Author: edebock

Walking the third pathway: living with chronic cancer

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“Have you finished having treatments yet?”

“How many more treatments do you have to have?”

These are questions that I’m asked constantly. When someone has cancer, people usually expect one of two outcomes; either you’re cured or you die. Because two years have passed since my neuroendocrine cancer was diagnosed and I’m obviously still very much alive, people automatically assume that I must fall into the first category, those who beat the disease and move on. Few are even aware that there’s a third pathway. With proper treatment, however, some cancers are considered chronic. Though incurable, they can often be controlled with proper treatment and the patient can live what appears to be a relatively normal existence. That’s the road that I’m on.

“Have you finished having treatments yet?”

No. I’ll probably have to have them for the rest of my life.

“How many more treatments do you have to have?”

That depends entirely on how long I live.

People are usually startled by my responses, but this is the reality that I live with. It’s entirely possible that I’ll eventually die of my cancer, but I could also die with it. All I can say for sure is that, at present, things are going in the right direction. I had another treatment on Tuesday morning and the follow up scans showed that my primary tumour, which is located in my colon, has continued to shrink. In fact, it’s tiny compared to the size it was at diagnosis. That, in itself, was very good news, but we also learned that the largest of the three tumours on my liver has now started to diminish in size and there are no new growths. Obviously, the treatments are working! How long that will continue to be the case, no one has any idea, but we do know that there are new treatments on the horizon and when this one stops working, there will probably be something else that we can try.

So, what’s it like walking this third pathway?

There are plenty of things that I’d still like to accomplish in life and places I’d like to go. Some I’d like to return to and others I want to see for the first time. It may sound surprising, but there hasn’t been a huge sense of urgency to try to cram these things into whatever time I might have left. Perhaps that’s because our focus for the past two years has been largely on fighting, not one, but two cancers; the neuroendocrine tumours (NETS) that put me on the third pathway as well as the completely separate and unrelated cancer that was diagnosed seven months later. With that one out of the way and my NETS well under control now, maybe we can begin to focus more on crossing things off my unwritten bucket list, but the lack of urgency may also be due to the fact that I don’t really sense that my end is imminent. You see, I really hope to be one of the ones who dies with this disease, not of it.

I still plan for the future, but I’ve also been learning to inhabit one square on the calendar at a time. Walking this pathway has definitely given me a greater appreciation for the moment and for the small things in life. I’ve always loved hiking, but the delight that it gave me this summer was greater than ever before. I was simply so thankful to be able to do it! I don’t take things like that for granted anymore.

I’ve always been one who believed in living life to the fullest; now I just have to do that within the confines of my treatment. There are limitations, of course, especially during a week like this one when I’m highly radioactive, but overall, I am blessed to be able to continue living a fairly normal life.

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The colours of cancer

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BreastCancerAwarenessPinkRibbonOctober is Breast Cancer Awareness Month and the world around us is turning pink. Professional football players wear pink booties and gloves, NASCAR drivers dress in pink and drive pink cars, and restaurants serve up pink drinks and even pink burgers! In October anything pink sells; everything from pink vacuum cleaners to pink tools and coveralls. Don’t get me wrong; I have nothing against increasing awareness of the disease that is one of the leading causes of death for Canadian women. It took the life of one of my dearest friends just over nine years ago, but I’m fully behind the “Think before you pink” movement that strives to draw attention to the fact that all is not what it appears to be in the world of pink.

Samantha King is the author of Pink Ribbons, Inc., a 2006 book that examined how breast cancer has become a dream come true for some companies that want to bask in the glow of corporate do-gooding. An associate professor of kinesiology and health studies at Queen’s University in Kingston, King helped popularize the term “pinkwashing” to describe campaigns that flaunt the ubiquitous pink ribbon but have negligible effects on the realities of breast cancer. Some companies use pink ribbon related marketing to increase sales while contributing only a tiny fraction of the proceeds to the cause, or use pinkwashing to improve their public image while manufacturing products that may, in fact, be carcinogenic.

Any company can put pink ribbons on its products. When purchasing cancer awareness products, be a savvy shopper. Check the label or tag and ensure that a percentage of the purchase price is actually going to a recognizable foundation or non-profit organization. Oftentimes, making a direct donation to your favourite cancer charity is actually a better way to go.

Is pink the only colour of cancer though? Absolutely not! In fact, there are awareness ribbons in practically every colour imaginable, each one representing a different cancer. Ovarian cancer is teal, uterine cancer peach, liver cancer emerald green and colon cancer dark blue. Prostate cancer is light blue, testicular cancer orchid, leukemia orange and mesothelioma royal blue.

And what of my cancers? Head and neck cancers are burgundy and white, but that one is gone, hopefully for good. This is the ribbon that I wear:

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The zebra stripe represents neuroendocrine (NETS) and carcinoid cancers. It’s not surprising that we zebras don’t get as much attention as those pink people do. After all, there aren’t very many of us. In Canada, specific numbers for neuroendocrine cancer are not even reported separately, but in the US there are an estimated 8000 new cases each year. Compared to the approximately 294 500 new cases of breast cancer that are expected to be diagnosed in that country in 2015, that’s a very tiny number, but we need awareness too. There are family doctors who have never heard of neuroendocrine cancer. They have no idea what it is, how it’s treated or that it’s incurable. A locum filling in at our local hospital actually questioned whether I had cancer at all!

NETS not pink

Blogs devoted to NET cancer awareness:

https://ronnyallan.wordpress.com

http://walkingwithjane.org

The meaning of dreams

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Most of my dreams seem ridiculous and random. If I remember them at all, I certainly don’t analyze them or try to figure out what they might signify. Others, however, are recurring and do seem to have meaning.

As a child and young adult, I often had gory dreams about having all my teeth pulled or knocked out. When this happened, I’d often wake up with a sore jaw, but little did I realize that I was grinding my teeth during the night! Since I started sleeping with a bruxism splint, I’ve never had one of those dreams again.

For many years, in spite of the fact that I enjoyed my teaching career, in the days leading up to each new school year I had what I called my “school dreams“.  These were dreams in which everything went wrong.  All a teacher’s worst nightmares would visit me as the end of August approached! Though I anticipated the beginning of each new school year with excitement, I recognized that my strange dreams were a symptom of the stress involved in teaching. When these dreams started recurring several years after I retired, however, I was puzzled, but I soon figured out that my brain still equates stress with teaching. Regardless of the cause, it still reacts to higher than normal levels of stress by filling my nights with bizarre school dreams!

Last night, I had a series of unusually vivid dreams. In the first one, I was planning to catch a ferry. Where to, I have no idea, but I arrived early and had time to kill so I parked my car a short distance from the ferry terminal and went for a walk through the town which bore no resemblance to any place I’ve ever actually been. As I admired the historic architecture of the town, I found myself walking with another woman who urged me to explore a path that led up and over a hill between some houses. Knowing that I had a limited amount of time, I was reluctant, but I agreed to walk a little ways with her. Before long, I realized that I had gone too far and was in danger of missing my ferry. I turned around and began to run back to my car. I remember running and running and running, frantically hoping that I wouldn’t be too late. And then I woke up.

I don’t remember the second dream quite as well, but I do recall that I was supposed to be attending an awards ceremony at the local school. Shortly before it was due to begin, I was out on the street chatting with various people who all urged me to hurry home and get ready. How I got there is a bit vague, but I ended up back in an apartment, which was apparently my home, trying to figure out what to wear. As I tried on and rejected one outfit after another, I soon realized that it was only a few minutes until the event was to begin. I became more and more frantic, but I continued trying on and rejecting item after item until I finally woke up again!

Each ensuing dream became more vague than the one before, but there was a common theme. In each one, I was going to be late for something. I couldn’t help but wonder if that meant something and so this morning, I googled “the meaning of dreams”. Apparently, according to several sources, dreams of being late represent feelings about having missed an important opportunity. One so-called dream expert suggested that a person ought to respond to these dreams by asking where in your life do you feel that time is running out or what do you need to do before it does. So, I ask myself, were last night’s nocturnal imaginings telling me something of significance or did I simply eat the wrong snack before I went to bed? What, if any, opportunities have I missed?

With another cancer treatment and it’s follow-up scans coming up next week, a night of school dreams probably wouldn’t be too surprising, but the closest I can come to the lost opportunity scenario is the vague feeling that’s been growing within me lately that perhaps I ought to be doing something meaningful with my experiences of the past couple of years. What that might be, I’m not at all sure.

What do you think? Do your dreams have meaning?

Because I can

/ edebock / 6 Comments

Here in Canada, we are nearing the end of the longest federal election campaign in recent history. When we go to the polls on October 19th, 78 days will have passed since Prime Minister Stephen Harper asked Governor General David Johnston to dissolve Parliament and call a general election. 78 days of rhetoric and sadly, 78 days of name calling and fear mongering. How glad I am that I don’t live in the US where the electoral process goes on for many months!

Regardless of which country you live in, however, when election day finally rolls around, VOTE! Consider the issues, research the candidates, and then VOTE!

Official turnout for our last federal election, held on May 2, 2011, was 61.1%, only 2.3 percentage points higher than the all-time low of 58.8% in 2008! What is the matter with people? Why does 40% of our population fail to cast a ballot? Are we Canadians really that apathetic?

I will vote, if for no other reason than because I can. It’s a privilege that I don’t take lightly. Women before my time fought long and hard so that I could exercise this right. Women like Nellie McClung, well-known advocate and popular speaker on the subject of women’s suffrage in the early 1900s, who said “Our worthy opponents will emphasize the fact that women are the weaker vessel. Well I should think that a woman who cooks for men, washes and bakes and scrubs and sews for her family could stand the extra strain of marking a ballot every four years.”

The United States began allowing women to vote in 1920, after the ratification of the 19th Amendment to their Constitution. Here in Canada, many women voted for the first time the following year, but it wasn’t until much later that all Canadians had the right to vote. Most “people of colour” were prohibited from voting at the provincial and federal level until the late 1940s and it wasn’t until 1960 that every Canadian of age had the right to vote. That’s right! 1960! Prior to that time, aboriginal Canadians were required to give up their treaty rights and renounce their status under the Indian Act in order to qualify for the vote.

While I consider our record abysmal, there are places where the situation is much worse. Women in Saudi Arabia are registering to vote for the first time in history, but keep in mind that they won’t be able to drive themselves to the polling stations as they are still completely banned from driving. They won’t even be able to leave their homes to go and vote without being accompanied by a male guardian!

On election day, get off your butt and VOTE! Don’t make excuses. Don’t be one of the apathetic masses. Vote, if for no other reason than because you can!

canada vote

October!

/ edebock / 10 Comments

“I’m so glad I live in a world where there are Octobers.”
L.M. Montgomery, Anne of Green Gables

October is my favourite month; a bittersweet interlude between summer and winter. Here in Alberta, it arrives amidst a blaze of colour, but by the end of the month, there will likely be snow on the ground. Each golden day is a treasure.

The tiny hamlet of Gwynne, located midway between Camrose and Wetaskiwin, is nestled in a valley that is absolutely gorgeous in the fall. We often take that route on our way to Edmonton, but until today we’d never stopped to explore the area. I recently learned of two hiking trails in the valley, however, and they were today’s destination.

The first, officially called the CPR Canyon Hiking Trail, is a relatively easy 4 km walk along a creek. The name seems apt as the railway follows the creek on the opposite bank and three trains rumbled by while we were hiking. It’s known locally, however, as Chickadee Trail and we soon found out why!

The inquisitive little critters were landing on my outstretched hand before we even took any food out of the pack on Richard’s back. Soon we were sharing lunch!

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There were six geocaches hidden along the trail which added to our fun.

The second trail circled through Pipestone Creek Conservation Lands where we searched out three more geocaches and enjoyed some spectacular views including an oxbow lake.

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There are clearly many more trails criss-crossing the conservation area and we found a lovely little campground close by, so I suspect that we’ll be spending more time there in the future.

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I have no idea how far we walked today, but my knees are telling the tale this evening and it’s time to go soak in a hot bath!

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Hopefully October holds many more days like this one!

What’s stopping you?

/ edebock / 6 Comments

Is there something you’ve always wanted to do, but never tried? Somewhere you’ve wanted to go, but never been? Why? What’s stopping you?

Did someone tell you that you couldn’t and you believed them? Maybe you’ve been wounded by a parent, a spouse or a so-called friend. Maybe you were told that you were worthless or that you’d never amount to anything. Maybe now’s the time to prove those naysayers wrong!

Be unstoppable!

I realize that sometimes there are financial constraints or physical restrictions that make it difficult to achieve our dreams, but sometimes those just become excuses.

My daughter-in-law  had her second major back surgery before she graduated from university and she was diagnosed with rheumatoid arthritis while pregnant with her first child. Six years ago, she was almost bedridden, but on September 12th, she rode her bike 120 gruelling kilometres from Vancouver to Whistler, BC in the RBC Gran Fondo! She has endured more pain in her life than most of us will ever know, but she’s unstoppable!

Robin

Maybe it’s your age that’s holding you back. For some people, the space between “you’re too young” and “I’m too old” is far too short! Pam Lutrell, writer of over50feeling40, one of my favourite fashion blogs, is transitioning into a new career at 62 because she’s unstoppable!

Be unstoppable!

Is it fear that’s stopping you from doing something you really want to do? Perhaps you’re simply afraid to step outside your comfort zone. Michael Jordan, possibly the greatest basketball player of all time, said, “Never say never, because limits, like fears, are often just an illusion.” Yes, fears are just that, an illusion; something we create in our heads that stops us from trying something new or achieving something great. Why not stop the negative self-talk and take a chance?

What is it that you’ve always dreamed of doing?

Be unstoppable!

When my life is over, I’d be happy if my epitaph said, “She was unstoppable!”

Unstoppable

What the heck is vegan leather?

/ edebock / 10 Comments

Lately, I’ve noticed more and more ads and fashion blogs referring to garments and handbags made of vegan leather. Really? What the heck is that? As a lover of words, I was compelled to find out.

Vegans are usually defined as a strict vegetarians who omit all animal products, including dairy, from their diets, but The Vegan Society offers a much broader definition. “Veganism is a way of living which seeks to exclude, as far as possible and practicable, all forms of exploitation of, and cruelty to, animals for food, clothing or any other purpose.” Hence, vegan leather.

In reality, though, vegan leather is nothing more than fake or faux leather by a different name. Pleather, as it was once known, is a synthetic leather usually made out of petroleum byproducts such as polyurethane or PVC bonded to a fabric backing. A few are cork or kelp based. Though once deemed tacky, under its new and classier name, pleather is suddenly seen as eco-chic.

Make no mistake though, the production of these synthetic leathers involves excessive levels of toxic substances and since they aren’t fully biodegradable, they produce micro-particles that are ingested by animals and thus enter the food chain at all levels.

Animal-friendly or not, synthetic leather offers advantages to both fashion designers and consumers. The softer, realistic-looking material is a popular choice with designers as it offers them a flexible, versatile textile to work with; one that can be made to sparkle or shine or even be saturated with a rich or bright shade that no tanning process could mimic. Not everyone in the industry is happy to call the fabric vegan leather, however. Some would prefer to avoid the connotation that their clothing is designed exclusively for animal-cruelty advocates.

Like many consumers, I simply like the fact that faux leathers are a nicely priced alternative to the real thing. I can’t help thinking that the new term sounds overly pretentious though and I’ve also noticed that the so-called vegan leather products that I’ve seen advertised tend to be pretty pricey. Could it be that people are paying more for the sense of superiority that comes with the fancier moniker and the feeling that they’re doing something good? With apologies to William Shakespeare, a faux leather by any other name is just as fake!

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One of my latest thrift store finds. The label says it’s “100% polyurethane with 100% rayon woven backing.” It doesn’t say vegan leather. It doesn’t pretend to be anything it isn’t!

Fall camping

/ edebock / 3 Comments

IMG_5618I’ve always wanted to go camping in the fall; always hoped for just one more outing with the trailer before winter hit. As teachers, it never happened. We were back in the classroom and up to our eyeballs in work by late August or the first week of September. Then, with retirement came several years of helping our friend, Louis, with harvest. I loved being out on the combine, but it meant that there was no time for camping in the fall.

Finally, this year it happened! We packed up the trailer last Wednesday morning and headed for Miquelon Lake Provincial Park, less than an hour and a half from home. Surrounded by the spectacular colours of the season, fall camping was everything I always thought it would be! Though we got caught in the rain while out geocaching on Wednesday afternoon, the clouds soon disappeared and for the remainder of our time the weather was glorious.

Here in Alberta, we don’t get the wide variety of fall colours that are found in eastern Canada, but everywhere I turned I was surrounded by beauty and I took dozens of pictures!

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We found 14 geocaches within the park boundaries, but the highlight of our trip was definitely Friday’s hike. We left the trailhead late in the morning intending to hike 7.3 kilometres, but we’d completed all but 1.5 km of that by the time we stopped to eat lunch! Digging out our trail map, we quickly decided to add what we had originally thought might be a separate hike sometime in the future. In the end, we covered 13.2 km! Considering the fact that just a few months ago, I couldn’t walk more than two km without playing out, I was pretty stoked!

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Those of you who’ve been reading my blog for very long know how much we enjoy exploring old abandoned houses that give us glimpses into life in days gone by. Imagine our surprise and delight when Richard spotted an old brick chimney rising out of the bush a short distance from the trail. Of course, we had to take a closer look! Although the girl manning the park office couldn’t give us any information about the house or its original inhabitants, it was easy to see that the two storey structure and its smaller outbuilding must have been there long before the park was established in 1958.

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Though we didn’t see any of the larger wildlife, including deer, moose and elk, that live within the park, there was clear evidence of their presence along the trails. Plenty of fresh hoof prints and droppings told us they weren’t far off. What we did see were squirrels, muskrat, tiny frogs, a surprising number of garter snakes and an abundance of water fowl. As Miquelon Lake and the numerous wetland areas within the park are located within two of North America’s migratory flyways, flocks of migrating geese honked their way overhead and settled on the lake each evening.

Miquelon Lake is also part of the Beaver Hills Dark Sky Preserve, an an area that has been established to reduce the glare of artificial light and increase the visibility of the night sky. Each evening, as we sat around the fire in the crisp evening air, darkness settled around us and stars filled the sky. What could be more relaxing?

Dare I hope for one more camping trip before winter arrives?

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A little truth and a little common sense please!

/ edebock / 6 Comments

When our daughter was suffering from leukemia in the early 1980s, we were told that if we simply boiled up some pine needles and fed her the resulting tea, she would be well. That was just one of many crazy cures that we were told about, so I expected to be inundated with similar tales when I was diagnosed with cancer two years ago. At first, I was pleasantly surprised not to be told about some magical potion or miracle fruit at every turn, but lately I’ve come to the end of my patience with all the nonsense being circulated through social media!

It absolutely astounds me how many cockamamie stories circulate on Facebook and are reposted by seemingly intelligent people who don’t bother to check the facts first. It’s so easy to do! Just plug a few key words into Snopes.com or TruthorFiction.com and voila! There you have it; the research, the facts, the truth!

These days, it’s the crazy cancer prevention and cancer cure stories that really burn me. Yesterday it was baking soda that would save my life! Really? If it was that easy, do you think there would still be thousands of people dying of cancer every day? According to Cancer Research UK, more than one person dies of cancer every four minutes in the UK alone! Would that be happening if the answer was sitting on the shelf in almost everyone’s kitchen? I don’t think so! With all the time and money that goes into medical research, does anyone really think that the cure for cancer is going to be found floating around on Facebook? Let’s use a little common sense!

Extraordinary claims require extraordinary evidence. YouTube videos and Facebook posts are most certainly not scientific evidence! Where are the clinical trials? Where are the published research papers? If only people would consider the source before choosing to repost something. If it doesn’t come from the Mayo Clinic or another reputable medical institution of that ilk, it probably isn’t true.

Of course, that brings me to my all time most loathed myth, the idea that governments, pharmaceutical companies and even charities are colluding to hide the cure for cancer because they make so much money from existing treatments. How can anyone actually believe that? There are so many ways to debunk that argument that I hardly know where to begin. First of all, it simply doesn’t make sense that pharmaceutical companies would want to suppress a potential cure. Finding a highly effective therapy would guarantee huge worldwide sales. Secondly, why wouldn’t doctors, who often prescribe less expensive generic drugs, use cheap treatments if they were shown to be effective in clinical trials? And then there’s perhaps the most obvious argument; cancer touches everyone. Even politicians, doctors and pharmaceutical executives get cancer. Their loved ones and colleagues die too. They are not exempt! Would they really withhold treatment from their own spouses, parents or children if they knew they could save their lives? Again, I think not!

Perhaps before reposting or passing on an unsubstantiated, too good to be true, miracle cure a person should ask themselves, what if one desperate cancer patient chooses to abandon conventional treatment and try this instead and what if it doesn’t work? Do I want to be responsible for that? Steve Jobs, co-founder of Apple Computer, had the same cancer that I have. He chose to ignore his doctors’ advice and sought out alternative treatments instead. By the time he discovered that they didn’t work and turned back to the doctors for help, it was too late. He was a highly intelligent man with enough money to be able to access the best of treatments available anywhere in the world and he might be alive today if he’d used a little common sense!

There ends my rant!

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Hope and a future!

/ edebock / 6 Comments

It’s been awhile since I wrote an update about my battle with cancer which is, in itself, an indication that things have been going well. There really hasn’t been much to report which is a good thing! Yesterday, we sat down with one of my specialists to discuss the results of recent CT and PET scans. Though we weren’t expecting anything dire, I think we both walked out of his office feeling like a load had been lifted off our shoulders. Yes, the news was that good!

As many of you are aware, I have dealt with two completely separate and unrelated cancers over the past two years. The first good news was that there is absolutely no sign of the acinic cell cancer that was removed surgically and treated with radiation last summer. I have routine follow-up appointments with both the surgeon and the radiation oncologist next week, but I’m certain that they’re going to tell me that everything is fine.

We already knew that my primary neuroendocrine tumour, which is located in my colon, has been shrinking as a result of the radioisotope (Lutetium) treatments that I’ve been having. Yesterday we learned that the other four tumours, three on my liver and one in a lymph node, have not changed in size since diagnosis. That’s a glass half full / half empty kind of statement. While it would be nice to hear that they too are shrinking, the fact that they have not grown and that there are no new ones is actually very good news.

Another indication that the disease is stable, that my tumours are essentially dormant now, is hormone production. Neuroendocrine tumours (NETS) produce serotonin, a hormone that we all have in our bodies. Serotonin is sometimes referred to as one of the happiness hormones because a deficit may to lead to depression, but an excess secreted by neuroendocrine tumours results in carcinoid syndrome which, as in my case, results in symptoms that include abdominal cramping and diarrhea, skin flushing, and periods of rapid heart rate. It can also lead to heart disease and other complications. A 24 hour urine test is used to measure the amount of serotonin in the body. I don’t yet understand exactly what the numbers mean, but I was told yesterday that my level at diagnosis was 150. A year ago, it was down to 69 and now, it’s 42. Apparently, normal is around 40. That would indicate that my tumours are no longer actively producing serotonin which is definitely good news!

So what does all this mean for the future? There is no cure for NETS. Even if my tumours were to disappear completely which happens very rarely, I would not be considered cured, but I am now entering a maintenance phase. For the next two years, I will receive a Lutetium treatment every six months instead of every 9 to 12 weeks as has happened so far. Then, if things continue to go well, we’ll go to a treatment every nine months. Yesterday was the first time we were even told of that possibility!

“I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

Yesterday was definitely a day that gave us hope and a day that gave me greater confidence of a future here on this side of heaven! The battle isn’t over, in fact it never will be, but for now it’s getting easier and that’s enough for me!