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December 2024 Update

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Third Anniversary

Yesterday was the third anniversary of my tripping on the sidewalk while walking the dog, going to the Emergency Room to get my ribs x-rayed, finding out my ribs were okay but that I had a tumour in my lung, and then finding more tumours in my brain (10), an adrenal gland and a lymph node. Perhaps an odd anniversary to celebrate but anyone who has had cancer or a relative who has, knows that every year, every month, every day becomes another reason for giving thanks, another reason for spending time with family and friends, and another reason to make the most of each hour.

Lastest Medical Update

My brain oncologist reviewed my MRI from two weeks ago and not only is there no spread but they feel confident that all the remains of the lesions are scarring from the radiation treatment in January 2022 and no longer active tumours. Today my melanoma oncologist confirmed the same regarding the other three tumours! My sister calls me a miracle but in reality, the miracle has to be the immunotherapy treatment. When I first started the treatment in February 2022, the oncologist told me the data they had (based on about 6 or 7 years the treatment had been available) suggested a 50% chance of surviving for five years. This he explains includes people for whom the treatment just didn’t “take.” Cleary it has in my case. While I haven’t reached that 5-year mark, things are looking pretty good.

So what happens now? Well apparently they have little data on people who have melanoma which has metastasized (i.e. spread) to the brain so to err on the side of caution, we’ll continue the monthly treatments for now. It’s only two consecutive half-day visits to the hospital once a month with minimal side effects so was really a no-brainer to agree. And in another sign of the doctor’s confidence, brain MRIs are going from every three months to every six, and CT scans from every three months to every four.

I really can’t say enough about my treatment at Princess Margaret Hospital – if you haven’t bought their latest Lottery Tickets there’s always time 🙂

And on the Non-Medical Side of My Life?

Still plugging away at The Queen’s Own Rifles Regimental Museum and Archive as the Director and Archivist. Among other things, I’m working on creating profiles on the 102 QOR soldiers killed in 1945 in support of a trip by 35 current soldiers of the regiment travelling to Holland in May 2025 to commemorate the 80th  Anniversary of the liberation of Holland and the Victory in Europe – you can read more about that trip here.

This fall we’ve had lots of volunteers for our weekly Thursday work nights at the museum including four University of Toronto students specializing in archives which is great because this has been our biggest backlog and weakest volunteer strength in previous years. It not only benefits us but gives some practical experience for the students. The photo above is our year-end holiday drinks at the Madison Pub with the first drink courtesy of our Curator, Shaun Kelly!

We also upgraded most of our exhibit cases and installed lighting, installed a new exhibit with very rare 1860’s equipment, and redone our Second World War exhibits including new interpretive panels.  Our collections database includes over 4,900 items and varying amounts of detail on over 6,350 people.  Our website page views are up over 14% all of 2023 with two weeks still to go. November 9th saw over 900 visitors to our “QOR Day at Casa Loma.” (photos here) AND my former work colleagues will appreciate that we actually received our HODG grant before our fiscal year end LOL.

Family home built circa 1869.

I’ve also spent quite of bit of time this summer and fall in Brighton with my now 92-year-old Dad at the family home and visiting my 91-year-old Mum rocking out in her nearby nursing home. And that’s where I’ll be spending the holidays with some trips to North Beach Provincial Park to walk 13-year-old Apollo on the VERY windswept beach!

Gratuitous Apollo photo in his classic argyle sweater!

No promises on my next update but for now, Happy Holidays, Merry Christmas, and a very Happy New Year!

Remembering a Tornado 50 Years Ago (and other news)

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Photo above is from the Brighton Digital Archive.

It was Friday, July 13, 1973 (yes it was a Friday 13th!) and I was sitting with some friends in the backyard of my grandparent’s house where I was staying. I was sixteen and spending the summer in Brighton where I was working at a couple of jobs.

We were watching the rather spectacular lightning and thunder show that seemed all around us even though it wasn’t yet raining. Aside from the thunder, we were surrounded by an eerie silence. But then the rain started – large hard drops beginning slowly but soon picking up speed and perhaps joined by some hail. We quickly headed to the west kitchen door (yes, we have two kitchens LOL) and I rushed to close the windows upstairs. Reaching the large bedroom in the southeast corner, I found the heavy area carpet flipped up over the beds and the curtains flanking the south window fluttering up near the ceiling. As I’m closing the heavy wooden sash windows of this home built in 1869 by my great-great-grandfather, I was greeted with an eerie greenish greyness that prevented any view of the century-old trees lining the street in front of the house – and of course, equally blocking sight of the homes across the street. This was accompanied by the ferocious howl of the wind – very accurately described as the sound of a freight train bearing down on you.

I heard a crashing sound of breaking glass somewhere in the house and immediately thought of the rather unique light fixture in the front hall. Having secured all the windows, I dashed down the front stairway to see both my grandparents trying to close the big wooden front door and added my weight to it until we could turn the old skeleton key to secure it.  I was relieved to see the light fixture still in place, although clearly it had been swaying precariously. My friends quickly noted that a shutter had blown through a window and as if there was still any doubt, I realized this was a tornado!

I strongly suggested we needed to get to the basement NOW!  My grandmother of course was more worried about items that might get damaged by the wind blowing through the broken window so while my friends help them to the basement, I rushed to put various lamps and other breakables on the floor. By the time I reached the basement, it was all over. Just 32 seconds we would find out later. The freight train was gone and in its place was a deep enveloping silence. No birds sang – just nothingness…

We more or less staggered out of the house, stunned by the view of massive trees felled all around us. In our backyard at the end of a short driveway had been a gigantic willow tree – big enough around for two people to just barely join hands. It was now lying along the length of the driveway and completely hiding my grandparent’s AMC Rambler from sight, with an eight-foot hole where the roots had been ripped out of the ground. The main street which our house faces was covered by century-old maple trees as far as we could see in both directions. The house beside us (also built by my great-great-grandfather) had part of its imposing tower lying in the front yard, and we realized how lucky we were to just have a broken window. Others were emerging now from their homes and cellars, all with stunned disbelief – I mean let’s face it, Brighton is not exactly in “Tornado Alley”!

I got my grandparents settled in the house and my friends and I headed off to check on some of my grandparent’s friends to make sure they were ok. Clearly many were in mild shock but none had been physically hurt and most had surprisingly little damage to their homes.

My friends and I returned to our homes. The power was out so I dug out a camp stove on which we managed a reasonable dinner as I recall (outside on a picnic table of course 🙂 )  We were startled at one point by the phone ringing. I guess we’d just assumed the phones were out as so many lines seemed to be down but apparently ours was still working and we were able to assume my parents in Toronto that while we were a bit shaken, we were all safe and sound.

Luckily it stayed daylight for much of the evening and within hours of the storm ending, the chainsaws started and would continue for weeks on end, echoing throughout the village. We eventually got someone to work on the willow tree covering the car and were amazed to find that most of the branches had fallen around it with only a small dent in the roof. We also realized that if the tree had fallen to the north or south, it would have crashed into either our house or the neighbour’s.

You can watch more about the tornado in this short documentary film prepared for the anniversary:

Within a couple of years, we planted three new maple trees on the front lawn and one in the back to replace the willow (how I hated raking willow tree leaves!) and they have all grown tall and strong. And the house continues as a family home to this day.

You can see the shadows cast by the no longer new maples on the front lawn. The second-floor window in the centre is the one I struggled to close,

And in other less dramatic news…

On May 7th we celebrated my mother’s 90th birthday in the lunch room of the Trenton Memorial Hospital with balloons and cake and lots of my sisters and nephews and nieces. A few weeks later she was lucky enough to get a room in the Maplewood Nursing Home in Brighton – less than two blocks from their home which makes it easy for my father to visit her regularly.

On June 6th I attended a black tie dinner at Casa Loma on the anniversary of D-Day. This also launched the fundraising campaign for a trip to take 65 serving soldiers of the regiment to Juno Beach in 2024 for the 80th Anniversary (More about that here if you’d like to help support this event which is not funded by the Canadian Government.) In preparation for the dinner, I researched the sixty-one QOR soldiers who died on D-Day (plus one who died of his D-Day wounds the next day) and you can find all the profiles in a document on our museum website. The dinner was great but it took me a couple of days to physically recover as my stamina’s not exactly what it used to be.

Later in June, I had my every-three-month CT scans and MRI. The results were “stable”. I have to admit to being slightly disappointed there wasn’t any noticeable shrinkage in the tumour/lesions that still show up, but the oncologists seemed quite happy – they weren’t getting better and they weren’t spreading anywhere. The brain oncologist wasn’t even sure if the ones still showing in the brain were actually “active” or just the dead remains (my wording not hers but you get the drift.) So I can live with that – both figuratively and literally! 🙂

Meanwhile, I continue with the monthly immunology treatments at Princess Margaret Hospital. This also requires a trip to the hospital for pre-treatment blood tests and an appointment with my oncologist to confirm I’m good for the next treatment. Luckily it’s just five subway stops from home. The 45-minute IV drip in a comfortable recliner chair is fine – waiting for 1 1/2 to 2 1/2 hours to be assigned a chair is the worst part. Actually, the most painful part is tearing off the tape they put on my apparently hairy hand to secure the IV in place LOL.

I’ve probably said this before but compared to chemotherapy, I have relatively few side effects from my treatment. Muscle weakness is probably the worst, with some fatigue, lack of appetite and dry mouth, so I try not to complain.

I’ve been to Brighton on a couple of weekends over the last few months to hang out with my dad and visit my mum – always nice to get out of the city!

While in the city I attended one of the Fringe Festival productions – so nice to see so many annual events returning after COVID, and enjoyed a few dinners with friends.  I also got out one evening with our team of museum volunteers for a tour of the Soldier’s Tower Museum at the University of Toronto, courtesy of their board chair. I’m looking forward to co-hosting our first in-person meeting of the Toronto Military Curators’ meeting this week.

And when I’m not walking the dog, I’m still working on responding to our QOR Museum‘s research requests, processing archival material, digitizing documents, updating the financials, providing data for grant applications, writing blog posts, taking museum and archive-related webinars, and lots of other things I can do from home – anything to avoid that three-story climb to the physical museum!

Here’s hoping everyone is enjoying the summer – heat and all – and I’ll give another update when there is enough news to share 🙂

March 2023 Update

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Yes, I know its been quite a while since my last post but to be fair I didn’t have a huge amount to tell so I thought it best to wait until I had something worthwhile to report than just “another day in retirement” LOL

In the last week of December, I was given the OK to drive again and got to Brighton to spend Christmas with my parents just before the big storm hit. Every time I let my 12 lb dog out over the next three days, I had to ensure he didn’t blow away! It’s certainly nice not to have to depend on someone else driving me around again. Went again to Brighton with a sister on February 4 & 5 although this time we weren’t so lucky in missing the snowstorm – at least on the way there.

I was pleased to attend The Queen’s Own Rifles of Canada’s change of Honorary Lieutenant Colonel event held at Casa Loma on January 22nd which included the surprise attendance of the Minister of National Defence. A great event which finished with a reception in the QOR Museum on the third floor.

On February 2nd we once again held our in-person museum volunteer recognition night at the Royal Canadian Military Institute after three years of virtual events as a result of the pandemic.

Current archiving project…..sigh

On one of those nice Saturdays we had (when the snow had all melted and the next dump was still to come) Apollo and I headed down to Cherry Beach dog park for a good run (well walk for me – he covers about three times my distance running back and forth!) And in March I was able to join friends John, John, Brent, Brian and Joe for Sunday brunch where I sated my long-time yearning for eggs benedict 🙂

Other than that, I spend most of my days on museum work (from home) – processing archival materials, dealing with financial updates, responding to research requests, and sorting out accession records – never a dull moment he says sarcastically! And of course, enjoying – most days at least – three walks a day with Apollo. Sometimes the weather shortens those but he really can’t miss them completely 😉

Now that the fun stuff is out of the way, some of you may be wondering how the journey with cancer is progressing. As I think I’ve previously mentioned, I’m having immunotherapy treatments (infusions of NIVOLUMAB) once a month instead of every two weeks.  This requires blood work and a doctor’s appointment at Princess Margaret Hospital, followed by the treatment a couple of days later. It’s given by IV and takes maybe 30 minutes – often the wait time to get a chair takes longer but thanks to Audible, the wait doesn’t usually seem too long.  Unlike chemotherapy, there are minimal side effects – a rash (controlled by a steroid cream), lack of appetite (I’ve lost about 35 lbs over 14 months – not a bad thing all-round lol), some lack of taste, and some drowsiness. But clearly, nothing to complain about at all.

Last week I had some scans (MRI for my brain and CT for everywhere else) and the results were all positive. The brain team summary was: Further interval improvement. Further decrease in size of the small residual left occipital lobe enhancing lesion, and decrease in size of the other lesions to the point where there are no longer perceptible, and no evidence of any new lesions. As a reminder, I was first diagnosed with 10 lesions in my brain (for some reason they call them tumours elsewhere in your body…) so things have definitely moved in the right direction 🙂

Although I haven’t discussed the CT scan results with the doctor yet (it’s a different team from the brain doctors), they seem to indicate similar progress.

So going forward, more of the same, continuing the immunotherapy treatment once a month, and repeating the scans in three months as the next check on progress.

Meanwhile, we can only hope that spring weather comes sooner than the current forecasts!

 

 

 

 

A Very Belated Update

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As an unnamed peasant pleads in Monty Python and the Holy Grail “I’m not dead.” On the contrary, I’m doing very well but more on that later. (Monty Python fans will know that this is almost always misquoted as “I’m not dead yet” but clearly he does not say yet.)

My apologies for not providing an update sooner but as they say, sometimes life just gets in the way. And thank you to all those who have been asking about me or contacting me directly.

Apollo has been back with me since we said goodbye to Jazz and he’s been keeping me company and getting me out to walk rain or shine – actually he hates the rain LOL.On June 6th I attended a formal Regimental dinner at Casa Loma where I was presented with a Lifetime Achievement Award on behalf of the Regimental Senate and was honoured to share one of the readings which recognized the anniversary of D-Day.One of my sisters kindly invited me twice during the summer to her cottage on Grand Island in Balsalm Lake. One of those visits also included my other sisters and my parents (see photo above) which made for a great family gathering.I did have the opportunity to drop by the MHSTCI offices during the summer. It was a Monday however and pretty sparsely populated but it was nice to see some faces in person that I had not seen since pre-COVID.And whenever possible I’ve continued my Regimental Museum work by helping with research requests, processing archival material, updating the next 5 Year Strategic Plan, and even giving the odd tour.I’m also taking an online course on Collections Management through the Ontario Museum Association which should keep me busy through the end of November.And the Health Update On June 13th I was finally weaned off the steroid and able to restart treatment with just one of the two medications I’d been taking originally (and which was always the plan.) That continued every two weeks until September 21st.  All the most recent scans have continued to show tumours shrinking. And on the most recent brain MRI, 6 of the original 10 lesions in my brain were undetectable and the others had shrunk by almost half (AGAIN!) – clearly exciting news. As a result, the treatments have been scheduled for every 4 weeks which I hope will continue to show positive results while meaning two fewer visits to the hospital each month.Luckily the only two side effects I still seem to have are a lack of appetite and taste, and a lot more drowsiness than usual. Clearly, things could be a whole lot worse!  I even made my first visit to the barber since December as my hair has grown back enough to make it worthwhile – well almost LOL. And after the end of the steroid, the puffiness/swelling in my face and feet finally faded away and I look somewhat less like the Stay Puft Marshmallow Man :-)Clearly Autumn has arrived and I’m looking forward to Thanksgiving with some of my family in Brighton, and a day trip with my sisters to Elora the following weekend.Hoping everyone else also has a happy Thanksgiving and I’ll try my best not to take so long for the next update!

Out and About

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Previous Post: Discharged and Re-Diagnosed

My last post was pretty busy with medical updates and may not have been completely reflective of my day-to-day life.

I’ve mentioned previously that the doctor told me I’m not to be driving which was – and still is to some extent – a psychological blow that I’m still struggling with. I can certainly do all the essentials in my neighbourhood, via the subway (an 8-minute walk from my apartment), or using the very general UBER gift certificate I received from my work colleagues! But the option to jump in my car (my year old Corolla Hybrid!!) and go for a road trip to wherever on a nice day will probably only get more frustrating as the weather improves…

Niagara Roadtrip

So it was great when two of my sisters offered to take me on a road trip of my choosing on February 6th. Perhaps oddly to some, I chose Niagara Region as my choice. It turned out to be a beautiful cold but sunny day – perfect for a winter drive.  I offered my car to help save on gas and we headed off to Betty’s Restaurant in Chippawa – south-east of Niagara Falls – for lunch. The owner had gone to university with one of my sisters and we were treated to a great lunch in our own private dining area. I was also inspired by stories of his daughter who had died of cancer after being an enthusiastic and highly successful fundraiser for Princess Margaret Hospital where of course I’m receiving my treatment.

With my sister Lynn at Table Rock, Niagara Falls, February 2022.

After lunch, we headed back up the Niagara Parkway to Niagara Falls. I feel I need to provide a disclaimer about ever visiting the falls without bringing a visiting tourist along LOL. Certainly in the summer, I do my best to avoid the town completely. But a winter visit every few years reminds me of the magical side of the falls as the spray freezes on the railings and trees along the canyon sides. And despite the amazingly powerful flow of the Niagara River, ice forms around the falls as well and forms a new pair of clothes for the season. Like many of the other visitors – a fraction of those there in the summer – we stopped at Table Rock and while it was sunny but very cold, the views were spectacular.

While we didn’t have time or tickets to visit, I’d highly recommend visiting the recently renovated Niagara Power Station for a tour. Definitely on my to-do list!

“Explore the first major power plant on the Canadian side of the Niagara River with immersive exhibits, restored artifacts and interactive storytelling. And at night, feel the once-dormant power station come to life in a breathtaking interactive experience you’ll never forget.”

View looking down the Niagara River from Queenston Heights

Back in the car, we continued along the Niagara Parkway, passing the mostly closed Niagara Parks Commission attractions. As we approached Queenston Heights I reminded my (younger) sisters that we sometimes would bring my grandparents on a road trip and stop beside Brock’s Monument to have a picnic lunch. That of course led to my best efforts at concisely explaining the War of 1812, General Brock, and why he had a monument in the first place LOL.  As we descended the Parkway down to the village of Queenston, many of you will know the pull off lookout where it’s impossible to resist a photograph down the Niagara River toward Lake Ontario no matter the season 🙂 And of course, as we passed through Queenston, I couldn’t resist pointing out the Laura Secord Homestead.

As we continue along the Parkway, I’m always impressed with how  “park-like” and non-commercial the Niagara Parks Commission keeps the drive between Niagara Falls and Niagara on the Lake. Clearly, all the fruit stands and most of the wineries (luckily I’m not drinking these days anyway) were closed for the season but even in the busy summer, it’s a generally very peaceful drive.

We reached, Niagara on the Lake, found a parking space, and headed out up one side of the main street and back along the other. There were still piles of snow along the street and holiday decorations did give it a Disney-like atmosphere but as at the Falls, there were far fewer people walking the streets than any other season!  I did of course have a secret goal for visiting NOTL and that was to pick up a slab of maple cream fudge from one of a number of candy store options. 😉 Okay I ended up with TWO slabs but who knows when I’d get back to pick up more!

Fudge in hand, sightseeing complete, it was time to head back to Toronto with the sun still shining. Hard to thank my two sisters enough for taking the day to get me out and about!

Brighton

Luckily my sister Anne and her husband who live on the edge of downtown Toronto, have been renovating a home north of Belleville over the past several months and most Saturdays head down to do some work. This means they pass Brighton (about an hour and a half from Toronto) where my 89-year-old parents live.  On two occasions they have kindly picked me up and then dropped me in Brighton for the day, and collected me on their way home. Not only was it great to spend time with my parents but on one trip we stopped to pick up my dogs from my sister in Pickering for a cuddly doggy day trip.  On the other visit, the same sister surprised us by showing up in Brighton with the dogs again – oh yeah and with my niece LOL. Again great chances to just get a change of scenery from my quaint but quiet neighbourhood. Who knew I’d ever be this thankful for having three younger sisters?!? 😉

ROM

The first week of March I was feeling pretty good so decided to visit the Royal Ontario Museum’s special whale exhibit. I picked mid-day on a Friday so it was not particularly busy and it’s only four subway stops away. The exhibit was awesome (I’d expect no less from the ROM) and I also took in the special Wildlife Photography exhibit as well. I wrapped it all up with lunch in the basement deli which was also a good way to rest before heading home.

Next on to my do-to list is an embarrassingly late visit to the Aga Khan Museum in Don Mills 😦 But soon!!

Pub Dinners with Friends

On three occasions I joined some church friends for late Friday night pub dinners. Although I’ve messaged online with all these friends over the past few months, it was great to meet once again in person. The cancer treatments do make me immunocompromised so, despite the lifting of restrictions in Ontario, I did have t chat with my oncologist about what risk level I still have to consider.  The first night the pub was still under capacity restrictions and I felt comfortable – the next two after restrictions were lifted, not so much so I decided it made most sense not to join them for future dinners.

Meanwhile, I’m doing my best to get out and walk through the neighbourhood when the weather allows and certainly that should get easier as spring is finally sprung!

Next post: Dogs, Enzymes, and a Conspiracy Theorist

 

The Walk

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As many of you will know, I have two miniature schnauzers – Jazz now 12 and Apollo 11. They are sister and brother although obviously from different litters. Many of my work colleagues will remember them for their monthly Friday visits to the office many years ago.

Having to walk them three times a day, especially during COVID work from home (since March 2020!) has been a life saver in terms of getting some exercise. In the summer of 2020 Jazz was diagnosed with diabetes, which on its own is quite treatable with insulin shots twice a day. Unfortunately by the fall she had developed cataracts which are a common result of the diabetes, and lost a large amount of her sight.  That said she has been amazingly resilient and adaptable. It does mean however its a struggle to walk them together anymore and her own walks are slower and shorter as one might expect. She still knows where she wants to go though!

On Wednesday December 15th, I had finished walking Apollo around Bishop Strachan School, when I tripped on the sidewalk in front of Grace Church on the Hill, landing with 225 lbs on my left ribs – with just a little padding from my parka. Luckily Apollo scrambled out of the landing zone in time!  Now my past experiences with trips and falls in public, usually followed a very embarrassing look around to see who saw you fall and a quick as possible jump up to prove it was really nothing to worry about – I’m sure many of you can relate lol.  In this case though, I’d really knocked the wind out so just needed to catch my breath when a very well meaning gentleman rush over while talking on his cell phone and insisted on helping my up. In retrospect I imagine it was a rather comical scene – him chatting to me and his cell phone almost at the same time, me trying to catch my breath and grab Apollo’s leash (he was actually just sitting quite still watching me) and eventually accepting the help up.

We were only about 200 m from my apartment so figured I’d just walk it off and headed home. As the day wore on though, the pain increased in my left rib cage and clearly some pulled muscles in my lower back. I debated whether I should go to the ER for x-rays on my ribs – at the best of times our ERs are over crowded and while the OMICRON variant was just ramping up, the health care system has been stretched for almost two years at that point and I really didn’t want to be needlessly clogging up the ER.  Eventually though I hailed a cab and headed to the ER at Toronto General Hospital. Perhaps because it was later in the evening, it was not as busy as expected, and after a couple of hours and an x-ray, was told that my ribs were not broken or fractured. I was given a prescription for some Tylenol 2’s and sent on my way. I walked to the Queen’s Park subway station and headed home.

As I came out of St Clair West subway and regained cell reception, the was a message for me, saying they had also spotted a new “ovoid mass” in the right lower lobe of my lung and that further scans with CT were required. I was asked to come back the next day so they could do further assessments.  While clearly not a message I wanted to hear, there was really not enough information to start worrying about.

I was also relieved I’m made the decision to get the x-ray even though it would begin a journey I’d never really anticipated.

My Journey with Cancer

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I’ve decided I’d like to share my journey with cancer with those how may be interested in following it – particularly friends and work colleagues.

I’ve never really considered myself a writer per se, but I do think I have a knack of story telling (anyone who has heard my Monks with the Flower Shop “shaggy dog story” series may or may not agree!) but I’ll take a stab at it.  Of course there may be times during treatment when blogging is not high on my priority list but I’m sure you’ll understand.

If you’re joining this blog “in progress” then I suggest you start with the earliest post and read through the posts in chronological order. And if you’d liked to be notified when new posts are make, please feel free to subscribe for notifications emails in the subscription box to the left of this page.

John