Lone kayaker

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Richard has had a back problem for most of his adult life. Usually when it flares up, it settles down again within a few days, but whatever he did in early July appears to be something different. After weeks of rest, he’s still in pain. When the doctor recently told him no more golf and no kayaking for the rest of the season (we hadn’t even been out in the kayak yet), I was very unhappy! I felt sorry for him, of course. Being inactive is very difficult for him, but I was also sorry for myself! Perhaps that sounds selfish. Maybe it was. After all, I could have shrugged and said, “There’ll always be other summers”, couldn’t I? Not really. I don’t have that luxury. I’m hoping that there will be many more summers, but when you’re walking around with two cancers that aren’t being treated, you really can’t count on next year. You have to live for the moment.

I could golf on my own, but our kayak is a tandem and there it hung in the garage gathering dust. Then I remembered the other kayak; the one we’ve been storing in the back corner of the garage for our son for the past couple of years! It’s so lightweight that I can carry it myself. I could go kayaking after all!

We spent the past four days camping at Camp Lake, less than an hour from home, and I spent many hours out on the water. Sometimes I paddled vigorously, sometimes slowly, and sometimes I simply lifted the paddles out of the water and listened to the silence of solitude.

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I spent lots of time playing with my camera too. I especially love to capture reflections on water.

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In some places the fall colours were beginning to show.

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One of the things that I love about kayaking is the chance to see wildlife in their natural habitat. I didn’t see any larger animals this time, but there were many places like this one along the water’s edge where they obviously come down to drink.

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One end of the lake in particular is shallow and edged with reeds and that’s where the action was.

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I have no idea how many muskrats make Camp Lake their home, but clearly there are a lot of them! For every photo that I captured, many were missed. Even the ping of my camera turning on was enough to startle them. I learned to cover the speaker with my thumb to muffle the sound as I drifted close to them. I’m not sure who was the most surprised when one furry fellow popped up and swam beside the kayak for a couple of metres! Before I could grab the camera, he noticed me and dove beneath the surface immediately disappearing from sight. It was easier to capture the ones that were out of the water.

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I’m hoping for at least one more lone kayaker outing this year, and I really hope that we’re both well enough to paddle together again next year, but at least this summer didn’t go by without some time on the water.

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Too busy for fashion!

LogoI haven’t had much time to think about fashion this week. In fact, I wore the same bright blue t-shirt every morning. It identified me as one of the volunteer staff at Vacation Bible School at our church. Every morning I’ve taken kids from kindergarten to grade 6 on Wild Bible Adventures, telling them the Old Testament Exodus story and teaching them about God’s goodness through interactive, experiential storytelling. I made 24 pounds of playdoh. I created the Red Sea and the Jordan River with sheets of blue plastic and other bits and pieces. I converted the kitchen door into the entrance to Pharoah’s palace and one of the church teens into Pharoah. I scrunched up bits of paper until my hands hurt making hail for the kids to throw at Pharoah. You can bet that they loved that part! It’s been fun and it’s been tiring and it reminded me that even after twelve years of retirement I still love teaching!

Yesterday was a particularly long day. Richard and I snuck out of VBS a bit early and drove two hours to the city to meet with my doctor and discuss possible options for dealing with Cancer #3. Once again, Dr W assured me that papillary thyroid cancer is usually slow-growing and non aggressive. After using ultrasound to determine that mine has not changed noticeably since he last looked at it three months ago, he suggested that simply monitoring it might be the best direction to go. I love the fact that he sees me as a whole person though and that he wanted me to have a part in the decision making process. He was perfectly willing to go ahead and schedule surgery if living with another, different cancerous growth was going to freak me out too much. Since I assured him that it wasn’t and that I trust his judgement, we’ve decided to leave it for the time being and look at it again in three months.

After running a few other errands in the city and stopping for supper on the way home, we were back at the church later in the evening setting up for our final day of VBS today.

So, since I really haven’t had time to write a proper fashion post this week, I’ll simply leave you with a thought provoking quote from French fashion designer, Coco Chanel, who passed away in 1971 at the age of 87, and next week I’ll do my best to get back to writing something more substantial!

Coco Chanel quote

Do you agree? I’d love to know what you think.

How should I wear it?

LogoI’ve written about some pretty serious stuff this week and I really appreciate the many supportive comments both here and on Facebook. Today, however, I’m looking forward to getting back to something more fun… Fashion Friday! In this post I want to share an item that I recently purchased at our local thrift store and solicit your advice on how you think I should wear it. I was hoping to shoot the photos outdoors, but it was pouring rain, so that didn’t happen.

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Other than the $1.50 price tag, what else do I like about this shirt? Almost everything! The dark moss colour is one of my favourite neutrals and is also very popular this season. I love the length, the shirttail hem, and the three-quarter sleeves. The brushed cotton/polyester fabric with just a touch of spandex is comfortable and easy to care for. The epaulettes, the small chest pockets, and the split cuffs add a bit of interest.

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The shirt is also versatile. I can wear it with tons of things in my closet and use it as a topper or on it’s own. I love it over the Breton striped t-shirt shown above, but it would also work well over a plain white tee.

So, what’s not to like? It’s the 15 cm zipper to nowhere in the middle of the back that has me confused. Yup, that’s right. A two way zipper that doesn’t zip anything!

 

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I’m trying to figure out whether to wear it zipped, partially zipped, or not zipped at all.

In these two photos, the zipper is fully closed.

 

With the zipper undone, it’s a more relaxed fit.

 

Now that you’ve seen the possibilities, it’s your turn. How do you suggest I wear it?

PS. The bracelet that you see on my right wrist is not a new accessory. It’s a plastic hospital band that I have to wear for the first week following a treatment to alert emergency workers to the fact that I’m highly radioactive. It provides them with phone numbers to call in order to access information about how to deal with me in an emergency situation. Thankfully, it’s never been needed!

Forgiveness and gratitude

I had my final PRRT treatment (also called radioisotope therapy) today. I’ve been injected with potent radioactive material at Edmonton’s Cross Cancer Institute fourteen times; MIBG twice and then Lutetium twelve times as part of a clinical trial. The clinic staff and other patients seemed to think that reaching this milestone was pretty exciting. In one sense, I guess it was, but it also feels a bit like stepping off a cliff! My neuroendocrine cancer (NETs) has been stable for almost six years, the entire time that I’ve been undergoing treatment. The tumours have not grown or spread. In fact, earlier on there was even some indication that they might be shrinking. I’m happy not to have to go through any more of these treatments and the week of radioactive seclusion that follows each one, but the stepping off a cliff sensation comes from the fact that I’ve now exhausted the best treatment option available. The human body can only withstand so much radioactivity. Even if the government agreed to fund more treatments, the doctors wouldn’t advise them for me. The plan from here on in is to simply monitor my cancer with blood work, CT scans, and clinic visits every six months. Considering the fact that NETs is incurable, that’s a bit unnerving. (I will continue to receive the monthly injections of Sandostatin that control symptoms and may have some effect on the tumours themselves.)

The Cross Cancer Institute is set up to administer PRRT treatments to three patients at a time. We sit together, each of us in a comfortable recliner, in a room set aside for this purpose. The process takes approximately four hours, so naturally we visit and share our cancer stories. I’ve never been with the same patient twice, so that’s quite a few stories over the past few years and each one is unique.

Today I shared the treatment room with a retired school teacher from Victoria, BC and a retired school administrator from a community much closer to my own. How unusual and how interesting that three retired educators ended up in that room together! Our conversation quickly came around to the fact that while we don’t choose many of the circumstances of our lives, including cancer, we do choose how we respond to them. Then the retired principal, an upbeat and cheerful man, made a comment that really resonated with me. He said that he believes that there are two keys to living a happy, successful life: forgiveness and gratitude.

That thought stuck with me throughout the remainder of the day. It’s definitely very true for me. I won’t go into detail, but I have had much to forgive, and in spite of that, I’m the first to admit that I also have much to be grateful for.

After pondering for awhile, I googled “forgiveness and gratitude” and was surprised to find many articles linking the two. Even more surprising to me was the fact that these weren’t Christian or religious writings. The fact that forgiveness and gratitude are positive psychological characteristics that are connected to well-being seemed to be a common theme. Both terms are complex and neither is easy to define.

Forgiveness is a conscious choice or decision to let go of anger, fear, self-pity, resentment, bitterness, hostility, and even hatred resulting from something someone has done to us or something that we’ve done ourselves and to replace those emotions with more positive ones such as peace, love, and joy. Forgiving a person doesn’t excuse what they did. It isn’t really about them at all; it’s about setting ourselves free. It releases us from the negative consequences of unforgiveness which may include anxiety, depression, and even physical symptoms of stress. It liberates us from a cycle of negativity and anger and allows us to open our hearts to gratitude, happiness, and love. I’ve heard it said that unforgiveness is like drinking poison and hoping it will kill the other person. 

Gratitude is a feeling of thankful appreciation for people, circumstances, and situations in life. Grateful individuals feel a sense of abundance, appreciate the simple pleasures of life, and recognize the contribution others make to their well-being.

Forgiveness is probably the more difficult of these two human virtues to put into action, but until we do, I think we’ll find it difficult to experience and express true gratitude. Professor Robert Emmons at the University of California, Davis, suggests that attitude change often follows behaviour change. By expressing gratitude that we may not necessarily feel through simple gestures like smiling and saying thank you, we may actually begin to feel it. The same is true of forgiveness. We may not feel like forgiving a person, but if we choose to act as if we have, we may eventually find that our resentment has faded away and we will, in fact, have forgiven them.

So, what does all this have to do with living with cancer? Obviously my cancers are no one’s fault. Not mine, not anyone else’s. However, if I was still living with unforgiveness, I doubt I’d have the emotional energy I need to deal with the ups and downs of this journey. And what about gratitude? Am I thankful for cancer? Absolutely not! That being said, however, I have so many things to be thankful for! In spite of having just been diagnosed with a third completely unrelated cancer, I feel healthy! I can eat almost anything I want, I can travel, hike, and even do a rope course with my grandchildren! I have an amazing circle of friends, family, and prayer warriors around the world loving me and supporting me and I have a faith that gives me “peace that passes understanding.” Philippians 4:7

Am I the courageous hero that people often tell me I am? No, I’m not, but as we concluded in our treatment room today, I can choose how I respond to my circumstances and I choose to be hopeful and positive. I choose to get on with life even if I feel a bit like I stepped off a cliff today.

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source: clipartfest.com

Give thanks to the Lord, for he is good. His love endures forever.  Psalm 136:1

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.  Ephesians 4:32

 

 

Cancer times 3!

One of the great things about our recent trip to Europe was the fact that for three and a half weeks I was just a Canadian tourist enjoying the sights. I had no medical appointments during that time and no one who saw me would have guessed that I’ve been fighting a little known, incurable cancer for almost six years.

Unfortunately, life isn’t always like that. Less than 24 hours after stepping back onto Canadian soil, I had a needle biopsy of my thyroid. I was visiting family in Vancouver when a call came from the doctor’s office. “He wants to see you,” I was told. I knew immediately that the news wasn’t going to be good. Dr W is a very busy man and he wouldn’t ask to see me without good reason, especially when he knows that I live two hours outside the city.

Since I’m having what will likely be my final PRRT treatment tomorrow morning followed by scans the next day to see if there has been any change to my neuroendocrine cancer (NETs) in the past six months and I’ll also be meeting with those doctors to discuss future treatment options, I convinced Dr W’s receptionist to have him call me. I wanted to know what else I was up against before that discussion took place.

The suspicious looking nodule in my thyroid is indeed another cancer, the third completely unrelated cancer in the past six years. Cancer number two which was located in my left parotid (salivary) gland was diagnosed seven months after the NETs cancer. It was removed surgically followed by six weeks of radiation.

At this point, I don’t even know what this new cancer is called, but Dr W hastened to assure me that it isn’t aggressive and that it is, in fact, quite common in people over the age of 65. Many live their entire lifetime without even knowing they have it. Apparently common practice is simply to monitor it, but since we already know that mine is growing, it may require more than that. I’ll be seeing Dr W next month to discuss options.

My first cancer diagnosis came as as a complete shock and the second one almost as much so. At that point, I didn’t know that second cancers have been reported to occur in 10 to 20% of patients with neuroendocrine cancer. I have no idea what the incidence of third cancers is, but I’m guessing that I’m not the first one to travel this road.

I do know that I’m not stressing out over it. I’m resting in the “peace that passes understanding” (Philippians 4:7). The Lord promised to take care of me at the beginning of this journey and I’m pretty sure He’s still on the job!

At the same time, this might be a good time to remind myself once again what cancer cannot do.

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Milestones

I’m not sure how it happened so quickly, but our youngest grandson will be 5 tomorrow!

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We spent this past weekend in Calgary for an early birthday celebration. On Friday, while Mommy and Daddy were working and big brother and sister were at school, we took him on a lunch date to his favourite restaurant, a McDonald’s with a great Playplace where he burned off a ton of energy after eating his meal.

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It was a weekend full of fun… sledding, skating, colouring, playing multiple board games and hide and seek, and in the early hours of the morning, a tiny boy crawling into bed with me! I’ve long referred to Simon as my velcro boy because whenever I’m around he attaches himself to me like glue. I thought that that might begin to change as he grew older, but so far it hasn’t and I’m definitely not in any hurry for it to!

Turning 5 is a milestone of sorts. Over the coming year, Simon will leave the preschool stage behind and take another step toward becoming a “big kid”. He’ll go to Kindergarten in the fall.

Simon’s birthday is also a milestone for me. In late August of 2013, when I was first told that I had cancer, Melaina was 10 or 11 weeks pregnant. Before we knew what kind of cancer I had, what sort of treatments I might be facing, or what the outcome might be, I prayed very specifically that I would live to see and hold that baby. It was pure joy to be in the delivery room on March 13, 2014 when he arrived and to have the honour of cutting the umbilical cord (his Daddy was there too, but he’s squeamish about such things and was more than happy to have me do it)! I am extremely grateful to still be here to see Simon turn 5 and to enjoy all the fun of being his Gram!

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Thankfully, recent CT scans have shown that my condition continues to be stable. I’ll be having another, and most likely my final, PRRT treatment in June. We have no idea what will come next, but there’s every reason to believe that I’ll be around to see Simon and my other grandchildren celebrate many more birthdays!

Looking in the mirror

LogoWhat’s the first thing you notice when you look in a mirror? If you’re a woman, chances are it’s your hair. That’s certainly true for me. If our hair is a wreck, we feel like a wreck. Right?

Lately, I wasn’t happy with what I was seeing in the mirror. I love my curls, but there was just TOO MUCH hair. I had it trimmed awhile ago, but it grows so fast that it seemed like no time before I was back where I started. It was definitely time for something more drastic, so I decided to do something I’d never done before.

In the past, whenever I’ve tired of long hair, I’ve gone from cascading curls to a pixie cut, never anything in between. The only time I’ve had in-between hair has been when I was in the process of growing it out. This time I decided to opt for a short curly bob.

About three weeks after each of my PRRT treatments, I begin losing what looks like an alarming amount of hair. That goes on for the next few weeks, but unlike patients on chemo, I don’t lose it all. Thankfully, I had very thick hair in the first place, so even with the twice a year thinning, I have lots. I also have natural layers now as the regrowth is at all different lengths. All my hairdresser had to do this week was cut off the excess length and my hair fell into place as if this was the length it had always wanted to be! She was as happy with the results as I was.

Now when I look in the mirror, it’s still my hair I notice first, but I’m happier with what I see!

Looking in the mirror and liking what I see.

On chilly days my neck is missing all that hair though, so it looks like my scarves will be coming out to play more often in the next while!

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Radioactive again

10991307_10153055708750915_6654881605691342497_nI had my 11th PRRT treatment on Monday and once again I’m too radioactive to be in close contact with other people. For a week following each treatment I spend most of my time at home. I sleep in the guest room, have my own bathroom, and stay at least a few feet away from Richard at all times.

There’s nothing funny about cancer and high doses of radiation, but sometimes you just have to laugh. I pose a particularly high risk to pregnant women and children, but since there’s no chance of running into any of them at our weekly senior’s bowling league, I played yesterday but sat apart from the rest of the bowlers. There were some who knew exactly why, but others who were curious. One jovial fellow, noticing that I was sitting alone, commented, “I see you’re sitting back there with all your friends!” I hope he didn’t feel bad when he found out why I was keeping my distance. I thought his comment was funny! Then there are invariably questions about whether or not I glow in the dark! (I don’t) One friend laughed and said I must be a night light! I told him that that must be the reason that I’m not allowed to sleep with Richard! The glow would keep him awake.

In all seriousness though, I have scans the morning after each treatment to determine whether or not there has been any change to my tumours. In the past, I’ve been able to sit down with a doctor immediately afterward to discuss the results, but this time was different. Dr Sandy McEwan, head of the clinical trial that I’ve been part of since 2014 and the driving force behind bringing state of the art NET cancer treatment to Edmonton, has left the program. While I’m sad for myself and the rest of his patients, I’m happy for him that he has been able to relocate to Toronto where he will be closer to family. I knew a couple of years ago when he proudly told me that he’d become a grandpa that that day might come! His departure means that there isn’t time for the remaining doctor to meet with every patient both before their treatment and after their scans. That meant that this time I came home not knowing what they showed. While I was still able to laugh yesterday, the question was there in the back of my mind. Was this the time that the news would be bad?

Thankfully, I wasn’t kept wondering very long. I chatted with one of the program nurses this morning and once again I heard that word that I’ve come to love; stable! There has been no change! Praise the Lord!

NET Cancer Day 2018

November 10 is World NET Cancer Day, a day set aside to raise awareness of neuroendocrine cancer, the disease that I’ve been fighting since 2013.

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Neuroendocrine (NET) tumours can arise in any organ that contains neuroendocrine cells including the stomach, intestines, lungs, liver, pancreas and appendix. While most commonly found in people over the age of 60, NET cancer can affect both men and women of any age. Though NETs is the fastest growing class of cancers worldwide, the symptoms are usually vague and similar to more common health conditions. As a result, NETs is frequently misdiagnosed as anxiety, menopause, Irritable Bowel Syndrome (IBS), asthma, or diabetes.

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Compared to most cancers, NETs is slow growing. It was estimated that I’d already had the disease for ten years when it was detected. I had been experiencing many of the common symptoms which include abdominal cramps, diarrhea, flushing of the skin, pounding of the heart, and wheezing or shortness of breath off and on for at least seven or eight years . Neither I nor my family doctor had any idea why. Like many general practitioners, he had never encountered a NETs patient before.

Almost 50% of patients visit a doctor 5 or more times before receiving a correct diagnosis! A recent study found that 58% of patients have advanced stage neuroendocrine cancer by the time they are correctly diagnosed. There is currently no cure for the majority of NET cancer patients, including me. Neuroendocrine cancers are complex and unpredictable. Once diagnosed, they require an expert and experienced multidisciplinary team of health care professionals to ensure the best possible outcome. Unfortunately, many patients, even in the world’s most developed countries, have difficulty accessing that kind of care.

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So what’s with the zebra? Everyone recognizes the ubiquitous pink ribbon as a symbol of breast cancer, but not all cancers are pink. Medical students are taught when hearing hoofbeats, to think of horses, not zebras, so the zebra was chosen as symbol of our lesser known disease. There are some patients and advocates who think it’s silly and would like to see us stop using it, but I think we need to take advantage of every opportunity to draw attention to our cause and if that includes zebra stripes, I’m all for it.

What can you do to help? You can help us spread awareness by simply reposting this on your blog if you have one or posting a link to it on your Facebook page. My fellow zebras and I thank you!

 

Still stable!

Stable has become one of my favourite words! Not the kind you keep your horses in, but the word that my doctors use to tell me that my cancer has not grown or spread!

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I heard that word again today when I sat down with the doctor to discuss the results of the CT scans that I had back on August 21st. Waiting almost a month was difficult and I admit to having some episodes of scanxiety during that time. It was heaviest as I sat in the waiting room early this afternoon not knowing if the news would be bad or good. I had no reason to suspect that it would be bad; no symptoms to suggest that the tumours might be active or growing again, but the knowledge is always there that that day could come at any time.

When the doctor told us that everything continues to be stable, the load was lifted in an instant and I felt lighter than air! All the way home (a two hour drive) I felt as though, had my seatbelt not been fastened, I might have lifted right off my seat!

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And so I keep on hanging on, living life to the fullest, and praising the Lord!