonomy with regards to treatment-related decision-making

As for “autonomy on decision making,” I had this objective in mind throughout our journey. A few times I had to remind myself to be purely supportive and ensure Hendrika was in the driver’s seat. Hendrika being Hendrika, this played out naturally. Generally the healthcare providers were excellent at allowing Hendrika to make decisions, and we were reminded that treatments could be refused.

Dying at preferred place

As our journey relates to “dying at preferred place,” Hendrika would have preferred to be at home with the cat and dog, certainly.

But we needed the immediate interactions and response by doctors when her time came. I’m so glad we weren’t traveling in the van when the perforation occurred. Retrospectively, we were playing with a loaded gun. Imaging the bowel perforation happening in the middle of nowhere without immediate access to IV opioids and medical experts is sobering.

And, I can’t say enough good things about the Cortellucci Hospital design from a patient’s perspective. Hendrika and I had been in older hospitals with multiple patients in the room. I had become accustomed to noisy environments where I'd makeshift a bed out of chairs and think about bringing my camping stuff to the hospital. We’d overhear the suffering and conversations of roommates only separated by a curtain.

The rooms at Cortellucci are quiet, and there is only one patient per room. We would occasionally hear the distant cries of a fellow sufferer, but it was the exception and not intrusive. The bed was an impressive piece of hardware. Any possible configuration at the press of a button and even a feature that made slight adjustments automatically to move the patient — presumably to prevent bedsores.

And the room was designed for family members to be present. A comfortable pullout bed made a huge difference to our last days.

Kudos to the Ontario public healthcare system for raising the standard of care.

Not prolonging life unnecessarily

To achieve “Not prolonging life unnecessarily” was a bit of a battle. By default, the system wants to keep people alive as long as medically possible.

Fortunately, we had the presence of mind to put a cautionary DNR (Do Not Resuscitate) on Hendrika’s medical record at the hospital when we were admitted. Given her outlook, Hendrika was surprised they would resuscitate. “That would be TERRIBLE,'' she said. But the nurse confirmed her current status of “Full CPR” and Hendrika went through a simple process of adding a DNR to the hospital system, which required a brief conversation with a doctor.

When Hendrika’s condition deteriorated, before the palliative specialist was in control, the attending doctor was preparing to move Hendrika into the ICU and ordering a CPR kit in case it was needed. I was able to quickly divert this undesirable direction by simply pointing out there was a DNR. The medical team quickly shifted gears. No ICU. No CPR. Less pain and suffering.

Awareness of the deep significance of what is happening

Hendrika had discussed, forecasted in fact, the scenario of an incident concluding things quickly. In the prior months, one has the general knowledge that one will die soon, but it is still abstract and not too dissimilar to anyone else.

Hendrika and I had many direct discussions about dying. When it confronted us for real, I felt equipped to advocate for her and carry out her wishes.

At one point the night prior she said, “I’m dying.” “I know”, I replied. “We’ll get through it together.”

Emotional support from family and friends

A ray of light for me is that Hendrika referred to me as a rock and praised my actions. And her broad network of friends provided a constant flow of positive energy and inspiration for both of us.

Not being a burden on anyone

Except healthcare providers, right? As her advocate, I was sometimes frustrated with Hendrika’s unwillingness to make requests for services. “Yes — damn it — have the on-call pain doctor paged and don’t worry about disturbing him.”

Right to terminate one's life

We were never in a physician assisted suicide scenario. But, just knowing the option existed was a comfort.

From our experience, what was important and not discussed in “What would it take to die well,” but a key ingredient, is the need for a partner.⁵ Hendrika pointed out that none of the other patients in the ward seemed to have a partner with them every night. We were outliers in that respect. Of course, many patients were just recovering from surgery and had a “way out.”

Most of the time, my partnership in Hendrika’s healthcare was as a friend. A few evenings at the hospital during the last days were spent strategizing on next steps, looking into hospices, investigating at-home IV meds and tracking down other topics of interest. We remarked that it was a lot like being in Winnie except it had a nurse call button.

My role as a true advocate was only during the periods when Hendrika was too consumed by pain or too doped up from the opioids to advocate for herself. These times were far too plentiful, but also a relatively small part of our journey.

I can only imagine how different an experience it would be for someone with no advocate and without the capacity to at least partially understand how the healthcare system works. If such a person were dumped off at an emergency department with a similar set of problems, without a DNR, without someone pushing back on needless procedures and pushing for pain management over prolonged life, the system would drag them through a meat grinder, taking a much more tortuous and prolonged route to the same end.

In the shitshow of Hendrika dying from the unfair foe we call cancer, one small silver lining for me was that I was there for her every inch of the way. And I made it better. Twenty-seven years before I made a promise of until death do us part. Right after the discovery of the metastasis, more than three years before Hendrika’s passing, I made a promise to Hendrika that I would be there to the end.

I did my best, even though I was often frustrated by my clumsiness and missteps.

I kept my promise.

Last Day

Poem by Hendrika Ono Found on the “top of the pile”, Dec 2022

What do you keep?

What falls away?

On this the last,

the very last day.

What do you ask?

For what do you pray?

At this the close

Of the very last day.

It doesn’t really matter

As long as we stay

As long as we’re together

On the very last day

Twilight

Lyrics and Video by Hendrika Ono, Music by Ken Ono and Hendrika Ono

twilight knows

where the river flows

the day now dark and deep

the moon will glow

on the midnight snow

as the folk get set for sleep

they lay their heads

on the feather beds

and ride the moonlight beam

in twilight state

til the morning break

and this is what they dream

they dream themselves in another light

in another life than this

with angels and demons and all in between

they wander wherever they wish

and though the night

a lifeline of light

lies cradled in their hands

a twilight line

thin and fine

anchors them to this land

this life of dreams under moonlight beams

Has lessons secretly planned

learn to thrive learn to grow

learn about letting go

in their own time , they'll cut the line

they've learned of letting go

the twilight state no more will break

eternity now can flow

( butterflies and lullabies )

twilight knows

where the river flows

the day now dark and deep

the moon will glow

on the midnight snow

as the folk get set for sleep

Watch

Midnight Bells

Lyrics by Hendrika Ono, Melody and Chord Progression - Pachabel’s Canon

Darkness falling, midnight calling, leave behind your

earthly cares, as you climb celestial stairs

Upward, onward, voices now heard, listen to the stars, they’re singing

Can you hear the bells are ringing

Come along join the song

For you the bells are ringing

We are one, we are strong

When every voice is singing

Leading on through the dark, the light of joy they’re ringing

Midnight bells, sounding, love redeeming

Close your eyes, reach inside, and find a new beginning

In this tower of song you’re the bell that’s ringing

Raise your eyes, sound your voice, in praise of time

Lovers playing

Choose a part and join the singing

Midnight flying, darkness dying, stay with us the dawn is breaking

Light of endless day awaking

Lightness, brightness, heal the darkness

Ring the bells and join the singer, bring the dreamers home together

Watch

Notes

Not her real name in order to protect privacy↩
Through some professional contacts, I did manage to get a call centre I could call to get health system navigation help. Normally, they’re managing US travel insurance cases they're on the hook for. For a babe in the woods in a for-profit health system, their knowledge of the system could be a real help. It would be a great product for under or uninsured cancer survivors wanting to travel in the US. ↩
Their real names given their for profit nature and my generally favorable, but somewhat reserved opinion↩
Bolding is mine↩
Alex Jadad, an author of What would it take to die well, agrees with the importance of having a partner during such critical times. The main limitation of the work published in The Lancet is that the results had to be drawn from the existing literature, which tends to underestimate this crucial issue↩

Biopsies and Beginnings​

Journey

Hendrika, Music by Ken and Hendrika, 2012

Gummy Bears and Key West​

Down by The Sea

Lyrics by Hendrika, Music by Ken and Hendrika, 2020

Ibrance​

A Great Pandemic​

Killarney

Poem by Hendrika Ono 200?

And I Listen to The River

Poem by Hendrika Ono, 200?

Life on the Road​

Staying Connected​

Boondocking​

Trip Planning​

Winter Trips​

The wisdom of the Trees

Poem by Hendrika Ono

A Thousand Times and More

Poem by Hendrika Ono

Exercising on the Road​

Working on the Road​

What’s Not to Like?​

Life Figured Out​

The Nomads​

Love's Domain

A poem by Hendrika Ono

Mini Vacations / Life is One Long Vacation​

Circle Tour​

Northern Shore

By Hendrika Ono, August 2022

Worship​

The Weaver

By Hendrika Ono

Chained

By Hendrika Ono

Levitate

By Hendrika Ono

The Worst Dog Ever​

Bog Dog

By Hendrika Ono, Inspired by Chester

Living with Cancer​

Compartmentalizing​

Humour​

Best Dog Ever​

Pain Management​

Massage​

Ask for Help​

Acceptance​

Talk About Death​

Fall​

The Fall Leaf, Fall 2022

By Hendrika Ono

Death and Dying​

Last Day

Poem by Hendrika Ono Found on the “top of the pile”, Dec 2022

Twilight

Lyrics and Video by Hendrika Ono, Music by Ken Ono and Hendrika Ono

Midnight Bells

Lyrics by Hendrika Ono, Melody and Chord Progression - Pachabel’s Canon

Notes​

Biopsies and Beginnings

Gummy Bears and Key West

Ibrance

A Great Pandemic

Life on the Road

Staying Connected

Boondocking

Trip Planning

Winter Trips

Exercising on the Road

Working on the Road

What’s Not to Like?

Life Figured Out

The Nomads

Mini Vacations / Life is One Long Vacation

Circle Tour

Worship

The Worst Dog Ever

Living with Cancer

Compartmentalizing

Humour

Best Dog Ever

Pain Management

Massage

Ask for Help

Acceptance

Talk About Death

Fall

Death and Dying

Notes