Cancer

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.

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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!

/ 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!

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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

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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?

Shoes of hope

/ edebock / 11 Comments

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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!

Look Good, Feel Better

/ edebock / 16 Comments

There is no question that when a woman looks good, she feels better.

When I walked into the Cross Cancer Institute yesterday, it was nice to know that I wasn’t there for a test, a treatment or a consultation with the medical team who care for me. This time, I was there for a two hour Look Good Feel Better workshop sponsored by the Canadian Cosmetic, Toiletry and Fragrance Association. The program, which is free of charge to all participants, is designed to help women with cancer feel better about themselves and thus face their illness with greater confidence.

When I registered for the workshop, I was told that I would receive a kit containing a variety of cosmetic and personal care products. I expected a small collection of samples from the various CCTFA member companies but I greatly underestimated their generosity and was completely blown away by what I actually received.

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In addition to many cosmetic companies, Look Good, Feel Better has several other corporate sponsors including Shoppers Drug Mart, Winners, WestJet and The Globe and Mail. Over 1800 volunteer cosmetic advisers and hair alternative specialists give generously of their time to bring the program to cancer care centres across the country. The ratio of volunteers to participants at yesterday’s seminar was almost one to one!

The session started with tips and techniques for properly cleansing skin and applying make-up. I have been meticulous about skin care for many years, cleansing and moisturizing every morning and night, but when it comes to make-up, I’m a minimalist. If I’d joined the recent craze and posted a no make-up selfie on Facebook, it wouldn’t have looked very different from my usual day-to-day appearance. I feel naked without mascara and I often use a bit of blush to add some colour to my otherwise pale complexion but that’s about all unless I’m going somewhere special. Then, I might use a tinted moisturizer and add some eye shadow. When I was teaching school, I always used an under eye concealer but when I retired, the dark circles under my eyes magically disappeared and I quit using it! It was actually fun to follow the 12 step program and put on my full face yesterday and I was quite happy with the results!

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I was a little disappointed that not much was said about the effects that cancer and it’s treatment can have on the skin but I’ve since discovered that the Signature Steps guide that came with my kit contains some of that information. It also includes sections on body care, hair removal, eye care, oral care, nail care, nutrition and exercise, all topics that weren’t covered in the session.

I’ve always said that if I lost my hair to cancer (which I probably won’t), I wouldn’t bother with a wig. I had my head shaved as part of a cancer fundraiser several years ago and absolutely loved it. After the hair alternatives portion of yesterday’s workshop, however, I’m not so sure. There are so many cute wigs to choose from!

Already bald, as the result of chemotherapy, Tracy, like several of the other ladies, entered the room looking pale and apprehensive. As she applied her make-up, her face began to glow. It’s amazing what a difference something as simple as drawing eyebrows onto a hairless face can make! When it was time for someone to volunteer to model the wigs, Tracy raised her hand. As wig after wig was placed on her shiny head and we all oohed and aahed over how attractive she looked in several of them, she truly came to life!

What a blessing it was for each of us to leave a place where we’ve spent some of the most stressful moments of our lives with smiles plastered across our freshly made up faces! Thank you, CCTFA!

Cancer times two!

/ edebock / 31 Comments

Seven months to the day after being told that I have cancer, I heard that dreaded message all over again. I don’t just have cancer, I have two completely different kinds of cancer!

After waiting patiently for three weeks (okay, maybe I wasn’t all that patient), I finally received the results of my biopsy yesterday. The growth in my salivary gland is, indeed, another cancer. Though I don’t have any details yet, I’ve been told that it will be removed surgically. I don’t know when. I don’t know whether follow-up treatment will be required. In fact, the things I don’t know far outweigh the things I do.

We expected this journey to be a bumpy one and I knew that there would likely be a few unexpected curves in the road but I definitely wasn’t prepared for this one! I must admit that I’m beginning to feel a bit like Old Testament Job who endured catastrophe heaped upon catastrophe. Fortunately, I have a much better support system than he had! No one is suggesting that anything I have done or failed to do has brought these troubles upon me and no one, like Job’s wife, is suggesting that I “Curse God and die!” (Job 2:9) On the contrary, I am surrounded by friends and family upholding me in prayer and offering whatever support they can. I also need to remind myself that, in the end, God blessed Job abundantly. I’m still hanging on to the hem of his garment and praying that my story will end similarly!

In the meantime, I’m doing my best to keep on putting one foot in front of the other. There’s still laundry to do, meals to make and sunshine pouring in my window. My brain is a bit fuzzy; taking it’s time absorbing this latest blow, I guess. I found myself having to look up family phone numbers last night that I usually know as well as I know my own!

That brings me to yesterday’s good news. After being rushed to hospital in respiratory failure two weeks ago, my 90-year-old father was discharged yesterday. For the moment, things are calm on the parental front!

 

Where does my strength come from?

/ edebock / 12 Comments

In the six months since my cancer was diagnosed, (yes, it’s been six months already!) many of you have commented on my strength. While I’m both flattered and encouraged by your kind words, I feel I must give credit where credit is due.

The strength you speak of is not my own. I believe with all my heart that it comes from my relationship with the living God, creator of the universe. Oh, it’s true that tough times in the past have made me stronger and I’d be remiss not to mention that I have the support of a loving husband, family, friends and community but ultimately, if it were not for my relationship with God, I’d probably be a basket case by now!

I grew up in a church-going family but by the time I reached my late teens, I’d turned my back on the things I was taught and gone my own way. It wasn’t until I’d made a huge mess of my life that I heard something I’d never heard in all those years of Sunday School and church. I heard about a God who wanted to have a personal relationship with me and that made all the difference in the world! It wasn’t about a religion and following a bunch of old-fashioned rules. It was simply about someone who could take the mess I’d made out of my life and turn it into something beautiful. That’s where my strength comes from!

Does the fact that I have cancer mean that God has forgotten me or worse yet, that he doesn’t exist? Absolutely not! I have no idea why he has allowed this to happen but I am confident that the words of Jeremiah 29:11, “For 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” are as true for me today as they were for the Jews who were living in exile in Babylon in the days of the prophet.

In addition to acknowledging the true source of my strength, I must also admit that I had an amazing example in my oldest daughter who died at the age of five following a 14 month battle with leukemia. She endured so much more than I have with incredible dignity and grace. Though her wee body was ravaged by chemotherapy and radiation, her faith never wavered! She certainly knew where her strength came from and her legacy lives on in those whose lives she touched. I am inspired to fight the fight as well as she did!

Ready to go home after an 8 weeks stay in hospital

Ready to go home after an 8 week stay in hospital

Riding the roller coaster again

/ edebock / 9 Comments

Cancer is definitely a roller coaster ride! Yesterday was up and today is back down again.

I had my second mIBG treatment on Friday. When Dr. MacEwan, nuclear medicine radioisotope specialist at the Cross, entered the room for our pretreatment consultation, he started by thanking me for contacting my MLA about the delay in getting government approval for the lutetium clinical trial. It made a big difference, he said. In fact, the trial has received approval and is up and running now but there are a few hoops left to jump through before they can begin taking on new patients like myself. In the meantime though, the clinic is working overtime treating those patients who were receiving lutetium before the government cut its funding.

Though lutetium might still be my better option, yesterday’s post treatment scan showed that the mIBG appears to be working. There was no indication that the cancer had grown or spread. That was great news and we rode it to the top of the roller coaster!

Then the phone rang this morning. It was Dr. MacEwan calling with the results of the PET scan that I had before Friday’s treatment. He had ordered the scan in hopes that it would shed some light on what it was that had previously been found in the left side of my face. Apparently, it revealed that there is a growth of some sort in my salivary gland. That didn’t come as a complete surprise to me as I’ve been feeling swelling and tenderness there for some time. Dr. MacEwan is quite confident that it isn’t related to my other tumours, however. He suggested that there are a number of possibilities, many of them benign. Though he did his best to reassure me that it likely isn’t anything to be too concerned about, I felt the roller coaster begin to descend again.

After discussing options, including simply keeping an eye on it, we agreed that a needle biopsy to determine exactly what we’re dealing with would be a good idea. I’ll return to the Cross for that in about a month’s time after I’ve had time to fully recuperate from Friday’s treatment and my body has rid itself of most of the radioactivity. I have a lot of confidence in Dr. MacEwan and I feel certain that he wouldn’t intentionally give me false hope so, though I’m not feeling at the top of the roller coaster anymore, I haven’t crashed either.

It’s an ordinary common variety head cold that has me feeling really down today! 😦

How am I doing?

/ edebock / 11 Comments

“How are you doing?”

I’m asked the question often and I really don’t know how to answer! The short answer is, “I’m feeling fine and able to live a normal life right now and for that I’m very thankful!”

I know there are some of you, however, who want the long answer. Other than a sensation in the left side of my face that doesn’t feel quite right, I really am feeling fine but I have no idea what’s happening on the inside. Not knowing whether the cancer is growing and spreading or if it’s been arrested by the treatment that I had in November is somewhat disconcerting but it’s the growth in my face that concerns me the most because we know that it wasn’t receptive to the mIBG.

I’ll be back in Edmonton on January 31 for more tests and another treatment so I hope to have more answers after that. Because I tolerated the last treatment so well, I don’t even have to stay in the lead lined room this time! Instead, I’ll be receiving my treatment as an outpatient. I’d feel more confident if I knew that it was going to be lutetium instead of mIBG though. That was the original plan but the government hasn’t given final approval to the clinical trial yet. Since I don’t know where the hold up is, I’ve written to both my MP and my MLA asking them to look into the matter. As I pointed out to them, it may only be paperwork to those who are dealing with it at the government level but it’s a matter of life and death to people like me! Both their offices immediately forwarded my concern to their respective health departments but I’ve heard nothing more!

In the meantime, I’m grateful that I can live a very normal life. With the exception of blood tests at the nearby hospital every second Friday and a Sandostatin injection here at home every 28 days, my schedule is much the same as it’s always been. I’ve suffered absolutely no ill effects from either the mIBG or the Sandostatin, my energy and appetite are unaffected and I’m sleeping well. I do suffer from bouts of anxiety but thankfully, they haven’t been too frequent. My biggest regret is not being able to take a role in our drama club’s upcoming production of Agatha Christie’s murder mystery, And Then There Were None, because the upcoming treatment will render me too radioactive to be in close contact with other people for the final two weeks of rehearsal.

I often find January a long and dull month but getting back on track physically has helped a lot. Over the past three weeks, I’ve walked 12 miles (almost 20 km) on the treadmill and since the weather has been unseasonably warm, we’ve also done some walking outside. With all the freezing and thawing, however, it’s pretty treacherous out there right now and the treadmill is a lot safer. I’m also back to three full weight lifting sets three times a week. After almost a year long hiatus, I started with what seemed like ridiculously small weights but I’ve already started increasing them. Sadly, there’s still a bulge around my middle and the best I can say for my weight is that it hasn’t continued to climb but I know that the exercise is contributing to my overall feeling of well-being and I’m determined to keep it up.

So, to those who’ve been asking, I hope this answers your questions and to those who’ve been praying for me, thank you so very much! I’m still hanging on to the hem of his garment and asking for a miracle!