Cancerversary

My 12 year cancerversary!

/ edebock / 10 Comments

Yesterday was my 12th cancerversary. Twelve years have passed since I heard those dreadful words, “It’s cancer and it has already spread.” At the time, that sounded like a death sentence, but two weeks later we learned that I have neuroendocrine cancer (NETS) which, while not curable, can be treated and usually grows more slowly than most other cancers.

One of the things that I learned early on was how important it is for patients to advocate for themselves. Last Friday proved that point. When I saw my oncologist in mid July to discuss the results of my latest CT scan which showed that a small tumour on my liver had started to grow, he referred me back to the interventional radiology specialist who did my radioembolization in March of last year. He expected that I would hear something within a couple of weeks, but when we returned from our recent trip, more than a month had passed and I’d heard nothing. On Friday morning, I called and left a message asking for confirmation that the referral had been received and, if possible, an update on what was happening. In less than half an hour, I had an appointment to see the doctor during her noon hour on Monday! I can’t help wondering how long I would have had to wait if I hadn’t called.

We actually had to wait quite awhile to see the doctor on Monday because she was tied up in a procedure that took much longer than expected. When we finally got in, she did an ultrasound and wasn’t able to find the tumour. Unfortunately, that doesn’t mean that it isn’t there. It simply means that it’s in a location that isn’t easy to see. After discussing the fact that the tumour is quite small and that I don’t have any symptoms, we decided on a tentative treatment plan, but we aren’t actually going to do anything until after my next CT scan on September 26. This battle is really a balancing act. We don’t want to treat too soon because that can limit what we might be able to do in the future, but we also don’t want to wait too long and let the tumour get too large.

After twelve years of living with this, I’ve become much more comfortable with waiting. Rather than worrying about what might or might not be happening inside me or about what the future might hold, I’m simply going to go on living my best life right now!

Image: Surya Ali Zaidan

If you would like to help, I’m still fundraising for neuroendocrine cancer research. Click here to visit my fundraising page. Although I’m nearing my $1200 goal ($100 for each of the 12 years that I’ve been fighting this disease) the campaign is still far short of what we need to fund research grants for the coming year. We could really use your help!

Another cancerversary!

/ edebock / 17 Comments

Eleven years ago today I was told that I had stage 4 colon cancer. Thankfully, a biopsy proved that diagnosis inaccurate or I probably wouldn’t be here to tell you about it today. According to the Canadian Cancer Society, the 5-year survival rate for colon cancer that has spread from its original location to distant parts of the body is 11%.

What I do have is neuroendocrine cancer (NETS), a slow-growing cancer that originated in my colon, more specifically in the cecum which is part of the colon. By the time it was diagnosed, I had been experiencing vague symptoms for several years. In fact, I was told that I’d probably had it for 7 to 10 years. At diagnosis, it had already spread to lymph nodes and my liver. Accurate stats and information about survival rates aren’t as readily available for neuroendocrine cancer because it isn’t as well-known or well-documented as many of the more common varieties, but I don’t really need to know those numbers. I just need to know how I’m doing right now and I found that out last week.

In response to my oncologist’s, “How are you?” as he entered the examining room, I replied, “I’m good.” Glancing at the notes in his hand, he enthusiastically responded, “Yes, yes you are!”

I wasn’t as exuberant about the results of the previous week’s CT scan as he appeared to be. I had hoped to hear that March’s TheraSphere treatment had completely annihilated the largest tumour on my liver. In fact, it had only shrunk by about 20%. The doctor hastened to remind me that shrinkage is always a good thing. That, combined with the facts that I’m not experiencing any symptoms and that the scan also showed “no progression of disease” is actually very good news!

I’ll have another CT and more lab work done in November, but in the meantime I’ve got lots of living to do. In addition to the many ways that I’ve found to stay active and busy in retirement, I’ve also become more active in patient advocacy over the past year. As a member of the CNETS (Canadian Neuroendocrine Tumour Society) Advocacy Advisory Board, I’m working with other patients and caregivers from across the country to try to increase awareness of our disease, shorten the pathway to diagnosis, advocate for equal access to treatment for patients across the country, and promote research into newer and better treatments. I’m also involved in meetings with a group of patients and health professionals around the world as part of an initiative by Ipsen, the pharmaceutical company that produces the medication that I’m injected with every 28 days, to try to improve the patient experience.

That reminds me of another recent change. Hubby is now giving me that monthly injection which frees us up to take it with us when we travel instead of having to be at home to wait for the nurse’s visit. A cancer diagnosis is life changing for a partner or caregiver as well as for the patient, so this is really his cancerversary too. We aren’t doing anything special to celebrate, but we’re thankful for another year of relatively good health; another year of life!

Ribbon Symbol

My 10 year cancerversary

/ edebock / 14 Comments

Do you remember where you were and what you were doing exactly ten years ago today? I do. The day is etched in my memory in vivid detail. That was the day I was told that I had cancer in my colon and that it had already spread to my liver! There was no hope or expectation then that I’d be writing about that day ten years later!

It wasn’t until a couple of weeks later that we learned that what I actually had (and still have) is neuroendocrine cancer (NETS) which, though incurable, usually progresses slowly. That gave us a glimmer of hope, but on one of our earliest clinic visits, we read that the average life expectancy for a neuroendocrine cancer patient was five years following diagnosis. I now know that that information was probably already outdated. There are members of my online patient groups who have been living with this disease for 10, 15, even 20 years or more. Others, however, have not fared as well, so I’ve learned to consider every day a gift.

On a day like today, I could dwell on the fact that over the past ten years I’ve had two major surgeries, been exposed to an enormous amount of radiation, had dozens of tests and scans of various kinds, lived in 28 day increments between injections, had 128 of those “butt darts”, and on and on. Or, I could count my blessings; focusing instead on the things that I’ve been able to do and enjoy over the past ten years.

Since my initial diagnosis, we’ve seen our family grow by one daughter-in-law and four grandchildren! In spite of the worldwide pandemic that put a damper on travel for a time, we’ve holidayed in Nova Scotia, BC, and the Yukon, and traveled to Israel, Europe (Portugal, Italy, France, Belgium, and the Netherlands), and Mexico four times. We purchased a kayak and have spent many hours paddling quiet lakes and rivers. Over the past ten years, we’ve spent 240 nights in our trailer and I’ve played over 350 rounds of golf. We’ve tried new things like snowshoeing and joined a seniors’ bowling league. I’ve edited 1346 microloan descriptions for Kiva and joined a prison letter writing ministry. I’ve had the opportunity to teach two women to read and tutored an ESL student. And again, the list goes on!

Life is good! Yes, I have cancer. Yes, some of my tumours have grown a bit recently, but I still feel 100%. I don’t know what the future holds, but neither does anyone else. I have an army of people who pray for me and we know who holds my future. I’ll just focus on today!

So what am I doing to celebrate this momentous occasion? I suppose I could have planned something special, something big, but I’ve been so busy just living life that this one crept up on me! I have absolutely nothing planned, but that’s okay. I’m alive and living life to the fullest and that’s all that really matters!

Screenshot 2023-08-27 at 3.19.49 PM

My final goal

/ edebock / Leave a comment

Just a quick HOOFING IT Across Canada post today as I have grandchildren here and don’t intend to spend much time sitting at the computer! With just two weeks left in the fundraising campaign for neuroendocrine (NET) cancer research, I have walked 136.56 km and raised $1595 in donations. If you’ve been following my progress, you know that I originally set 100 km as my walking/hiking goal. When I accomplished that before the middle of this month, I decided to add another 50 km to my distance. Now, with that goal in sight, I’ve decided to push myself a little bit further.

The distance by road from my front door to the Cross Cancer Institute in Edmonton, Alberta is 177 km. That’s where I receive all my NET cancer care, so 177 km seems like a very meaningful goal to pursue. It might be a bit of a stretch, but I CAN DO IT!

I also passed my fundraising goal of $1500 in early August. It hasn’t grown a lot since then, but I would dearly love to see a few more donations come in. I’m still in the top ten fundraisers and would love to hold onto that position, but much more important is the need for funds to continue research into this unusual cancer. It will be 7 years tomorrow since I started this journey and while there’s been progress made, we still know nothing about what causes NET cancer and have a very long way to go to find better treatments and ultimately a cure.

The overall goal for the HOOFING IT Across Canada campaign is $100,000. This afternoon we’re sitting at just under $54,000, so we still have a long way to go! You can help by visiting my fundraising page and adding to my total. Thank you so much for being with me on this journey!

287226b0-bda3-11ea-a9f0-2d2856e5b296