Cancer

The dots keep disappearing!

/ edebock / 8 Comments

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)

A very different look

/ edebock / 4 Comments

logoMeghan Markle, star of the hit television show Suits, perhaps better known these days for her romance with British Prince Harry, recommends sticking to simple, classic looks rather than over-the-top ensembles featuring glitter and glitz for holiday parties.

“You don’t want to be the girl in a head-to-toe sequin look, where you look like you should be an ornament on the tree,” says Markle. “Be the girl who looks chic and classy and plays it really simple.”

Last Friday, I showed you a classic Christmas outfit that I put together by searching my closet and combining pieces that I’ve had for several years. Today I’m featuring an entirely different look that I wore to two events last weekend. Since the events were held in two different locations, some 350 km apart, and didn’t involve any of the same people, wearing the same outfit for both wasn’t a problem. The first, last Friday, was a Christmas banquet followed by an entertaining evening with popular speaker, author, and radio host, Phil Callaway. The second, on Sunday afternoon, was a ladies Christmas luncheon at my daughter’s church and this time I was the speaker! I was asked to talk about my cancer journey and how God has been present in it. That’s a pretty heavy topic for a Christmas event, but I didn’t want my look to be sombre. I wanted it to say that I might have cancer, but I’m still enjoying life. Here’s what I wore:

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With the exception of the poinsettia corsage, this is an outfit that I could wear anytime, not only at Christmas. The top is my brand new Monaco Cami, one of my favourite pieces from cabi‘s fall collection.  Although it looks like a lace overlay, it’s actually a print. It’s so realistic looking that when I first saw it, I actually had to touch the fabric to convince myself that it wasn’t lace!

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I’m wearing it with my skinny black pants from Dynamite and the charcoal jacket from Bianca Nygard that I bought at our local thrift store last spring. The silver threads running through it and its big sparkly buttons give it a dressy look.

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And then there are the shoes! Those definitely attest to my frugal fashionista tendencies. I’ve probably had them for close to 20 years! The comfortable Dr. Scholl’s were actually only kept all this time because they worked well with various period costumes that I and others have worn in local community theatre productions, but  now they fit right into this year’s boy meets girl fashion trend! I brought them out of storage, gave them a good polish and they look almost brand new.

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So which look do you prefer?

This week’s or last?

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!

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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NET Cancer Day

/ edebock / 2 Comments

ncd-logo-newNovember 10 is Worldwide NET Cancer Day, a day for raising awareness of neuroendocrine cancer.

It’s not surprising that this disease has escaped the attention of even the medical community at large until now. Many family practitioners will never see a case. My doctor has been practicing medicine for about 20 years and I’m his first NETS patient. A locum filling in at our local hospital last spring went so far as to debate with me whether I even have cancer! He was completely unaware that neuroendocrine tumours can be malignant as most are not.

Is NET cancer really that rare? Here in Canada, specific numbers are not even reported separately, but my estimate, based on US statistics, is that there are approximately 890 new cases per year across the country with only about 106 of those residing here in the province of Alberta. In comparison, 2100 Albertan women are diagnosed with breast cancer each year and 2500 men with prostate cancer. Is it any wonder that those cancers have a much higher profile?

Since it falls upon those of us with the disease to do what we can to raise awareness, 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 is incurable. I had 5 tumours at diagnosis and many patients have more. I have been told that I may have had this cancer for as long as 10 years before it was detected quite by accident! Fortunately, it’s usually very slow-growing.

Awareness of symptoms is key to early diagnosis. Unfortunately, however, misdiagnosis is extremely common. On average, patients see 6 healthcare professionals at more than 12 clinical visits before receiving a correct diagnosis because symptoms of NET cancer are often very similar to more common conditions including Irritable Bowel Syndrome, asthma, diabetes, stomach ulcers and lactose intolerance. Depending on where the tumours are located, typical symptoms include abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue, and flushing of the skin. In very severe cases, there can be heart damage causing shortness of breath.

I endured stomach pain and diarrhea off and on for at least 7 or 8 years before my tumours were finally detected. At one point, a medication used to treat acid-related stomach problems was prescribed, but it had little effect. Another time, I tried a dairy free diet for an entire month to see if that would help, but it didn’t.

NET cancer can arise in any organ that contains neuroendocrine cells including the stomach, intestines, lungs, liver, pancreas and appendix. My primary tumour is located in my colon, but I also have three growths on my liver and one in a lymph node. Though it can occur at any age, the usual age of diagnosis is somewhere between 40 and 60.

So what are some of the goals of NET Cancer Day?

  • to raise awareness among decision makers, health professionals and the general public
  • to promote research aimed at improving quality of life and prognosis for NET cancer patients
  • to advocate for equity in access to care and treatment for NET cancer patients around the world
  • to bring hope and information to people living with NET cancers, their caregivers and their families

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!

NET Cancer Awareness