Hoofing it

Another cancerversary & another health update

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I think 13 must be my lucky number today!

Zebra-striped number 13 standing in a grassy savanna

Today it’s been 13 years since I was told that I had stage 4 colon cancer. Thankfully, what sounded like a death sentence at that moment turned out to be stage 4 neuroendocrine cancer (NETS) that originated in my intestinal system. That’s a completely different diagnosis and one that usually has a much better prognosis. It’s incurable, but it’s treatable and so far the various treatments that I’ve had as well as the injections that hubby gives me every 28 days have been keeping it successfully under control.

The fact that I’ve survived this long and that I’m what a fellow NET patient recently referred to as a “healthy sick person” actually has very little to do with luck. Ultimately, God has my health in His hands, but He has chosen to place me in the care of a large team of amazing medical professionals. I am monitored at least every 3 to 4 months and sometimes more often depending on what’s going on.

The most recent blood tests results that I’ve seen all look okay. A few of them are flagged as abnormal, but not alarmingly so. I’ll have my next CT scan on Monday and I’m leaving on another short term missions trip the following day! Even if something nasty and unexpected shows up on the scan, I know this slow-growing cancer well enough by now to know that a couple of weeks away won’t make a difference. After all, I’d probably had it for 10 years by the time it was discovered and even then my diagnosis was delayed by 6 months when the doctors who saw it on an ultrasound and a CT scan that I had while teaching in China didn’t know what they were looking at.

I also attribute my survival and my well-being to all the research that has been done and continues to be done into the cause, treatment, and hopefully someday a cure for this particular cancer. That’s why I’m still walking or hiking at least 5 days a week as part of our annual Hoofing It fundraiser for NET cancer research. Unfortunately, it isn’t going as well as in previous years. So far, I’ve only raised $350 of my $1300 goal ($100 for each of the years that I’ve been fighting this disease) and overall, we’re less than one-third of the way to our $60 000 goal. If you would like to help, please click here to visit my fundraising page. Every dollar helps and every cent goes to research.

HOOFING IT again!

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Once again, HOOFING IT, the annual CNETS (Canadian Neuroendocrine Tumour Society) fundraiser for NET cancer research, is up and running. Between June 1st and September 30th, 2026, the Canadian neuroendocrine cancer community will be working together to raise $60,000 to fund research grants! I wasn’t actually planning on participating this year as I really hate asking the same people for money again and again, but then I read about the recipients of last year’s grants and I was reminded just how important this campaign is. Without the research that led to the various treatments that I’ve received over the past 13 years since I was diagnosed with NETs, I probably wouldn’t be here today!

Once the shock of being diagnosed with a little known and poorly understood cancer, for which there is no cure, wore off, it became important to me to do what I could to raise awareness of the disease and to advocate for more research and greater access to improved diagnostics and treatment. I also believe that no one should have to fight cancer alone. That’s why I co-lead the Alberta NET patient support group and why I’m once again HOOFING IT to help raise funds for NET cancer research! 

 

In addition to raising money to fund much-needed research, the HOOFING IT campaign also encourages participants to be physically active. There is a component to the program that allows us to track a wide range of activities and to earn points for them. Some patients aren’t well enough to engage in physical activity though, so that part of HOOFING IT is entirely optional. Personally, I’m not concerned with tracking my activity or earning points. My goal is to walk or hike at least 5 days a week until the end of September and to raise a minimum of $1300, $100 for each year that I’ve been fighting this cancer.

That’s where you come in! If you’re able, I’m hoping that I can persuade you to visit my fundraising page and make a donation. Charitable donation receipts will be issued for all donations of $20 or more, but no amount is too small! Every cent that is received will be directed to neuroendocrine cancer research. We need to know what causes this disease. We need better diagnostics, more effective treatments, and ultimately, we need to find a cure!

NET Cancer Day 2025

/ edebock / 4 Comments

Once again, today is NET Cancer Day. November 10th is a day set aside to increase awareness of neuroendocrine cancer and to promote improved diagnostics, treatments, care, and research, but for those of us who live with the disease, every day is NET Cancer Day.

Here are a few alarming facts that point out why a day like today is vital:

  • Over 90% of all NET patients are incorrectly diagnosed and initially treated for the wrong disease!
  • The average time from onset of symptoms to correct diagnosis often exceeds 5 years!
  • Over 50% of NET patients are already at stage 3 or 4 when diagnosed!
  • Many primary care physicians are unfamiliar with NETS and some still falsely believe that it isn’t even cancer!

These are just some of the reasons that I have become involved in patient advocacy over the past couple of years. Once considered a rare disease, NETS has become the fastest growing class of cancer worldwide. Although the reasons for this aren’t fully understood, it’s likely due to increasing awareness and better diagnostics.

In addition to my role as a member of the CNETS (Canadian Neuroendocrine Tumour Society) Advocacy Advisory Board, I’ve become actively involved in trying to improve the patient experience in a number of other ways. I had the opportunity to participate as a patient representative in an Ipsen project to design an injection toolkit to make the experience easier for patients who are newly prescribed the medication that I receive every 28 days. Ipsen is the pharmaceutical company that produces the drug.

Also, if you’ve been reading my blog you know that I participated in this summer’s CNETS “Hoofing It” fundraiser. With the generous support of many, including some of you who read the blog, we managed to raise over $40,000 for NET cancer research here in Canada. An additional bonus for me was the fact that the “hoofing it” that I committed to as part of this initiative got me out walking almost every day. Now that the campaign is over and the weather has turned cold, daily walking has become a habit and I’ve dusted off the treadmill in the basement so that I can keep it up over the winter!

Another big opportunity came my way earlier this year when I was asked to co-lead the CNETS Alberta patient support group that meets online once a month. This really was a big step for me as I’d never been part of a support group before! Every month I hear stories from patients who were initially misdiagnosed, who feel confused or unheard, whose symptoms have been minimized or dismissed as all in their head, who feel lost trying to navigate the health care system, or who don’t know how to advocate for themselves. More than ever, I’ve come to realize how badly we need to continue raising awareness and promoting better diagnostics, treatments, care, and research. One day a year just isn’t enough!

And now, on a more personal note, you may remember that in my 12 year cancerversary post at the end of August, I mentioned the latest tumour on my liver. A week from today, on November 17th, I’ll be having a CT guided ablation to destroy it. A needle-like probe will be inserted through my abdomen and into the tumour where it will deliver microwave energy to kill the cancer. This is done as a day procedure, but I’ll be required to stay in the city overnight in case of complications. I’m not sure what the recovery will entail, but hopefully I’ll be back on the treadmill before long!

 

No one fights cancer alone

/ edebock / 7 Comments

My cancer is on the move again and so am I. It’s been 5 years since I last participated in the annual CNETS (Canadian Neuroendocrine Tumour Society) Hoofing It fundraiser and I’m late to the party this year, but I’ve decided to get involved again.

It’s been 12 years since I was diagnosed with stage 4 neuroendocrine cancer (NETs). Once the shock of learning that I had a cancer that I’d never heard of and that I’d be living with it for the rest of my life wore off, it became important to me to do what I could to help raise awareness of this little known disease and to support fundraising efforts for research, better treatments, and patient support. If it wasn’t for the research that organizations like CNETS fund, I probably wouldn’t be here today, so this is definitely something that’s very close to my heart!

I don’t think I’ve mentioned it on the blog before, but several months ago I became co-lead of the CNETS Alberta Patient Support Group that meets online once a month. Every month I hear from patients and caregivers whose lives have been turned upside down by this disease. Some are newly diagnosed and looking for answers. Others have been battling this for longer than I have and some are ready to give up hope.

After 16 months of stability following the radioembolization treatment that I had in March of last year, my cancer is growing again. Another tumour on my liver has started to increase in size and I’m waiting to find out how we’re going to treat it. At this point, my other tumours continue to remain stable and the cancer hasn’t spread to any new locations, but this is definitely beginning to feel a bit like a game of Whack-a-Mole! We haven’t exhausted all the possible treatment options yet, but this new development has reminded me how important it is that research into new treatments continues to move forward.

In past Hoofing It fundraisers, participants kept track of how many kilometres they walked, hiked, biked, or paddled, but not all patients are physically capable of doing those things. This year points are being assigned for a wider variety of physical activities. I’m not concerned about earning points though. My goal is simply to walk or hike at least 5 days a week until the end of September & to raise a minimum of $1200.

The walking part is easy. I was already doing that before we went to Europe, but since arriving home last month, I’ve been a bit lazy. Hopefully participating in this endeavour will provide the motivation I need to keep moving.

The $1200 is where you come in! As my new t-shirt says, no one fights cancer alone. I’m hoping that I can persuade you to visit my fundraising page here and make a donation. No amount is too small! Every cent received by CNETS during this campaign will go directly to neuroendocrine cancer research. We need to know what causes this disease, we need more and better treatments, and we need to find a cure!