And the Last Sense…

In previous posts I’ve covered off memories of sounds, tastes, smells and the experience of touch in Toronto. Last one, and the hardest – sights. A friend called me out yesterday on dragging my heels on putting this post out, she was absolutely right. Although written weeks ago, I’m having a bit of difficulty in accepting that I’ll never see these sights for myself again. Perhaps a bit ironic having been a photographer, but the reality is that nothing compares to being there – and taking in what the other four senses are being offered at the same time.

Seeing steam rise from the man hole covers downtown. The best angle I’d ever found was looking westward at the Flatiron Building on Wellington Street on a cold winter morning.

The tulips at Edwards Gardens. Visiting was an annual ritual when I was a child, I rarely let a year go by without seeing the stunning landscape when the tulips were in bloom.

The waters of Lake Ontario lapping at the pier of the Leuty Lifeguard Station in the Beaches. Watching ships crawl across the horizon, wondering what distance port they were heading to.

The crowd doing the wave at a Blue Jays game. It wasn’t until after my corporate career that I had the chance to participate, I’d always been with clients in the boxes. Cushy, but nowhere near as fun!

Seeing my name scrawled on a section of concrete that was soon after lifted by a helicopter (named Olga) to the top of the CN Tower. Yes, I’m that old.

I’m going to need some help with this one. Before the CN Tower was built, it was possible to visit the top floor of one of the downtown bank buildings for the best view of the city possible at the time. The viewing area had those big binocular viewers around the perimeter. Does anyone remember the bank? Or how much it cost to go up there?

Canada geese at the lakefront. Anywhere along the lakefront. I wouldn’t be surprised to hear that geese outnumber human residents of Toronto. Just watch where you step!

Dragon boat teams practising on the lake, my favourite vantage point would be near Cherry Beach. Lots of interesting things to be seen over the years at Cherry Beach, not all of them legal!

The view of  Via and Go trains waiting at the platforms at Union Station. I don’t know if it’s since been renovated, the terminal of the station used to take my breath away when a sunbeam would shine a beautiful jumble of light and dark on the polished floor.

The fall colours at Sunnybrook/Wilket Creek/Serena Gundy Parks. The colours seemed more vibrant, the scent of wet leaves making it all that more appealing. I would have loved to have travelled through just once on horseback, I was quite envious when a rider would trot by.

The array of fresh fruits, vegetables, bread, meats and seafood at St. Lawrence Market. Suzanna and I made it a mission to try something new every time we visited. I love that she’ll try any new food at least once!

The wonky multilevel parking lot across from Queen’s Quay. How on earth did it ever manage to get built so unevenly? On my last trip to Toronto last year I noticed that it’s been replaced, it must have been a rogue skateboarder’s heaven before it came down.

The scuff marks on the hulls of the Toronto Island ferries, where they’d grazed against the monster truck tires that were placed along the piers as a buffer for incoming boats.

The whimsical decor of the exterior of the homes on Ward’s Island. I imagine that the people living inside them were at least as colourful in character.

I could truly go on forever with this list, but I’ll end it here. Reminiscing is just getting too hard these days, but something in me couldn’t leave this series unfinished.

Staging The Course…

I have a rather broad range of interests, although some days it may seem to others (and to me) that my life is focused solely on my illness. It’s impossible to get any further away from it than my imagination and distractions will allow. There was a rather sombre moment in a conversation with my nurse this afternoon when I’d shared that I’d realized recently that not only have I forgotten what it’s like to feel healthy and pain-free, even in my dreams I don’t know what that feels like anymore. All my dreams (for someone who rarely sleeps more than four hours a night I still sneak in a lot of nocturnal creativity!) seem to incorporate some degree of disability that needs to be accommodated.

I follow a few bloggers and Tweeters who are either themselves seriously ill, have a family member who isn’t well, or their life’s work is to help those who are struggling with illness. A few days ago I came across the following blog, written by Erika Lade for The Huffington Post.

It isn’t my story, but quite a few points resonated with me and I’d like to share it with you. I won’t have the chance to figure out what life will be like post-illness, but the quandary of how to deal with my relationships with others and my realities of the time I have left isn’t far off base from what Erika has experienced.

Nobody Shaved Their Head for Me

I battled cancer for a year, did chemo, surgery, radiation, the whole lot -- and nobody shaved their head for me. You know all those stories of people who get diagnosed with cancer and ordered to do chemo and their best friend jumps in and immediately says they'll shave their head with you? Stuff like that?

Well, that doesn't happen as often as you think. The one thing that has held true about cancer, during and after, is that it will leave you disappointed at some point by every single person you know. And I had no idea that it would change every relationship in my life the way that it did.

At first, there is the rally. Everyone comes to your aid, everyone cares. Everyone is sending stuff. Loads of packages arrive to your house and flowers cover your living room. Then you start treatment and things slowly wane. The texts and presents become less consistent, people go back to their normal lives and you trudge, seemingly unendingly through treatment.

An inverted figurative graph is formed: While the shock and awe of your diagnosis has worn off to those around you and they slowly return to normalcy thinking that you are ok, things for you as cancer patient have only gotten more difficult. And for you they crescendo and build up. Yes, treatment might be working, but you feel more and more miserable while everyone else gets comfortable with your status as cancer patient.

Reflecting back, I think I subconsciously started staging my friends in the same way cancer is staged. A Stage I friend is the best you can get, checking in with you a lot, offering support, honest support and just bringing you things even when you say you are fine. A Stage II friend checks in periodically and is that one that you can go to when you're feeling rotten and truly be honest with. A Stage III friend is on the periphery -- they know what you're dealing with, but they can't handle it themselves, so they treat you uber-normally. They're the friends you can go to when you want to feel normal, but you know they have no idea what you're dealing with. A Stage IV friend is the worst, as they have basically just checked out since you told them you were sick.

There are lots of variations here, of course, and Stage IIAs and IIIBs, etc. Some people are Stage I friends for a bit then fall to Stage IIIB pretty quickly.

If you are positive and put on a front to your friends, if you wear a wig and look 'normal' then often the perception of you is that you are fine and "a trooper" or some other form of a Cathy cartoon that is "hanging in there." In reality, continuing through cancer treatment just gets harder.

Then, it seems, everyone shifts their focus to start asking you when "you're done" or when you'll "be done" with this cancer stuff. But the truth is that you are never done. When you finish treatment, that is when things get even more difficult, in some ways, because you begin to try to figure out a few things, namely a) what the hell just fucking happened b) how do I continue a normal life now and c) how do I grapple with the notion of recurrence and every ache and pain sending one into an obliteration of anxiety.

And when you are done with treatment, that is when cancer becomes intensely isolating, because a notion of post-treatment care in our current healthcare paradigm is non-existent and everyone in your support circle is just glad you are done and wants to move on from the nightmare that just happened to you. And you want this so badly too, but unfortunately the cancer cloud looms heavy over you and you cannot simply forget and move on. It is part of you.

As my friend and young adult cancer advocate Kaylin Andres recently noted, we need to reframe our notion of cancer as part of life and not simply part of death. As cancer becomes more and more common in young people, we must begin to shift the dialogue to focus not on how to accept cancer as part of our lives, but how to stop denying its presence.

Whether you see it in my body or not, cancer will always be a part of my life. As patients and thrivers, we would love to be able to speak to those around us about our cancer without them looking at us with sad eyes and a sense of morbidity. We are afraid, but cancer is truly a part of who we are, physically and mentally, and we need to be open about that in our relationships and our lives.

Maybe whether people shaved their head for me is the wrong thing to focus on. Cancer can go into remission but it never goes away. Fortunately, the best friendships stay around too.

No one shaved their head for me. But lot of people did a helluva lot more than that.

A New Home Decor Item…

With my nursing team’s persistence in making sure we do our best to keep me out of the emergency ward, I received a delivery last night at dinnertime (on a Saturday no less) of the IV equipment. When the palliative team comes through with help, they go all out!

Suzanna met the delivery person at the door, in came a rather substantial IV pole and several large boxes. She hasn’t opened the boxes yet, save for putting one bag into the fridge as she’d been directed to do.

As curious as I am as to know what’s inside (I would have thought that several bags of saline, tubing and syringes could easily have fit in half of one of the large boxes), I’ll leave it to my nurse to sort through when she visits tomorrow.

I’m grateful that I’m being looked after so well, but several thoughts comes to mind. Where on earth are we going to put all these supplies? Every nook, drawer and cupboard has been filled. The oxygen concentrator and tanks already take up floor space, my crisis kit has taken over the fridge. There’s just nowhere to put two huge boxes of more supplies.

The second thought is how this apartment long ago stopped looking remotely close to a normal home. Not that it ever truly did, I didn’t have the strength to properly unpack when I moved in last September so much remains in boxes. From the moment of approach to the front door where a sign boldly states that oxygen is in use, the apartment shrieks out that a sick person lives here. A wheelchair at the entry, machines whirring, oxygen tubing snaking down the hall, safety devices in the bathroom.

Now the IV pole. I’m not even sure how it’s going to fit into the bedroom, much less wheel through the doorway into the bathroom. The simply answer is that it’s not – I’ve leave that to your imagination as to how we’re going to tackle that dilemma.

The one thing that makes this all manageable in my head today is the knowledge that the IV is not meant to be a permanent measure at this time, only as an occasional procedure when I need rehydration. At least I’m praying that it’s occasional, that’s up to my kidneys to decide how that plays out.

What to do with the IV pole when it’s not in use? Well, we’ve let our imaginations run as to how to incorporate it into the apartment decor.

Coat rack? Drying stand for fine washables? Year round Christmas tree? Hang cured salamis from it? Magazine rack? Monkey bars for the cats? Monkey bars for me?

As much as I appreciate that my team is trying so hard to keep me here at home as long as possible, today everything is just a little too much in my face for my liking.

In Every Sense…

For the last few days I’ve been meaning to write another instalment of memories of Toronto, this time with memories involving the sense of touch. I’ll get to them in a few moments.

Thank you to the friends who expressed concern when this blog got quiet this week. Some physical and personal challenges have been exhausting me. Allow me to share some brighter highlights which did an excellent job of chasing away the tougher moments of the past week.

A few visitors truly brightened my week. One friend who I’d not seen in a very long time with distance between us having been a major obstacle, and another who shared her birthday with me yesterday.

Not to mention several friends, old and new, who made it clear that they could be called upon to accompany me/Suz to the hospital should I ever need to go to emergency again. My account seemed to have scared some of you almost as much as it scared me (and I’d even left the worst of it out to spare you the uncomfortable details).

On that note – let me once again say how much I appreciate my palliative nurses, most of all my lead nurse A. Upon hearing of my ordeal at the hospital last week, she spoke with my doctor immediately to order in supplies so that we can accomplish rehydration here at home the next time I get into trouble. I thought I was fairly well educated on medical protocols, I was delighted to learn that if a vein can’t be located, rehydration can be done through a subcutaneous needle into the fatty tissue instead.  That part I can provide, I’m not exactly packing abs of steel these days! I guess I’m not as prepared for my med school entrance exam as I had thought.

Now back to my beloved Toronto…

The feeling of my stomach leaping into my throat when driving westbound over the bump on the Gardiner Expressway near Palace Pier. Long since smoothed over, but even years later my heart would race in anticipation of that roller coaster ride.

The cobblestones of the Distillery District. Being the klutz that I am, I’d undoubtedly turn my ankle at some point negotiating the unevenness of the street.

The feel of a smooth, flat stone about to be sent skipping across the water on Lake Ontario. Rarely successful, it was all about the attempt. Many, many attempts. I’m surprised there were any stones left for the rest of you.

The coolness (and unfortunately sometimes the sticky tackiness) of a subway or streetcar safety hand rail. The lurch of the car when it was stopped too quickly (a great way to meet people before internet dating)!

Driving over the streetcar tracks on King, Queen, Spadina or College. The smaller my car, the more the tracks seemed to want to take control.

The windy windiness of the financial district or the York University campus. If I had started out with a good hair day, it certainly wouldn’t be ending that way.

The feel of cool pennies flung into the fountain at Yorkdale Mall in the hopes of a wish coming true. Which was usually for ice cream, how convenient that Laura Secord was steps away. 

The wondrously soft muzzles of the police horses at the Sunnybrook Park compound.

The heaviness of the revolving doors at the downtown Hudson’s Bay department store. The millisecond of silence moving between the blare of traffic to the hushed chatter of shoppers inside.

And this one is for any self respecting child growing up in Canada. A tongue stuck to a metal pole in the dead of winter. A rite of passage, but hopefully just the once being enough to learn to never do it again!

The Wicked Night, Part 2…

I’d mentioned a few days ago that I’d had a rough time at the local emergency ward. In hindsight another lesson for me in learning how to do better in asking for help.

Let me first say that I’m well aware of the fact that hospitals are understaffed. Many team members have to cut corners in order to get to all the patients. Fewer checks on the patient, hygiene and health safety protocols are compromised, information isn’t passed along or documented appropriately. Charts not reviewed thoroughly (I have serious drug allergies, if I wouldn’t have been somewhat on the ball Wednesday night things could have been even worse!)

Let me also add that it was my decision not to ask Suzanna or a friend to meet me at the hospital in the middle of the night. Many  have offered to come if I need them, my wish to allow the people I care about to get a good night of sleep won over.

I was admitted with severe dehydration, brought on by ongoing renal issues. I know my body well enough by this time to know exactly what I need. Rehydration (by this time I was well beyond doing this orally) and anti-emetics to get the nausea under control. I take some responsibility, my anti-emetics have an uncomfortable side effect and I held off too long with taking them at home hoping that’d I’d rally. A simple equation (and not to get graphic); output of liquids greatly exceeding input equals trouble.

The IV drip had been started by one of the paramedics while still at home, at the hospital a nurse moved the saline bag to a stand well above my head.

I was placed in a room by myself with a heavy door, no monitors, no call button. Too weak to get up in the first place, and not long enough an IV tube to get the door open myself anyway, I resorted to calling out for help when I realized that over the course of a few hours that the level on the saline bag was not dropping at all. I just wasn’t feeling that all too familiar coolness of the saline solution flowing into my vein. On top of that, my blood was flowing up in to the tube.

When a nurse finally arrived, he dismissed my concerns – telling me that because of my cardiac issues they had me on a very slow drip. 

An hour later I again called for help, shouting into the hallways at 3 a.m. as much as my weakened voice would allow, insisting that things were not okay. If I thought that I was dehydrated earlier, I  knew things had potential to become critical. I had missed my dose of cardiac arrhythmia meds on top of it, something I’ve had stern warnings in the past not to mess with. Again, I was told I was being impatient.

It wasn’t until another hour later when a different nurse came by to make a second unsuccessful attempt at gathering a blood sample that she actually looked at the IV tubing and bag. I’d indeed been not getting fluids, or the anti-emetics that would not long after they finally started flowing began to help me feel a bit better.

It was when I had a bit more strength that I had the courage to address what had happened directly with the first nurse.  We ended up having a long conversation about, speaking for myself only, my needs as a palliative patient. I spoke about how the emergency ward was truly the very last place I wanted to be, and that given a lengthy serious illness I had a pretty good idea of what I needed. I needed measures taken to make me feel more comfortable so that I could go home again. What I heard in reply was a plea to speak up on behalf of the nurses, to help their cause. Sorry friend, I really feel for you – but my energy has to be directed towards my own care.

Calls will be going out tomorrow to the team of paramedics who picked me up, and the the doctor who had taken over my care the next morning. Outstanding care, credit where credit is due.

What happened in between was simply awful. I pray that it was my last visit to emergency, when a patient considers that in the future the lessor evil to be possibly dying at home in a great deal of discomfort and mess – there is something really wrong with the system.

I’ve just passed what I’ve come to learn by experience to be the critical seventy-two hours after discharge from the hospital. The time during which if I’ve picked up an infection in the hospital it would have likely shown itself.

If there is a next time, I apologize in advance, but I will be asking someone to come with me. And I’d encourage any of you to do the same instead of trying to not be an inconvenience to a friend or family member. I’ve said it before and I’ll say it again, it’s too risky to go through the system without an advocate.

A special thanks to my wonderful neighbours A and D, who upon learning of my trip to the hospital via my blog wrote me a lovely note, insisting that I need go no further than one door down when I need help. Angels everywhere.

Continuing the City Tour…

I could have done without the interruption of the visit to the hospital this week, I can’t tell you how happy I am to be back home. Suzanna has worked hard to make our bedroom as comfortable a place as possible for me, I’ve been appreciating her efforts all the more after having been away.

Tonight – thinking back on what my nose remembers of Toronto!

The large production bakeries. One along the Gardiner close to the CNE, another on Eastern Avenue, and I can’t forget the Peak Freans outlet in East York. I’m salivating just thinking about them.

The exhaust fumes of the Toronto Bus Terminal on Bay Street, indicating that I’d soon be on my way to visit my beloved aunt and uncle in Bancroft.

The cheese shop in Kensington Market. I would beg my mother to let me wait outside while she shopped, too much cheesiness for my little girl nose!

The perfume counter at Simpson’s at the Eaton Centre. Buying my first bottle of perfume there, Miss Dior. Still my favourite. On evenings when I’m alone here, I’ll often spray a little on my pillow to help me fall asleep. A comfort sniff!

The Lush store on Queen Street West. The smell being a little overpowering if I remember, but the almond bath bombs were worth the headache that came with stopping in for a few minutes.

The smell of film developing chemicals at the Black’s camera store in the original Don Mills Centre (the mall having been reinvented several times over since I was a girl). I was hooked at age five when Mr. Eddie Black gave me a tour of the back of the store. The beginning of a life long passion for photography!

The tannery that used to reside at the junction of the Don Valley Parkway and the Gardiner Expressway. The stench would jolt me out a nap in the backseat of the car every time.

The Bloor-Yonge subway station. Indescribable. Rather best left undescribed.

Chinatown. Depending on the season, the aroma could be very appealing (the smell of dim sum wafting out on a cold winter’s day a particular pleasure) or the stench of rotting food from the back alleys could be stomach churning. Not the place to be on a hot and muggy August afternoon if it can be helped. Most definitely not during a citywide garbage strike. Trust me on that one.

Good thing the baby animals at the Riverdale Zoo were so cute, because what came out the back ends wasn’t so delightful to take in!

The smell of fuel at the ferry terminal, waiting for a trip over to Centre Island. And yes, I quite liked it (and I know I’m not the only one!)

The heavy, musty scent of earth and vegetation at Allan Gardens. I spent many delightful hours in the greenhouses photographing all manners of flowers and cacti.

St. Lawrence Market. Every stall brought a different, and often intriguing aroma. I’m really missing those peameal bacon sandwiches!

Freshly baked waffle cones at the CNE.  Funnel cakes would be a close second.

Remembering the days of living close to Lake Ontario, the occasional day when it would smell as it every fish that had ever swum in its waters had died at once.

Exiting the terminal at Pearson Int’l Airport. I’d bet that blindfolded I’d still recognize that I was home again.

Now it’s time to go back to scraping adhesive off of my skin from the bandages. Just when I think I’ve found the last little bit…

A Night I Don’t Want to Repeat…

I jinxed myself when I wrote last week that I had hoped to never visit a hospital again. That’s exactly where I found myself two nights ago, in the dreaded emergency ward. I’d been able to stay out of there for almost two years, but unfortunately my body conspired against me.

It was a very difficult decision to make in the middle of the night (Suzanna was away at her father’s for the night, upon my urging to give her a break from caring for me). I’d been feeling particularly unwell for the previous few days, a fever that’s stuck with me for weeks was getting worse. The chest pain had migrated to a new spot in my chest, and dehydration was setting in. By the time I called for help (first to my on-call nurse who recommended that I call 911 immediately) it was hard to even blink my eyes or swallow for the lack of moisture in my body.

What happened next might seem funny in the future, but not just yet. The paramedics were given my lockbox code to get into my apartment, they said that they’d had to fiddle with the lock in order to get in. Once they’d gotten me settled into the stretcher, an IV running (finding a viable blood vessel was fifteen minutes of stress – more so for them) we tried to leave the apartment. The door wouldn’t open.

A second fire truck/team had to be summoned to break the door open from the outside to let us out. A very long fifteen minutes for all of us. In my experience, I’ve never seen an emergency professional lose their cool in a stressful situation, and these gentleman never let on if they felt for even a moment that they were losing control of the situation.

Feeling so ill, I didn’t care in the least that we were leaving the apartment open. I just needed to feel better if it were at all possible.

Our local emergency department, save for one very impressive doctor who took over my care in the morning, lived up to my expectations based on previous visits to that ward. It didn’t start out well, the first doctor to see me was the same one who three years ago asked me if I had “decided” that I had ECD by researching symptoms on the internet after I landed in emergency with severe breathing difficulties. Coincidentally one of the paramedics who picked me up this week remembered that he was also with me on that night three years ago. He was so sweet on both visits, this time holding my hand while his partner did my intake work with triage.

While the ER was letting me down, my body wasn’t exactly living up to my expectations either. One nurse was able to get a small amount of blood out of a vein a few hours after I arrived but the quantity was insufficient for the lab. Four nurses then made a total of close to twenty attempts to access a vein without success, until the second doctor finally put a stop to it. It didn’t hurt me, but he just couldn’t watch it any longer. Who knew that they could try to draw blood from a thumb?

I could write chapters on what went wrong at the hospital that night and yesterday. First hand experience as to how my palliative status altered what many will already know to be a challenging situation visiting the emergency department. The worst part was the look in my daughter’s eyes when she arrived the next morning, seeing first hand the pain and indignities that I was experiencing. Fear that this visit might not be the last to the emergency ward despite my wishes to avoid it. If I thought that I dreaded it before, it’s nothing compared to how much the thought of a return visit scares me now.

Hiss, Boom, Bah…

I’m glad that readers enjoyed my last post about favourite flavours coming out of Toronto, tonight I’m remembering some favourite sounds.

This is my classic strategy for pain management – distraction. My body is pushing me to the limits this week; to try to take my mind off of the discomfort I’m doing what works best – making lists. Luckily, it’s a week during which much needs to be put down on paper. Or rather typed into or dictated to a computer, it’s been difficult to accept that holding a pen to paper isn’t working anymore. I can connect the two but getting anything legible out of the exercise is another story.

The squeal of the subway car as it went around the bend at Union Station. That was always sure to wake me up if I’d dozed off on the ride downtown.

The honk of the Toronto Island ferry. Accompanied by the chatter of kids who were having a day excursion to the islands as part of summer day camp. One summer I was one of those chatterers and had a ball. Except I didn’t chatter, I was entirely too shy and was content to let the others increase the decibel level.

The sound of the explosion of sparks that went flying when an audience member was invited to touch the static sphere at the Ontario Science Centre. I got to do it once, and never again wore messed-up hair so proudly!

The neighing, braying, mooing, baaing and general mayhem of the Royal Agricultural Fair.

The wild, seemingly endless honking into the wee hours of the night after the Toronto Blue Jays twice conquered the World Series. I’m pretty sure we still had accompaniment at breakfast the next mornings.

That eerie hollow silence inside the dome of the Planetarium. I do wish that it would have been around to show to Suzanna, she would have loved it!

Sounds of planes taking off at Pearson International Airport. I’m old enough to remember when there was just one terminal, with a parking lot that afforded a wonderful view of the runways. I’d either be really happy that family was about to arrive from Germany, or in tears because we’d had to say goodbye. Truth is, happy or sad – I could be depended upon for tears at the airport.

The shouting out of numbers as my mother and I waited our turn at the German deli. The delight in hearing the different dialects in the conversations between butchers and customers, waiting for the sampling of something delicious that was sure to be offered to me if I remained patient.

The wave of music as my feet led me down Queen Street at the annual Beaches Jazz festival. Within a few hours I’d have the chance to hear a good twenty plus bands, trying to decide which two or three groups would get my money for their CDs. I still listen to one of my favourites, Samba Squad!

The monotone buzz of thousands of conversations happening at once at the One of a Kind Show and Sale. I’m honoured to have once had a booth there myself, backing onto the booth of one of my favourite artists – Stephen Gillberry. Small prints created my Stephen hang above the bed, coming to me as a result of a swap of our work. They get so many compliments!

The whoosh of bicycle couriers speeding by. Their skill in manoeuvring around the city always mesmerized me. And kind of terrified me. I was tempted to start drinking coffee so that I could hang out at Jet Fuel on my lunch hour so that some of their coolness could rub off on me. The nerd in me prevailed and I stayed away.

The clop of hooves on the pavement as the police on horseback swept by. What glorious creatures they are! The horses I mean. Sometimes the policemen too. Now I’m blushing.

The sheer “boomosity” (yup, made that up) of the music cranked up before a band arrived on stage at the old Maple Leaf Gardens. “Chain Gang” will forever remind me of Billy Joel. He was running late, and apparently that was the only song that the sound technician had lined up. Okay by me.

Let’s leave out my screaming my head off on the Flyer rollercoaster at the Ex. And at Wonderland. And I suppose I can’t leave out the log flume at Toronto Island. I know I’ve said that I was a quiet child, but that wasn’t entirely without exception.

Any memories that you’d like to share?

Toronto, Bite by Bite…

One rough day, or rather another rough day. It’s been weeks of intermittent low grade fever and chills on top of the other shenanigans that my body has been up to (and enough with the hiccoughs already!) It truly can get quite tiresome.

My friends and volunteers consistently offer to bring me whatever edible treats might appeal to me, yet I can’t think of anything in particular that I want. I did have one coincidence a few weeks ago, minutes before a food volunteer arrived I told Suzanna  that I was hankering for some mashed potatoes – lucky me, that was exactly what the volunteer had prepared. Serious comfort food. Seeing as I’m mostly on soft foods and liquids now with a wonky esophagus that doesn’t always cooperate, a little butter (okay, a lot of butter) is a welcome addition to help slide spoonfuls of mashed potatoes on their way.

I passed on Suzanna’s offer this evening to prepare dinner for me before she went out for a few hours, the thought of food just doesn’t appeal to me. Some of you might want to suggest that I should eat anyways, but I know from experience it’s best to leave well enough alone. My body will tell me what it needs, I have to trust it.

Others have expressed regret on my behalf for the foods I’ve had to give up either due to allergies or a rapidly expanding list of intolerances, but surprisingly I generally don’t feel deprived. Who knew there were so many variety of delicious soups on offer?

I can think back fondly on foods that I’ve enjoyed over the years without feeling upset about missing out. It’s not difficult to remember the tastes, textures and aromas – I was without doubt someone who had lived to eat, rather than eaten to live.

I’m taking a wee tour tonight of some of the culinary delights that I’d enjoyed in my home city of Toronto over the years, maybe they’ll bring back some memories for you too. Just please don’t tell me if they’re no longer available? Let me dream a little.

Popsicles from Becker’s convenience store. “Allowance worthy” as a kid, and I continued the tradition with Suzanna on hot summer evenings when she was small.

Beer nuts at the CNE Automotive Building. I never brought home enough bags of them.

Fresh bagels from Gryfe’s. It was my father-in-law who would fetch them when the bakery opened early on a Saturday morning.

St. Lawrence Market, Carousel’s peameal bacon sandwiches. Weather permitting, eaten out on the terrace. Even better if Buskerfest was on.

Jamaican beef patties at the Warden subway station. Totally unlike me to pick up something up at a less than pristine food establishment, but the aroma would haul my behind in there before I could think twice.

The ice cream trucks in front of City Hall. Vanilla chocolate swirl every time.

BBQ pork buns from Chinatown. My apologies to my coworkers who found the aroma irresistible when I’d heat them up for my lunch at work.

Birthday cakes from Chocolada in Thornhill. Hazelnut mousse reigns!

Fruit flans from the Hazelton Cafe. Especially fabulous if kiwi was in season.

Golden Star (Thornhill) burgers and fries. The more of us crammed into a booth the better back in high school.

Harvey’s Frings. Combo fries and onion rings, date night treat with my high school boyfriend.

Ace Bakery, anything on offer except for olive bread. Olives and I are not friends.

Blueberry danishes from Zane Patisserie in the Beaches. Okay, that one I’m still craving on a regular basis. Gluten intolerance be damned, for those I’d gladly bear the discomfort that follows.

Pistachios (the ones with coarse salt) from Arz Bakery. Their baklava is also heavenly.

Pork rinds (affectionately known in our household as German diet pills) from Vienna Fine Foods.

Enrico’s pizza in Scarborough. A hot mess of grease, cheese and pepperoni, but the fun of sneaking Suzanna out of elementary school at lunchtime made it taste better than any other.

There will be other memorable foods that are sure to pop into my head over the next few days, but for now I’ll stop before I start drooling. I’m not yet tempted to have something to eat, but I may yet get there tonight.

Lines in the Sand…

I can’t remember which show I was watching last week when I heard a police officer say to another “don’t let him surprise you, he’s dying and has nothing to lose” when speaking about a suspect in a murder case who had cancer.

It turns out the suspect wasn’t the culprit, but that line has stuck in my head and has come to mind when faced with a few dilemmas over the last week. Does the fact that I’m nearing the end of my life influence my actions and decisions? Certainly in regards to choices I’m having to make about my medical care, it’s been a very busy week on that front with more ahead in the coming days.

I’d told myself that I was never going to be in a hospital again if it could be helped. A doctor has proposed a high risk procedure that could ease my pain, and I find myself leaning towards going for it. It does mean revising my plan to avoid hospitals, but given a rather compelling possible beneficial outcome it deserves discussion between me and my daughter. I’ll share the details once we’ve made a decision, for now we need to weigh the pros and cons presented by my medical team without any outside influence.

Knowing that I have limited time dictates evaluation of personal situations  as well. I'd like more of what makes me happy, and a whole lot less what make me unhappy. Who wouldn’t? This week, I was presented with a surprising number of options given the limitations that my physical disabilities throw in my way.

A friend and I were so wrapped up in great conversation this afternoon that we lost track of time. My friend found herself running late in picking up a family member.  As she reached for her phone, she said that the family member would be understanding of the delay given that it was me who was being visited.  I jokingly added “the dying person trumps all”.

Not that I should take precedence over others, I’m still the me who wants to make everyone happy and not raise any conflict. But I have, and will speak up because my lines in the sand are moving. Some are being drawn in more firmly, other erased. What I’m not prepared to do anymore is let someone else tell me where my lines should be drawn, that I’ve done far too much in my life.
I have nothing to lose anymore, except for my inner peace if I’ve not spoken up for what I believe to be the best for me and my daughter.

Someone Had to Go and Ruin It…

For many months now, we’ve had a good system in place for giving visitors (friends, volunteers, nurses and PSWs) access to the apartment. I could buzz them in through the front door downstairs using the phone at my bedside (when the phone has been working, but that’s another story), and Suzanna would leave the apartment door open so that visitors could let themselves in if she were out.

It might take few minutes before a visitor would make their way down the hallway. Shoes to taken off, coats hung, food put away in the kitchen, charts retrieved, a cat snuggled, hands washed.

If I heard the door open, there was no concern. Visitors were expected and generally on time.

This week it all changed.

I was expecting a visitor who had given me a small window of time during which she’d be stopping by. Although I was a little surprised when I heard the door open a good forty five minutes before her planned arrival time, I didn’t call out thinking she might have finished her errands earlier than anticipated.

A good two minutes passed, yet nobody had come down the hall. Somewhat alarmed, I called out her name and heard nothing. I can’t be certain, but I’m fairly sure that I then heard the door open and shut again very quietly.

A quandary. Walk down the hall to see what was up? The situation was making me too nervous so I hauled myself out of bed and lumbered down the hallway with my oxygen tubing in tow. A gamble, walking that short distance would most definitely be the cause of considerable pain that would follow in the next hours.

I suppose it’s a good thing that our apartment is small, it was easy to see that whoever had come in had left again. I had no intention of remaining upright a moment longer than necessary and lumbered back to bed. Uneasy, I still had to leave the door open for the visitor who was soon coming.

Might the intruder have taken something? Quite possibly, yet there’s nothing of value in here. I’m not about to have Suzanna do an inventory of kitchen utensils and books, those are about the only thing left in here. The intruder might have thought that we were in the middle of moving (it is really quite sparse in here) and decided it wasn’t worth the effort of snooping about.

Even if something was stolen, it’s not about material items. It’s about violation of our space, but more so a sombre reminder of how vulnerable I am alone at the end of a hallway.

I’m not about to publically broadcast the steps we’ll be taking to make this a safer place for me, but we do have to go about things differently for visitors coming and going from here on in.

Unfortunately, what may result is that at times I’ll have to tell visitors that they can’t come over, or have to limit visitors to when Suzanna is here. Sadly, when she’s away is when I appreciate their company the most.

All this further adding to my sense of isolation. Really, whoever you are – did you have to take this away from me too?

Unfinished, Imperfect Works…

I’ve always admired Dustin Hoffman, with every interview I see I think more highly of him as a person. He’s an actor who has the courage to use the voice given to him as a celebrity to speak out on issues that concern him, a man who isn’t afraid to point out his own flaws and foibles. A man who isn’t afraid to show that he’s as human as the rest of us.

I’m including a video clip that I found a few days ago. It’s an interview from last year speaking about his preparation for his role in the movie “Tootsie”.

If you haven’t yet seen this clip (below), I’d encourage you to do so. Although he’s speaking to the issue of how women are measured on their perceived level of outer beauty, it’s a discussion that could easily be about biases in regards to race, sexuality and disability.

It’s days since I first watched it, and I’m finding it difficult to let this one out of my head. Wondering what wonderful souls I might have missed out on getting to know in my lifetime because I made snap judgements for whatever reason.

I’ve found myself many a time of being in the position of being deemed lacking by someone else, who hasn’t?  I could give you numerous examples, but you probably have many of your own to draw upon. Not beautiful/handsome enough, not smart enough, not clever enough, not the “right” colour, not of the” right” faith, not of the “right” sexual orientation, not of the “right” level of income or education. The list goes on.

My physical disabilities proved (in the outside world) to be yet another reason to be overlooked and dismissed. I don’t miss that at all. To many strangers,  I was deemed unworthy of being acknowledged or being looked in the eye.

I generally would think to myself that if I had been dismissed so easily by a stranger for not being “enough” of whatever, then that person wasn’t worth knowing.

And then there are moments like when I watched this video and I am reminded that everyone has room to grow their appreciation of others (whether they care to take that opportunity to expand their hearts is another matter). I appreciate that Dustin Hoffman was humble enough to admit that he could have done better, and intended to do so going forward after his experience. Isn’t that called growing up? I’m grateful to have friends who have the wisdom to know that none of us ever truly finish that process. The learning about ourselves and the world beyond never ends.

The Final Season…

Let me first thank those who made donations in response to my appeal for support of the Erdheim-Chester Global Alliance. I’ve been provided with few details in respect for the request for anonymity, but let me assure you that the generosity is much appreciated.

My “The Big C” marathon a few days ago? I’m grateful that I was mistaken in that it was only four hours, not eight. I don’t think I could have handled more, I doubt there was a tear left in me to cry out. In the first half hour alone I hit pause three times to give me time to deal with my feelings about the storyline.

What did I get from the final season? A somewhat diminished feeling of isolation, yet at the same time very much a heightened one. It sounds contradictory I know.

I could identify very closely with Laura Linney’s character and the ordeals she faced, it was astounding just how many correlations there were to my own life. It felt like the writers had crawled into my head, it was more than disconcerting to watch what felt like my own life unfolding. Or perhaps more accurately, folding.

I cried uncontrollably when the main character was acknowledging the utter sadness of what she will miss in her child’s life. With that came the reminders of my fears about who will be there for my daughter when I’m gone, when so many seem to have difficulty being around our situation while I’m still here. My disease may not be contagious, but I suspect that the fear of death just might be.

The hardest part of watching the end of the series was how prolonged the dying process was for Cathy Jamison. She would be in a great deal of discomfort and pain, looking like it was close to the end – yet two months, four months, six months later she’d still be hanging in.

Even when Cathy decided that she no longer wished to continue treatment, that she was in every way ready to let go her body still didn’t release her. I don’t think that anyone who isn’t living this scenario can understand the mental fatigue that comes with living like this.

For those of you who might be thinking, geez – Sandy’s still here? I thought that her prognosis was supposed to have her on her way out quite a while ago? 

It’s not for lack of letting go. Although I sobbed harder than I have in a very long time at the final scene (if you know my family situation you’ll understand why it was a heartbreaker for me), knowing that everyone close to Cathy could finally pull out of the limbo that they’d been in for years brought to me a sigh of relief.

We have to do better going forward for our dying. Although Cathy had advocates in her husband and brother and I’m doing the legwork  (oh dear, there’s a terrible pun) myself, she, like me, ran into brick wall after brick wall with bureaucracy and others’ fears of bending the rules in the name of compassion. Truly, we must do much better than this.

P.S. I don’t often ask for well wishes and prayers, but I’m asking for them tonight to help get Suzanna (and everyone else affected)  home safely (or to a dry location). Her first ever drive into Toronto turned into quite an adventure thanks to the weather. Flooded roads and widespread power outages (cars submerged and floating away nearby, thousands of people stranded across the city). Suz – your reasons for going tonight will make your memories of this evening all that more poignant. Swim my angel, swim.

Learning How to Do This…

About two years ago a client, who has since become a good friend, called out of the blue.

She’d heard that my health was poor and wanted to extend her support and friendship, for which both I’m grateful. We spent several hours on the phone that evening, after catching up she offered a suggestion for a TV show that I might enjoy watching called The Big C. She cautioned me that although a show about a woman dying of cancer might seem like a strange recommendation for someone in my state of declining health,  she was certain that I would appreciate its message.

Spoiler Alert – if you haven’t watched the show and wish to, you might want to stop reading at this point. Or not. That’s the nice thing about getting a heads up, you can make your own choices. Not a random thought, it does have relevance to the rest of this post.

I’ve watched Seasons 1 - 3, laughing and sobbing my way along. There have been so many moments that have resonated with me, and some that I wish I could have related to. Some episodes needed a second or third viewing in order for me to look past my initial gut reaction.

Cathy Jamison (played by Laura Linney) is dying, and is keenly aware of how limited her chances for survival are. She’s mother to an only child, a son close in age to Suzanna. She has a husband who stands staunchly by her side through thick and thin – even though that road isn’t necessary travelled at the same speed by the two of them. The overwhelming weight of me doing this without an adult partner can be crushing (my best friend’s unrelenting support notwithstanding, but there is a difference that she herself knows leaves a hole) and the show has been especially hard at times to digest for that reason. Suzanna is of tremendous support to me but I can never lose sight of the fact that she is my child, and it’s up to me as her parent not to look to her for comfort when I am afraid. She has already had to grow up way too quickly, and bears more responsibility and fear than I would ever want anyone to place on her. Least of all me, yet here we are.

I’ve learned how to do much of this from Cathy Jamison. Learned how to ask for help, learned how to grieve, learned how to make choices that are best for me and my daughter. Learned that it’s okay to challenge my medical team when I need more information or something doesn’t seem quite right. Learned how to answer questions (or sometimes how to dodge ones I’d rather not address), learned that unconditional love is indeed what rescues me when I’m I’m feeling weakened, ugly and diseased.

There’s no question about it, this all sucks. The circumstances have little wiggle room, but my attitude is completely within my control.

I’m in the process of downloading Season 4, the last in the series. Eight hours of what is bound to be a roller coaster ride for me, I’m planning on tackling the last of The Big C in one go this evening while Suzanna is out. She doesn’t need to watch as I process this, it likely won’t be pretty.

I’ve already tripped upon a season finale spoiler online, Cathy’s fate is much what I had expected. I’m not upset by this discovery, in fact I think it helps set me up for being able to relate more closely to her character. What additional lessons I’ll have learned by the time the final credits roll remain to be seen.

I’m prepared. A full box of tissues and an open heart. Much emotion has been building up over the last few weeks with events that haven’t gone well, I suspect that this will be just what I need to release it. Heads up.

Six Days Were Enough…

Another medication experiment gone awry, the Gabapentin proved to be an abysmal failure. Not only did the pain increase (the bone pain remained, but in addition I developed pain similar to the shin splints I had experienced back in my very short and rather insignificant track and field heyday doing hurdles), I zombied out for long periods of time between doses.

The clincher for me happened yesterday when I found myself so out of it that I was unable to reach for the phone when my dearest friend called from out West where her job currently has her stationed. It wasn’t exhaustion, it was the inability to figure out what was ringing and what to do about about it. So stoned that over the course of the week I couldn’t have told you for the better part of my waking hours whether it was morning or afternoon, whether I had just woken up or was ready for bed, if I was hungry or had just eaten. Poor Suzanna was almost as frustrated as I was with my lack of awareness and my inability to focus on anything more complicated than the hem of the bed sheet, save for a few hours each day as a dose would wear off and I readied myself for the next one.

A totally unsatisfactory condition for me to be in, this is not a state of mind I wish to visit – much less live in if given a choice. I understood that disorientation might come into play for the first few days, but it was only getting worse and dangerously so. The last thing I want for myself is to become unable to communicate with my daughter and friends, this last week brought with it a deep sense of isolation.

I’ve brought forward my views on dying with dignity, and this is another instance where I believe that each patient should be allowed to make choices best suited for themselves. The acceptance and refusal of treatments should be a major part of this discussion.

Are the patient’s wishes always respected? I’m saddened to say that from personal experience this is not always the case. Far too much of whatever energy I have available is spent discussing this issue with others who have a say in the direction of my care, but don’t have to live in my shoes. Let me add that the majority of my palliative team are supportive and nurturing, but there are few horizons yet to be broadened.

For now, I need to deal with the disappointment that yet another pain relief strategy hasn’t worked. I’m used to this and have learned not to set high expectations, however it’s impossible not to feel some sadness over yet another medication that didn’t help.

Bringing the Outside World In…

My nurse was here for her regular visit this afternoon when we heard the distant rumble of thunder. Although I was in the midst of my medication induced haze (which wears off after four or five hours, I’m losing my patience with this adjustment period!) I smiled broadly; she asked what had brought the grin to  my face.

I explained that with endless days looking at the same bedroom walls and a small patch of sky in my sightline through the window, a thunderstorm was something to be welcomed. A change of scenery as dark clouds roll in, the smell of the lightning, the crackle and boom of the thunder. I’ve always loved thunderstorms, since I was old enough to let myself out of the house I’d head straight for the front porch or balcony to take in the drama of a storm.

Of course I can’t run outside anymore when a storm approaches, but I love that if she’s here my daughter will watch the storm with me through that small patch of window hoping that we’ll catch a glimpse of a lightning strike.

My daughter does some truly amazing things in trying to bring the outside world to me. She’s always had a rich vocabulary, she uses it to describe with as much detail as possible what she knows I would have enjoyed seeing for myself, but can’t.

We have two cats now. Scrabble, whom I introduced to you when I adopted him in November, and Mia, who was Suzanna’s faithful companion during her second year away at university.

The two cats don’t get along. Plain and simple, Mia wants nothing to do with the younger, rambunctious Scrabble. We’ve had to get creative to allow each to have or her own space in this small apartment.

Occasionally the two find themselves in close proximity, often under some rather hilarious circumstances. Suzanna runs for her phone, documents the moment with a snapshot and comes running to show me.

It may seem like a small and perhaps insignificant gesture, to me these glimpses of the world outside of this room are very much appreciated. I hear the constant hum (in reality a whole lot louder than that) of life going on in a world that I’m unable to participate in. Normalcy can sometimes seem so very far away. Trying to remember what it was like to walk up a flight of stairs effortlessly, to drive to a photo shoot, to chop ingredients for a favourite recipe. What did it feel like to put on a favourite outfit and walk around in heels, to throw a ball back to the neighbour’s son, to sit at a table for a meal? Those moments seem so very far away.

I could allow myself to be miserable in remembering all that I can’t do, instead I try (and usually succeed) in appreciating what Suzanna and others can show me of their world. Please keep it coming, reminders of the outside world are what help me to cope with being confined within these four walls with my view of a small patch of bare sky.

And for those times when I’m not successful in pushing away the reminders of what is no longer possible? My daughter quickly comes to me with a kiss for my forehead, expressing her wish to make it all better if she could. At those moments, the outside world melts away and all that matters is right in front of me.

Floating…

I write about the good, bad and ugly of progressing through this illness. Tonight, I bring to you the stoned. Yup, this new medication has me completely whacked out high. It’s not doing a thing for the pain yet, I’ve been told that adjusting to this new medication (Gabapentin) could take a few weeks.

I have mixed feelings about trying yet another medication that is experimental. Gabapentin is used for nerve pain, we’ll have to wait and see if it’s at all effective for bone pain. In the meantime, I’m feeling doped up and sleepy. At least one good thing has come out of it, I’ve had a few nights of decent sleep.

It’s perplexing to me why anyone purposely takes drugs to get high. I don’t wish to pass judgement, do whatever floats your boat as long as others aren’t hurt in the process. I however, quite detest knowing that my brain isn’t working with all pistons firing. It’s distressing to know that my judgement is impaired, that I’m not able to fully take in all that is going on around me right now.

It scares me silly that Erdheim-Chester disease can spread to the brain. If given the choice between having brain impairment or the physical bone pain that I experience, I’ll keep the bone pain without hesitation. It’s frightening to think that one day I might experience both.

An important component of my care plan is knowing that I have two people whom I trust implicitly as my powers of attorney for my medical care. Two people who love me, and will do whatever is necessary to ensure that I’m as comfortable as possible if I’m unable to make decisions for myself.

Before posting this, I’ll be having it proofread to make sure that I’m not offering drivel to you. Then I can go back to staring at the wall for a few hours. I do hope this phase passes soon, I really do have better ways to use my waking hours.

Happy Canada Day!

I should be more careful with what I wish for, I had wanted more sleep but this is ridiculous! I’ve slept the last few days away, I’m hoping that I soon become used to this new medication. Tomorrow I double the dosage, good thing Suzanna will be around to keep me from getting into too much trouble.

In honour of Canada’s birthday, I’m sharing two photographs tonight – one from either coast. One was taken in a sleepy Newfoundland fishing harbour at dusk, the other on a ferry going from mainland British Columbia to Vancouver Island. On both days I had the thrill of seeing a whale (I consider myself quite lucky to have had those sightings, having passed on whale watching boat trips on both coasts because of my inclination towards seasickness).

Now, back to sleep for me!

To download this image:

https://www.dropbox.com/s/havz2dc7guefqky/nfldboathouse.jpg

To download this image:

https://www.dropbox.com/s/tti46mv7i7q6blr/ferrystack.jpg