What’s your thing?

Yesterday’s post included this quote from Donna McNutt, Instagram’s Cancer Fashionista, It has now become my mission to tell others, find your thing, the thing that makes you whole, do not let cancer take it.” 

For me, that thing, apart from my faith, is writing. Fashion is fun. Travel is a passion. Reading, dancing, golfing, camping, hiking, kayaking, keeping fit, and participating in community theatre are all things I enjoy doing, but writing is the one thing I have to do. Long before cancer, writing was who I am.  

I first knew this in Mr. Geary’s grade 12 English class. I knew it in university when I loved the hours and hours spent researching and writing papers. I knew it when, as a young stay-at-home mom, I put my babies down for their afternoon naps, pulled out my typewriter, and worked on a correspondence course on non-fiction technique offered by the Alberta Culture Film and Literary Arts division. I knew it when, as a member of the now defunct Flagstaff Writers organization (Alberta, not Arizona), I had occasional pieces published in our column in the local weekly paper. I knew it when I sold a few articles to larger publications and savoured the feeling of a cheque in my hands. 

When my children were a bit older and I returned to teaching school, I discovered that there simply weren’t enough hours in the day for writing. Thankfully, for that period of time, passing on my love of reading and writing to my students fulfilled the same passion in me. As soon as I retired, however, the need to write was back. I’d always assumed that I would return to freelance writing, but then came blogging. As many of you know, I started Following Augustine to share our year of teaching English in Japan with friends and families at home. I had no idea then that it would still be going strong more than a decade later! 

Though receiving those cheques for published articles was nice, I discovered that I didn’t need to sell my writing to feel fulfilled by it. I just need to know that someone enjoys reading it. That’s one of the reasons that I haven’t attempted to monetize the blog. I prefer to maintain the freedom to write whatever I want without having to consider whether or not it’s consistent with the values of the brands that I’d be representing. For me, writing is not a job, it’s simply who I am.  

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Now, back to Donna’s wise advice, “find your thing, the thing that makes you whole, do not let cancer take it.” How has writing been part of my cancer journey? Has it helped me cope? There’s no question that cancer added another dimension to the blog. Within three days of hearing that I had cancer in August 2013, I’d published my first post about it and I’ve lived my cancer journey out loud on Following Augustine ever since. There are several reasons for that. First of all, since the blog was already well established and read by many of my close family and friends, it was an easy way to keep them informed about what was happening without having to repeat myself over and over again. Second, because writing is who I am, it helps me process the things that are happening in my life. That’s incredibly important when you’re dealing with something as complex and confusing as cancer and its treatment. And third, I’ve tried to use the blog to raise awareness of neuroendocrine cancer (NETs) which, while no longer rare, is still relatively unknown. Cancer is not who I am, but writing is!  

And now it’s your turn. What is that one thing that makes you whole; the one thing that you have to do? Have you found it yet? Please let us know in the comment section. 

The Cancer Fashionista: fighting cancer one outfit at a time

When I first read about Donna McNutt, Instagram’s Cancer Fashionista, I was instantly intrigued and so inspired that I immediately started following her. I identified so strongly with her message that cancer could break her down, but it wasn’t going to take who she is! Today, I have the privilege of introducing you to Donna.

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Donna, please tell us a bit about yourself and your cancer story. 

In early 2015, at age 55 and after raising three children, I had just moved into my dream cottage in Laguna Beach, California when I began experiencing rib pain. About three months later, on Easter morning of that year, I was in so much pain that I couldn’t do the one thing I always do, get dressed. I went to the hospital where it was discovered that I was in the last stage of multiple myeloma and my kidneys were failing.
 
After a two week stay,  I began a chemo regimen to prepare for a stem cell transplant at City Of Hope (one of the leading cancer hospitals in the United States) that would put me into remission. Multiple myeloma is an incurable cancer, so although the transplant was a success, I will always be on some form of treatment.
 
Multiple myeloma is a relatively uncommon blood cancer that starts in the plasma cells which are mostly found in the bone marrow.
 
Please tell us about your involvement with the Rose Bowl parade. 
 
City Of Hope is where I got a second chance at life. I was so honored when I was asked to ride on their 2020 Rose Parade float, representing patients and the hope we feel being a part of COH’s family.
 
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How has fashion helped you cope with having cancer?
 
I’ve always loved getting dressed. It’s probably the most defining part of me.  I knew that the only way I was going to survive cancer was by continuing to get dressed. So little by little, I would wear lipstick, maybe a cute pair of shoes, and  eventually I started rocking the cutest outfits when I went for my treatments. The Cancer Fashionista was born!
 
Getting dressed is my distraction from all the many tests, treatments, and procedures that I endure. It also shows the people I love, I’m going to be ok. Look, I’m getting dressed! It has now become my mission to tell others, find your thing, the thing that makes you whole, do not let cancer take it. For me, that thing is getting dressed.
 
Even in the hospital, Donna chose to wear her own colourful pyjamas instead of hospital gowns. 
 
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How would you describe your style? Has it changed over time?

Because I love fashion so much, my style has changed many times over the years. I dress for what I want to project. Date night is when I wear heels, a red lip, and maybe experiment with a style I wouldn’t wear during my day. For me, dressing starts with shoes and then I build my outfit around them.
 
Some people knit, paint or exercise as hobbies, I try on clothes and create new spins on old favorites. I believe that whatever makes you feel confident, no matter what age you are, people will see that. That confidence is the most important thing you’ll be wearing.
 
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Who takes your fashion photos?

My husband takes all my photos. I call him Hubbyrazzi. It’s been amazing having him by my side and a part of my cancer journey. When he takes my photos, he gets to see and capture the best part of my day and for this I am grateful.  

You’ll meet Hubbyrazzi and hear his perspective in the video below. When I look at these photos and so many others on Instagram, I see colour, imagination, and creativity, but I also see courage and a woman telling cancer that it can’t rob her of who she is. In my mind, that’s beautiful and very inspiring! 

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Through a program at City of Hope, Donna mentors other patients who are preparing for stem cell transplants. She’s made it her mission to share her journey whenever she has the opportunity to help other cancer patients not feel so alone and to show them that there can be another side of cancer.

I tell them that I have fought cancer one outfit at a time. We have to have a little humor when dealing with cancer!

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Perhaps this message, which I also found on Donna’s Instagram, says it best. 

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Now, please take a few minutes to watch the video and if you’ve found Donna’s story inspiring, you might also want to follow thecancerfashionista on Instagram.  

Good news!

In these days of political turmoil, Covid variants, earthquakes, avalanches, and ice storms, we seldom seem to hear any good news, but today was different for us.

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It started with a phone call 45 minutes before we were planning to leave for the city to meet with the doctor to receive the results of the CT scans that I had last Friday. Scans that would tell us whether or not my neuroendocrine cancer (NETs) had grown or spread. Would I be okay with a phone consultation instead of meeting with the doctor in person? You bet I would! I’ve been feeling fine. I didn’t have any specific reason for needing to see the doctor in person and a phone call would save us four and a half hours of driving! 

The really great news came with that second phone call, the call from the doctor himself. Almost immediately, I heard the word I’d been hoping for. Stable! But then I heard, “for the most part.” For the most part? What did that mean? “It’s good news” he hastened to assure me.

There has been a change, but it’s a change for the better! Twenty months after my final PRRT treatment, after feeling like I was stepping off a cliff because I would no longer be on any treatment other than the monthly injection that I’ve been receiving since diagnosis in 2013, I’m still improving! A spot on my liver has decreased in size since the last scan almost seven months ago!

Another indication of how I’m doing showed up in the blood work that accompanied my scans. Chromogranin A, a protein released by neuroendocrine cells, is the most valuable marker of neuroendocrine tumours. In December 2019, six months after that final PRRT treatment, my Chromogranin A level was 112, which in the words of my doctor, was “at or slightly above normal, but not worrisome.” By last August, it was down to 49 and now it’s 27! This, too, is pretty remarkable. 

Neuroendocrine cancer is incurable. I’ll have scans and blood tests again six months from now and once again, we’ll wait for the results and hope to hear that wonderful word. Stable! In the meantime, we’re praising the Lord for today’s good news! 

NET Cancer Day 2020

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Once again, today is Worldwide NET Cancer Day, a day set aside to try to increase awareness of neuroendocrine (NET) cancers and to promote improved diagnostics, treatments, information, care and research. The focus of this year’s campaign is to highlight the challenges that patients and clinicians face around the early diagnosis of NETs.

A recent worldwide survey of NET patients showed that only 27% of them received a correct diagnosis the first time around. 44% of us, myself included, were misdiagnosed for several years before the correct source of our symptoms was discovered, often by accident. Globally, it has been taking 5 years on average from initial symptoms to diagnosis; 6 years here in North America which was also my experience.

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I’m part of the 36% who were initially diagnosed with gastritis, inflammation of the stomach lining. It was a GP who made that diagnosis based only on my symptom, a gnawing abdominal ache. I don’t fault him for that as NET cancer usually presents symptoms that mimic much more common ailments. Had we done a colonoscopy, however, the tiny tumour growing in my cecum would likely have been found before the cancer spread. It was several years later, when unusual spots on my liver showed up on a completely unrelated ultrasound, that suspicions were raised and I eventually learned that I had Stage 4 cancer! By that time, my symptoms had grown to include chronic diarrhea as well as occasional flushing and episodes of tachycardia (extremely rapid heart rate), all common characteristics of NET cancer.

There are 3 As that would significantly improve the outcome for many NET patients:

  1.  Awareness of symptoms  –  We need health care professionals at every level to be aware of this complex disease and to be able to recognize its symptoms. My family physician had been practicing medicine for approximately 20 years when I was diagnosed, but I was his first NET patient and he knew very little about it. I’ll never forget the locum who argued with me that neuroendocrine tumours aren’t malignant (some aren’t) and that I didn’t actually have cancer at all! 
  2.  Availability of diagnostic tools  –  The most precise tool for detecting NET cancer is the Gallium 68 PET scan, but I have never had one. In fact, only 18% of the surveyed patients worldwide have. It isn’t available at many cancer treatment centres. For the past few years, there’s been talk of one coming to the Cross Cancer Institute where I receive all my care, but as far as I know it hasn’t happened yet. 
  3.  Access to NET specialists  –  In the survey mentioned above, 24% of the patients had not even heard of a NET cancer specialist and many others travel long distances to see one. 

So, every year on November 10, and whenever I have the opportunity in between, I’ll do my bit to raise awareness, never giving up hope that eventually better diagnostics and treatments will be available to all NET patients and that ultimately a cure will be found!

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Overcoat overload

LogoOur beautiful fall weather is rapidly disappearing and winter is on the horizon. It’s time to begin bringing out winter coats and boots. As I thought about doing that, I decided that this week would be a good time to purge my wardrobe of some of the jackets and coats that have been taking up closet space and not being worn. I decided to take a similar approach to my scarf edit of a few weeks ago.  

I started by rounding up all my coats and jackets from various closets around the house and hanging them in one place, the guest room closet. There were 25 of them. Yes, 25! Even with four distinct seasons, no woman needs 25 coats! 

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The next step was the easiest. Pulling out the coats and jackets that I wear regularly, I moved the fall and winter ones to the hall closet and those that I only use in the warmer seasons to the hanging rack in the basement storage room. I also pulled out the jean jackets that I wear from time to time throughout the year and moved them to a different closet.

Next came the much more difficult task of deciding what to do with the 13 items that remained. I’m not as disciplined as I’d like to be when it comes to getting rid of things which is why I ended up with 25 coats and jackets in the first place!

Two items were put aside to keep for sentimental reasons. The first, a vintage reversible wool cape, originally belonged to my mother. Forty-four years ago, on a blustery October day much like today, I wore it over my wedding dress. Thirty years later, my daughter wore it over hers on a stormy mid December day. Though I’ve only worn it a handful of times, it has become a family heirloom and I won’t be parting with it. Since capes are very much on trend this fall, I moved it to the front closet where I might remember to wear it this year.

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The second item that I’m keeping for strictly sentimental reasons is a patchwork jacket that I made for myself from recycled jeans a long time ago. I made a similar one for my very dear friend, Joan. When she lost her valiant battle with breast cancer in 2006, Joan’s husband returned it to me and the two jackets have been hanging side by side in our storage room ever since. Mine has been returned to that spot and they will stay there, a reminder of an enduring friendship that was cut short far too soon. 

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That left me with 11 coats and jackets to decide what to do with, but I hadn’t got rid of any yet! The next step was to try each one on, stand in front of the mirror, and ask myself, “Does this fit well?” “Is the colour right for me?” “Do I love it?” and probably most important, “How likely am I to ever wear this again?” At that point, the donate pile began to grow quickly!

Soon I was down to just three jackets hanging in the closet; three beautiful leather jackets that originally belonged to my very generous sister-in-law, Sue. She often shares with me when she cleans out her own closets. I’ve had the jackets for quite awhile and don’t expect to wear them again, but I hesitate to drop them off at the thrift store with the rest of my donate items because I know that that they’ll be sold for far less than they’re worth. I thought about trying to sell them on one of the buy and sell sites that I belong to on Facebook, but I don’t really want to profit from them, especially when I didn’t buy them in the first place. Then I had an idea. After consulting with Sue, who gave her enthusiastic approval, I’ve decided to sell the jackets and donate the proceeds to neuroendocrine cancer (NETS) research. The recent CNETS HOOFING IT Across Canada fundraiser that I took part in fell a little short of our $100 000 goal, so every bit that we patients can add will help! 

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HOOFED IT!

Over a three day period while camping at Miquelon Lake Provincial Park this past week, Richard and I hiked a total of 23.9 km, pushing me to within just 2 km of my final HOOFING IT Across Canada goal. This evening, under dark cloudy skies that look like they were about to let go and pour rain, I crossed my self-imposed finish line! Since July 1st, I’ve HOOFED IT 179.5 kilometres (111.5 miles). That’s 2.5 km more than the distance from our front door to the Cross Cancer Institute in Edmonton where I receive all my neuroendocrine (NET) cancer care.

If you’ve been reading my blog or following me on Facebook this summer, you know that I’ve been taking part in the CNETS Canada campaign to raise funds for NET cancer research. The goal was for participants to rack up 5514 km, the distance from Newfoundland and Labrador to the Yukon, by walking, hiking, kayaking, swimming, cycling, roller-blading, or any other forward moving activity that they could think of. We did that in spades, criss-crossing Canada almost five times!

Fundraising has been a bigger and vastly more important challenge. This evening, we’re sitting at just over $73,000, but approximately $20,000 of that has come in over the past ten days! For that reason, the deadline for making donations has been extended to September 25. With an extra two and a half weeks, we’re hopeful that we can bring in the final $27,000 necessary to continue funding critically needed neuroendocrine cancer research.

The need for research and awareness was brought home to me again this afternoon when I spent some time chatting online with a NET patient in another Canadian province who was diagnosed in May of this year. She’s been seen by an oncologist and has had surgery, but she hasn’t been referred to a NET specialist. She hadn’t even heard of Sandostatin, the injection that I’ve been receiving every 28 days since diagnosis. It’s been the workhorse medication for neuroendocrine cancer patients for the past 30 years, but her oncologist may never have encountered a NET patient before and may have little or no idea how to treat it. Sadly, this is a common occurrence for NET cancer patients!

Today, with so much attention being directed toward COVID related research (and rightly so) a relatively unknown cancer like ours can easily get overlooked. With many people facing financial difficulties, it’s not easy to keep asking for donations, but let me do it one more time. If you haven’t already and you’re able to give even a small donation, please visit my fundraising page and help us reach our goal. Every dollar counts!

My final goal

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!

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HOOFED IT 100 km!

dancing-netty-zebra-net-cancer-dayThere’s no doubt that the HOOFING IT Across Canada fundraising campaign has helped give purpose to my summer; this very weird summer when a family reunion, special birthday celebration, travel, and even scattering my father’s ashes in his beloved mountains all went out the window with Covid-19.

Prior to the campaign, I set two goals for myself. Between July 1st and September 7th, I would walk or hike 100 km and raise a minimum of $1500 in donations for neuroendocrine cancer (NETS) research. I knew that I’d have no problem HOOFING IT 100 km, but I originally thought that $1000 was perhaps a more reasonable fundraising goal. My husband had other ideas. “Go big!” he urged me, so $1500 it was. This week, I accomplished both these goals! In fact, the $1500 was in the bag before I HOOFED my final kilometres today!

With a little over three weeks left in the campaign, I’m not going to quit now. Instead, I’m going to push myself to walk another 50 km and increase my fundraising goal to $2000. My total presently sits at $1570, so I’m going to need some help!

Perhaps this is a good time to explain a bit about this cancer that killed Steve Jobs, Aretha Franklin, and more recently, actor Irrfan Khan, and why research funds are so badly needed. NETS is currently being diagnosed more frequently than ever before, but no one knows why or what causes it. Despite vast improvements in diagnostic techniques, it continues to be difficult to diagnose because symptoms are often vague and are also typical of hundreds of other more common diseases. As with any cancer, early diagnosis is the first step toward successful treatment and better outcomes, but patients commonly make many visits to the doctor over several years before an actual diagnosis is made. I probably had NETS for 7 to 10 years before it was detected and, of course, by that time it had spread. This is pretty typical. Thankfully neuroendocrine tumours tend to grow slowly and a person can live a long time even with advanced disease. Time equals hope; hope that new and better treatments will be found. That requires research and research requires dollars!

That’s why the Canadian neuroendocrine cancer community has collectively walked, run, hiked, biked, kayaked, canoed, and even stand-up paddleboarded over 17,000 km this summer and raised over $45,000. That falls a long way short of our $100,000 goal though.

I greatly appreciate those who have already made donations. If you haven’t and you’re able to, please visit my fundraising page here. No amount is too small!

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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