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!

 

Not so rare after all!

November 10 was worldwide NET Cancer Day. In addition to writing my Let’s talk about NETS post, I read several other articles about neuroendocrine cancer that day and what I learned was quite astonishing.

When I was diagnosed with neuroendocrine cancer (NETS), I was told that it was rare and much of the literature about it seems to agree, but is it really? Is it actually rare, or is it just not very well-known?

You’ve heard of cystic fibrosis, right? And what about ALS (Amyotrophic lateral sclerosis), often called Lou Gehrig’s disease after a hall-of-fame baseball player for the New York Yankees who was diagnosed with ALS in the 1930s? If you hadn’t already heard of that one, I suspect that the famous Ice Bucket Challenge of July and August 2014 brought it to your attention. Unless you’re a fellow patient, however, I’m guessing that you’d never heard of NETS before you read about it here on my blog, but is that because it’s rare?

Let’s take a look at some statistics. I’m using numbers for the United States simply because they were the easiest ones to track down, but I’m assuming that the ratio would be similar elsewhere. In the US, there are

• approximately 1000 new cases of cystic fibrosis each year
• a little over 6000 new cases of ALS each year
• an estimated 15 500 new cases of NETS each year

Do the math! That’s more than 15 times as many cases of neuroendocrine cancer as cystic fibrosis and more than twice as many cases as ALS! It’s also an average of more than 42 new cases a day or more than one every two hours!

So why is NETS not nearly as well-known as the other two diseases and why does that matter? It matters because doctors don’t detect what they don’t suspect and they don’t suspect NETS if they don’t know anything about it. Secondly, more research dollars go to higher profile diseases. According to the US Department of Health and Human Services, $49 million was spent on ALS research in the US in 2015 and $80 million on cystic fibrosis, but NETS wasn’t even on the report!

I know you’d probably rather read about my travels or my Fashion Friday posts and they’re definitely more fun to write, but unfortunately, it falls upon patients like me to publicize and educate whenever and however we can. It might be easier if we had a Lou Gehrig, someone well-known to put a face to our disease, but that hasn’t happened yet. Our best hope so far was Steve Jobs, co-founder and former CEO of Apple Inc, but Jobs initially chose to reject his doctors’ recommendations and try alternative treatments, a decision that may have hastened his death in 2011. He was also very private about his condition which was, of course, his right, but he could have done so much good had he chosen to be a vocal spokesperson. The fact that the media, left in the dark by his silence, commonly reported that he died of pancreatic cancer rather than neuroendocrine cancer that originated in his pancreas, didn’t help our cause either.

Increasing awareness is a slow process, but I believe we’re making headway. In spite of the fact that it’s still not well-known, NETS is actually the fastest growing class of cancer worldwide! I believe that that’s because it’s being diagnosed more often and because improved treatments are allowing many of us to live longer. Our goal continues to be to raise awareness in both the medical field and the general public, so that research funds are made available that will lead to even earlier diagnosis and better treatment. It’s time for NETS to come out of the dark!

Let’s talk about NETS

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.

 

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?

Feeling fabulous

Can a woman have too many cute jackets? I don’t think so when fall is in the air and she can get them for $3.00 apiece at her local thrift store!

My latest acquisition is a variegated grey denim jacket from Denver Hayes, one of Canadian clothing retailer, Mark’s, popular in-house brands. The fabric is soft and the ruffle trim adds a feminine touch.

I wore it on Tuesday when I went to Edmonton for a follow-up appointment with my surgeon, the one who removed a cancerous tumour from my left parotid (salivary) gland during a delicate seven hour operation in May of 2014. (This was my second cancer, completely unrelated to NETS, the incurable cancer that I continue to live with.)

Here I am feeling fabulous after my appointment, not only because a woman feels good when she knows she looks good, but also because the appointment went so well. Not only is there no sign of recurrence, but even this long after surgery, healing is still taking place. I don’t have to see Dr. Williams again for a whole year!

On this occasion, I wore the jacket with a pair of black jeans, comfortable for the four hour round trip to the city, and a top that I’ve had for several years. I’m also wearing my comfy grey flats with their cushiony memory foam insoles, perfect for a walk through the mall after my appointment.

When no news is good news

It’s been quite awhile since I wrote anything about my health as there really hasn’t been anything new to report. That in itself is good news!

As many of you are aware, I was diagnosed with two completely separate and unrelated cancers in late 2013 and early 2014. Yesterday, I finally received the results of CT and PET scans and other tests done three weeks ago. The first good news was that there has been no significant change in my incurable neuroendocrine cancer (NETS) over the last year. I have only had two radioisotope (Lutetium) treatments during that time, one last October and one in April, but that has been enough to keep things stable. The tumours have not grown or spread.

Source

Neuroendocrine tumours (NETS) produce serotonin which is sometimes referred to as a happiness hormone because a deficit can to lead to depression. An excess, however, can result in carcinoid syndrome which, as in my case, results in symptoms that include abdominal cramping and diarrhea, skin flushing, and periods of rapid heart rate. It can also lead to heart disease and other complications. A 24 hour urine test is used to measure the amount of serotonin in the body. Though I don’t know what units are used to measure serotonin, at the time of diagnosis, the level in my body was 150. Now, it’s down to 40. Though still above average, it is considered borderline and indicates that my tumours, if not completely dormant, are barely functioning. Monthly injections of Sandostatin, meant to suppress this serotonin production, are obviously working and I have had none of the above listed symptoms for the past couple of years.

More good news was the fact that there is absolutely no sign of recurrence of my second cancer which was an acinic cell tumour in one of my saliva glands. It was removed surgically followed by six weeks of radiation treatments, thirty in all. I have now been free of that cancer for over two years!

The best news, however, is the fact that I feel 100% healthy! My energy level is normal and except for the monthly injections, which are given by a nurse who comes to the house, and a treatment requiring an overnight stay in hospital in Edmonton once every six months, I’m able to lead a completely normal life. We haven’t gone on any long hikes yet this summer, but I’m quite certain that I could.

If things continue to go this well over the next year, treatments will then be reduced to one every nine months. I have no idea what the long term outlook is, but then, who really does know what their future holds? I know who holds my future and that is good enough for me!

“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.”                                      Jeremiah 29:11