Radioactive again

10991307_10153055708750915_6654881605691342497_nI had my 11th PRRT treatment on Monday and once again I’m too radioactive to be in close contact with other people. For a week following each treatment I spend most of my time at home. I sleep in the guest room, have my own bathroom, and stay at least a few feet away from Richard at all times.

There’s nothing funny about cancer and high doses of radiation, but sometimes you just have to laugh. I pose a particularly high risk to pregnant women and children, but since there’s no chance of running into any of them at our weekly senior’s bowling league, I played yesterday but sat apart from the rest of the bowlers. There were some who knew exactly why, but others who were curious. One jovial fellow, noticing that I was sitting alone, commented, “I see you’re sitting back there with all your friends!” I hope he didn’t feel bad when he found out why I was keeping my distance. I thought his comment was funny! Then there are invariably questions about whether or not I glow in the dark! (I don’t) One friend laughed and said I must be a night light! I told him that that must be the reason that I’m not allowed to sleep with Richard! The glow would keep him awake.

In all seriousness though, I have scans the morning after each treatment to determine whether or not there has been any change to my tumours. In the past, I’ve been able to sit down with a doctor immediately afterward to discuss the results, but this time was different. Dr Sandy McEwan, head of the clinical trial that I’ve been part of since 2014 and the driving force behind bringing state of the art NET cancer treatment to Edmonton, has left the program. While I’m sad for myself and the rest of his patients, I’m happy for him that he has been able to relocate to Toronto where he will be closer to family. I knew a couple of years ago when he proudly told me that he’d become a grandpa that that day might come! His departure means that there isn’t time for the remaining doctor to meet with every patient both before their treatment and after their scans. That meant that this time I came home not knowing what they showed. While I was still able to laugh yesterday, the question was there in the back of my mind. Was this the time that the news would be bad?

Thankfully, I wasn’t kept wondering very long. I chatted with one of the program nurses this morning and once again I heard that word that I’ve come to love; stable! There has been no change! Praise the Lord!

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NET Cancer Day 2018

November 10 is World NET Cancer Day, a day set aside to raise awareness of neuroendocrine cancer, the disease that I’ve been fighting since 2013.

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Neuroendocrine (NET) tumours 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, NET cancer can affect both men and women of any age. Though NETs is the fastest growing class of cancers worldwide, the symptoms are usually vague and similar to more common health conditions. As a result, NETs is frequently misdiagnosed as anxiety, menopause, Irritable Bowel Syndrome (IBS), asthma, or diabetes.

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Compared to most cancers, NETs is slow growing. It was estimated that I’d already had the disease for ten years when it was detected. I had been experiencing many of the common symptoms which include abdominal cramps, diarrhea, flushing of the skin, pounding of the heart, and wheezing or shortness of breath off and on for at least seven or eight years . Neither I nor my family doctor had any idea why. Like many general practitioners, he had never encountered a NETs patient before.

Almost 50% of patients visit a doctor 5 or more times before receiving a correct diagnosis! A recent study found that 58% of patients have advanced stage neuroendocrine cancer by the time they are correctly diagnosed. There is currently no cure for the majority of NET cancer patients, including me. Neuroendocrine cancers are complex and unpredictable. Once diagnosed, they require an expert and experienced multidisciplinary team of health care professionals to ensure the best possible outcome. Unfortunately, many patients, even in the world’s most developed countries, have difficulty accessing that kind of care.

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So what’s with the zebra? Everyone recognizes the ubiquitous pink ribbon as a symbol of breast cancer, but not all cancers are pink. Medical students are taught when hearing hoofbeats, to think of horses, not zebras, so the zebra was chosen as symbol of our lesser known disease. There are some patients and advocates who think it’s silly and would like to see us stop using it, but I think we need to take advantage of every opportunity to draw attention to our cause and if that includes zebra stripes, I’m all for it.

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. My fellow zebras and I thank you!

 

Having an Elijah moment

I don’t ever want to be one of those little old ladies in the nursing home who goes on and on endlessly complaining about her aches, pains, and infirmities to anyone who might be listening. On the other hand, while I’m determined to maintain a positive attitude, I’m not actually Wonder Woman and I do have my “Elijah moments”.

If you’re at all familiar with the Old Testament, you may remember the story of the prophet Elijah, who immediately after experiencing an amazing victory on Mount Carmel and defeating 450 prophets of the false god, Baal, flees into the desert when his life is threatened by the wicked queen, Jezebel. Exhausted and depressed, he sits down under a broom tree and prays to die. “I have had enough, Lord,” he said. “Take my life.” (1 Kings 19:4) Later, he goes on to say, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, broken down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.” (1 Kings 19:10)

Poor Elijah! An emotional high followed by a crash. That’s what I call an “Elijah moment” and I can definitely identify!

As I shared in Wednesday’s post, I was elated to learn that afternoon that my cancer had not spread or grown. The very next day, however, I learned that my thyroid is no longer functioning as it should. I knew that this could happen as a result of my treatments, but it still seemed like one more in a long list of health related discouragements. In the past 5 years, since my first cancer diagnosis, there has been a second cancer, high blood pressure, prediabetes, osteopenia, and now hypothyroidism! Like Elijah, I felt like saying, “I have had enough, Lord!”

After all, I could argue that I have been very zealous about living a healthy lifestyle. I exercise regularly, I eat healthy, I don’t smoke, I drink in extreme moderation, I’ve never used illegal drugs. Heck, I don’t even drink coffee! Why me? Why another diagnosis? I was definitely having an “Elijah moment”!

But God didn’t leave Elijah under the broom tree wallowing in despondency. He sent an angel to give him food and water, then He let him rest. Later, He spoke to him in a gentle whisper, gave him someone to walk beside him and share in his work, and sent him out to continue. God wasn’t finished with Elijah yet and apparently He isn’t finished with me either! Within a few hours of learning about my failing thyroid, an email from a ministry that I’m involved with made that very clear. And so, like Elijah, I’ll keep on keeping on. I’m determined not to become that crabby little old lady who has nothing better to do than complain!

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Statue of Elijah on Mount Carmel – Israel trip 2016

Still stable!

Stable has become one of my favourite words! Not the kind you keep your horses in, but the word that my doctors use to tell me that my cancer has not grown or spread!

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I heard that word again today when I sat down with the doctor to discuss the results of the CT scans that I had back on August 21st. Waiting almost a month was difficult and I admit to having some episodes of scanxiety during that time. It was heaviest as I sat in the waiting room early this afternoon not knowing if the news would be bad or good. I had no reason to suspect that it would be bad; no symptoms to suggest that the tumours might be active or growing again, but the knowledge is always there that that day could come at any time.

When the doctor told us that everything continues to be stable, the load was lifted in an instant and I felt lighter than air! All the way home (a two hour drive) I felt as though, had my seatbelt not been fastened, I might have lifted right off my seat!

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And so I keep on hanging on, living life to the fullest, and praising the Lord!

 

Five years and still very much alive!

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.

Good news and then…

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!

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.