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

 

Discharged and Re-Diagnosed

Posted in Diagnosis10 Comments

The morning of January 5th was my final brain radiation treatment, followed by a consultation to remind me of the long list of potential side effects. So far I’d been spared any – perhaps because of the high dose of steroids I was still taking – but apparently, they can still appear 3 or 4 months after the treatment.  Alopecia (hair loss) was just a matter of time though.

One of my “roommates” at Toronto Western was a short Italian Canadian gentleman whose English was minimal. What was pretty clear was that he very much disliked the hospital food and that he needed to go home so he could get “real” food to get healthy again. And it seemed like all the preparation was underway to send him home that day. However when the transport ambulance staff wheeled me back up to the floor, my regular bed was in the hallway, and we were told it would take a few moments to put things back in place.

It didn’t take much to surmise that some kind of “code” had been called, and my furniture pushed out of the way while efforts were – unsuccessfully – to revive him.  The mood throughout the rest of the afternoon was subdued as the family came to say goodbye and then staff removed his body to the hospital morgue.  Having watched him muttering as he shuffled with his walker to and from the washroom before I left for treatment, I was reminded of the frailty and unpredictability of life.

Discharged

The very eager and charming student doctor visited after lunch to discuss my discharge plans. He made it very clear they weren’t trying to kick me out but at the same time felt that I should be fine if I’d had enough of hospital life. And by this point I really had. My only concern was going home to my apartment alone in case side effects raised their ugly heads but since it hadn’t really been an issue so far, decided it would be worth taking the chance.

Because of the brain lesions and subsequent radiation, I was told that I was not allowed to drive for at least one year. Luckily though I live in Forest Hill Village, which consists of two blocks of commercial and retail, two stoplights north of St Clair West and Spadina. I’m literally a 100-metre walk from 6 banks, 3 coffee shops, a convenience store, a Kitchen Table grocery store, 2 drug stores, a book store, a What A Bagel, a Subway, a Freshii, 3 juice stores, and LCBO (not that I’m drinking these days), etc. You get the picture – pretty much anything I need without driving. Plus it’s only a 10-minute walk to the St Clair West subway station or streetcar. And I’ve been getting Sobey’s Voila grocery deliveries pretty much since we’ve been working from home so no concerns on that end either.

The only thing still to finalize was a schedule for weaning me off the steroid over the next few weeks, so when the doctors had finalized that, a sister picked me up and dropped me home, where of course it was nice to sleep in my own bed without being wakened at 6am for an ECG 🙂

Re-Diagnosed?

When the ER doctor spotted the tumour in the lung, he quite logically referred me to the “Lung” clinic at Princess Margaret and I’d had some inititial chats with Dr Liu on that team.  However by the time the biopsy results came back in the third week of January, the diagnosis was actually malignant melanoma, more commonly known of as a skin cancer. I clearly had trouble getting my head around the idea that a tumour in my lung wasn’t  lung cancer, but skin cancer….but eventually gave up and just rolled with it lol.

This meant I was now being transferred to the “Skin” clinic – which is conveniently co-located in the hospital with the lung clinic but with a completely different medical team. I had my first telephone consult with my new medical oncologist on January 19th, quickly followed by an in person consult the following Monday 24th.  The recommended treatment is a combination immunotherapy of Opdivo and Yervoy consisting of four cycles administered three weeks apart, followed by two cycles of just the Yervoy, two weeks apart, then finally a mainteance cycle every 4 weeks. For those not familiar with it, immunotherapy attempts to use medications to boost one’s own immune system to fight the cancer cells, whereas chemotherapy uses medications to destroy the cancer cells directly.  Of course both these medications come with a raft of potential side effects to watch out for!

Again things move pretty quickly with blood labs scheduled for January 31 and the first immunotherapy cycle for February 1. Later that day I’m also given a PET (Positron emission tomography) CT whole body scan. This produces a 3D images for a more accurate diagnosis.

The following week I developed a rash around my torso – one of those pesky side effects – but a steroid cream helped clear that up in about a week. The PET CT scan also showed something that may or may not have been anything on my colon, so a colonoscopy was scheduled for Valentines Day. Anyone who has ever had one, knows the challenge is not with the procedure but rather with the two days of preparation before when you need to cleanse until…well….you’re extremely clean. Basically two days of never getting far from the bathroom! But on the plus side, there was nothing to be found of concern.

The same week though I had developed double vision and because of the lateness in the day, my medical oncologist sent me to the TGH ER…again.  And after another CT brain scan, was proscribed the Dex steroid again and an MRI head scan scheduled at PMH the next day. By Friday I met with the “Brain” medical team (also conveniently in the same clinic and skin and lung LOL) where they explained a larger lesion in the are of the brain that deals with vision seemed to be bleeding which was causing the double vision. By now the steroid had reduced the swelling. They made clear that the total brain radiation would continue to have effect on these lesions for several more weeks and hopefully the blood would eventually be reabsorbed into the tumour itself.

One question still remained though and that was whether to proceed with the next cycle of immunotherapy (IT) scheduled for the following Tuesday. Steroid meds generally make the IT less effective. Luckily my brain oncologist and the medical oncologist were both present in the clinic and able to work on a plan to reduce the steroid without having to postpone the next cycle of IT. So far this time, no side effects!

Total Brain Radiation

Posted in Treatment9 Comments

My apologies for the delay since my last post however as flagged in my first post, unexpected circumstances pop up and slow things down.

Total Brain Radiation

So while we awaited the results of the lung tumour biopsy, I was also referred to a brain oncologist for a consultation.  Sister Sue (RN) had the day off and offered to meet me at Princess Margaret Hospital as a second pair of ears. The consultant’s advice was to start five consecutive days of reasonably low dose radiation in order to halt the growth of the ten or so small tumours in my brain. There were a variety of potential side effects flagged including losing my hair, but they did not seem to outweigh the option of doing nothing.

They offered to let me take my mask home.

With the call made to proceed, they quickly (this was Thursday!) set up the treatments to start on Saturday. First, however, they needed to create a mask moulded to my face to which would keep my head locked in place during the treatment. Luckily they were able to do this while we waited.

Now the bureaucratic part started LOL. I had been transported to TWH to PMH by a transfer ambulance while my sister met me there. I was dropped off in time for my 9:30 am consultation and by the time we completed everything it was just before noon. Reporting back to the transportation coordinator we were told my return was booked for 4:30 pm.  Nobody wants to sit around in a hospital doing nothing for another 4+ hours so my sister noted she was an RN and asked if she could just drive me the 10 MINUTE drive to TWH. Apparently, this was a highly unusual request and took almost 30 minutes to get a doctor’s approval/release…sigh.

Treatments

Not me!

The five treatments were virtually identical: transfer ambulance staff pick you up from TWH, and take you to the treatment room in the second basement level at PMH. (While their vehicles had little suspension, the attendants were all very friendly and attentive!) When the six-inch doors to the treatment room opened, the low lighting, soothing music, palm tree wallpaper, and fake window of a beach scene, were clearly meant to make this a relaxing experience lol.  You are transferred onto the radiation table, had your radiation mask locked to it, and then listened for the chimes to signal the count down as the technician slipped out and the door slid shut – the same Westminister chime used in the Old City Hall clock tower opposite our offices at 401 Bay St LOL

The machine whirs around your head for about ten minutes and then you’re done! And they pack you back up and return you to Toronto Western.

Sacrifice

One afternoon during these treatments, I was reading my book while a member of the housekeeping staff was changing the bedding on my roommate’s bed. When she was done, she asked if I wanted mine changed too and I gladly accepted.  I stood back out of the way as she quickly stripped the sheets and replaced them. The bottom sheet was fitted but the top sheet required what both my mother and the military had taught me were “hospital corners” and when the Filipino-born housekeeper started to make the folds, I chuckled and said out loud “ahhh…..hospital corners.”

She smiled and told me that 16 years ago when she first arrived in Canada, she had no idea what “hospital corners” were because in the Philipines she didn’t have a bed per see – just mats on the floor. She mentioned a son who was just 6 years old when she came to Canada and how it had taken 5 years to bring him over as well.  All before the era of instant text messaging and video calling. I couldn’t help but be moved by her story which she shared without any bitterness – if anything with appreciation.

Holidays at the Hospital

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After testing negative for COVID on Christmas Day, I was moved from my rather luxurious single isolation room to a semi-private room which, at least for the first night was just occupied by me – and by the window no less. And I was very pleased that the steroid I’d been prescribed, had relieved the “brain fog” I’d been suffering from for the previous few days.

The “modified holiday menu” that day included a chocolate yule log dessert which was quite edible.  I know everyone likes to dump on hospital food but for the 13 days I was in hospital I ate everything that was brought on my tray and only once was there mystery meat – which I ate anyway.  Perhaps I’m just not that picky – or perhaps I subscribe to the thinking that if I don’t have to make it myself, it can’t be all bad LOL!

The next day I received a “roommate” who highlighted for me the challenges staff face in caring for patients when their first (or perhaps even second) language is not English. This was actually the case with most of my fellow patients: Chinese (I couldn’t tell if it was Mandarin, Cantonese or another dialect), Greek, Italian, Portuguese. Not surprising of course considering the diversity of the city or that the hospital was barely a five-minute walk to Kensington Market. It was impressive to hear how staff would make every effort to be understood – made even more challenging by their need to wear masks and sometimes face shields. Sometimes this meant contacting an adult son or daughter by phone (visitors being restricted by then) to help with translation. Sometimes if the messaging was less critical (like “Mr X, you need to eat”) it meant using Google Translate from their phones. Sometimes it meant asking a fellow staff member who spoke the patient’s language to assist. And sometimes – usually a conversation with a doctor – staff could book a phone appointment with an official translator (through AT&T I think) who had training in medical terminology. In every case I was privy to (and curtains between beds are definitely not intended to be soundproof LOL) staff made every possible effort while being pleasant and respectful.

After a couple of nights in the semi-private room, I was moved to the 4th floor into a 4-bed ward. My OPS colleagues would probably ask why, when my health plan included semi-private coverage, I would not ask for one.  I knew OMICRON was ramping up and semis were needed for isolation until COVD tests came back. Within a couple more nights, I was moved to another 4-bed ward on the third floor so they could change the fourth into a COVID floor. It just seemed a bit selfish (and probably pointless) to even ask.

My sisters, while not allowed to visit, sent up care packages of clean underwear, socks, books, toiletries, and even some food. During the last move, my phone charger disappeared – and luckily they rushed a replacement to me or things would have got pretty tense! LOL

While patients weren’t required to wear masks in their room, they also weren’t allowed to leave their room unless going to or from an appointment. Either a hospital porter would arrive with a stretcher or a transfer ambulance team with their stretcher.  I was probably no more than 12 steps to the washroom but there was no way of getting any exercise like laps around the floor’s corridors that you might have done pre-COVID. I really wasn’t feeling bad so made sure to get dressed every day and usually sat in a chair beside the bed to read, listen to audiobooks, or watch tv or videos on my phone.

Biopsy

The next steps were to schedule a biopsy so they could confirm the type of cancer. The obvious culprit was lung cancer since that was the largest tumour so for this, I was under the care of a thoracic (i.e. lung) oncologist, Dr. Liu at Princess Margaret, but the procedure itself was done at Toronto Western. After more scans and x-rays, I was given a local anesthetic. The biopsy itself consists of taking numerous “core samples” of the tumour using special needles while watching under some high-resolution cameras to ensure accuracy. I don’t recall the whole procedure taking more than 30-45 minutes and was painless. Because of the holidays and staff shortages due to COVID, it was made clear that the results may take 10-14 days which was longer than usual.

Back in the ward, and after various follow-up x-rays, a small pneumothorax (or collapse of a portion of the lung) was identified. Luckily it was small enough that supplemental oxygen was all that was prescribed. It did mean some further reduction of mobility but after several days, it disappeared and the oxygen was no longer required.

UHN Portal

Any of you familiar with any of the University Health Network Hospitals (Toronto General, Toronto Western, Princess Margaret, and Toronto Rehab) will probably also be familiar with the UHN Portal. It’s a one-stop website that contains all your appointments and all your test results, and can also send you email notifications when new entries are made. So those of us with a smartphone (and English as our first language…) would get the information at the same time as the attending doctor – and often hours before they were actually able to tell you in person lol.  It’s true that some of the information definitely used obscure (at least to a layman) medical terminology but one could generally get the gist of it. For example, it was clear that over several x-rays of my lung post-biopsy, the pneumothorax was shrinking and eventually undetectable.

The “clinic notes” were the most amusing though. They all began:

Mr. Stephens is a pleasant 64-year-old gentleman diagnosed recently with...

I mean I think I was very pleasant with the doctors and was initially flattered. After the third oncologist used the same wording, I started to wonder what description they’d use for a grumpy patient who may or may not have behaved very gentlemanly LOL.

Now we just had to wait for the results of the biopsy and various related blood tests. And arrange a consultation with a neuro (i.e. brain) oncologist.

NEXT UP: Total Brain Radiation

The Talk

Posted in Diagnosis8 Comments

So as requested, I returned to the Emergency Room at Toronto General Hospital the next day. The ER was obviously busier during the day but eventually, I was taken to an internal waiting room designed I suppose for patients that didn’t necessarily require a bed.  There were perhaps a dozen chairs all separated by plexiglass shields and a TV in the corner quietly playing CP24.  Clearly, this was a case when I should have brought my earbuds!

After several hours and a CT scan, an ER doctor called me into the hallway to tell me what they had found. “I’m sorry” he started without looking me in the eye, “besides a tumour in your lung, and at least one in a lymph node, the scans show several smaller lesions in your brain”.  Inside my head I’m thinking, wow that escalated quickly.

He quickly moves on. “I’m referring you to the Lung RAMP program [Lung Cancer Rapid Assessment and Management Program] at Princess Margaret Hospital. If you don’t hear from someone about an appointment within a week, call this number.” He then hands me a pink copy of his mostly illegible notes with a phone number, and that was pretty much that.  As he walked away I couldn’t help but notice how tired he looked.

As I’m trying to process all this, I find my way out of the ER and walk the subway on the opposite corner of the large hospital complex. Even for someone who really doesn’t know much about cancer, the fact that it had spread to various parts of my body, certainly didn’t sound good. On the other hand, I had no idea about treatments or survival rates, and I had no obvious symptoms of anything being awry. I guess I just decided to adopt a neutral mindset until I knew more.

I have three younger sisters, Anne, Lynn, and Sue. Each of them has had or is still dealing with their own cancer experiences with members of their respective families. In addition, Sue is a Registered Nurse working in a hospital and while she doesn’t deal with cancer patients per se, she is certainly helpful when it comes to questions to ask the various doctors. I shared what news I had at this point with each of them. At some point, I also told my 88 and 89-year-old parents who still live in the family home, 160km east of Toronto, built by my great-great-grandfather circa 1869. As I expected, they were all extremely supportive.

I did receive a telephone appointment for the PMH RAMP clinic for the following week. I kept in touch with my sisters too however they were increasingly concerned that what might have been originally attributed to shock was something more serious. I was finding it harder to finish thoughts and sentences (yes more than usual lol) – what is often referred to as “brain fog,” and by December 24th they decided an “intervention” was required. Sue let me know she was coming to pick me (and the dogs) up and dropping me at the Toronto Western Hospital (also part of the University Hospital Network or UHN) and taking the dogs back to her place. I didn’t argue as I knew things weren’t right and did my best to pull together all the things she would need for the dogs.

I was able to check myself into the ER, and after the usual wait was assigned a cubicle and all the checks from nurses and doctors. More scans revealed edema around the brain masses that were the most likely cause of the brain fog and so prescribed a strong steroid to control that problem. By this time my other sister Anne had somehow managed to talk her way into the ER to hang out with me and was relieved when they decided to admit me in the early morning hours of Christmas Day. I vaguely recall being moved to a single room with an anteroom, a nurse wearing all the PPE you could wear taking a COVID 19 swab, then drifting off to sleep.

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