Author: edebock

Taking a break

/ edebock / 5 Comments

After a mostly sleepless night worrying about how to deal with everything in my parents’ apartment, we decided to take a break today and go on an adventure with our grandsons, Sam and Nate.

Vancouver is enjoying a fabulous October so the drive up the Sea to Sky Highway to Britannia Beach was spectacular. The mine, which operated there from 1904 to 1974, was once the largest producer of copper in the British Empire and is now home to the fascinating Britannia Mine Museum. There the boys enjoyed panning for gold, riding a train into the depths of the mine and inspecting old machinery.

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Ready for the underground tour!

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IMG_3176_2   IMG_3179_2Sam was dwarfed by the wheel of the gigantic haul truck.

After exploring the museum, we stopped for a picnic lunch at Porteau Cove on our way back to the city. The sunshine sparkling on the ocean and the smell of the sea were good for my soul and probably good for my blood pressure too!

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Feeling somewhat rejuvenated, we’ll head back over to the apartment this evening to continue the work that still needs to be done there. Hopefully, I’ll have a better sleep tonight!

Why in the world did they keep THAT?

/ edebock / 2 Comments

This is without a doubt the funniest thing we’ve found while cleaning out my parents’ apartment! Do you have any idea what it is?

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In the winter of 1975-76, my father fell on the ice and broke his hip resulting in a partial hip replacement. The surgery wasn’t entirely successful and he endured many years of chronic pain before it was redone. This was his first prosthetic implant! I have absolutely no idea why he kept it but like many people of his generation, he had a hard time throwing things away. When my sister and brother were here a couple of weeks ago, they found income tax receipts dating back to 1948, the year my parents were married!

Needless to say, sorting through everything our parents accumulated over nine decades of life and 65 years of marriage has been somewhat overwhelming. It’s difficult not to get sidetracked as we sift through the memories. Dad’s extensive collection of Inuit art, purchased directly from the artists in the various northern communities that he traveled to during his years of working for the government of the Northwest Territories, already went back to Alberta with my siblings but we’ve found other bits of art that they obviously treasured too; cards and drawings made for them by now grown grandchildren and carefully kept all these years!

Reminders of their world travels are scattered throughout the apartment. Today I came across a list of the 66 countries that they visited written on the back of an envelope. I also found the itinerary for their tour of China taken almost 30 years ago, so similar to the trip we took just 3 months ago. The old slide projector and boxes full of slides also went home with my sister. I look forward to looking at their pictures and comparing their experience to our own.

Yes, it’s easy to become nostalgic and to get caught up in reminiscing but we’re working against a deadline here and I’m beginning to panic! The apartment has to be completely cleaned out by the end of the month and I have to be back in Alberta for a medical appointment on November 1. I also have a huge urge to clean out my own stuff when I get there! Otherwise, someday our children will be doing exactly what we’re doing now and asking the very same question:

Why in the world did they keep THAT?

What comes next?

/ edebock / 4 Comments

We finally have a respite, a break between medical appointments, and we’re going to be able to make the trip to Vancouver that was aborted six weeks ago when my doctor called to deliver the news that I have cancer! The nature of the trip will be a little different than it would have been back then though. There will be time for adventures with our grandsons, Sam and Nate, of course, but while I was undergoing all sorts of tests at the Cross Cancer Institute, my sister and brother were in Vancouver helping our 90 year old father move into an assisted living facility. They weren’t able to stay long enough to deal with everything in the apartment that had been my parents’ home for more than 25 years though so we will be sorting, packing, storing, selling and giving away; doing whatever needs to be done to have the place empty by the end of the month.

It will be very nice to have this break from all things related to cancer! This week has been about dealing with symptoms. Neuroendocrine tumours produce excess hormones that can have a variety of effects. In my case, these include painful stomach cramps, diarrhea, and high blood pressure. The hormones may also be responsible for the fact that my heart races occasionally. In addition, I’ve recently developed another common symptom known as flushing. If you’re talking to me and my face suddenly turns red, you haven’t embarrassed me or made me angry and no, I’m not menopausal. I’m too old for that! That’s just me flushing!

I had my first Sandostatin injection on Tuesday. It’s a slow release medication that’s supposed to suppress the production of these hormones and thus alleviate the symptoms. I pray that it’s effective and that I begin to see changes soon! In addition, my family doctor prescribed high blood pressure medication this morning and I’m walking around with a Holter Monitor dangling from my neck. The tiny battery operated monitor is attached to five electrodes that are stuck to my chest and it’s keeping track of my heart’s rhythm for a 24 hour period. Once I turn it in at the hospital tomorrow morning, I expect to be free of all things medical until Nov. 1!

Shortly after that, life is going to get crazy for awhile! I have my first radioisotope treatment on Nov. 8 and I will be so highly radioactive afterward that I will be isolated in a lead lined room until the following day! Once I’m home, I will have to live like a hermit until 14 days have passed but more about that in a future post. For now, I just want to enjoy my freedom!

One in a million!

/ edebock / 7 Comments

I received an email this morning telling me that I’m one in a million!

“Kiva just hit the 1 MILLION lender mark! You are now officially one in a million inspiring changemakers, pioneers, and poverty fighters! We can’t thank you enough for helping Kiva get to this point.”

Since I don’t want every post I write to be about living with cancer, perhaps it’s time for another one about this amazing organization. I first learned about Kiva in 2010 when I read the eye opening book, Half the Sky: Turning Oppression into Opportunity for Women Worldwide, by Nicholas D. Kristof and Sheryl WuDunn. Kiva is a non-profit organization that allows a person to lend as little as $25 to a specific low-income entrepreneur in one of 72 countries around the world. Though Kiva provides loans to both men and women, I choose to lend to women who are borrowing money to purchase specific items that they will use to generate income to help them support their families and educate their children.

Since March 2010 when I made my first loan to Rann Sar, a Cambodian mother of four who wanted to purchase two cows to begin a breeding program, I have invested in a variety of livestock, numerous sewing machines, some hairdressing tools, two restaurant refrigerators, two stoves and a portable food stall like the ones we saw on the streets in China. But how can $25 purchase a cow or a stove? It can’t. Many lenders pool their resources to fund each loan.

Over the past three and a half years, I have made a total of 22 loans but I’ve only invested $125. How is that possible? As each borrower makes a monthly payment on her loan, my share of that payment is deposited in my Kiva account and I receive an email notifying me of my updated balance. I could withdraw the money at any time but instead, as soon as my balance reaches $25, I search the Kiva database and choose another woman to lend to. I can’t begin to tell you how excited that makes me! This truly is the gift that keeps on giving.

I recently heard it said that people around the world are praying for things that we take for granted. That really impacted me. We are so blessed and we take so much for granted. With Thanksgiving just around the corner (this weekend in Canada and next month in the US), perhaps this is the perfect time to think about helping someone else achieve their dream, feed their family or send their children to school. It’s as easy as clicking on the logo below or the Kiva banner in my sidebar and investing $25!

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I’m a zebra!

/ edebock / 11 Comments

“Medical students are taught when hearing hoofbeats, to think of horses, not zebras. Neuroendocrine tumours are rare, and therefore are considered to be zebras.”

Neuroendocrine tumours (NETS) are very difficult to diagnose. The 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.

Every time my symptoms flared up I’d be frustrated over the fact that we couldn’t figure out what was causing them but I’d think to myself, at least it isn’t cancer! It’s been going on too long to be that. If it was, surely we’d have known about it a long time ago. Like most NETS patients when they’re diagnosed, I’ve probably had cancer for several years!

Breast cancer patients have their widely recognized pink ribbons but we NETS patients have our aptly chosen zebras. Knowing this, I decided to do a bit of research to find out if there was anything about this beautiful animal that I could apply to my new life with chronic cancer.

The first thing I learned is that every zebra’s stripe pattern is unique. They may all look the same to us, but each one is an individual. I am not simply a cancer patient. I am still the same person I was before this diagnosis was made. I am unique!

I have quickly learned that the team at the Neuroendocrine Tumour Clinic at the Cross Cancer Institute treats each one of its patients as a unique and whole person. When we sat down with Dr. Makis and nurse coodinator, Karey McCann, on Wednesday, they wanted to know about more than my medical history and my symptoms. They wanted to get to know me as a person.

I also learned that zebras are highly social and courageous animals. When a member of the herd is wounded by a predator, other zebras will come to its defense, circling the injured animal and attempting to drive the predators away. They know the importance of having a support system!

How fortunate I am to have a vast “herd” of supporters making this journey with me and you, dear readers, are part of that! I can’t begin to tell you how much I appreciate all the comments that you’ve been leaving for me. They definitely make being a zebra a little bit easier.

Dalian Forest Zoo, China

Dalian Forest Zoo, China

Reason to celebrate!

/ edebock / 31 Comments

We came away from our meeting at the Cross Cancer Institute yesterday feeling relieved and very thankful. The doctor we met with actually used the words “good news” and spoke of long term survival.

The first piece of positive news is that the cancer has not spread to my lungs or any other major organs! Other than the growths that we were already aware of in my colon and my liver, the only definite spread is to one lymph node in my thorax. There may also be something in the left side of my face so I’m to have a CT scan of my head and neck sometime soon to get a better read on that.

The very best news is that my cancer proved to be receptive to both mIBG and Lutetium, the two radioisotopes that I was injected with last week. This means that I am an excellent candidate for the newest and very best treatment available for neuroendocrine tumours. How fortunate I am to live close to Edmonton, the first centre in North America to begin offering this kind of therapy! I will receive an injection of one of these radioactive agents approximately once every three months. It will basically seek out the cancerous growths and attack them. This has a very good chance of stopping the cancer from growing and spreading, basically making it dormant, or actually shrinking the growths. There are no major side effects and patients can live for many years on this kind of treatment.

Though it doesn’t happen often, there have been rare cases where the cancer has disappeared completely but we were cautioned that even if this happens it is very likely to reoccur. The goal of this therapy is control, not cure but I continue to hang onto the hem and pray for a miracle! Should God choose not to grant complete healing, however, it is reassuring to know that there’s still reason to believe that I’ll be around for quite awhile!

Surgery to remove the primary tumour from my colon may be an option at some point in the future but chemotherapy is not particularly effective in fighting neuroendocrine tumours and is only used as a last resort when other therapies aren’t effective. So, I won’t be losing my hair! I actually would have been okay with that and even have friends who were willing to shave their heads as a sign of solidarity but with winter coming on, perhaps it’s good that we get to keep our hair. Bald is beautiful but it could also be very chilly!

In addition to the radioisotope therapy, I’ll also be receiving monthly injections of Sandostatin, a medication that will inhibit the release of hormones by my tumours and thus alleviate the symptoms that I’ve been dealing with, particularly the nasty stomach cramps that have worsened recently. Unlike the radioisotope injections, which I will have to go to Edmonton for, my first dose of Sandostatin will be administered by my family doctor and after that, a visiting nurse will give them to me here at home.

Sandostatin will also protect my heart from damage which can be caused by excess hormones. That leads me to the final piece of good news; last week’s echocardiogram showed that my heart is in excellent condition. Though I’ve probably had this cancer for several years already, it shows absolutely no sign of damage and I don’t need to restrict physical activity or take any other precautions. I can continue doing my 20+ push ups every morning!

As yesterday was also our 37th wedding anniversary and we felt that we had a lot to be thankful for, we stopped for a lovely celebration supper on our way home. I was even going to indulge in a decadent dessert but when nothing on the menu appealed to me, we headed for Starbucks and enjoyed pumpkin spice lattes for dessert. After all, they’re practically hot pumpkin pie in a mug!

Next on the agenda is another trip to the city tomorrow, this time to attend an afternoon session entitled “A Journey of Well-Being with Neuroendocrine Tumours” where we’ll hear from the experts about a variety of topics including the latest treatments, nutrition and how to use it beneficially, and how to live the best life possible with this diagnosis. This will also give us an opportunity to meet other patients, their friends and family members, and survivors as well as more of the health professionals.

O Canada

/ edebock / 8 Comments

Prominent women in Canada are agitating to change the wording of our national anthem. Author, Margaret Atwood, and former prime minister, Kim Campbell, are amongst those who are lending their voices to the campaign to rid the song of what they consider sexist language. Apparently, they are offended by the line “in all thy sons command”.

Canada flagWe Canadians are constantly making changes to our national symbols. In fact, we seem to be a bit unsure of our real identity. The present flag isn’t the one that flew over my elementary school and this wouldn’t be the first time that our national anthem was altered. The offending line in the original anthem, written by Robert Stanley Weir in 1908, read “thou dost in us command” but in 1914, Weir himself changed it to its present wording. Considering that, at that time in our history, women were not yet legally considered persons, this could possibly be construed as a sexist sentiment, implying that only male loyalty was being invoked, but does anyone truly believe that it means that today?

Rather than reverting to the archaic language of the original line, “in all of us command” is being proposed as the new gender-neutral version. While I don’t really have a problem with this, I can’t help feeling that only a very insecure woman would actually feel excluded by the present wording. If women like Atwood and Campbell are truly concerned about the plight of women, I’d far rather see them take a global view and speak out against issues that really matter; issues like poverty, illiteracy, female genital mutilation, forced marriage and honour killing that continue to endanger the lives of girls and women in many parts of the world.

According to Atwood, “Restoring these lyrics to gender-neutral is not only an easy fix to make our anthem inclusive for all Canadians, but it’s also long overdue.” Really? That one little change would make it all-inclusive? What about the second line, “Our home and native land”? Does that include our 6.8 million foreign-born residents? More than 20% of our population is not native to Canada.

And then, I almost hate to mention “God keep our land” which was also not part of the original song. As a Christian, I certainly don’t want to see that part deleted but does it include the many Canadians who follow other gods or no god at all?

Regardless of how our national anthem is worded, I’m very thankful to be Canadian right now. In many countries, our life savings would be rapidly eaten up by the cost of my medical care and our retirement would be in jeopardy. Instead, when we meet with the doctors tomorrow to discuss treatment, we don’t have to worry about whether or not we can afford it. In Canada, we don’t pay a cent! Now, that’s really something to sing about!

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First day at the Cross

/ edebock / 20 Comments

After finding our way from the parkade to the registration desk and being issued the red and white Cross Cancer Institute ID card that I’m supposed to show each time I enter the facility, we started our first day there with a new patient orientation session. In my mind’s eye, I had visualized us sitting in a classroom with several other brand new shocked and bewildered patients listening to someone give us an overview of how things work at the Cross. Instead, the two of us sat on a comfy couch in a cozy corner of the patient library and chatted with a volunteer, a colon cancer survivor who was treated at the Cross about 15 years ago. He shared a little of his own experience, told us about the services and resources that are available to patients and their families, gave us excellent suggestions about dealing with the practical and emotional challenges of living with cancer and encouraged us to take an active role in my care.

Of all the many volunteers who perform this service, God sent us Gar! About mid way through his presentation, while telling us about the psychosocial and spiritual resources that are available, he made this comment, “People have many different ways of dealing with cancer but I just put mine in the hands of my Lord and Savior, Jesus Christ!” I replied with a resounding “Amen!” Gar was one of us and God had put him right where we needed him when we needed him there.

Following our chat, Gar took us on a tour of the facility making sure that he clearly pointed out the various places that I’d need to return to later. By the time we hugged and said good-bye, we felt much more at ease.

After a quick bite to eat, it was time for our first visit to the Nuclear Medicine department where I received my mIBG injection. This was the first of two injections of radioactive drugs that will aid in determining the extent to which my cancer has spread. Tomorrow, I’ll return for a full body scan, which will involve lying perfectly still for up to an hour, followed by the injection of the second drug.

A visit to the lab, where blood was taken, brought today’s appointments to an end. Over the four weeks since this journey started, I’ve been poked numerous times including three tries to get an IV started the day I had my colonoscopy. I must say that the gals at the Cross have been the gentlest so far. I hardly felt the two needles that entered my arms today!

Before we left the Cross this afternoon, we visited the gift shop where we stocked up on used books for $1.00 apiece and then headed out into the sunshine to find the geocache that’s hidden on the hospital property! It was placed there in April 2010 by a young geocacher who wanted to honour his twin sister, a breast cancer patient at the Cross.

I was pretty tired this afternoon, probably just a response to the emotional overload of getting this far, but after resting a bit and enjoying the first meal our youngest son has ever cooked for us, I’m recharged and ready to go back again tomorrow.

Hanging on

/ edebock / 20 Comments

I have long identified with the woman described in Luke 8: 42-48.

The woman who touched the hem of his garment

As Jesus was on his way, the crowds almost crushed him. And a woman was there who had been subject to bleeding for twelve years, but no one could heal her. She came up behind him and touched the edge of his cloak, and immediately her bleeding stopped.

“Who touched me?” Jesus asked.

When they all denied it, Peter said, “Master, all the people are crowding and pressing against you.”

But Jesus said, “Someone touched me; I know that power has gone out from me.”

Then the woman, seeing that she could not go unnoticed, came trembling and fell at his feet. In the presence of all the people, she told why she had touched him and how she had been instantly healed. Then he said to her, “Daughter, your faith has healed you. Go in peace.”

For many years, I suffered from anemia as the result of circumstances somewhat similar to this woman’s. I cried out for healing but nothing changed. Eventually surgery alleviated the problem and my strength returned.

Now I face a much bigger challenge. You’re so strong, people tell me. You’re exceedingly brave, say others, but I don’t feel particularly brave and my strength alone is not enough for this! So how am I coping? Why do I appear to be so strong?

I’m hanging on to the hem of Jesus’ garment! Not just touching it but hanging on! I actually find myself reaching out and clasping my hand several times a day and I can almost feel the well worn fabric between my fingers! Unlike the New Testament woman, however, I’m not hiding in the crowd. No, I’m boldly telling Jesus that I’m hanging on to his garment and asking him for the miracle of healing. It may sound weird to some people but it helps enormously.

This is not the first time that I’ve faced what seemed to be insurmountable challenges but each time, God has brought me through. The outcomes haven’t always been what I asked for but he has always given me the strength I needed to go on. These experiences are what my dear retired pastor’s wife refers to as the “stepping stones” of our faith and they give us confidence that God won’t ever let us down.

So, with the prayerful support of many loving people behind me, I will keep on hanging on and taking one step at a time!

Waiting…

/ edebock / 13 Comments

Actually, I quickly tired of waiting and decided to follow a friend’s very wise advice. “Please don’t be afraid to advocate for yourself,” she told me. “You will have to wait at times but there is also a place for you to pick up the phone and ask for results, action, a timeline.”

On Monday morning, I called Dr. F’s office to find out when the CT scan of my chest would happen. October 2nd, I was told! Are you kidding? Two more weeks of waiting just to get a scan done and then more waiting before I’d finally get to the cancer clinic? I don’t think so! After all, when I had my abdominal ultrasound and the radiologist thought he saw cancer, I had a CT scan done within half an hour and got the results the following morning!

I immediately picked up the phone again and called the Cross Cancer Institute. I soon learned that I didn’t even need the CT scan and that a whole series of appointments had already been set up for me at the Cross! Phew! Open ended waiting was stressful and I was becoming increasingly anxious but now that I know what comes next, I’m much more at peace again.

When next Wednesday arrives, this round of waiting will be over and life will suddenly become quite hectic as we’ll be at the Cross three days in a row! Fortunately, our youngest son lives in Edmonton and we’ll be able to stay with him. We start with a new patient orientation session on Wednesday morning followed by a some very specific tests to determine the extent to which my cancer has spread. I will be injected with two different radioactive materials, one on Wednesday and the other on Thursday. These substances bind themselves to cancerous deposits anywhere in the body and show up on scans that will be done 24 hours after each injection. “Timing is everything,” explained the nurse who called me. “Otherwise, it’s like looking for a white Cadillac in a snowstorm!”

I will be radioactive for a period of time after these tests so I hope I don’t end up glowing in the dark! I’m supposed to avoid non-essential contact with children and pregnant women for 48 hours and I need to remember to ask for a travel letter as I could set off very sensitive radiation detectors in airports for up to three months afterward! I’m not sure if we’ll be going anywhere during that time but we’re still hoping to make a quick trip out to Vancouver before long if my treatment schedule allows it.

I will also undergo a number of other lab tests next week to look at hormone levels and gather other pertinent information. In addition, I’ll have an echocardiogram to look at how well my heart is functioning. Apparently, neuroendocrine tumours can produce an abundance of hormones that can have a number of negative effects including high blood pressure.

On October 2nd, our 37th wedding anniversary, we’ll return to the Cross for a consultation where we’ll learn the results of next week’s tests and discuss a treatment plan. At this point, I’m not trying to guess what’s going to happen but I hope we come away from that meeting with reason to celebrate.

In the meantime, it’s time to learn more about this cancer of mine so that I can ask the right questions and discuss the situation with some level of intelligence. When I talked to the nurse from the Cross, she was actually pleased that I hadn’t started searching the web for information yet. So much of what you’ll find there is inaccurate, she told me. She also suggested that I stay away from most American sites as treatment protocols there are driven by insurance companies and are quite different from the approach taken here and in Europe. I’ve read through the information that she sent me and will start exploring the recommended websites tomorrow. In case you’re interested, I’ll post them below.

So what do I know about neuroendocrine cancer so far?

  • it’s very rare
  • it can appear in many different parts of the body including the bronchus, esophagus, lungs, liver, stomach, large and/or small intestine, and even the appendix
  • it’s usually slow growing
  • it often goes undiagnosed for a long period of time because the symptoms are usually vague and are often similar to those caused by other everyday health problems

In other words, I might have had cancer for a long time already without even knowing it! Isn’t that a creepy thought!