Health

Not so rare after all!

/ edebock / 10 Comments

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!

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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

/ edebock / 3 Comments

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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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Where’s that little black dot?

/ edebock / 24 Comments

Now that my cancer treatments are six months apart and I feel so well in between, sometimes it’s almost possible to forget that I have that dread disease. Almost, but not quite.

Yesterday morning, we were back at the Cross Cancer Institute in Edmonton for Lutetium treatment #7 and this morning, I had the follow-up scans and met with my doctors to learn the results.

Once again, the news was good. The black marks on the screen that represent my tumours were not only significantly smaller than they were at diagnosis three years ago; they appeared to be noticeably smaller than they were six months ago. Three were still very obvious and the doctor pointed out the fourth one, but where was number 5? Gone? Was that possible?

Dr. Koumna, the newest member of my care team, explained that what we know for sure is that that tumour, one of the smallest in the first place, is no longer absorbing Lutetium, the radioactive substance that binds to my tumours and fights them on the spot. It may be gone or it may be dead or completely non-functioning. Either way, the news is definitely good!

On the other hand, the morning was also somewhat sobering as we were reminded once again that neuroendocrine cancer (NETS) is a deadly disease. We learned that a couple of things have changed in the treatment protocol since we last sat down with the doctors six months ago. First of all, I will now be having a CT scan three months after every treatment instead of after every second one. In other words, twice a year instead of only once. According to Dr. MacEwan, head of the team, they’ve discovered that leaving these tumours unchecked for six months, as they had been doing, was putting patients at too great a risk. Secondly, although I was told last year that after I’d had four treatments at six month intervals, if everything was still going well, we would try nine months between treatments, that is no longer an option. Again, leaving these tumours untreated for that long was proving to be too risky.

This type of therapy, known as Peptide Receptor Radionuclide Therapy or PRRT, is still very new. It is extending the lives of NETS patients beyond what was possible in the past and as that happens, even the specialists are still learning. I truly thank the Lord that I live so close to one of the centres where this treatment is available because there are not many of them in North America!

The most disconcerting thing that we learned this morning is that, at this point, only 12 Lutetium treatments are available per patient. For me, that means just 5 more. Two and a half years and then what? Dr. MacEwan was frank in explaining that the clinical trial that I’m part of and that is the only way to access this treatment in western Canada at this time, was set up with a maximum of 12 treatments because they didn’t actually expect to need more than that. Though they knew that in the early stages of use, Lutetium was proving to be successful in providing symptom relief, stopping or slowing tumour progression and improving overall survival, they really did not expect it to be as effective as it’s proving to be. Now that some patients are approaching the 12 treatment maximum and still doing well, Dr. MacEwan will be going back to the government to apply for further funding and permission to continue therapy beyond 12 treatments. He fully expects that to be in place before I need it.

In the meantime, I’m highly radioactive again meaning that I need to stay somewhat isolated from other people for the coming week and, as usual after a treatment, I’m feeling quite tired, but I’m home and very happy to report that one little black dot was missing from the screen today!

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This is not my scan because I got so involved in discussing what I was seeing (and not seeing) on the screen that I forgot to ask if I could take a photo of it, but this gives you an idea what the scan I get after each treatment looks like. This patient has tumours that are larger than mine and located in different areas of the body.

Photo credit

Feeling fabulous

/ edebock / 1 Comment

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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.)

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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.

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When no news is good news

/ edebock / 14 Comments

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.

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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

We’re winking again!

/ edebock / 3 Comments

It’s hard to believe that it’s already been a year since my daughter and I put on our blue eyeshadow and participated in Wink Day 2015, but here it is again and as it turns out, I’m at her house again.

What is Wink Day, you ask? It’s a day set aside by the Canadian beauty industry, through it’s charitable foundation, Beauty Gives Back, in support of women going through the social and emotional challenges of the Cancer Blues. Women across Canada are  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, coined by Beauty Gives Back, 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.

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My daughter looks great in blue eyeshadow, but me, not so much! “It ages you,” she told me as we applied our make-up and I think she’s right. For Wink Day, however, I’ll put vanity aside.

For over 20 years, Beauty Gives Back has supported tens of thousands of Canadian women through the Cancer Blues with programs such as Look Good Feel Better and FacingCancer.ca. Look Good Feel Better workshops are free of charge to all women with cancer and are designed to help them feel better about themselves and thus face their illness with greater confidence. Over 1800 volunteer cosmetic advisers and hair alternative specialists give generously of their time to bring the two hour seminars to cancer care centres across the country. I was so impressed with my own Look Good Feel Better experience that I’m now a spokesperson for the program helping promote the twice a year fundraising galas put on by Shopper’s Drug Mart, one of the program’s biggest sponsors.

Though I’ve been diagnosed with two completely unrelated cancers over the past three years, one of which is incurable, I must admit that I haven’t experienced the degree of mental distress that many victims of the Cancer Blues do. I attribute this to my faith, my wonderfully supportive family and friends, a great cancer care team and the fact that, so far, my treatment has been successful. My disease is stable and I’m able to live a reasonably normal life. I do, however, love those occasions when I’m someplace where no one knows that I’m the woman with cancer; moments when I can almost forget about it myself.

On days like Wink Day, however, I’m eager to do my part to raise awareness even if it means looking totally silly! It’s not too late to join the fun. Simply post a picture or a video  of yourself wearing blue eyeshadow on social media anytime before the end of June (with the hashtag #winkday) or visit winkday.ca to find out how else you can help.

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I’m a survivor!

/ edebock / 4 Comments

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Today is National Cancer Survivors Day, a day set aside to celebrate the more than 32 million people around the world who have battled the disease and to raise awareness of the challenges that many of them face.

So what is a survivor? To many, the term ‘cancer survivor’ suggests a person who has beaten their cancer; perhaps one who has been cancer free for several years, but I like the definition used by the National Cancer Survivors Day Foundation. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

In other words, I am a survivor!

I live with cancer every day. Unless a cure is found for neuroendocrine cancer (NETS) within my lifetime or God performs a miracle on my behalf, I will never be cancer free. People have a hard time grasping the idea of a chronic cancer. The usual assumption is that patients either die of their disease or they are cured, thereby becoming cancer survivors, but I look at my situation differently. I may die of my cancer or I may die with it, but either way, I am a survivor! Fortunately my disease is stable at this point and it doesn’t significantly impact my day to day life. A schedule of monthly injections and biannual treatments restricts my previous worldwide wanderings a bit, but I recognize that every day is a gift.

I’m also a cancer survivor in the more tradition sense, as in one who had the disease, but is now free of it. As many of you know, seven months after my NETS diagnosis, I was diagnosed with a second, completely unrelated cancer that was removed surgically. Six weeks of radiation followed and, since that time, there has been no recurrence. That possibility still exists, of course, but in the meantime I will continue to live life to the fullest.

I am, after all, a survivor!

As good as my last scan

/ edebock / 13 Comments

Fellow NET cancer patient and blogger, Ronny Allen, published a post awhile back entitled, “I’m only as good as my last scan.” That sentiment definitely resonated with me as I never know what to say when people ask me how I’m doing. For the past while, I’ve been feeling absolutely great, 100% even, but unless I’ve had a recent scan, I really have no idea how I’m doing on the inside. That’s why I was actually looking forward to this week’s treatment and it’s follow-up scans, the first look at my cancer in 6 months.

Today, let me walk you through what this two day process looks like. On Tuesday morning at 9:30 a.m. Richard and I sat down with Dr. Sandy McEwan, scientist and doctor extraordinaire and head of my cancer care team. I told him how great I’ve been feeling, he told me how great I look, and I signed consent for the treatment procedure. He also shared some of the recent findings of the clinical trial that I’m part of including the exciting news of one patient who has been surgically proven to be tumour free!

Next, we were off to the volunteer run Sunroom Cafe to kill time over a cup of tea while we waited for the next step which was having my IV inserted at 11:00. Shortly after that, we headed up to the third floor to check into my private room in the nuclear medicine corner of the inpatient ward. In preparation for the treatment itself, I was given an anti nausea pill and a saline drip was started. Then I sat back and relaxed until the arrival of the radioactive Lutetium-Octreotate, which had just been flown in from the Netherlands where it is produced. At that point, Richard had to leave and I continued to relax  while it flowed through my veins seeking out and attaching itself to my tumours. Because I’m part of a clinical trial, there is lots of monitoring to be done, so Michelle, who administers the treatment, was in and out of my room over the next hour or so constantly checking my vital signs. My blood pressure remained good and she was astonished by my slow, steady heart rate. Obviously, I wasn’t experiencing any stress. Why should I? After all, this was my sixth treatment and I’m an old hand at this now!

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Once the Lutetium was in and the lines were flushed, the IV was removed. If I lived in the city, I’d have been free to go home, but since I live a couple of hours away and had to be back for my scan by 8 o’clock the next morning, I stayed the night. Richard came back to visit bringing me a Subway sandwich as my one and only complaint about the Cross Cancer Institute is the food. It’s so bad that even the staff apologizes for it! Dr. McEwan dropped in to see how the treatment had gone and then I settled in for a quiet evening. I spent awhile visiting and exchanging stories with the patient in the room next to mine, a retired farmer from northern Saskatchewan. At the Cross, Lutetium is administered to three patients at a time.

I slept well and was up bright and early to head back downstairs for my scans. After spending the night at our son’s place, Richard met me there. For the full body scan, I had to lay perfectly still on my back with a pillow beneath my head and another under my knees. Covered by a warmed blanket, I was quite comfortable as my body slowly moved beneath the enormous camera just a few inches above me. Dr. McEwan had planned on having a second, 3D scan done as well, but that machine was down. The technicians were working on it and if he’d felt it was necessary, we’d have waited around until it was up and running again. He was certain, however, that the first scan showed all that we needed to know. My cancer is stable! The tumours haven’t grown and there aren’t any new ones. There’s also no sign of recurrence of my second, unrelated cancer. While it would have been nice to hear that the tumours were continuing to shrink or that, as in the case of the woman mentioned above, they had disappeared completely, that is most unusual and no change is also good news.

I hope Ronny doesn’t mind me borrowing his title, but he is right. I’m only as good as my last scan and right now, that’s very good!

Naming Lavita

/ edebock / 3 Comments

Perhaps it’s just an extension of my love of words, but I find the meaning and origin of names fascinating. Long before we had our first child, Richard and I had two boys names picked out, Matthew and Nathan. Interestingly, they both mean “gift of God” and since God blessed us with two sons, we were able to use them both. We had a much harder time choosing names for our daughters. I’ve always been partial to girl’s names that end in A and, after much deliberation, we settled on Janina for our first daughter. A derivative of Jane, it too means “gift of God”! Though the spelling of our second daughter’s name is very similar to mine, Elaine means “light” and Melaina means “dark”! Like our other three, however, she is also a “gift of God” and that’s the meaning of her middle name, Jean!

In addition to naming our children, I’ve helped name a few pets along the way, but I never thought that I’d name a gastrostomy tube; a tube inserted through a patient’s abdomen to deliver nutrition directly to her stomach! Over the past few months, I’ve made contact with two other bloggers who are also neuroendocrine cancer patients and one of them, Lizbeth, recently wrote a post asking readers to help her choose a name for the tube that provides her with vital nutrition. She was tired of simply referring to it as “tube”.

I immediately began to search for girls names that meant “giver of life”, but I didn’t find one that I liked, so I changed my search slightly and began to look for names that simply meant “life”. I quickly came up with three of them and they even ended in A; Olivia, Livia and Lavita. I sent them off to Lizbeth and waited to see what would happen. Here’s what her next blog post said:

A fellow blogger, Elaine, has gave me a name that I’m rather struck on.  The name Elaine has suggested means life.  Rather apt.  For me the tube gives me a better quality of life…  It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning.  For many people with a tube it is an essential lifeline and the only source of nourishment.  

The name I have chosen is Lavita.

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Tote-ally awesome!

/ edebock / 11 Comments

When I read “Crashing the Cancer Club“, Jenny Charlesworth’s story of surviving cervical cancer, in the March 2015 issue of Chatelaine magazine, I immediately responded with a letter to the editor via email. I’d completely forgotten about that until I flipped open the May issue and saw my letter in print! A bright pink tag announced that it was “This Month’s Winner”!

I vaguely remembered seeing a tiny note at the bottom corner of previous Letters pages announcing the chance to win a prize for writing a winning letter, but I didn’t give it much thought. I was just happy to see my letter in print! Sometime later, I looked back at the March issue and saw that the prize that was being offered was a blender. I already had a perfectly good blender and no real need for another one, so I wasn’t even concerned about the fact that I hadn’t included my mailing address with my letter.

Almost exactly a month ago, in the middle of June, I received a surprise email from Dominique at Chatelaine telling me that I’d won a leather tote from The Sak and asking for my address and phone number!

Leather tote or blender? Which would I rather have? I looked up The Sak website and checked out the many tote bags on offer. I love my blender, especially the fruit smoothies that I often make in it, but it was no contest. There were lots of bags that I could visualize myself carrying and I began to wonder which one would soon be mine!

Today, it arrived by courier… the Palisades soft leather tote in the shitake tassel design. I love it’s casual, slightly bohemian look. With it’s spacious fully lined interior, zippered inside pocket and magnetic closure, it has plenty of room for essentials like my wallet, cell phone, sunscreen and camera. In fact, I have a feeling that it’s going to be an ideal travel companion! I wonder where we’ll go together?

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