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.
My apologies again for the dearth of updates, but thankfully, my journey with cancer has become rather boring! My CT scans have gone from every three months to four, and my brain MRIs from every three months to every six – both signs that my immunotherapy treatment has been very effective. To recap, I started with 13 tumours/lesions – 10 in the brain, one in a lymph node, one in an adrenal gland, and one in a lung. The one in my lung is still visible but doctors think it is inactive. The rest are just scar tissue. Can’t complain about that result. I’m continuing monthly treatment at Princess Margaret Hospital, which consists of a few hours for blood tests and review by the oncologist, and a 45-minute IV treatment the next day, and of course, periodic CTs and MRIs – definitely not a hardship! Just have to keep working to recover my stamina as it’s notably lacking.
Recently, my oncologist reported that recent studies indicate people (like me) who have responded well to the treatment have a 90% chance of living 10 years. When you factor in that this treatment is relatively new, with limited long-term data, I’m definitely going to assume this is a minimum survival rate. LOL.
Family Update
Mary Eleanor Stephens 1933-2025
And I’m hoping I’ve inherited my parents’ long-life genes. My mother passed away this past New Year’s Eve, aged 91. While she passed peacefully, her last few years were challenged by dementia and the fragility of her body. She insisted she no longer wanted a funeral, as none of her friends were still alive to come. I had to gently remind her that funerals weren’t really FOR her – they were ABOUT her, but they were FOR us. She begrudgingly agreed, so we held a “celebration of life” reception attended by about 75 people, including the friend who set my parents up on a blind date, 70 years before!
John Franklin Stephens
My father had been living on his own (while my mother was in a nursing home) in the rather large “ancestral” home built by my great-great-grandfather circa 1869. Being a rather social type, he decided to move into a year-old seniors home just up the road in Brighton. He describes it like being on a cruise ship without a pool, and it IS very nice. And at 92, he continues to do all kinds of online research for and about people. His latest project is about the people who owned the farm on which the seniors home was built – Russian aristocrats who managed to escape after the 1917 revolution and had various adventures before settling down in Brighton.
The Valleau House, built c. 1869 by my great-great-grandfather, Cornelius Valleau, descendant of Loyalists who settled Adolphustown in 1784.
New Family Member
Apollo (left) and Zeus (right) in one of the rare moments when they weren’t wrestling!
I’m pleased to announce that Apollo now has (a sometimes annoying) little brother appropriately named Zeus 😉 That said, I’m not quite sure what made me think getting a new puppy was a good idea… Zeus is now 6 months old, and Apollo will be 14 years old in August. Despite the fact that one just wants to play (whenever he’s not sleeping) and the other is so over playing with anyone, I think they might be starting to work out how to survive together (the photo at right and the one at the top of this post are definitely misleading!) Some of you will remember Apollo (who, as a pupp,y looked very much like Zeus) coming into our Ministry of Culture office and occasionally marking his territory when he wasn’t sleeping under my desk.
Not sure if it’s a pro or con, but at this point, Zeus is a little too chaotic to walk together with Apollo, which means twice as many walks for me – good for building stamina, I guess, but in this heat not the most pleasant undertaking…
The “Peoples” of Forest Hill Village
And totally not related to my cancer journey – as many of you know, I live in a four-story walk-up in Forest Hill Village on Spadina north of St Clair. Luckily, I’m on the lower level, so only a few steps to worry about. For my heritage related friends, the building, like the others around it, was built in the 1920s when Forest Hill was still a stand-alone village outside of the City of Toronto. And while hundreds of people walk over it every week, there is a manhole cover in the sidewalk near my building stamped 1927! I’m already planning a birthday party in 2027 LOL.
Since I spend a lot of time walking dogs (and some occasional shopping) in my neighbourhood, I usually pass lots of people depending on the time of day and while waiting for them to do their business (the dogs, not the people!) I have lots of time to observe them (the people, not the dogs!) While out for dinner with neighbours last week, we agreed that many can be grouped in certain categories.
The Housewives of Forest Hill (HOFH) – These are mostly younger or trying to stay young, women in tight-fitting workout clothing, coming to or going from the nearby gym to their giant SUVs, most often with earbuds in, listening to…well, who knows. They rarely make eye contact and really only interact with others of their ilk. Apollo and I passed two HOFH just the other day and overheard one telling the other, “We’ve been planning our honeymoon for Australia and Fiji in December.” Maybe I’m just jealous (not really!)
Students – Bishop Strachan School is at the end of my block, and Upper Canada College is a few blocks further. That means three times a day, there are “hordes” of students walking to or from the subway or into the Village for lunch. They are usually loud and a bit rambunctious but generally polite, and at least they aren’t stealing hubcaps or cars or worse 😉 Of course, it’s much more peaceful this time of year with just a few involved with both schools’ summer camp programs.
School Staff – Clearly, there are lots of teachers and admin staff also coming to and fro from both BSS and UCC, either in the morning, afternoon, or just to grab a coffee in the village. When I was still working, I’d often pass them in the opposite direction on my way to or from the subway. Many have learned the dogs’ names and stop to acknowledge them (just the dogs, of course.) Several years ago, one of the teachers invited Jazz and Apollo to her retirement party in the staff lounge. I tagged along just, well…because. I watched some of the younger staff get married and now drop their kid(s) off at the daycare across the street.
Daycare Parents – There are two daycares located at the end of my block and on almost all my dog walk routes. These parents are usually preoccupied with getting their kiddies out of their car seats and into the daycare – or, of course, the reverse in the afternoons. They are pleasant enough, although they usually are only chatting with other daycare parents. The most we get is “Oh look at the puppy – isn’t he cute?” I smile at them, but clearly I’m just the supporting cast…
Domestic Staff – The multi-million dollar homes that start at the end of my block employ plenty of nannies and housekeepers who are almost exclusively Filipino. (The short bus route from St Clair West subway up Spadina to Eglinton and back is often referred to as the “nannie express.”) They are much friendlier than the HOFH, usually smiling and often saying good morning. One has been saying hello for probably 15 years or more and knows my previous and current dogs’ names. There are also school cleaning staff we pass on that last walk on the night as they head to the subway – again always pleasant even at the end of a late shift. I sometimes feel they are invisible, particularly to the HOFH.
Neighbours with Dogs – Anyone who has dogs knows that you often end up getting to “know” other dog owners in your neighbourhood, and I’m no exception. That’s assuming your dogs get along – or at least won’t attack each other while you’re chatting away and sharing neighbourhood gossip (I admit it!) Sometimes it’s just a pleasant wave to the other side of the street if your dogs don’t play nicely together. And their is sharing both the sadness of losing a pet, and the joy of getting a new one.
The Plurality – The largest “group” are just those out for a walk or heading into the Village for refreshments or ice cream. Several call my dogs by name. At the minimum, it’s a smile and a good morning. They are usually older (I’ll leave that undefined) and I’d guess often retired. They always make the sometimes tedious walks a more pleasant experience.
There are a few people who don’t fall into any of the above, obviously. During the school year, there is a friendly crossing guard in front of BSS who always says hi to whichever dog I have at the time and unsuccessfully tried to give my picky Apollo a treat the first few times we met. He also shared that he recently downloaded an app to identify the birds in the area by their songs, which I subsequently downloaded and love (“Merlin” from Cornell University.)
There is the “collector” who weekly wheels his shopping cart on an amazingly long route to collect beer cans and wine bottles to return for the deposits. He’s a pleasant fellow who is also mostly invisible in such an affluent neighbourhood. I always make of point of saying good morning.
Lately, there is the Bank of Montreal advisor (we have FIVE banks in two Village blocks!) whose office window is level with the sidewalk and Zeus often sits looking at him when he’s at his desk, and he waves back! We’ve even gone in to meet him in person and he’ll stop to say hi on his way to and from work.
They often say that Toronto is a city of villages, and I think that’s true. But any village is also made up of people – bankers or shopkeepers, teachers and pharmacists who know you by name (sadly LOL!) People just living their lives, and those who might well be labelled as characters. I’d probably be considered an extrovert (although I might argue that it’s situational), but isn’t life richer for engaging in your village, wherever it is?
Last Word
Not enhanced!
When I’m not walking dogs or philosophizing about villagers, I’m still serving as Director and Archivist of The Queen’s Own Rifles of Canada’s Regimental Museum and Archive. Working on updating museum policies, responding to research requests, and adding names of soldiers to our public-facing Collections Database (with 7,100 names so far!) And spending time in Brighton, which is a short drive to the attractions of Prince Edward County (friends own The Old Third Winery with an awesome past bar if you’re ever down that way) and buying lottery tickets for that elusive dream of becoming a millionaire.
Thank you to everyone for your support during my journey, and I wish you all a safe and happy summer!
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!
I’m not dead yet! (Yes the usual Monty Python reference although the correct quote from the film is simply “I’m not dead.”) Regardless, I can’t believe how long it’s been since I last posted.
In fact, I’m doing pretty well after almost 2 1/2 years of treatment. Recent CT and MRI scans have identified only minor specs of the 10 lesions I had originally, the tumours in my lung and adrenal gland no longer show up, and the one in my lymph node continues to shrink. There is a new something that shows up in my lymph node but it is deemed “indeterminate” i.e. they can’t say if it is cancer or not but the doctors don’t seem concerned at this point and will just keep an eye on it. Another set of CT scans in 3 months and another MRI in 4 months (since I’m doing so well lol.)
My once-a-month immunotherapy treatment will continue to the end of 2024 at least and then we’ll reassess whether there is any need to continue. The treatment side effects continue to be minor – dry mouth, an occasional rash, fatigue and muscle degradation. At my request, I was referred to a kinesiologist who has given me an exercise program to combat the muscle issue.
I was struck the other day when another well-meaning friend/colleague/acquaintance told me I was looking really good. I realize there was a point when I wasn’t looking so great, my face all ballooned up because of steroids and having lost all my hair from the initial radiation but still, nobody ever said “you’re looking really good” BEFORE I got cancer…LOL. Does that count as a silver lining?? I guess one just takes it where one can get it 😉
When I’m at one of my numerous hospital visits, I see or pass dozens of others coming, going, or in many cases waiting, and I wonder what their stories are, what their prognoses are, and who the people are there supporting them – spouses, children, parents, friends? Many are not in good shape – far worse than I’ve been in – and I’m reminded to be thankful for my excellent care at Princess Margaret’s Cancer Hospital and through no actions of my own, have responded well to the treatment – at least to date, and for the support of my friends and family. As May is coming up and it is cancer awareness month, I’d invite you to donate to the Princess Margaret Hospital Foundation.
I recently had another birthday (celebrated by dinner with friends and then attending my 4th performance over the years of my favourite musical Les Mis) and I realized how much my views on birthdays have…evolved. I suppose I looked forward to them when I was a wee tad (OK I was probably never called “wee”), then as a teenager, you really just want to be older – old enough to drive, to drink, become an “adult.” For the next couple of decades, birthdays are “all right” I guess – perhaps an excuse for a party but not really all that exciting. Then there comes a stage where birthdays just mark getting older and older and you’d just be happy not to make a big deal of them. AND they seem to come around sooner and sooner – how’s that possible? 🙂 I’m lucky enough to still have both parents alive at 91 years of age for which I’m very grateful, but as many of you will know, growing old isn’t always pretty or easy. Weakening bodies mean health challenges can pile on top of one another and we are blessed if we can keep our minds sharp. But after a life-threatening diagnosis, one can’t help but appreciate birthdays again. It reminds you to be grateful and the importance of making the most of each day. None of us know when our time will come but I think for most of our lives we take that for granted – until we can’t ignore it. I doubt I’ll make it to 91 but if not I need to keep reminding myself to live today as if it is my last!
On a less deep note, I’m continuing my volunteer work with The Queen’s Own Rifles of Canada Regimental Museum and Archive which keeps me busy – mostly from home. (Side note today is the 164th Regimental birthday of Canada’s oldest and finest continuously serving rifle regiment – CHEERS!)
I very much appreciate keeping in touch with former work colleagues (and them keeping in touch with me) and have even dropped by their offices from time-to-time to catch up. That said, I can’t say I’m sorry to be retired!!
I recently attended the Canadian Museum Conference in Niagara Falls, and this past week has been busier than usual: on Sunday a memorial service for a friend who passed away some months ago, on Monday blood work and oncologist appointments; on Tuesday a chiropractor appointment, the immunotherapy treatment, and a co-chairing the Toronto Military Curators network meeting in the evening; on Wednesday grave marker dedications at two cemeteries for recently discovered Fenian Raid casualties (the photo above); and Thursday evening at Casa Loma reorganizing the archive storage situation; today was fairly quiet but Saturday is a Regimental Senate meeting. And of course, Apollo taking me for a walk three times a day. No excuse to be bored!!
Hopefully, it won’t be several months before I post again!
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 🙂
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!
So December 15th is the one-year anniversary of my tripping while walking the dog which gave me cancer.
That’s my joke at least….sort of LOL. As you may recall I DID trip while walking the dog and landed on my ribs. When I went to the ER, they did an x-ray and said “your ribs are fine but you have a tumour in your lung.” And of course, after going back the next day for more scans, the cancer was in more than just my lung.
Out of curiosity, a few weeks ago, I asked my oncologist if he could estimate how long I had cancer before being diagnosed. I didn’t expect much from him – and that’s about what I got hahaha. He said there were too many variables and so much they still didn’t know about melanoma. It could have been a few months, but equally, it might have been in my body for a few years – essentially dormant – until something triggered it to grow and spread. I mean it really doesn’t matter at this point but I hoped to understand a bit more about what I was dealing with and I suppose I did.
On another note, I had my second haircut since my hair has grown back -for whatever that’s worth 😛
Medical Update
I don’t think I could be more vaccinated right now – my pneumonia vaccine, my fifth COVID vaccine, and my flu shot (and yes I had the shingles vaccine a few years ago) – so I’m feeling more confident in socializing a bit more than I have been. That said I’m spending Christmas with my parents in Brighton (just celebrated my Dad’s 90th birthday!!) so I’ll probably hold off on all the partying until the new year just to be on the safe side.
The results of an MRI and a couple of CT scans came back this week and again the results were pretty positive. Several tumours shrunk again, some no longer showed up, and I think one was no change. Two had slight increases (like 0.2 cm) but the doctors said that happens and weren’t concerned at this point. My immunotherapy treatments have been reduced from every two weeks to every four which I’m quite happy with as long as the results are still positive 🙂 The next treatment is tomorrow and then I’m good til the new year.
And speaking of next year, I’m wishing you all very happy holidays, a happy new year, and my thanks for all your support over the past 12 months!
Although I haven’t been working since December because of my health “challenges”, today is my first day of official retirement, and I guess that’s the door closing. I don’t feel like it’s slamming though – perhaps because of working from home for almost two years – and not working at all for 10 months! There are many things I won’t miss of course – many of you referred to them in the retirement card I received today. That said, I’m debating what to call a book I’d like to write now that I’m retired (although I probably won’t LOL). Some possible titles include:
“Yes, there really are stupid questions!”
“Why exactly is this so urgent?”
“How to prepare materials you’re not sure anyone will actually read.”
“Why could anyone possibly need 10 pages of background materials for a 15-minute meeting they haven’t yet decided to attend?” (<Cough> AMO/ROMA)
I’m leaning toward the first one but just wish I’d kept a list LOL.
On the plus side though, are the (almost) universally talented, dedicated and pleasant colleagues I had the pleasure of working with over my 17+ years with the OPS. I particularly appreciated the fact that they didn’t blame me (the ultimate middleman) for the constant requests to respond to questions or provide materials at the very last minute! MHSTCI (and its various configurations) has some exceptionally talented members working for the benefit of the people of Ontario. I learned a lot about many subjects the ministry dealt with which was always handy for making small talk at cocktail parties! It’s certainly my colleagues I will miss the most.
Door Opening
What next? Who knows! Dealing with my health is certainly the first priority but that continues to look positive. At some point – perhaps next spring or summer – I have a few travel plans to check off my bucket list depending on how the pandemic ebbs and flows.
After 10+ years as Curator, I’ll continue my volunteering for The Queen’s Own Rifles of Canada Regimental Museum and Archive although in a slightly more administrative role as Director and Acting Archivist. Anyone in the museum and archives world knows that processing archival donations is a very different kettle of fish from cataloging museum donations, and I’m mostly enjoying the challenge of wrapping my head around those differences.
I do have some more serious publishing projects that have been hanging over my head for some time. Since our transcription project in 2014, I’ve been very slowly working toward publishing the First World War war diaries of the 3rd Battalion, Canadian Expeditionary Force. This is one of the Battalions that the QOR perpetuates. I’m part way there but one thing after another keeps taking priority.
The other is creating for my own benefit, a photo book from my 2019 trip to Belgium and France for the 75th Anniversary of D-Day, followed by my 3,000 km drive around France. I’ve started but again…
And then there is more purging of closets and wardrobes and drawers and file cabinets. Hmmmm…maybe I should build a SharePoint site to keep track of these projects?? LOL
On Another Note
Unfortunately because of potential COVID exposures, I didn’t make it to Brighton to spend Thanksgiving with my parents. But all was not lost (certainly not any lbs!) as I got to have dinner with one of my sisters and her family in Pickering – with lots of leftovers to bring home!
Siblings at West Montrose Cover Bridge Oct 2022
And on October 22nd (that beautiful sunny and 20C day) my three sisters and I took a road trip to Wellington County. Our first stop was in Crosshill where some of our ancestors had lived, followed by Hawkesville which was actually founded by our Hawkes ancestors.
One of the latter was a sister of Samuel Lount. For those local history buffs out there, 10 points if you can tell us (in the comments below and preferably WITHOUT the help of Google) what Lount is known for; 15 points if you can tell us his fate; and 25 points if you can tell us what arrived a few weeks later. (There is no prize actually but humour me!) I’ll provide or confirm the answers in my next post.
We then stopped by the West Montrose covered bridge (which is a designated heritage structure under the OHA) where we had our photo taken by a delightful Canadian Armed Forces veteran.
Then it was off to Elora and its spectacular gorge. Elora was packed. I imagine this was because people thought it it could be the last nice weekend of the fall, and because the colours were pretty much at their peak. A great lunch on the Handsome Devil Bistro patio (we had Apollo with us) and a pleasant wander through the rest of the village and made every opportunity for a photo op LOL
Then it was off to Fergus on the way home – clearly, those Scottish mason settlers knew what they were doing! One last spectacular view of the colours as we descended County Rd 25 from Acton down to the 401 where we then joined the stop-and-go traffic for longer than any of us expected. A great day out and thanks to my sisters for spending the day with me.
Lastly, I have more scans at the end of the month and hopefully, in December the brain oncologist will tell me I’m allowed to drive again. It’s not the end of the world but depending on others for rides is still not something I’m used to…
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 UpdateOn 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!
You gotta love steroids…..sigh. They do have a job to do but they also come with side effects – in particular moon face. You know that puffy marshmallow face and neck look? And swollen feet and ankles. Even swollen fingers. I mean none of that is painful – just a bit awkward I suppose and since I’m still wearing a mask most of the time, the moon face isn’t all that obvious. There’s also increasing fatigue (lots of naps during the day) and weakening of muscle which I am struggling with a bit.
That all said, the steroid was working to reduce the liver enzymes – until it wasn’t LOL. So they upped the dose over the Easter weekend (I took that over being re-admitted to hospital!) and added another medication to “boost” the steroid. The last blood lab work showed the enzymes coming down again so I guess all that puffiness is worth it. And anyone who has been on steroids knows you can’t just quit them cold turkey so they are now working to wean me off them. That will probably still take several weeks and then we can think about restarting some immunotherapy treatments again 🙂
I was determined not to let that all get in the way of the plans we’d made. Saturday of the Easter weekend my sisters and I all went to Brighton for Easter dinner with my parents (and a spice cake for my birthday on Monday.) Luckily they chose to just put 1 and not 65 candles on the cake!!
High Tea
Sunday was much more formal as I treated my sisters to High Tea at Casa Loma as a thank you for all their help and support. It was certainly the classiest meal I’ve had in a long time!!
This slideshow requires JavaScript.
Honoured to be Honoured
The following Sunday (which had the best weather we’d seen in 2022 so far), the Lieutenant Governor of Ontario arrived at the front step of my apartment building to present me with the Sovereign’s Medal for Volunteers on behalf of the Governor-General of Canada.
“For nearly a decade, John Stephens has been the Curator responsible for the oversight of The Queen’s Own Rifles of Canada Regimental Museum and Archive. His years of dedication have promoted veteran outreach by assisting members in researching their relatives who have served and enabled the regiment to share their stories with the public.”
The nomination was made by members of my museum team (in 2019 no less) and of course this recognition needs to be shared with our whole museum volunteer team, the Museum Board, the QOR Trust Fund, the Regimental Senate, and the senior leadership teams of the regiment over the past 10 years. I was pleased that many of these members were able to attend the ceremony along with friends, family and some former work colleagues.
Saying Goodbye
As I’ve mentioned before my 12-year-old Schnauzer Jazz had been staying with her brother Apollo with my sister’s family in Pickering since I first went into the hospital on Christmas Eve. She was diagnosed with diabetes a couple of years ago which I’ve been treating with twice-daily insulin shots. She eventually developed cataracts which severely limited her sight but she seem to adapt well.
Cuddle time
Recently however she wasn’t eating well or sometimes not at all, which made it difficult to control her glucose levels. We decided she needed to see the vet which is near my place. After two days and nights at the clinic on IV hydration and some special feeding, she seemed to be doing much better. She came back to my place for the weekend and was clearly doing better on Saturday. On the Sunday of the medal ceremony though she was eating little and throwing up what she did which continued on Monday. When we arrived at our next vet appointment on Tuesday, they had the results of blood tests taken the previous week which confirmed she now had pancreatitis and extremely high levels of liver and kidney enzymes (to which I could relate!) And because of the difficulties in controlling her insulin levels, she was also in or at least approaching diabetic ketoacidosis.
Unfortunately, the veterinarian had nothing to offer as treatment, and only another pet owner can really appreciate the decision with which I was left. And while there really wasn’t any decision, it was still one of the hardest to make. We had some cuddle time (above) while the vet finished some other surgery, and I very much appreciated the efforts of the Wychwood Animal clinic to make this difficult time as comfortable as possible.
I first met Jazz when she was two days old. She was born on December 30 in a litter from my friend Phil’s dogs Lucky and Lilo, and I was there for a New Year’s eve party. They were all black and barely had their eyes open and fit nicely into one hand.
Five months later I’d been convinced that I should get a dog so went over to Phil’s to check out the puppies that hadn’t been adopted yet. As I sat on the couch, Jazz jumped up, and circled around a few times as dogs do, before curling up and going to sleep on my lap. Another decision that was far easier to make as Jazz had obviously chosen me!
She was the sweetest dog and we had 12 great years together.
For the three weeks after my second immunology treatment, things were going pretty well. With few side effects, my dog-sitting sister and I decided I could probably try having my furry friends back home. For the past two months I’d wanted to be able to focus on my own health (as a reminder, Jazz has diabetes which requires insulin shots twice a day and has cataracts making her almost blind.) But of course, I missed them so on Wednesday evening, March 17th they were chauffeured back home from Pickering. They were certainly as excited to see/smell me as I was to have them back for cuddles!
This was the day after treatment number 3 and on Friday I went for the usual blood lab check and doctor consultation to make sure everything was as it should be. But of course, it wasn’t!
“I’m sorry to tell you that your liver enzymes have skyrocketed and we’ll need to admit you to the hospital immediately so we can give you intravenous steroids to start bringing the enzymes down. I’ll be right back but I’m afraid you’ll need to make arrangements for your dogs again.”
I’d mentioned the dogs coming home to him at my Monday appointment earlier in the week and he remembered LOL. Luckily Sue made it clear that if for any reason keeping them was an issue, they’d be happy to have them back so after less than 48 hours they were back in Pickering and I’d been admitted as an inpatient to Toronto General. I did get taken from Princess Margaret to TGH via the tunnel under University Ave which was kinda cool.
Looking East from my TGH room at night.
I didn’t actually have any real side effects at this point so after getting pumped with the steroid each morning, I’d go for a walk in the afternoon if the weather was nice. One day around hospital row, another day up to the University of Toronto, and another down to my old – and no longer going to be new – office at 400 University Avenue. There Emma, Ian and some others were struggling to get the space ready for the division’s “return to work” future. Was certainly nice to chat with some familiar faces.
Being able to get out and about also allowed me to get some respite from “conspiracy theorist guy” (CTG). In a room that eventually had five beds filled (things were still pretty tight in the hospital for both beds and staff) I was lucky enough to get a window that even had a reasonable view. But of course, the beds are only separated by thin curtains and for four of the five days I was there, CTG was on his phone explaining global child sacrifices being made by the world’s elite, Trudeau wanting to murder everyone, Hilary Clinton’s pedophile ring in the basement of a pizza place, chips in the vaccine and all the forces against him in making some hemp business succeed.
Oh and all the people that were helping him cure his cancer with treatments that were clearly outside anything that was generally accepted by the medical world at the moment. I mean I suppose it’s not completely impossible my oncologists were purposely leading me astray because of big pharma…but I really wasn’t convinced. That’s despite listening to him about 18 hours a day on his cell phone – even my earbuds couldn’t block him out 😦
When they figured I was ready to just take an oral dose of the steroid, they were ready to send me home but on my last day, they also scheduled a CT scan. The results were pretty positive. All the tumours and lesions had shrunk – some as much as 50% – so it proved that so far at least, the radiation and three combination immunotherapy doses had been doing what they were supposed to. And although I have to be weaned off the steroid before we can do any more treatments, the earlier treatments will continue to have an effect on the cancer cells while that happens. So getting that news was definitely worth 4 days of listening to CTG.
The steroid is slowly bringing down the liver enzymes but the side effects of fatigue and weakness and swollen feet are definitely more pronounced. So they gave me another med to counter the side effects of the steroid – we’ll see how that works out <chuckle>. And now that the weather is nicer – well at least above freezing most days – it’s harder to find an excuse NOT to go for walk I guess LOL.
Lastly, this past weekend my sisters were again kind enough to both take me to and from Brighton to visit my parents. They were going anyway but still had to go out of their way to my place. And the dogs went too so I did get another two days of cuddle therapy which can never be a bad thing! And when I got dropped off at home again, and as much as they are very well cared for by my sister’s family, I’m pretty sure they wanted to come in and stay with me 😉
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.
Easter and Birthday Dinner
Sooner or Later 