It’s bell ringing day!

 

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There’s a widespread tradition amongst cancer treatment centres including the Cross Cancer Institute in Edmonton where the following poem is posted on the wall of the waiting area outside each radiation treatment unit.


Ring Out

Ring this bell

Three times well

It’s toll to clearly say,

 

My treatment’s done

This course is run

And I am on my way!

 

Today, after 30 treatments over the past 6 weeks, it was finally my turn to ring the bell! I woke at 5:30 a.m. filled with anticipation and the morning crawled by as I waited for one o’clock to arrive. Now that it’s over, it’s hard to put how I feel into words! Perhaps it hasn’t really sunk in yet. Maybe it will seem more real when I board a plane for Vancouver tomorrow instead of heading back to the Cross!

I’ve been told not to expect the side effects to peak for another two weeks and there will be follow-up appointments in the future, of course, but this race has been run. Praise God!

Today was a bit anticlimactic in that, immediately after ringing the bell, I had to go upstairs for a CT scan to see what’s happened to my other cancer in the six months since it was last looked at but I’ve crossed one finish line. I’ve climbed that mountain and I’ve rung the bell! Now it’s time to move on!

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High Level Bridge Streetcar

Until I started looking into things to do while we’re in Edmonton for my radiation treatments, I’d never heard of the High Level Bridge Streetcar. Maintained and operated by the volunteer members of the Edmonton Radial Railway Society, there are actually four vintage streetcars that operate between Old Strathcona on the south side of the North Saskatchewan River and the Jasper Teminal on the north side, but only one is in operation at a time. Today, it was the Melbourne 930, built in Melbourne, Australia in 1947. In addition, the Society has five more double ended streetcars in operation at Fort Edmonton and several others that they hope to fully restore in the future.

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Prior to September 1951, the Edmonton Radial Railway regularly carried passengers across the upper deck of the High Level Bridge. At 755m long and 49m high, the bridge was one of the world’s highest streetcar river crossings and afforded the passengers a spectacular and exhilarating view. To the delight of visitors to the city as well as locals, seasonal service was restored in August 1997.

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After finding a place to park near the Strathcona Terminal, we originally intended to stay on the streetcar for the 40 minute round trip, but due to the fact that I’d forgotten my water bottle, an absolute essential on a hot day especially since my saliva production has been greatly suppressed by surgery and radiation, we got off at the Jasper Terminal near the corner of 109th Street and Jasper Avenue. After finding our way to a nearby convenience store and securing a bottle of water as well as a couple of ice cream bars, we enjoying our snack in the shade of a tree at nearby Railway Park before catching the next car back to Old Strathcona.

Alberta Legislature Building from the streetcar

Alberta Legislature Building from the streetcar

Fort Edmonton, a walk through time

Richard and I have been to Fort Edmonton numerous times in the past, but always with a class of students, usually 5th graders, in tow. Yesterday, we thoroughly enjoyed taking a more leisurely stroll through time without having to constantly count heads and make sure we hadn’t left anyone behind!

When we were teaching, a visit to Fort Edmonton fit perfectly with the grade 5 Social Studies curriculum which was largely a study of Canadian history. We liked to prepare our students for the field trip by reading Alberta author, Brenda Bellingham’s novel, Storm Child, to them. The story of Isobel, daughter of a Scottish fur trading father and a Peigan First Nations mother living in Fort Edmonton in the 1830s, the book never failed to capture their imaginations and bring the history alive for them.

The best way to see Fort Edmonton, Canada’s largest living-history museum, is to begin your visit by climbing aboard the steam train and riding it back to 1846 and The Fort, an exact replica of the original fur trading fort which once stood on a bluff on the opposite side of the North Saskatchewan River close to where the Alberta Legislature Buildings stand today. The Hudson Bay Company fort, where natives brought their furs to trade for a wide variety of goods from Europe and other far away places, is presided over by enormous Rowand House. Built to house Chief Factor John Rowand, his wife and their seven children, it was often referred to as Rowand’s Folly due to it’s sheer size; a mansion in the middle of nowhere!

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Rowand's Folly

Rowand’s Folly

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After touring the fort and the Cree encampment outside it’s walls, we left the fur trading era behind and wandered down 1885 street visiting homes, school, church and businesses of those hardy souls who made Edmonton home during it’s early settlement days.

 

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1885 Street

Rounding the corner onto 1905 Street, we stopped for lunch and dined on bison burgers in bannock, the traditional biscuit-like bread that sustained hungry voyageurs, settlers, and First Nations people in the early days of our country. Then it was time to take a jump forward in time and head for the Cross Cancer Institute for my radiation treatment. Our plan was to catch the streetcar in front of our eating establishment and ride it back to the park entrance but unbeknownst to us, the streetcar driver had also stopped for lunch! A brisk walk got us back to the vehicle just in time to make it to my appointment without a moment to spare!

1905 Street Where was that streetcar when we needed it?

1905 Street
Where was that streetcar when we needed it?

Within an hour, we were back at Fort Edmonton. This time, we caught the streetcar back to our stopping point and resumed our walk through time where costumed interpreters help bring history alive for visitors. We enjoyed sipping iced tea with Alexander Rutherford, Alberta’s first premier, on the front porch of his large and comfortable home that even boasted hot and cold running water! Not everyone lived in such comfort, however. In the early years of the twentieth century, Edmonton was growing at such a rapid pace that some families lived in tents for up to two years waiting for houses to be built. Not too bad in the summer perhaps, but much more challenging when the winter temperatures dipped to -40º!

No, I didn't apply for the job!

No, I didn’t apply for the job!

By the time we reached 1920 Street, we were ready to stop at Bill’s Confectionery for ice-cream cones. After all, it was the hottest day that Edmonton has seen so far this summer! Crossing the street to the Capitol Theatre, we took in an excellent 15 minute interactive movie about the early history of the area and the city. A walk through the beautiful peony garden, which is in full bloom at this time of year, and a visit to the Motordome, where we were able to indulge our love of antique cars, brought our day to a close.

1920 Street with the peony garden in the foreground

1920 Street with the peony garden in the foreground

The only part of the park that we didn’t take in was the 1920s Midway, a fairly recent addition with games and rides that would likely be a hit if you visited Fort Edmonton with some of the younger set.

I’ve been told that fatigue is one of the most common and expected side effects of radiation. After spending a total of six hours walking through time in the hot sun, I was tired but I saw a lot of others dragging their feet back to the parking lot looking no more done in than I was and after a good night’s sleep, I feel fine!

Fitness from the shoulders up!

“Normally you should be able to place the two middle joints of your index and middle fingers in your mouth” reads one of the many handouts that I was given at the Cross Cancer Institute this week.

You tried it, didn’t you? I knew you would!

I can do it, but barely. In fact, when I do, I’m left with imprints of my teeth on my fingers.

I’m amazed at all the services available to patients at the Cross and I haven’t even had to go looking for them. This week, I had appointments with a speech language pathologist (who knew that they also deal with swallowing issues?), a nutritionist and an occupational therapist and now I have a whole new exercise routine to follow. I have lip exercises, swallowing exercises, jaw exercises and neck exercises to do! Sadly, none of them requires cute exercise attire!

The lip exercises are meant to help correct the crooked smile that I was left with after last month’s surgery. It has been gradually improving as the facial nerve recovers and if it never got any better than it is right now, I could certainly live with that, but I might as well do what I can to help it along.  The exercises, which involve making a variety of funny faces, are simple and easy do while I’m engaged in other activities.

Surgery also left me with a fair amount of stiffness in the neck and jaw area, hence the difficulty getting two knuckles between my teeth. Radiation can cause increased stiffness in these areas so, rather than becoming a permanently stiff-necked person, I’ll be doing neck and jaw exercises at least 3 times a day for the duration of my radiation treatments and for several weeks or possibly months afterwards. Fortunately, they’re also simple to do and don’t take very long.

Dysphagia, or difficulty swallowing, is a common side effect of radiation to the head and neck so the swallowing exercises that I’m doing are preemptive, designed to minimize or prevent problems from arising. They’re not particularly difficult to do, but because they’re done with sips of water, they involve consuming copious amounts of H2O. Since staying well hydrated is important, this isn’t a particularly bad thing but it does mean having to break the exercises down into manageable amounts spread throughout the day.

I haven’t lifted weights since having surgery and the treadmill is gathering dust again now that the weather is suitable for walking outdoors, but I’m still fitting in my regular morning exercises 4 or 5 days a week. This is the first time I’ve worked on being physically fit from the shoulders up though!

Old Strathcona

We had a couple of hours to kill between a late morning appointment with the surgeon who did my recent surgery and today’s radiation treatment. Since we were just a few minute’s drive from Old Strathcona, one of Edmonton’s trendiest neighbourhoods, we decided that that would be a good place to explore today. It had been several years since we spent any time there.

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Today, the city of Edmonton straddles the North Saskatchewan River but originally, Edmonton was on the north side while South Edmonton was a separate village on the south side. In 1899, the same year that it was incorporated as a town, South Edmonton was renamed Strathcona and in 1912, the two communities amalgamated. Whyte Avenue forms the backbone of present day Old Strathcona, a funky blend of historic buildings and youthful vitality. Designated a Provincial Historic Area in 2007, it is home to a plethora of unique boutiques, galleries, music shops, restaurants and drinking establishments.

Old Strathcona has an ambiance all it’s own and is a perfect area to explore on foot. I loved the names on many of the signs; titles like When Pig’s Fly, Funky Buddha, Tilted Kilt Pub and Eatery, and The Plaid Giraffe! We enjoyed a hearty and delicious lunch of po’boys and sweet potato fries at Dadeo New Orleans Diner and Bar, a retro 50s style diner.

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Fashion in Old Strathcona is as diverse as the people on the street; businessmen mix with students and buskers strumming guitars, each one expressing their personal style through their clothing, hairstyles, jewelry and, in many cases, body art. Personally, I wore a new hat. I’ve been told that I need to protect the area that’s receiving radiation from the sun but not to use any products, including sunscreen, on it. That’s a little tricky considering that it’s part of my face and neck. A floppy, wide-brimmed hat seemed to be the answer to my dilemma. Though the wind threatened to steal it away, you can see that it did the job rather well.

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Look what drove into my picture!

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Contrasting towers!

Exploring close to home

Though we’ve climbed Mt. Fuji and the Great Wall of China, cruised Vietnam’s spectacular Halong Bay and swum in the Grotto on the island of Saipan, there are plenty of things right here in Edmonton, the city closest to our home, that we haven’t done. When we come to the city, it’s usually a day trip filled with mundane activities like medical appointments and shopping, but this time is different.

This time we’re in Edmonton from Monday to Friday for six weeks in a row while I undergo radiation treatment. Most days, we’re in and out of the clinic in less than an hour. That leaves lots of time to do and see the things that we haven’t taken time for in the past. Essentially, we’re playing tourist close to home.

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The North Saskatchewan River, one of Canada’s most historic waterways, winds its way through Edmonton on its journey from the Columbia Icefield, high in the Rocky Mountains, to the Hudson Bay. Edmonton’s river valley comprises over 20 major parks and attractions and forms the largest expanse of urban parkland in North America. With over 150 km of well-maintained trails, the river valley provides a unique opportunity for city dwellers and visitors to escape the city without ever leaving it.

IMG_3823After today’s treatment, we spent about an hour walking in the river valley, something we had never done before. Though we started off near a high traffic area, the further we walked, the more the noise of the city faded into the background. It was soon replaced by birdsong and the chatter of squirrels likeIMG_3826 this little fellow who protested loudly when we came too close.

Further along the trail, we heard an unfamiliar sound; the huff and puff of Fort Edmonton’s steam train! Though we couldn’t see it through the trees, we were passing by Canada’s largest living history museum, just one of the many attractions found in the river valley.

The confluence of Whitemud Creek and the North Saskatchewan River

The confluence of Whitemud Creek and the North Saskatchewan River

I’ve always admired cities with well developed and accessible green spaces and I’m glad we finally took the time to explore a bit of Edmonton’s!

What are you reading?

“The more that you read, the more things you will know. The more you learn, the more places you’ll go.”

Dr. Suess

I’ve been an avid reader for as long as I can remember. Bookstores and libraries are two of my favourite places but when I was recently asked who my favourite author is, I couldn’t answer. I had to be honest and say that I don’t have one. There are simply too many to choose from!

As I’ve mentioned in previous posts, my favourite novel is The Bridges of Madison County by Robert James Waller and the nonfiction book that has impacted me most is Half the Sky: Turning Oppression Into Opportunity For Women Worldwide by Nicholas D. Kristoff and Sheryl WuDunn.

As Dr. Suess so wisely mentions, books can take us places we might never go. I’m presently in the middle of reading Behind the Beautiful Forevers by Pulitzer Prize winning reporter, Katherine Boo, which has carried me into the slums of present day Mumbai, India. Next on my list is The Know-It-All: One Man’s Humble Quest to Become the Smartest Person in the World by A.J. Jacobs. Recommended by my blogging friend, Donloree, the book chronicles Jackson’s experience reading the Encyclopaedia Britannica from A to Z!

My taste in reading is somewhat eclectic and perhaps a bit academic. I don’t care for fantasy, mysteries or thrillers. I’m not averse to romance but I don’t like what I call “fluff” (syrupy, predictable, “happy ever after” stories) nor do I care for the highly erotic. Fifty Shades of Grey is not on my reading list. Though our bookshelves contain a very sizable collection of westerns, those are Richard’s and I’ve never had a desire to read them.

So what do I like to read? First on my list would probably be realistic fiction, true to life human interest stories like the book I’m presently reading. I also enjoy historical fiction, stories that take me back in time. Biographies, autobiographies and other non-fiction books that introduce me to the lives of interesting people in interesting places are also high on my list.

Though I’ll never read the entire Encyclopaedia Britannica, I have read the Bible from cover to cover several times. I consider it the essential guidebook for this journey called life and I read from it almost every day. For reading purposes, I much prefer a chronological Bible that puts the historical narrative in the order that it happened. The version that I’m currently reading is a New King James chronological study Bible that contains lots of notes, articles, timelines and other graphics that give insight into the life and customs of Bible times. They contain information on everything from agriculture to architecture, food and drink to government, and marriage and family to science and worship. I’m thinking that it’s going to take me a long time to get through this one but it’s definitely fascinating.

As a teenager, I went through a science fiction phase but that genre no longer captures my interest and as a long time teacher of upper elementary school, I’ve read a lot of juvenile fiction, some of it very good. Perhaps some of my most entertaining reading these days is sharing children’s books with my grandchildren!

I was disappointed to discover that though I had plenty of time to read while recovering from last month’s surgery, for the first couple of weeks I wasn’t able to focus well enough to escape into a good book! The after effects of seven hours of anesthetic plus the amount of pain medication that I was using left my poor head a bit addled! Fortunately, that has worn off and I’m reading again. We’re off to Edmonton to start my radiation treatments the day after tomorrow and I’ll be taking several books with me.

What do you like to read? Do you have a favourite author?

 

Somewhere between pushy and patient

Very early on in my battle with cancer a dear friend gave me some very wise advice. “Please don’t be afraid to advocate for yourself,” she told me. “You will have to wait at times but there is also a place for you to pick up the phone and ask for results, action, a timeline.”

It’s called being proactive.

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Being proactive falls somewhere between pushy and patient. Pushy is defined as “excessively or unpleasantly self-assertive or ambitious.” Though waiting for appointments, waiting for test results, waiting to find out what’s going to happen next is is a huge part of this journey, I don’t want to be pushy. I don’t want to be excessively or unpleasantly assertive. I don’t want to phone too often and make a complete nuisance of myself but I’m not willing to be overly patient either. Patient means “able to accept or tolerate delays, problems or suffering without becoming annoyed or anxious.” No thanks!  I’m definitely not willing to accept or tolerate unnecessary delays and I do become anxious!

Being proactive is all about balance and it has been especially important since my second cancer was diagnosed. I’m not willing to simply sit back and assume that all the experts involved in caring for my two entirely different cancers are talking to one another and coordinating their efforts. I’m being proactive and advocating for myself. I can’t control the situation or cause things to happen but I can ask questions and I can ensure that everyone involved in one part of my care knows what’s going on in the other part.

Regardless of how proactive I am, waiting is still a big part of the process, but lately things seem to have sped up. Surgery was just three weeks ago. I’ve already been back to the city for two appointments since then and I have another one tomorrow. Due to the size of the tumour that was removed and the fact some cancer cells may have been left behind, the next step is 30 radiation treatments over a six week period. At tomorrow’s appointment, molds will be taken to make a mask that will ensure that my head remains in the correct position and the radiation targets exactly the right spot each time. Because radiation to the jaw can cause dental problems and I need to learn how to prevent that from happening, I also have a dental consultation booked for the end of next week. Radiation will begin soon after that.

In the meantime, treatment of my neuroendocrine tumours is on hold, but a CT scan on June 12 will tell us whether or not there has been any change and I will be proactively advocating for resumption of a regular treatment schedule as soon as radiation is finished.

Being proactive doesn’t come naturally to me, but it’s getting easier all the time and it gives me some sense of control in a situation that is largely out of my hands.

In what areas of life have you had to be proactive?

Mesothelioma Awareness – Speaking out against a dreadful wrong!

Picture 2This is the first time I’ve written a blog post on request. When Heather Von St. James contacted me and I looked into the reason behind her appeal, I knew it was something I had to do! With her shock of silver hair and vibrant smile, Heather looks like the picture of health, but that hasn’t always been the case. At 36 years of age, just 3 1/2 months after the birth of her only child, she was diagnosed with cancer and given 15 months to live. That was in November of 2005. Miraculously, over eight years later, she is alive and well and has dedicated herself to increasing awareness of mesothelioma, her particular kind of cancer.

I really don’t like the word cancer; not just because of the fear that is so closely associated with it, but because it is such vague and nebulous term. Cancer is not just one disease, but many. It is a term that is used to describe any disease in which abnormal cells divide without control and are able to invade other tissues. There are over 200 kinds of cancer!

Like my neuroendocrine tumours (NETS), mesothelioma is a rare cancer that is difficult to diagnose because, in the early stages, it can be easily mistaken for other illnesses. Symptoms are all too often ignored or dismissed by people who are inclined to attribute them to common every day ailments. That’s where the similarity ends, however. While NETS is a slow growing chronic cancer, mesothelioma is aggressive and deadly. The cause of neuroendocrine tumours is unknown but this is also not the case with mesothelioma. Not only is the cause known, it is preventable!

The only known cause of mesothelioma is exposure to asbestos. Heather never worked with asbestos, but her father did. Secondhand exposure as a child was enough to make her sick decades later. Because of the disease’s latency period of 30 to 50 years, it often doesn’t show up until long after exposure.

After reading Heather’s plea for help in spreading the word about mesothelioma and reading up on the disease, I wondered how the situation here in Canada compared to the U.S. where she resides. I was shocked to discover that, after climbing steadily over the past two decades, Canada’s mesothelioma rate is now one of the highest in the world!

Our country’s first asbestos mine opened in 1879. During the late 1800s and early 1900s, an increasing number of mines took advantage of the large asbestos deposits found in Quebec, Newfoundland, British Columbia and the Yukon. Manufacturers began to produce a variety of asbestos-containing products that would be used in Canada and worldwide. While the asbestos industry boomed and mine owners and company executives got rich, workers got sick, suffered from breathing difficulties, coughed up blood and died! Canadian mortality rates among miners were studied as early as the 1920s and evidence exists to show that asbestos company executives withheld negative reports from both their employees and the public. By the 1970s, doctors had declared Canada’s asbestos mining towns to be among the most dangerous places in the world to live, with rates of mesothelioma and other asbestos related diseases increasing. Asbestos opponents and those weary of seeing Canada’s mesothelioma rate rise celebrated in 2011 when  last two remaining mines closed but, because of the renovation and demolition of the country’s aging buildings that used asbestos as insulation, the mesothelioma rate has been rising among construction and maintenance workers. Canada has long resisted a universal ban of asbestos as proposed by the World Health Organization (WHO) and  continues to be a major exporter of asbestos to many countries who do not monitor asbestos exposure or regulate its use.

Is it any wonder that Heather asks us to join our voices with hers in speaking up against such an obvious wrong? For more information on mesothelioma and to read Heather’s story in her own words, visit the Mesothelioma Cancer Alliance.

In everything give thanks

I almost hesitate to post anything today because I’m feeling rather cranky! My surgery went well last Wednesday so what do I have to complain about? Just the fact that my head feels like it’s been used as a soccer ball and a sore throat/earache kept me awake most of the night.

Feeling the way I do this morning, it would be easy to give in to whining and feeling sorry for myself but this is one of those days when I need to remind myself that scripture says

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The little word in  at the beginning of that verse is the reason that I can give thanks today. If it asked me to give thanks for everything, I’m quite certain I couldn’t do it. I certainly couldn’t give thanks for cancer and though I recognize how fortunate I am to live where universal and excellent health care is available, I’m not thankful that I had to have surgery at all, but even in  these circumstances, there is much to be thankful for.

I’m thankful for my hubby who patiently puts up with my restlessness at night and crankiness by day! In some ways, the surgery was harder on him than it was on me. I was out cold, totally unaware of what was going on, but as the hours ticked by, he was the one who was waiting for the surgeon’s call to tell him that things had gone well. I’m thankful for a surgeon who worked patiently and carefully for seven hours straight to remove all the cancer yet leave my facial nerves intact. Thanks to his meticulous effort, my left eye is fully functional and I’m left with nothing more than a crooked smile which will likely improve significantly once the massive swelling subsides and healing takes place. I’m also thankful for the wonderful friends and neighbours who have been showering us with meals; pots of homemade soup, fresh buns and other soft foods that I can handle. We are so blessed!

But do you know what else I’m thankful for today? I’m thankful for the guys who invented the drinking straw!  After seven hours with a breathing tube down my throat, it is SORE and it seems to be taking a long time to heal! Drinking lots of fluids helps but that’s hard to do when your bottom lip doesn’t work right!

Apparently, the first drinking straws were used more than 5000 years ago! The oldest one in existence, a gold tube inlaid with precious blue lapis lazuli, was found by archeologists exploring an ancient Sumerian tomb that was dated 3,000 B.C. On the other side of the globe, Argentinian natives long used similar wooden or metal devices, known as bombillas, to strain and drink their tea. Our humble paper and plastic straws had their beginnings in the U.S. In the 1880s, using rye grass as straws had become popular but their tendency to become mushy when wet and the grassy flavour that they added to beverages, made them somewhat unsatisfactory. It was Marvin C. Stone who came up with the idea of making one from paper. He started by winding paper around a pencil to make a thin tube, then slid the pencil out and applied glue to hold it together. He later built a machine that would coat the outside of the paper with wax. He patented his invention on January 3rd, 1888. In 1937, Joseph Friedman, created the first bendable straw, the type I’m using today.

Come to think of it, I’m even thankful for silly history lessons like this one that provide distraction from my present discomfort and crankiness!

What are you thankful for today?