Month: May 2014

Somewhere between pushy and patient

/ edebock / 10 Comments

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.

proactive

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!

/ edebock / 1 Comment

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.

Long distance hugs!

/ edebock / 10 Comments

I love hugs and I’ve been receiving lots of them lately; tentative, gentle hugs from friends who are being ultra careful not to hurt me. One friend, a huge teddy bear kind of guy, tells me that he’s reserving one of his giant bear hugs for me and that I can have it as soon as I’m feeling a little less fragile!

I’ve also been receiving lots of long distance hugs in emails and messages from around the world. There are the traditional Xs and Os, representing kisses and hugs, at the end of some of the messages and the more modern brackets ( ) or (( )) in others. I appreciate every one of them.

Today, I received the most unique and perhaps the most special long distance hugs ever. I had a long nap this morning and after lunch, Richard and I decided to try a walk to the post office. It was great to be out and about on a beautiful spring afternoon. There was a parcel card in our mailbox so we stopped into the office to see what had arrived. The post mistress handed me a large brown envelope with a paper heart glued to the front. It was addressed to Gram DeBock and the return address indicated that it was from our grandsons, Sam and Nate, in Vancouver.

“I knew this one was special,” she said. “So I didn’t want to bend it to fit it into your box!”

I can never wait until I get home to open exciting looking mail so we walked across the corner to our little Main Street Park and sat on a bench overlooking Sedgewick’s tiny downtown area while I opened my special envelope. Look what slipped out!

IMG_3758

 

In everything give thanks

/ edebock / 11 Comments

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

images

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?

Meeting Donloree!

/ edebock / 8 Comments

As I’ve mentioned before, one of the perks of blogging is connecting with other bloggers and, in some cases, establishing long distance friendships with them. I first heard of Donloree Hoffman when I read an article in the Edmonton Journal in October 2010.

“Donloree Hoffman is about to do the scariest thing she’s ever done.

She’s going to put on an itsy bitsy teenie weenie purple bedazzled micro-bikini, slip her feet into five-inch Barbie-doll heels, and strut her new lean and toned self in front of some very judgmental people.”

The article’s opening paragraphs captured my attention and I immediately checked out the link to her blog. I’ve been following it ever since.

In the early days, Donloree introduced me to the fascinating world of fitness competition. A leadership coach who is passionate about empowering people to break out of their comfort zone and be the best that they can be, Donloree describes herself as a bodybuilding hobbyist, an avid reader, and a lover of audacious living. She also has a wonderful sense of humour.

Until today, I had never met one of my blogging friends in person but, after spending this morning navigating the maze that is Edmonton’s University Hospital in preparation for tomorrow’s surgery, I did just that! Donloree and I have been trying to connect in person for awhile and this time, it finally happened. When she walked into the Starbucks where we’d arranged to meet, it was like reconnecting with an old friend and we chatted for more than an hour!

IMG_3757_2

I’m very fortunate that Donloree lives in Edmonton, just two hours from home. There are a few other bloggers that I’d also like to meet but they live in more exotic places like San Antonio, Texas and Dubai! That might be a bit more difficult to arrange!

Shoes of hope

/ edebock / 11 Comments

30099481_main

Sometimes a pair of golf shoes is just that, a pair of shoes designed to provide comfort and stability while playing the game of golf. The pair I bought today, however, are much more than that. These shoes, purchased to replace a very old pair that are literally falling apart, are a symbol of hope. Hope that the ugly weather that has been giving us below average temperatures, rain and even snow far into what is normally spring, will someday come to an end but also, hope that the surgery that I’ll be having the day after tomorrow will go well and that I’ll soon be able to get on with life!

I really have no idea how long it will take to recover from the operation to remove a cancerous tumour from my salivary gland. That will depend on how difficult the procedure is to perform, something that even the surgeon can’t determine ahead of time. Regardless of whether I’m only in the hospital overnight or have to stay much longer, I expect to be swathed in bandages for awhile afterward. If you’re out on the Sedgewick golf course and see someone who looks a bit like a mummy wearing shiny new golf shoes, that will be me!