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!

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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!

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

On being radioactive

Though 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!

NET Cancer Day 2017

My weekly Fashion Friday feature is taking a break today as I have something much more important to share. 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. Those of us who have been affected by NETS (neuroendocrine tumours) hope that for today our voices will rise above those of all the more well-known and prominent diagnoses. Today is our day to be heard by decision makers, health professionals and the general public. In addition to raising awareness, we want to encourage more funds for research, treatments, and patient support; and to advocate for equal access to care and treatment for NETS patients around the world.

So as not to disappoint those of you who came looking for a fashion post, here’s what I’m wearing today… my CNETS Canada t-shirt. I don’t usually wear graphic tees, but the message on this one is a vital one.

If you don’t suspect it, you can’t detect it. 

So what’s with the zebras? Medical students are taught when hearing hoofbeats, to think of horses, not zebras. Neuroendocrine tumours are difficult to diagnose. Though they are the fastest growing class of cancers worldwide, their symptoms are usually vague and similar to more common health problems.  Many family doctors have never encountered a NETS patient. When presented with symptoms like stomach pain and diarrhea, they naturally think of things like Irritable Bowel Syndrome, Crohn’s Disease or lactose intolerance. They think of horses, not zebras. Hence, the zebra became our symbol.

As with all 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.

NETS arises from neuroendocrine cells which can be found anywhere in the body. The most common types are found in the lungs, bronchi, thymus, pituitary, thyroid, adrenal glands, intestines, pancreas, appendix, and rectum. They may also occur in other areas including the ovaries, cervix, testicles, and spleen. NETS is a slow growing cancer that is often misdiagnosed. By the time a correct diagnosis is made, the cancer has often spread. In fact, 60 to 80% of NET cancer patients are diagnosed with advanced disease.

My primary tumour was in my colon. At the time of diagnosis, I also had three tumours on my liver and one in a lymph node. It was estimated that I had already had the disease for ten years when it was detected quite by accident! Off and on for at least seven or eight years I had been experiencing most of the common symptoms which include abdominal cramps, diarrhea, flushing of the skin, pounding of the heart, and wheezing or shortness of breath. Neither I nor my family doctor had any idea why.

Today coffee shops across Canada and around the world, including The Wooden Spoon here in Sedgewick, 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.

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 so much!

 

 

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.

Wink!

It’s Wink Day again today, a day set aside by the Canadian beauty industry to bring awareness to the appearance-related effects of cancer. For over 20 years, the industry has helped tens of thousands of Canadian women undergoing cancer treatment look and feel like themselves again with programs such as Look Good Feel Better and FacingCancer.ca.

Last year and the year before on Wink Day, women were 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 used 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. On both of those occasions, I happened to be in Calgary visiting my daughter, so we both took part.

This year they’ve dropped the blue eyeshadow and are simply asking women to post pictures of themselves winking and share who it is that they’re winking for. It could be a family member, friend or acquaintance; anyone who is experiencing the effects of cancer treatment. I decided to wink for neuroendocrine tumour (NETS) patients worldwide. Since the zebra is our symbol, here’s my attempt at a zebra wink!

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The dots keep disappearing!

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)