100 butt darts!

Every 28 days, without fail, a visiting nurse pulls up in front of our house and comes in to give me an injection of Sandostatin LAR. Today was the 100th of those butt darts!

Sandostatin LAR is a long-acting treatment meant to reduce or eliminate the symptoms associated with neuroendocrine cancer (NETS) and for me it has been an absolute life changer! No longer do I live with the stomach pains and diarrhea that plagued me off and on for several years prior to diagnosis. Though the effect of Sandostatin on tumour size, rate of growth, and development of metastases has not yet been determined, it is thought that it might also be of benefit in those areas.

Sandostatin comes as a powder and a diluent solution that must be mixed and administered according to very precise instructions which is why I haven’t been taught to inject it myself. Once the diluent is added to the powder, it must be allowed to stand for a minimum of 2 minutes and not more than 5 to ensure that the powder is fully saturated. Then, after gently shaking the syringe for about 30 seconds to ensure that the powder is completely suspended, the nurse has to administer it without delay to avoid sedimentation. Even following these guidelines carefully and using a fairly large needle (19 gauge), it sometimes plugs. On those occasions, she has to quickly change the needle and try again. On a couple of occasions it has taken 4 jabs to get the medication into me! My 100 butt darts has actually involved about 130 pokes altogether.

In addition to the benefits that the drug offers, getting it into me and not wasting it is of vital importance because every one of those butt darts costs $2358.52 CAD! In other words, over the past almost 8 years, we have pumped more than $235,000 into my posterior! You could buy a nice house in our small town for that much.

This is where I’m really glad to be Canadian. I pick up the Sandostatin at my local pharmacy every 4 weeks and don’t pay a cent! The cost is fully covered by the government and that includes the cost of having the nurse come to my home. A Mobile Administration Program even enables me to have my injection administered by a trained nurse anywhere else in Canada. A simple phone call is all it takes to make the arrangements. I have to take the medication, which has to be refrigerated, with me but I’ve found that an insulated lunch bag and a mini freezer pack do the job as long as I can put it in a fridge overnight. So far, I’ve had butt darts administered at all 3 of my children’s homes. Arranging to have it done outside the country would be more complicated and isn’t something I’ve tried at this point.

So, is getting my monthly Sandostatin a pain in the butt? Not really. As a child, I was terrified of needles, but I lost that fear a long time ago. Only once in awhile does really hurt going in. Today was one of those occasions, but it went in on the first try, so I’m not complaining! The injection site often feels bruised for a couple of days and a lump often forms that gradually dissipates over the next few weeks, but these minor inconveniences are well worth it when I consider the benefits. So, 100 butt darts down and here’s hoping that I can have 100 more! Or 200. Or more!

It happened!

I had my second Covid-19 vaccine injection today! It was an uphill battle getting here, but it happened!

Continuing from where I left off when I wrote the post Am I expendable? on April 18th, I called my MLA’s office and the Ministry of Health. By that time, the cry for cancer patients to receive their second vaccine within the recommended time frame had hit the media and was definitely on the government’s radar. Though I wasn’t given any details, I was told that a decision would be announced soon.

Finally, late on the afternoon of April 22, the Chief Medical Officer of Alberta announced that cancer patients and others who were severely immunocompromised could begin booking their second appointments by phone the following day. Actually getting the appointment was quite a gong show though. I started calling first thing the next morning, but the lines were clogged. I was absolutely elated when I got through later that morning and was able to book my appointment for the morning of April 30, just two days beyond the 21 day interval recommended for the Pfizer vaccine. My excitement was short-lived, however. Within a couple of hours, I received an email, with no explanation, telling me that my appointment had been cancelled!

I immediately phoned again and made a second appointment, only to have that one cancelled the following day! At that point, I started to think that somehow the information that I was a cancer patient must not be getting into the system. I admit to being pretty hot under the collar by the time I called a third time to make the same appointment! I mentioned my suspicion and the gal who did the booking agreed with me. She told me that there was a new button to click to indicate that a caller was part of the patient group who could now book their second injections. Apparently those who took my first two calls either didn’t know that or forgot. Fortunately, while all of this was going on, today didn’t completely fill up and I was still able to get in.  

I’m glad that no one checked my blood pressure during the two days that it took to finally get an appointment that stuck! The whole rigamarole certainly added to my stress level and I almost feared checking my email for the next few days in case I once again saw a “Covid-19 Immunization Cancellation” message waiting for me! After fighting so hard to see this happen, I didn’t feel 100% certain that it would until the needle was actually in my arm! 

The fight isn’t over yet though. The majority of cancer patients across Canada still don’t have access to their second vaccine within the timeline proven most effective by clinical trials. CONECTed, a national network of oncology groups supported by over 17 national patient organizations, has launched a campaign asking the federal government to revise the National Advisory Committee on Immunization (NACI) recommendation for cancer patients so that they would receive 2 doses of Covid vaccine within 21 to 28 days of each other. They are also asking provincial and territorial governments as well as local administrators to ensure that adequate directives and resources are provided to achieve this goal. 

Being fully vaccinated isn’t actually going to make any difference to how I live my life at least in the short term. It typically takes two weeks after a person is fully vaccinated for the body to produce enough antibodies to provide protection from the virus and even then, with the Covid-19 situation here in Alberta the worst it’s ever been, life won’t be getting back to “normal” anytime soon.  

Am I expendable?

Cancer has been trying to defeat me for almost 8 years. Now it looks like it’s trying to recruit Covid-19 to help it out. No, I don’t have Covid and I’m trying to do everything I can to keep from getting it, but I’ve run into a dangerous roadblock that is affecting cancer patients across our country. 

Vaccines have been touted as our way out of this pandemic and I believe that they probably are IF they’re given correctly. That’s where the problem lies. According to the product monographs and based on the trials that were performed before the vaccines were approved, the second Pfizer dose should be given 21 days after the first, Moderna 28 days, and AstraZeneca 4 to 12 weeks. Here in Canada, however, the National Advisory Committee on Immunization (NACI) has recommended that in order to maximize the number of individuals benefiting from the first dose of vaccine, the interval between doses be extended to four months or 16 weeks.

While there is no evidence to show that this is an effective way of administering these vaccines, the extended period between doses may not make a big difference to the general population, but that is not true for those of us with cancer. Research conducted in the UK has shown that while an antibody response was found in 97% of the healthy volunteers tested after their first injection, the response was less than 40% in patients with cancer. That number increased dramatically to 95% if they received their second shot at the recommended time, but only 43% if that time was extended. 

I had my first injection of the Pfizer vaccine on April 7. That means that I have 10 days until I should be getting the second one, but I feel like I’ve been beating my head against a wall trying to make that happen. I’ve called Alberta Health Services to no avail. The clinic where I received my cancer treatments was unable to help. I’ve attended a webinar with members of various patient advocacy groups across the country and I’ve contacted the media. A petition has collected more than 20,000 signatures over the past few days and news sources are coming onside, but will the government listen? Ontario and Manitoba are moving forward with the second dose for cancer patients, but here in Alberta not one word of hope has been heard from our government. It would seem that they have decided that those of us who are already fighting for our lives are expendable! 

Photo: Spencer Davis

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.

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.

 

 

 

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. 

 

 

 

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.

 

 

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! 

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!

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

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.

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

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.

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!

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!

Born To Be Wild by Sylvia Sotuyo

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!

HOOFED IT 100 km!

There’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!

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.

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.”

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.