Cancer

Five years and still very much alive!

/ edebock / 13 Comments

Five years ago today I embarked on a new journey. That was the day that I sat on the grass beside a nature trail overlooking a beautiful lake while my doctor reluctantly told me that I had cancer! No, he wasn’t hiking with me. Richard and I were camping with our daughter and her children about three hours from home when Dr H phoned with the results of tests that I’d had done before leaving home the day before. We were planning to drop Melaina and the kids off in Calgary the following morning and continue on to Vancouver, but when I was told “this can’t wait” those plans suddenly changed. It would be another two weeks before I found out exactly what kind of cancer I had and even longer before I learned that it was incurable.

Five years is usually considered an important benchmark in cancer survival. Five years cancer-free or in complete remission has traditionally been seen as a milestone when a patient could say that their chances of having that cancer return was no longer likely. It’s a point at which they can, at the very least, be cautiously optimistic. But what of those of us who, barring a miracle, will never be cancer-free?

Sometime shortly after learning that I had cancer, we read that the average life expectancy for a neuroendocrine (NETS) cancer patient was five years following diagnosis. Well here I am five years later and still very much alive! Not only that, but as far as we know, the cancer has not grown or spread since that time. In fact, thanks to the PRRT treatments that I’ve been receiving, some of the tumours appear to have shrunk and one might even be gone altogether. I say “as far as we know” because I had CT scans last Tuesday and I won’t get the results until I meet with the doctor on September 19th.

As I reflect on those early days of uncertainty when I had no real expectation that I’d still be here today, I realize how very much I have to be thankful for. Immediately after diagnosis, I prayed for two very specific things: that I would live to see Melaina’s unborn baby (she was 10 or 11 weeks pregnant when I was diagnosed) and that I would see our youngest son married. I was definitely going out on a limb with that one as there was no young lady in his life at that time! Not only was I in the delivery room for Simon’s birth, but he’s now four and a half years old. I call him my “velcro” boy because whenever we’re together, he practically attaches himself to me. In addition, Nate has been married to our beautiful daughter-in-law, Colleen, for over three years.

So how does one celebrate five years of living with an incurable cancer? After all, it’s my cancerversary! I thought about planning a trip, something really momentous, but that didn’t happen. In fact, I’m not actually doing anything very special at all. The more I thought about it, the more I realized that whether you have cancer or not, every day is a gift. Every day is worth celebrating! The nurse was just here to give me my monthly injection. In awhile we’ll go out for lunch at The Wooden Spoon and then if the weather warms up a bit and the wind doesn’t blow too fiercely, we’ll take the kayak out on one of the lakes not too far from here.

A model who embraced her age

/ edebock / 6 Comments

LogoIt was with sadness that I learned yesterday of the death of 67 year old Cindy Joseph on July 12.

Ms. Joseph, began her career in the late 1970s working as a make-up artist for fashion and beauty photographers. In 1999, at the age of 49, on the very day that she cut off the last remaining bit of her coloured hair and fully embraced her gray, she was approached on the street by a casting agent and asked to model for a Dolce and Gabbana ad campaign. That ignited her modeling career with Ford Models Inc. In her 50s and 60s she modeled for companies like Olay, Elizabeth Arden, Anthropologie and Ann Taylor.

“I certainly didn’t fit the status quo of the modeling world,” Ms. Joseph told Yahoo Beauty in an interview last year. “I was 49 years old — I was under 5-foot-8, my hair was gray. Hello! I had crow’s feet!”

What she didn’t mention was the fact that she was stunning!

Cindy Joseph

Cindy Joseph on the front cover of Viv magazine – July 2007

Ms. Joseph encouraged women to embrace their age instead of trying to conceal it. She believed that fixating on youth was unhealthy and an ineffective beauty strategy contending that many cosmetic companies failed their wearers by trying to mask the signs of aging. In 2010, she launched BOOM! by Cindy Joseph, her own “pro-age” skin and cosmetics line consisting of natural moisturizers and easy to use multitasking “Boomsticks” that act as lipstick, blush, and eyeshadow.

Cindy Joseph died after a valiant battle with soft tissue sarcoma, a cancer that attacks the soft tissues of the body.

Cindy Joseph

Good news and then…

/ edebock / 11 Comments

I’ve held off on writing this post for a little while because of the “and then” in the title, but here’s the latest update on my health. I had my tenth Lutetium treatment on Wednesday afternoon, spent the night in seclusion at the Cross Cancer Institute, and underwent follow-up scans early yesterday morning. After lying perfectly still under a warmed blanket (I love those warmed blankets!) while machines whirred around me taking detailed pictures of my insides, I sat down with Dr. Kounma to review the images.

These moments always stir up a bit of scanxiety. Rather than diminishing over time, I think that this has actually increased a bit in recent months. Shortly after I was diagnosed, we read that the average life expectancy for a NET cancer patient was five years following diagnosis. Better than a lot of cancers, I know, but I’m just a few months short of that now. Thankfully, the numbers have changed since that time. Last fall, Dr. MacEwan, head of my treatment team, presented at a NET cancer conference in Europe. By then, the time from diagnosis to disease progression (in other words, the cancer begins to grow and spread again) for patients who are part of the same clinical trial as I am, was 55 months. I passed that milestone a month ago.  This, too, is an ever changing number as more and more of us are meeting with success on this treatment plan.

Once again, the news was good! The post treatment images are not detailed enough to give exact measurements, but it was clear even to me that my cancer is not growing or spreading. In fact, if there has been any change at all in my tumours over the past few months, it appears to be for the better. We left the clinic rejoicing and praising the Lord!

AND THEN…

We were back home and it was four o’clock in the afternoon when the phone rang. It was Dr. Kounma. Apparently, when the radiologist reviewed the morning’s images, he saw something that appeared to be a partial obstruction of my small bowel. This was new since the CT scan that I had in February. Though I have exhibited absolutely no symptoms, Dr. Kounma’s instructions to me were “Go to ER for further evaluation today!”

YIkes!

That must have been one of the quickest ER visits in history! I left immediately for our small rural hospital, about ten minutes away and was back home again in little more than an hour. When I explained the situation to the intake nurse, she immediately picked up the phone and called my family doctor. He came over from his office, which happens to be housed in the same complex, and immediately reviewed the radiologist’s report online. His first comment to me when he saw me was, “Well you certainly look healthy for someone with a bowel obstruction!” He quickly determined that we were likely dealing with a red herring; that this was probably simply a false alarm. He was also quick to assure me that if there really was a blockage, it had absolutely nothing to do with my cancer. That was very reassuring. In fact, I wish that Dr. Kounma had thought to mention that.

Dr. Hanton decided that rather than jumping the gun and sending me back to the city for a CT scan, we would be best to take a wait and see approach. He told me the symptoms to watch for: vomiting, belching, abdominal pain, abdominal distention, lack of appetite, lack of bowel action, inability to pass gas. All of these would be pretty hard to miss if they began to happen. If need be, come back anytime, night or day, he told me and he even gave me his personal cell phone number in case I needed to get in touch with him!

18 hours have passed since the scans were completed and I’m still pooping and passing gas. (I bet you really wanted to know that, didn’t you?) It’s possible that there might be a partial blockage, but both doctors also assured me that these things sometimes resolve themselves. In the meantime, I’m thankful that my cancer is still stable and that, other than the usual post treatment tiredness, I’m feeling fine. Praise the Lord!

Great news!

/ edebock / 12 Comments

Just a quick update concerning my health. As many of you know, I live with NETS, a little known and incurable cancer. I’ve been waiting all week for the phone to ring with the results of routine CT scans done early last week. I wasn’t anticipating bad news, but I do live with the reality that it could come at any time. Thankfully, today wasn’t that day!

Today, the news was good! Almost four and a half years after diagnosis, my disease continues to be stable with no sign of growth or spread.

Today I also learned that my last two 5H1AA tests have been normal! What does that mean, you ask. While the injection that a nurse comes to the house to give me once a month and the radioactive treatments that I receive twice a year aren’t expected to lead to a complete cure, the hope was that they would render my tumours inactive or dormant. Neuroendocrine tumours (NETS) produce and release excess amounts of hormones, particularly serotonin. 5HIAA is a 24 hour urine test that measures the amount of 5-hydroxyindoleacetic acid, a product of serotonin, found in the body. The normal test results show that my tumours are no longer active; no longer producing serotonin. It’s the serotonin that can cause symptoms including abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue and flushing of the skin. Because my levels have now been normal for several months, I was told today that I probably won’t have to repeat the 5H1AA test again unless I begin to experience symptoms again! That’s great news as it involves 3 days of dietary restrictions prior to the test and then 24 hours of collecting urine which can be quite a nuisance.

I’ll have my next treatment on May 23. Until then, with the exception of my monthly injections, I can forget about having cancer and get on with the business of living!

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If you’re curious about why the zebra is the symbol of neuroendocrine cancer, check here or here.

Ten years of blogging!

/ edebock / 6 Comments

Ten years ago today I published my very first blog post! It was also the shortest post I’ve ever written and the message was very simple:

Richard and I have just accepted positions teaching conversational English in Japan. This is a one year commitment and we’ll be leaving in mid March. The main purpose of this blog is to share our adventure with friends, family and anyone else who’s interested.

Little did I expect to still be blogging ten years later! I anticipated that Following Augustine would only exist for the year that we would be in Asia. In fact, that’s why I chose the title. Augustine BeArce, a Romany Gypsy, was the first of my ancestors to cross the Atlantic Ocean from Europe and make his home in North America. 370 years later when I crossed the Pacific Ocean and settled for a time on the far side of the sea, it only seemed right to give credit to Augustine and the Gypsy blood that I inherited from him!

I’ve always been passionate about writing though and by the time our year in Japan came to an end, I knew that blogging was something I would continue to do indefinitely. What I didn’t know was what it would look like once I was no longer living in a foreign land. For lack of a better definition, I now refer to Following Augustine as a lifestyle, travel, and fashion blog, but one of my readers once called it a great advertisement for retirement!

Over the past decade, life has taken many unusual turns, some delightful and others deeply distressing. Following Augustine has been there through all the ups and downs.

We love to travel and the blog has recorded trips across Canada, into the United States, and to numerous other countries. Never in my wildest dreams did I ever expect to live in the People’s Republic of China though, but our five months there gave me plenty to write about. China’s internet censorship made it a bit more challenging to post from there, but thankfully, with the help of WordPress, I discovered a way to successfully break through or over the “Great Firewall” and continue blogging.

Cancer was never part of my plan either, but when it struck, the blog became a good way to process what was happening and to share it with friends and family. I’ve also used it as a way to raise awareness of NETS (neuroendocrine tumours), the little-known and often misdiagnosed cancer that I continue to deal with. My life is not all about my health, however, so neither is the blog. It’s about living life to the fullest in spite of all its challenges.

A couple of years ago, I became interested in fashion blogging and so the weekly Fashion Friday feature was born, not as a “look what I’m wearing today” narcissistic sort of thing, but as a way to connect with other women and to explore how the ways in which we present ourselves affect our lives. It has had the added benefit of ensuring that I write something at least once a week.

I am a Christ follower and I have fairly strong and not always popular or politically correct opinions on certain issues. I haven’t shied away from sharing those on the blog, but I’m committed to doing so with as much wisdom as God allows me, with integrity and with respect for those whose opinions differ from mine.

When I published that first post ten years ago, our daughter was expecting our first grandchild, so over the years five little people have appeared on the blog from time to time. I’m off to visit three of them this weekend and the other two for Christmas, so it’s possible that they might show up again soon!

What does the future hold for Following Augustine? I have no idea, but I’ve now written 882 posts and I don’t see them coming to an end anytime soon!

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On being radioactive

/ edebock / 8 Comments

10991307_10153055708750915_6654881605691342497_nThough we often laugh and joke about it, there’s nothing fun about being radioactive two weeks out of every year. I don’t glow in the dark and I don’t have any special powers. I simply feel tired and have to limit the time I spend in close contact with other people. It’s not that bad really, but when I sit alone and watch Sunday morning’s sermon online and when my husband is out at a social event while I’m at home alone, it’s easy to start feeling a bit sorry for myself.

People often compliment me on my positive attitude and I think they’re right that it has a lot to do with how well my cancer battle is going, but there are moments when it’s hard to remain positive, when I’m tempted to invite myself to a private pity party.

For those who are new to my blog, I have neuroendocrine tumours (NETS), a little-known cancer that is often quite advanced at diagnosis due to the fact that its most common symptoms are very similar to more common ailments such as Irritable Bowel Syndrome, Crohn’s disease, lactose intolerance, asthma, and even menopause. Though it’s incurable, it is slow-growing and often treatable. I have the good fortune to live 2.5 hours by car from a state of the art treatment centre, one of the very few in North America that offer the latest and best treatment available for this type of cancer.

At this point, I am treated with radioisotope therapy once every six months. This involves an overnight stay at the cancer clinic followed by a week of semi-isolation at home. During that week I have to have my own bedroom and my own bathroom and I have to limit my contact with other people because I’m highly radioactive. I pose an especially high risk to pregnant women and children under the age of 12.

I had my most recent treatment on Wednesday. Scans the following morning showed that my condition continues to be stable. My cancer has not grown or spread. That’s exceptionally good news and when I start to feel sorry for myself, I have to remind myself of that!

The first couple of days of radioactivity aren’t bad. I spend a lot of time in the armchair in the corner of our guest room (which becomes my room for the week) or curled up on the love seat in my den. I’ve read almost two books in the past few days and drank copious cups of tea. By today, however, I’m beginning to miss human contact and I’m itching to be set free!

I did go for a short walk this afternoon. It’s a gloomy, grey Sunday afternoon in our very small town and the temperature is -5ºC (23ºF). Two vehicles went by, one at a distance and the other close enough for the driver to wave. Other than that, I didn’t see a single soul. Definitely no danger of radiating anyone! I could hear traffic out on the highway, my own feet crunching on the snow, and the occasional winter bird in the trees. It didn’t do a great deal to lift my spirits, but I’m sure the fresh air and exercise were good for me.

When I start feeling a little mopey, perhaps it’s a good idea to once again remind myself of the things that cancer cannot do.

What Cancer Cannot Do

Cancer is so limited…

It cannot cripple LOVE

It cannot shatter HOPE

It cannot corrode FAITH

It cannot destroy PEACE

It cannot kill FRIENDSHIP

It cannot suppress MEMORIES

It cannot silence COURAGE

It cannot invade the SOUL

It cannot steal ETERNAL LIFE

It cannot conquer THE SPIRIT

Author Unknown

It may leave me radioactive for a little while and feeling a bit sorry for myself. It may even eventually destroy my body, but as the poem says, it cannot conquer MY SPIRIT! 

As the old saying goes, “This too shall pass!” Two more days and I’ll be free again!

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!

monaco-cami

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.

 

lets-cup10

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