NETS

Fine, thanks!

/ edebock / 6 Comments

It’s been quite awhile since I posted an update about my health. That’s because there really hasn’t been anything new to report. For someone with two kinds of cancer, that’s actually a very good thing, but I know that there are those of you who want to know what’s going on, so here’s the latest.

It’s already been over six months since I had my final PRRT treatment. Other than monthly injections of Sandostatin that are mainly meant to control symptoms, I’m not presently receiving any treatment for my neuroendocrine tumours (NETs). That’s a bit disconcerting, especially when more than one fellow zebra that I’ve come to recognize through a Facebook support group has succumbed to the disease in recent months. It’s really hard when one of those announcements shows up in my news feed.

On the other hand, I’m feeling 100% healthy, so most days it’s easy to ignore the fact that there are things lurking inside me that shouldn’t be there and that could begin to grow or spread at any time. I’m blessed to be able to live a full and productive life. I’m lifting weights again this winter and I’ve recently dusted off the treadmill and started using it again. If anything, I’m feeling better and stronger than I did six months ago.

A week before Christmas, I was in Edmonton for CT scans and blood work to find out if I’m really as healthy as I feel and yesterday we met with the doctor to get the results. Sometimes I suffer from a few days of scanxiety before an appointment like this one, but this time I felt completely at ease. I just kept reminding myself that God promised to take care of me over six years ago when I was first diagnosed and He has been faithfully doing that ever since. There’s no better place for me to be than in His hands.

When we sat down with the doctor yesterday all I really needed to hear was one word. Stable! Nothing has changed. No growth, no spread! Nothing to worry about. So, unless I begin to experience symptoms (which I haven’t since treatment began), we go through the same routine six months from now and hopefully receive the same good news again… and again… and again.

The CT scans reveal very little about my thyroid cancer which is entirely different and unrelated to my NETs. For news about that one I’ll have to wait until early April when I see that doctor again and he uses ultrasound to take a closer look and measure whether or not there’s been any change.

In the meantime, when you see me and ask, “How are you?” if I answer, “Fine, thanks!” that’s because I really am!

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Canada’s going black and white for NET Cancer Day!

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November 10 is World NET Cancer Day, a day set aside to raise awareness of neuroendocrine cancer, the uncommon disease that I’ve been fighting for the past six years. It’s our day to be heard by decision makers, health professionals and the general public. In addition to raising awareness, we want to encourage more funds for research, treatments, and patient support; and to advocate for equal access to care and treatment for NETS patients around the world.

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Zebra stripes symbolize how this rare cancer can go undetected for many years. Medical students are taught when hearing hoofbeats, to think of horses, not zebras. Neuroendocrine tumours are difficult to diagnose. Though they are the fastest growing class of cancers worldwide, their symptoms are usually vague and similar to more common health problems.  Many family doctors have never encountered a NETs patient. When presented with symptoms like stomach pain and diarrhea, they naturally think of things like Irritable Bowel Syndrome, Crohn’s Disease or lactose intolerance. They think of horses, not zebras. As a result, NETs is frequently misdiagnosed.

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It would appear, however, that through the tireless efforts of NETs patients and advocates, we’re beginning to be heard. This year on November 10, the following landmarks across Canada are lighting up in black and white for NET Cancer Day!

  • City Hall  –  Vancouver, British Columbia
  • High Level Bridge  –  Edmonton, Alberta
  • Calgary Tower  –  Calgary, Alberta
  • City Hall  –  Lethbridge, Alberta
  • CN Tower  –  Toronto, Ontario
  • City Hall Towers  –  Toronto, Ontario
  • Niagara Falls  –  Niagara Falls, Ontario
  • Hamilton Signature Sign  –  Hamilton, Ontario
  • Tower of Olympic Stadium (Parc Olympique)  –  Montreal, Quebec

If you’re near one of these locations on Sunday, I hope you’ll stop, take a photo, and post it on social media with the hashtag #LetsTalkAboutNETs @cnetscanada. Every bit of exposure helps raise awareness and may contribute to someone getting a quicker diagnosis.

 

 

Crazy (old) sock lady

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LogoI’m a long-legged 5’8″ tall. For much of my life I worried about finding pants that were long enough to ensure that my socks didn’t show. Then along came ankle length cropped pants. Suddenly everyone’s ankles were showing. It took me awhile to warm up to the trend, but it really has made life easier for me.

I usually wear white sports socks with my jeans and other casual pants and black socks when I want a somewhat dressier look, but when I was cleaning out my drawers recently I realized that I’ve gradually accumulated a fairly sizeable collection of patterned socks. There are certainly much more colourful and fanciful pairs available, usually worn by gals who are several decades younger than me, but once in awhile it’s fun to look down and see something funkier than plain old black or white.

Some of my patterned socks, like these two weather themed pairs, are quite subtle. I’ve obviously worn the snowflake ones on the left a lot as they’re almost worn out. You can begin to see my gold toenail polish shining through!

These are definitely bolder! Both pairs were gifts from my daughter-in-law. There’s a story behind the zebra print pair on the left that make them very special to me. Robin is a long distance cyclist. She rides with a club that expects members to be able to ride at a minimum speed of 23 km/hr for at least 50 km and has taken part in many longer races and fundraising rides. If you’ve been reading my blog for very long, you know that I have neuroendocrine cancer (NETS) and that the zebra is our symbol. Robin wore the zebra socks for the first leg of a 2 day fundraising ride for cancer and then gave them to me (freshly washed, of course!)

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While zebra stripes hold special significance to me as a NETS patient, the giant panda is my favourite animal. Apparently Santa Claus knows that as this pair was in my Christmas stocking last year.

When we lived in Japan, I discovered that I love wearing toe socks which are very popular there. I brought several pairs home with me. I don’t wear them very often only because they’re a bit of a bother to put on, but once on they’re warm and comfortable. We were in Japan to teach English and I specifically bought this pair to wear to my Saturday morning preschool classes. Teachers and students alike take their shoes off before entering the classroom, so these were perfect for my little ones who were learning to count in English. They loved them!

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I didn’t realize until I started preparing for this post that almost all my patterned socks are in shades of black, white, and grey. Clearly, if I’m going to become a crazy (old) sock lady, I’ll have to invest in some coloured ones!

What about you? Do you wear patterned or brightly coloured socks? Would you?

Zebra stripes, more than just a fashion trend

/ edebock / 11 Comments

LogoIn August 2013, I was diagnosed with neuroendocrine cancer (NETS). In August of this year, I attended a cabi party and treated myself to a zebra print top from the Fall 2019 Uniquely Us Collection. Those might seem like two completely unrelated random facts, but they aren’t.

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The zebra is the symbol of neuroendocrine cancer. Neuroendocrine tumours are difficult to diagnose. The symptoms are usually vague and similar to more common health problems. Many family doctors have never encountered a NETS patient. When presented with symptoms like stomach pain and diarrhea, they naturally think of things like Irritable Bowel Syndrome, Crohn’s Disease or lactose intolerance. Flushing, especially in women of a certain age, makes them think menopause, not cancer. Medical students are taught “when hearing hoofbeats, think of horses, not zebras.” Neuroendocrine tumours are rare and therefore they are considered to be zebras.

Some NETS patients and advocates think the zebra symbol is foolish, that it trivializes the grave nature of our disease, and would like to see us stop using it. I disagree. 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!

Since my diagnosis, I’ve noticed zebra stripes everywhere! As I mentioned in last Friday’s post on trends for fall 2019, the zebra motif is particularly popular this season, but animal prints never go out of style and the zebra has been around for a long time. I’ve seen zebra t-shirts, zebra leggings, zebra jeans, zebra pjs, and zebra bras. I’ve also seen zebra handbags, zebra luggage, and even a zebra golf bag.

I remember trying on a darling zebra dress a couple of years ago, but I didn’t buy it. Like most zebra garments, its stark black and white pattern wasn’t flattering on me. With my pale Spring complexion, I look better in warmer tones. That’s why my new cabi top is so perfect. With its creamy vanilla background and chocolate ganache stripes (doesn’t that sound yummy?) it’s perfect for me.

With soft flutter sleeves, the top is a good stand alone piece for the occasional warm summery day that we enjoy at this time of year, but worn under sweaters and jackets, it will transition well into fall and winter. When worn alone, underarm insets provide good armhole coverage. While the neckline isn’t immodestly low, it leaves enough décolletage exposed to nicely frame a statement necklace. The top looks great tucked in, worn loose, or belted.

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I even tried mixing animal prints. Because both prints are within the same colour family, I think it works!

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For today’s photo shoot, I wore my DIY frayed white jeans. Later in the season, I’ll pair the zebra top with darker pants or skirt, but obviously I don’t adhere to the antiquated don’t wear white after Labour Day rule!

And what am I wearing on my feet, you ask? A pair of flip flops that I bought for $5 at Walmart’s end of season clearance sale. They perfectly match my golden summertime toes!

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Forgiveness and gratitude

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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!

/ edebock / 30 Comments

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

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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!

Radioactive again

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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

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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!

/ edebock / 14 Comments

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!