Another HOOFING IT update

One month ago today I started counting kilometres as part of the Canadian Neuroendocrine Tumour Society (CNETS) HOOFING IT Across Canada fundraising challenge. My initial goal was to walk and/or hike 100 km and raise $1500 for NET cancer research by the time the campaign comes to an end on September 7.

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So, how am I doing?

During the month of July, I walked 70.23 km, mostly up and down the streets of our tiny town and on the walking trail around the perimeter of the golf course. When that got too boring I headed out of town and enjoyed a couple of walks in the country. Most of the time, I wear my zebra stripes when I’m walking. Our local newspaper did an article on me on July 1st, so I’m hoping that when people see me, they’ll think, “There goes that lady who’s raising money for that rare cancer that she has. I should really make a donation.”

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Thanks to 22 big-hearted donors, I’ve been able to raise $1295 so far which places me amongst the top 10 fundraisers. I’m hoping that, with the help of a few more generous people, I can meet or even surpass my goal.

For me, a NETS cancer patient living in a rural area where I’m very much on my own, being a part of this effort has definitely been a morale booster. Members of the neuroendocrine cancer community across Canada have committed to racking up as many kilometres as we can by walking, hiking, kayaking, swimming, cycling, roller-blading, or any other forward moving activity that we can think of and tracking our individual distances. The results have been beyond amazing! Our original goal was 5,514 kilometres, the distance from Newfoundland and Labrador to the Yukon. We surpassed that in less than two weeks and doubled our goal to 11,028 km, the distance across Canada and back. Would you believe that we’ve already reached that milestone? Our latest goal is 20,000 km. We’re a determined bunch and we’re going to keep criss-crossing Canada as many times as we can until the end of this campaign!

Unfortunately, we’re not doing as well in the fundraising department. So far, we’ve raised $36,399 which is admirable for a group of just 78 people, but that’s a long way from our goal of $100,000. With just five weeks left we really need to bear down and focus on finding donors to help us meet our goal so that we can continue to support critical research projects that will eventually find the answers we so desperately need; answers to what causes this disease, how to detect it earlier, how to treat it more effectively, and ultimately, how to cure it.

I hate to continue nagging, especially when times are tough for many people, but if you haven’t already made a donation, would you please consider visiting my fundraising page and giving us a much needed boost? No amount is too small.

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Finding trends in my closet

LogoAs most of you already know, I don’t shop for clothes online and I’ve mostly been staying away from brick and mortar stores since the onset of Covid-19. That leaves shopping my closet and trying to create new looks with old clothes.

When I researched fashion trends for spring and summer 2020 for an earlier post, one of the looks that appealed to me and that I could see myself wearing was the suit with Bermuda shorts.

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Had I still been teaching instead of happily retired, I could definitely have seen myself investing in one of these menswear inspired suits. They’re a nice take on business casual and if the trend doesn’t last, the pieces could still be worn separately. I didn’t realize at the time that I could create a similar look using pieces from my own wardrobe!

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I wear capris more often than shorts as I don’t think that my knees are amongst my more attractive features, but I do have several pairs of shorts including these black ones from Nike Golf. The top is cabi and the little black jacket is from Canadian fashion retailer, Reitmans. All three pieces have been in my wardrobe for several seasons.

I’m not really going anywhere these days that requires even this level of dressy, but I did have some business to take care of at the bank yesterday and even though it wasn’t necessary, it felt nice to dress up just a bit.

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HOOFING IT Across Canada update:

I’ve now walked 51.37 km since the beginning of the challenge. With over 6 weeks left, I should have no problem surpassing my personal goal of 100 km. Donations have slowed down a bit, but thanks to many generous donors, I’ve raised $1095 which is 73% of my $1500 goal. As the Canadian neuroendocrine cancer community, however, we have a long way to go to raise the $100,000 needed to continue funding much needed research. At present, we’ve raised just over $31,600.

 

and BACK!

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If you’ve been reading my blog recently, you already know that I’m participating in a fundraiser called HOOFING IT Across Canada. We, the Canadian neuroendocrine cancer (NETS) community, are working together in an effort to raise $100,000 for much needed neuroendocrine cancer research. Participants have been racking up as many kilometres as we can by walking, hiking, kayaking, swimming, cycling, roller-blading, or any other forward moving activity that we can think of and tracking our individual distances. Our original goal was to record 5,514 kilometres, the distance from Newfoundland and Labrador to the Yukon, but I am very proud to announce that in less than two weeks, we’ve already surpassed 4000 km! As a result, we have a brand new goal. We’re not just HOOFING IT Across Canada, we’re HOOFING IT Across Canada and BACK! That’s right! Our new goal is 11,028 km.

Personally, I’ve walked over 33 km since July 1st. While that’s a tiny fraction of the distance that’s been covered (it helps that we have some long distance cyclists and runners in the group), I’m one third of the way to reaching my personal goal of 100 km. At this rate, I may have to increase my goal too!

Of course, the main purpose of the HOOFING IT Across Canada campaign is to raise funds for research. Once rare, NETS is now the fastest growing class of cancers worldwide, accounting for approximately 2% of all cancers. We need to know why this is. We need safer and more effective methods to prevent, detect, diagnose, treat, and ultimately cure this disease. Research is the key to transforming and saving lives and research takes money.

HOOFING IT is the easy part. Asking people for money is more difficult, especially in today’s economy when many are facing financial hardship and don’t have extra to give. By last night, however, we had raised over $20,000 and were 20% of the way to meeting our goal. I’m extremely grateful to those who have made donations on my behalf. At $875, I’m almost 60% of the way to meeting my personal goal of $1500. If you would like to add to this amount, please click here to visit my fundraising page. No amount is too small. Every dollar brings us one step closer to finding the answers we’re looking for.

In the meantime, I’m off to the city tomorrow for CT scans to see if there’s been any change to my NETS tumours over the past six months. I won’t be meeting with the doctor and finding out the results until August 6, so I’ll try to provide an update after that.

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Walking in the rain

The past few days have been sunny and warm, just the way summer should be, but today has been mostly cool and cloudy again. I really didn’t feel like putting on my zebra stripes and going for a walk. Cancer’s a bit like that. I don’t only have it on days when I feel like it! I wake up with it every morning and I go to bed with it every night. These days, I’m not just walking because I want to. I’m walking to increase awareness of neuroendocrine cancer (NETS) and to raise funds for research.

As I walked, I thought about how fortunate I am to be able to do this. I don’t live where I’m able to attend support group meetings nor do I really feel that I need them, but I am part of several online groups for patients and caregivers. Every day I hear from people whose NETS stories are so much worse than mine. I walk for them as well as for myself. I walk in memory of those we’ve lost and I walk for those who will be diagnosed with this increasingly common type of cancer in the future. I walk in hope that money for research will eventually result in a cure.

I was walking in the exact opposite corner of our small town when it started to rain! (I think I need to find a zebra striped umbrella.) There was no way that I could suddenly transport myself back to the comfort of my warm, dry house. I had to keep walking. Cancer’s like that too. When you’re diagnosed, you suddenly find yourself a long way outside your comfort zone and there’s no going back. I treat my life with cancer a lot like a walk. I just keep putting one foot in front of the other and moving forward. I refuse to stand around in the rain feeling sorry for myself!

When I walk through the corridors of the cancer clinic as I’ll do again later this month, I can’t help feeling like I don’t really belong there. I look and feel so well compared to most of the people around me. It’s called “survivor’s guilt” and it’s common to those of us who have or are surviving cancer. We can’t help asking “why them?” and “why not me?” I only know that when all this started, God promised to take care of me and, while it hasn’t always been smooth sailing, He’s been doing a great job of it ever since. So here I am, feeling strong and able to HOOF IT Across Canada!

Since the campaign started on July 1, I’ve logged 12.96 kilometres. Reaching my goal of 100 km by September 7 should be no problem, but far more important is the money that I raise for NETS cancer research. As a Canada-wide community, we hope to raise $100,000. I set my personal goal at $1500 and at $550, I’m 36% of the way! Thank you so very much to those of you who have already donated. I’ll try not to bore you with too many updates! For those who haven’t donated yet and who would like to, you can find my personal fundraising page here.

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It’s Canada Day and Day 1 of HOOFING IT Across Canada!

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Today is Canada Day, the 153rd anniversary of our country’s birth as a nation. It’s also Day 1 of the HOOFING IT Across Canada fundraising campaign for neuroendocrine cancer research. Today I begin counting the kilometres that I walk and/or hike between now and September 7th. Joining with participants from the neuroendocrine cancer (NETS) community across the country, we hope to record 5,514 kilometres, the distance from Newfoundland and Labrador to the Yukon! We also hope to raise $100,000!

I’m very grateful to those who made donations following Saturday’s post. Thanks to their generosity, I’ve already raised slightly more than 20% of my goal. There’s still a long way to go though!

If you haven’t already, I hope that you’ll consider going to my fundraising page and making a donation. No amount is too small! Every cent received will go toward neuroendocrine cancer research and hopefully bring us closer to understanding what causes this disease and to ultimately finding a cure.

I’ve been asked several questions regarding making a donation, so I’ll answer those here:

  1. What methods of payment are accepted?  You can make your donation using a credit card (VISA, MasterCard or American Express), PayPal, or a CanadaHelps gift card. 
  2. Can I donate from outside Canada?  Yes! Absolutely! Research conducted in Canada will benefit patients around the world. Many of my readers live in the US or elsewhere and some have already made donations. Your credit card statement will automatically show the value of your donation in your local currency.
  3. Will I receive a tax receipt?  Again, the answer is yes. When you make a donation, you’ll be asked for your email address and a tax receipt will be sent to that address immediately. Only Canadian tax receipts are issued however, so if you’re donating from elsewhere, you might want to check your country’s income tax policies to see whether or not you can use a Canadian tax receipt when you file your tax return.
  4. Can my business make a donation?  Yes. Simply select the “Corporate/Group” option under Donor Type when filling out the Donor and Tax Receipt Information section.

I hope that helps. If you have any other questions, please let me know and I’ll do my best to answer them. In the meantime, I’m off to watch a Canada Day parade later this morning and then it’s time to start walking!

HOOFING IT Across Canada!

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Today I’m super excited to share something that’s very close to my heart and to give you an opportunity to participate!

It’s almost 7 years since I was diagnosed with 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. That’s why I’m going to be HOOFING IT Across Canada with CNETS Canada!

Between July 1st and September 7th, the Canadian neuroendocrine cancer community will be working together in an effort to raise $100,000 for neuroendocrine cancer research! Participants will rack up as many kilometres as they can by walking, hiking, kayaking, swimming, cycling, roller-blading, or any other forward moving activity that they can think of and tracking their individual distances. Together, we aim to record 5,514 kilometres, the distance from Newfoundland and Labrador to the Yukon! In the days of Covid-19, the beauty of this is that we can each participate in our own community while practicing appropriate social distancing.

My goal during this campaign is to walk and/or hike 100 kilometres and to raise a minimum of $1500. That’s where you come in! 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 that is received by CNETS will be directed to neuroendocrine cancer research. We need to know what causes this disease and we need to find a cure!

If you’re in Sedgewick, you’ll probably see me walking around town or out on the walking path wearing my zebra stripes and from time to time I’ll post updates here on the blog.

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Please make a donation!

Celebrating survival!

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Today, the first Sunday of June, is National Cancer Survivors Day, an annual, worldwide celebration of life set aside to honour the millions of people worldwide who are living with and beyond cancer and to raise awareness of the challenges that they face.

Major advances in cancer prevention, early detection, and treatment have resulted in longer survival, but a cancer diagnosis can leave a host of problems in its wake. Physical, financial, and emotional hardships often persist for years after diagnosis and treatment. Depending on where they live, survivors often contend with rapidly rising drug costs, inadequate insurance coverage, difficulty finding or keeping employment, and a lack of understanding from family and friends. Despite these difficulties, cancer survivors can live active, productive, inspiring lives.

So what is a survivor? To many, the term ‘cancer survivor’ suggests a person who has beaten their cancer; perhaps one who has been cancer free for several years, but I like the definition used by the National Cancer Survivors Day Foundation. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

In other words, I am a survivor! In fact, I’m a three times survivor.

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I live with cancer every day. Unless a cure is found for neuroendocrine cancer (NETS) within my lifetime or God performs a miracle on my behalf, I will never be cancer free. People have a hard time grasping the idea of a chronic cancer. The usual assumption is that patients either die of their disease or they are cured, thereby becoming cancer survivors, but I look at my situation differently. I may eventually die of my cancer or I may die with it, but either way, I am a survivor! Fortunately my NETS is stable at this point and it doesn’t significantly impact my day to day life. I’ve had all the PRRT treatments that I can have, but a monthly injection given here in my home by a visiting nurse seems to be keeping things under control. I had my 87th of these “butt darts” just over a week ago.

I’m also a cancer survivor in the more tradition sense, as in one who had the disease, but is now free of it. As many of you know, seven months after my NETS diagnosis, I was diagnosed with a second, completely unrelated cancer that was removed surgically. Six weeks of radiation followed and, since that time, there has been no recurrence.

Cancer number three, most likely caused by the radiation that I received for the other two, was discovered in my thyroid almost exactly a year ago. Though it’s not a particularly aggressive form of cancer, it’s the one that concerns me the most right now. I was supposed to see my specialist two months ago and have an ultrasound to determine whether or not the cancer is growing. Thanks to Covid-19, that didn’t happen and it’s been eight months since my thyroid was last looked at. Though my specialist still isn’t seeing patients except in emergency situations, I decided to do a bit of self-advocating and his office is now in the process of trying to arrange for me to have an ultrasound done in a hospital closer to home in a small city that has only had one Covid-19 patient.

Yes, in spite of all this, I am a survivor! Survivors are people from all walks of life, of all ethnicities and income levels. They’re children, moms, dads, and grandparents. They may be your coworkers, friends, and loved ones. Traditionally, National Cancer Survivors Day celebrations have included parades, carnivals, health fairs, awareness walks, candle-lighting ceremonies, and other community events. This year, due to Covid-19 restrictions, the celebrations may be somewhat more subdued, but life with and after cancer goes on and it ought to be about more than just surviving. It ought to be about living well and that’s always something to celebrate!

 

What’s my risk factor?

Before I even begin this post, especially for those who haven’t been here before, let me emphasize that I have absolutely no medical training. I am simply a neuroendocrine cancer (NETS) patient seeking answers and doing the best I can to weather the very unusual days that we all find ourselves in.

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Does my cancer and the PRRT treatments that I’ve received mean that I’m at higher risk of contracting COVID-19 than the general population? Not as far as I know. The reality, as I understand it, is that no one has immunity to this virus. It’s a brand new disease that our bodies have never encountered before; never had an opportunity to develop antibodies to. That’s why I’m doing what I think everyone should be doing. I’m not hiding out in fear, but I’m hunkering down at home and only going out for necessities such as food and medications.

When we hear about those people who are most vulnerable to COVID-19, this refers to those who may be at higher risk for more serious complications IF they contract the disease. That’s why it’s so important for all of us to do our part in helping prevent these populations from getting the COVID-19 virus in the first place. Am I one of the vulnerable ones? Certainly, my age puts me at higher risk than those who are younger, but I haven’t been able to find any information regarding NETS and COVID-19. In reality, such information probably doesn’t exist. At least, not yet.

So, what are those risk factors? 

  • An older adult  –  Recent figures show that more than 50% of the patients who have been admitted to an ICU with the disease and 80% of those who have died were over the age of 65. At 67, I’m at the low end of that population, but still within the high risk category.
  • People who have serious underlying medical conditions such as:
    • Heart disease  –  Not me!
    • Diabetes  –  I have been diagnosed as pre diabetic, but maintaining a careful, well disciplined diet has kept my blood sugar well regulated, so I doubt that this would put me at high risk.
    • High blood pressure  –  Experts indicate that if a person’s blood pressure is under control and they don’t have other risk factors, they probably aren’t at any greater peril than the general population. I’ve been on hypertension medication for several years and it’s been keeping my blood pressure under control but, of course, I do have other risk factors.
    • Chronic respiratory diseases  –  No again!
    • Cancer  –  This one raises lots of questions for me. Cancer is such a broad category. The word actually refers to any of the 200 different diseases, affecting many parts of the body, that are characterized by the uncontrolled growth of cells that invade and damage the body’s normal tissues. Do all of them put a person at higher risk for COVID-19 complications? I doubt it, but what about the 3 completely unrelated cancers that I’ve been diagnosed with since August 2013? That’s right, 3! As I mentioned above, I haven’t been able to find any information about NETS and COVID-19, but what about my untreated thyroid cancer? At present, there has been no indication that thyroid conditions place a person at jeopardy.
  • People who have a compromised immune system from a medical condition or treatment (e.g. chemotherapy)  –  In spite of having or having had 3 different cancers over the past 6 1/2 years, I’ve never had chemotherapy, but I haven’t been able to find any information on how PRRT affects the immune system, so once again, I’m left with questions.

The immune system is the body’s natural defence system. Unfortunately, there isn’t a simple questionnaire that will tell you how strong yours is. There are, however, several signs that you might have a weakened immune system:

  • Stress  –  Stress decreases the body’s lymphocytes, the white blood cells that help fight off infection. Thankfully, my life is relatively free of stress these days. For the most part, I think I can say with the apostle Paul, “I have learned to be content whatever the circumstances.”  Philippians 4:11b
  • Frequent colds or infections  –  I’ve had two colds this winter; one mild and one nasty. That’s more than I usually get, but I recovered from both in a reasonable length of time and I don’t remember the last time I’ve needed an antibiotic for an infection.
  • Frequent diarrhea or constipation  –  Diarrhea was one of the most obvious symptoms of my NETS cancer before it was diagnosed. Now medications tend to cause the opposite problem, but I can’t blame that on my immune system.
  • Wounds are slow to heal  –  I don’t think so. I haven’t had any serious wounds in recent years, but minor ones heal just fine.
  • Fatigue  –  When your immune system struggles, so does your energy level, but for the most part mine is good. My father passed away in the wee hours of March 1. I got almost no sleep that night and I definitely discovered that pulling an all-nighter in my 60s isn’t as easy as it was in my 20s! The week that followed was pretty exhausting too, but three weeks later, I’ve bounced back and feel completely rested. That seems to speak well of my immune system.

I do know, however, from regular blood tests, that my hemoglobin tends to be slightly on the low side which would make me somewhat vulnerable to infection and disease. On the other hand, I do all the right things to keep my immune system as healthy as I can. I don’t smoke, I eat a healthy diet, I maintain a healthy weight, I exercise regularly, I drink alcohol only in moderation, I get adequate sleep, I try to minimize stress, and I even wash my hands frequently!

So, what is my risk factor? I can only give a somewhat educated guess. Since I live in a sparsely populated area and I’m staying home most of the time, I’d say that my risk of getting COVID-19 is quite low. On the other hand, IF I do get it, my risk of suffering complications is probably moderately high.

Am I worried? No, but I’m definitely taking all the recommended precautions. I hope you are too!

Fine, thanks!

It’s been quite awhile since I posted an update about my health. That’s because there really hasn’t been anything new to report. For someone with two kinds of cancer, that’s actually a very good thing, but I know that there are those of you who want to know what’s going on, so here’s the latest.

It’s already been over six months since I had my final PRRT treatment. Other than monthly injections of Sandostatin that are mainly meant to control symptoms, I’m not presently receiving any treatment for my neuroendocrine tumours (NETs). That’s a bit disconcerting, especially when more than one fellow zebra that I’ve come to recognize through a Facebook support group has succumbed to the disease in recent months. It’s really hard when one of those announcements shows up in my news feed.

On the other hand, I’m feeling 100% healthy, so most days it’s easy to ignore the fact that there are things lurking inside me that shouldn’t be there and that could begin to grow or spread at any time. I’m blessed to be able to live a full and productive life. I’m lifting weights again this winter and I’ve recently dusted off the treadmill and started using it again. If anything, I’m feeling better and stronger than I did six months ago.

A week before Christmas, I was in Edmonton for CT scans and blood work to find out if I’m really as healthy as I feel and yesterday we met with the doctor to get the results. Sometimes I suffer from a few days of scanxiety before an appointment like this one, but this time I felt completely at ease. I just kept reminding myself that God promised to take care of me over six years ago when I was first diagnosed and He has been faithfully doing that ever since. There’s no better place for me to be than in His hands.

When we sat down with the doctor yesterday all I really needed to hear was one word. Stable! Nothing has changed. No growth, no spread! Nothing to worry about. So, unless I begin to experience symptoms (which I haven’t since treatment began), we go through the same routine six months from now and hopefully receive the same good news again… and again… and again.

The CT scans reveal very little about my thyroid cancer which is entirely different and unrelated to my NETs. For news about that one I’ll have to wait until early April when I see that doctor again and he uses ultrasound to take a closer look and measure whether or not there’s been any change.

In the meantime, when you see me and ask, “How are you?” if I answer, “Fine, thanks!” that’s because I really am!

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Canada’s going black and white for NET Cancer Day!

November 10 is World NET Cancer Day, a day set aside to raise awareness of neuroendocrine cancer, the uncommon disease that I’ve been fighting for the past six years. It’s 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.

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Zebra stripes symbolize how this rare cancer can go undetected for many years. 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. As a result, NETs is frequently misdiagnosed.

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It would appear, however, that through the tireless efforts of NETs patients and advocates, we’re beginning to be heard. This year on November 10, the following landmarks across Canada are lighting up in black and white for NET Cancer Day!

  • City Hall  –  Vancouver, British Columbia
  • High Level Bridge  –  Edmonton, Alberta
  • Calgary Tower  –  Calgary, Alberta
  • City Hall  –  Lethbridge, Alberta
  • CN Tower  –  Toronto, Ontario
  • City Hall Towers  –  Toronto, Ontario
  • Niagara Falls  –  Niagara Falls, Ontario
  • Hamilton Signature Sign  –  Hamilton, Ontario
  • Tower of Olympic Stadium (Parc Olympique)  –  Montreal, Quebec

If you’re near one of these locations on Sunday, I hope you’ll stop, take a photo, and post it on social media with the hashtag #LetsTalkAboutNETs @cnetscanada. Every bit of exposure helps raise awareness and may contribute to someone getting a quicker diagnosis.