NET Cancer Day 2017

Net Cancer DayMy weekly Fashion Friday feature is taking a break today as I have something much more important to share. 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. Those of us who have been affected by NETS (neuroendocrine tumours) hope that for today our voices will rise above those of all the more well-known and prominent diagnoses. Today is 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.

So as not to disappoint those of you who came looking for a fashion post, here’s what I’m wearing today… my CNETS Canada t-shirt. I don’t usually wear graphic tees, but the message on this one is a vital one.

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If you don’t suspect it, you can’t detect it. 

So what’s with the zebras? 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. Hence, the zebra became our symbol.

As with all cancers, early diagnosis is important. Sadly it doesn’t happen often. If the initial tumour is found before any secondary growths occur, it can often be removed surgically and the patient is considered cured. Once it has spread, however, the disease is incurable.

NETS arises from neuroendocrine cells which can be found anywhere in the body. The most common types are found in the lungs, bronchi, thymus, pituitary, thyroid, adrenal glands, intestines, pancreas, appendix, and rectum. They may also occur in other areas including the ovaries, cervix, testicles, and spleen. NETS is a slow growing cancer that is often misdiagnosed. By the time a correct diagnosis is made, the cancer has often spread. In fact, 60 to 80% of NET cancer patients are diagnosed with advanced disease.

My primary tumour was in my colon. At the time of diagnosis, I also had three tumours on my liver and one in a lymph node. It was estimated that I had already had the disease for ten years when it was detected quite by accident! Off and on for at least seven or eight years I had been experiencing most of the common symptoms which include abdominal cramps, diarrhea, flushing of the skin, pounding of the heart, and wheezing or shortness of breath. Neither I nor my family doctor had any idea why.

Today coffee shops across Canada and around the world, including The Wooden Spoon here in Sedgewick, will be raising awareness about NETS by using special coffee cups bearing the slogan “Lets talk about NETS” and handing out promotional material to help educate their customers about the disease.

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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. Thank you so much!

 

 

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Good news!!

Good news

Four years post diagnosis, there are times when I almost forget that I have an incurable cancer. It’s no longer the first thing I think of when I wake up every morning and I’m sure there are days when it doesn’t even cross my mind.

Then there are days like today; days when it jumps to the forefront again. This morning started with CT scans of my head, neck, chest, and abdomen. Several hours later, we sat down with my doctor to discuss the results. I had no reason to anticipate bad news, but we’re fully aware that at any time the treatment could stop working. New growths could appear or tumours that have shrunk could start growing again. Someday, we probably will receive that kind of news, but not today!

Today, my doctor called me a “poster child” for the PRRT treatment protocol that I’ve been on since September 2014. He’s as delighted as we are with how well it’s been working for me. The largest tumour on my liver is noticeably smaller today than it was six months ago. The other remaining tumours appear unchanged and there are no new growths!

Quality of life is an important factor in cancer treatment and Dr. MacEwan is always delighted to hear that mine continues to be superb. It’s only days like this one that remind me that I have cancer! The rest of the time I’m busy living life to the fullest and with utmost gratitude to my amazing medical team, my many faithful praying friends, and the God who promised to take care of me on this journey.

Wink!

It’s Wink Day again today, a day set aside by the Canadian beauty industry to bring awareness to the appearance-related effects of cancer. For over 20 years, the industry has helped tens of thousands of Canadian women undergoing cancer treatment look and feel like themselves again with programs such as Look Good Feel Better and FacingCancer.ca.

Last year and the year before on Wink Day, women were encouraged to post pictures and videos of themselves wearing blue eyeshadow (with the hashtag #winkday) as a way of raising awareness of the Cancer Blues. The Cancer Blues is a term used to describe the emotional distress caused by cancer and its treatment, an often ignored consequence of the disease that can seriously affect a person’s ability to fight and thrive through the ordeal. On both of those occasions, I happened to be in Calgary visiting my daughter, so we both took part.

This year they’ve dropped the blue eyeshadow and are simply asking women to post pictures of themselves winking and share who it is that they’re winking for. It could be a family member, friend or acquaintance; anyone who is experiencing the effects of cancer treatment. I decided to wink for neuroendocrine tumour (NETS) patients worldwide. Since the zebra is our symbol, here’s my attempt at a zebra wink!

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The dots keep disappearing!

My life is broken into 6 month, 3 month, and 28 day units with a treatment every 6 months, a scan every 3 months, and an injection every 28 days. Last Tuesday, was treatment day followed by a scan early the next morning. I usually get the results right away, but this time the doctor wasn’t going to be in until later in the day and because no one was expecting anything worrisome, it was suggested that I not wait around to talk with him. Instead, I got the results over the phone today and they were definitely worth waiting for!

Six months ago, we heard the good news that one of the five tumours that I had at diagnosis was no longer showing up on the scan. There were only four black dots instead of five. This time, apparently there are only three! Another one seems to have disappeared! The primary (original) tumour in my colon as well as one of the three on my liver are no longer visible! That doesn’t necessarily mean that they’re gone. They could be, but what we do know for sure is that, at the very least, they’re so dead that they are no longer absorbing any of the radioactive substance that I’m treated with! In addition, two of the remaining three tumours are smaller than they were 6 months ago! That’s a lot of exclamation marks, but that’s a lot of good news!

My cancer is still considered incurable but when we spoke with the doctor prior to Tuesday’s treatment, he did tell us that people who get as far as I have (8 treatments) with this kind of success seem to have a very good chance of living a quality life for a long time. That’s a pretty vague prognosis, but it’s about the best they can say at this point and it’s good enough for me. It’s called hope; a lot more hope than I had a couple of years ago!

I would be remiss not to mention that though I have utmost appreciation for the medical advances that have brought us to this point and for those who are involved in providing my care, I also serve a miracle working God “who is able to do immeasurably more than all we ask or imagine” and I give him full credit and glory for today’s good news! (Ephesians 3:20)

Fighting the third enemy

On February 7, shortly before our trip to Mexico, I had routine PET and CT scans to check on my neuroendocrine tumours (NETS). Diagnosed in September 2013, they are Enemy #1. NETS is a little known, slow growing cancer that’s usually considered incurable. Fortunately, in my case, treatment has been successful in shrinking the tumours and controlling the symptoms related to the hormones that they produce. For the most part, I feel 100% healthy and I’m able to lead a normal life.

Enemy #2 was a second completely unrelated cancer discovered in one of my salivary glands in March 2014. After seven hours of surgery and six weeks of radiation it was gone.

So what is Enemy #3?

Fear is not usually part of my vocabulary. I’ve placed my life in the hands of the creator of the universe and I trust Him completely. For the most part, I’ve held onto His promises to take care of me and I’ve experienced great peace, but there is an adversary who does his best to shake that confidence. He, or at least the anxiety that he instills, is Enemy #3.

Anxiety often begins as a little thing, but it feeds on itself. That’s what happened to me over the past couple of months and by this morning, when the phone finally rang to give me the results of last month’s scans, I was approaching a full-blown case of scanxiety.

When you have or have had cancer, it’s easy to start second guessing every ache or twinge and wondering if it’s related, if it’s a sign that something’s going wrong. That’s what happened this time. Back in January, I had a cold. It wasn’t even a particularly bad cold. It started in my sinuses, moved briefly into my ears and then settled in the lymph nodes in my neck. I knew that that’s a pretty normal scenario and that it can take awhile for the swelling and discomfort to dissipate, but I began to worry. When I’m stressed or anxious, I carry the tension in my jaw, neck and shoulders. I’m sure that that didn’t help. Add to that the fact that even almost three years after surgery, nerve damage to my face and neck is still gradually repairing itself. Sensations are constantly changing and feeling is returning where only numbness has been. I don’t even know what my neck is supposed to feel like anymore! Foolishly, I started wondering if maybe I was actually experiencing a recurrence of Enemy #2. Logically, I knew that that wasn’t the case, but Enemy #3 is insidious, sneaking doubts in where they don’t belong.

Then came Mexico. I relaxed, had a wonderful time and forgot all about my neck! On the way home, we spent a couple of days with grandchildren. The two year old, who attaches himself to me like velcro, had a nasty cold. Not surprisingly, I started to experience minor cold symptoms again and with them came a recurrence of the swelling in my neck. Enemy #3 started to poke and prod again.

Long story short, however, this morning’s phone call brought good news. Enemy #1 is still entirely stable. There’s been no growth or spread of my neuroendocrine tumours. Better yet, there’s absolutely no sign of Enemy #2; nothing unusual growing in my neck!

What a relief! Regardless of how weird my neck might feel, I can get on with living life. I will continue hanging on and not let Enemy #3 overcome me!

 

Let’s talk about NETS

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12,000 to 15,000 Canadians are estimated to have a rare cancer called neuroendocrine tumours (NETS). I am one of them. Today is the day for our voices to rise above those of all the more well known and prominent diagnoses and be heard.

November 10 is World NET Cancer Day, a day set aside to raise awareness of this little known cancer among decision makers, health professionals and the general public; to encourage more funds for research, treatments, and patient support; and to ensure equal access to care and treatment for NETS patients around the world.

Today coffee shops around the world will be raising awareness about NETS by using special coffee cups bearing the slogan “Lets talk about NETS” and handing out promotional material to help educate their customers about the disease.

 

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Perhaps you drank your morning coffee from one of these. Black and white like the zebra that is used as the symbol of our disease, our hope is that they will draw attention to and begin conversations about this increasingly common, but poorly understood cancer.

There are several key messages that we would like to highlight today. First of all, as with other cancers, early diagnosis is important. Sadly, it doesn’t happen often. If the initial tumour is found before any secondary growths occur, it can often be removed surgically and the patient is considered cured. Once it has spread, however, the disease, though slow growing, is incurable. Treatments are improving, but it is still considered terminal.

Awareness of symptoms is key to early diagnosis. Unfortunately, however, misdiagnosis is extremely common. Typical symptoms, which often include abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue and flushing of the skin, are very similar to those of more common conditions such as Irritable Bowel Syndrome, Crohn’s disease, asthma, stomach ulcers, lactose intolerance, diabetes or even menopause. As a result, the average time to proper diagnosis for a NETS patient is 5 to 7 years.

NET cancer 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, NETS can affect both men and women of any age.

So, while you sip your coffee today, whether it be from a black and white “Lets talk about NETS” cup or your favourite mug at home or at the office, why not initiate a conversation that could save someone’s life? Why not talk about NETS?

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Walking the third pathway: living with chronic cancer

“Have you finished having treatments yet?”

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

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

“Have you finished having treatments yet?”

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

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

That depends entirely on how long I live.

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

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

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

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

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

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