Good news!!

Good news

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

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

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

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

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Ten years!

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At the end of this week, it will be ten years since Richard and I walked out of our Alberta classrooms for the last time and entered a brand new phase called retirement! Where did the time go? It amazes me to think that we’ve been retired for an entire decade already! Over the past few days, I’ve been looking back and marvelling at all the things we’ve done during that time.

I often say once a teacher, always a teacher. We knew that even though we were retiring, our teaching days weren’t entirely behind us. We’d long had a dream of teaching English overseas after we retired and we accomplished that by spending one year in Japan and a semester at a university in China. Those were amazing experiences and we treasure the memories and the friendships that we made! I’ve also spent some time doing online mentoring and we both volunteer with our local literacy program. I meet once a week with two young women, both members of the Old Colony Mennonite community that moved into our area over the past few years. They are fluent in English, but neither of them ever had the opportunity to learn to read or write, even in their own language, so I’ve been teaching them. Richard tutors one of their husbands.

We’ve discovered that there are no end of things to do in retirement, even in a small community like ours. Richard has been serving as the Deputy Director of Emergency Management for our town for the past few years, a volunteer position that involved quite a bit of training. He also serves on our Community Hall board. Because we come and go a lot, we hesitate to commit to too many activities that require us to be present on a regular basis, but we give our local food bank a thorough cleaning once a month and occasionally work a shift at the thrift store that’s operated by three local churches. In addition, we hold positions in our own church and participate in many activities there. Lately I’ve even had to say no to some opportunities because I felt that I was becoming too busy!

Two of our grown children were already married when we retired, but our family has grown over the past decade to include another daughter-in-law and five grandchildren! Though none of them live very close to us, being grandparents is one of the best things about this stage of life and we spend as much time as we can manage with our little ones.

The past decade has brought some surprises, some good and some not so good. We certainly didn’t anticipate becoming seasonal farm labourers, but I believe in living life to the fullest and I’m always ready to try something new. As a result, this city bred girl learned to operate some pretty big machinery and loved it! For several years, I drove tractor in the spring and combine in the fall as we helped a farmer friend with seeding and harvest.

Travel was always part of our retirement plan. During the first few years, we visited nine Canadian provinces and fifteen American states plus Japan, South Korea, Vietnam, Cambodia, Hong Kong, Macau, Saipan and Costa Rica. In 2013, I was diagnosed with a little-known incurable cancer which slowed us down a bit and keeps us from being out of the country for extended periods of time, but since that time, we’ve managed to tour Israel and visit Mexico twice. I’ve also been on a girlfriend trip to Las Vegas and we travel to Vancouver regularly to spend time with family. Last fall, we spent two weeks in Nova Scotia and celebrated our 40th wedding anniversary while we were there.

We continue to stay physically active. Golfing is a summer passion for both of us. We also love to hike and we recently purchased a tandem kayak. During the winter we keep active lifting weights, bowling in the local seniors league, and going to dances.

Writing was always something I always knew I’d return to in retirement. Though I’ve had one magazine article published and I’ve done some freelance editing, it’s blogging that I’m most passionate about these days. I love the opportunity it gives me to interact with my readers. Even my blog has changed over the past decade though. I originally started it to share our Asian experiences with friends and family back home, but I loved writing it and I’ve kept it going ever since. Though I still share travel stories whenever I can, it has morphed into more of a lifestyle blog that includes a weekly fashion post reflecting another interest of mine that grew and developed in my retirement years.

Perhaps that’s been the key to a successful and happy retirement… we’re still learning, growing, and exploring new interests. I am extremely grateful that we were able to retire as early as we did. I’m just now approaching 65, traditionally thought of as retirement age, and Richard is 67, but we’ve already been blessed with ten wonderful years of retirement. We loved our teaching careers, but as we watch our younger colleagues wrap up another school year and see their weary, stress filled faces, we don’t for one moment regret retiring when we did!

What will the next ten years hold, I wonder? Much will depend on my health, but at this point, I’m doing well. With a few restrictions, I’m able to lead a normal and active life. I don’t think we’ll be leaning back in our rocking chairs and putting our feet up anytime soon! There’s still a lot of world to see and new adventures await us!

Retail therapy

LogoI’ve never indulged in retail therapy. I don’t shop because I’m feeling lonely, stressed, depressed, or bored. I confess that the fact that I live 85 km (53 miles) from the closest mall might have something to do with that! On Tuesday, I travelled that 85 km to spend two hours sitting in a dentist’s chair. On the way, I stopped to have several vials of blood taken for post treatment testing. No one could blame a girl for adding a bit of shopping to a day like that, could they?

Just before I left home that morning, I checked my emails and discovered that Payless ShoeSource had a BOGO (buy one pair, get a second pair half price) sale starting that day. Of course, I had to stop in and check it out!

In my world, there are two kinds of shoe shopping. If I’m looking for shoes (or boots) that I’ll be doing a lot of walking or hiking in, I want quality, support and comfort. I’m willing to pay for that and Payless isn’t the place I usually go looking. If, on the other hand, I’m looking for something fun and I don’t want to spend a lot, it’s definitely my go to. I’ve actually been surprised, however, to discover that most of my Payless purchases have stood up well and have been very comfortable. Hopefully that’s true of Tuesday’s purchase! Here they are, the Fiona Pointed Toe Ghillie Shoes by Brash.

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I knew they were going home with me the minute I tried them on! They’re perfect for wearing with summer’s shorter pants. Here, I’ve styled them with a pair of capris that I bought off a sales rack in the middle of winter and the white sateen crop pants that you’ve seen several times before. You first saw the black lace top here.

Shopping Payless, especially their BOGO sales, is a bit like thrift store shopping in that they don’t always have a particular shoe in the size you wear. I was lucky to find this pair in my size, but I couldn’t find a second pair I wanted, so I bought a package of socks to take advantage of the BOGO savings. I can always use more socks, especially at half price. The shoes themselves were a fantastic buy. Marked down from $49.99 to $16, they actually rang in at $13! Bonus!

I’ll be back to town for more dental work next Tuesday and the Tuesday after. Hopefully retail therapy doesn’t become a bad habit!

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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!

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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

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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?

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. Kounma, 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.

 

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If you’re interested in reading more about PRRT and how it works, one of the best explanations that I’ve found written in language that a non medical person can understand is found here. Keep in mind that this is an American site and some of the information, particularly toward the end of the article, pertains specifically to PRRT use in the US.

 

Feeling fabulous

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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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