Author: edebock

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!

Victoria’s Quilts

/ edebock / 10 Comments

I received a gift lovingly made by a total stranger today! Victoria’s Quilts Canada is a non-profit charitable organization with branches across the country that provides hand made quilts to comfort cancer patients and keep them warm during treatments.

Victoria’s Quilts was founded in the US by Deb Rogers as a tribute to her sister-in-law, Victoria, who had herself been a quilter. With Deb’s blessing, Ottawa resident Betty Giffin, seeking a way to share her faith and her love of quilting, started the Canadian organization in October of 2000. From its humble beginning with just 12 women, the organization has grown to include more than 800 volunteers who distribute approximately 400 quilts every month to cancer patients across the land.

Each Victoria’s Quilt is unique. Backed with soft flannel, they are very durable and can be machine washed and dried. There is absolutely no cost to the quilt recipient or the person who requests it and anyone can request a quilt for a friend or loved one by simply visiting the Victoria’s Quilts Canada website.

My quilt was requested by my friend Anne, an avid quilter who volunteers with the Russell, Ontario chapter of Victoria’s Quilts. Presently battling her second bout of cancer, Anne knows first hand what the quilt recipients go through.

You would think that the person who chose my quilt knew me personally. It’s the colours of our livingroom and is absolutely gorgeous! You probably can’t see it in the photo but the darker pieces of fabric have an ancient Egyptian motif printed on them in gold which adds an exotic flair. It’s large enough to wrap myself in if treatments leave me chilly or to snuggle under if I need a nap and, like all Victoria’s Quilts, it came with its own carry bag.

A label sewn on the back of the quilt identifies it as a Victoria’s Quilt and includes the scripture that Deb Rogers found comfort in after the death of her best friend and sister-in-law, Victoria.

“Be strong and of good courage, do not be afraid or dismayed, for the Lord your God is with you wherever you go.”  Joshua 1:9

While the quilt will keep me warm, the verse will be a source of comfort and strength during difficult days.

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Today’s package came at a perfect time when I really needed a pick me up. There’s nothing too serious going on but I’ve been getting frustrated and a little anxious waiting to hear when my next appointments will be. I know that these things take time but it’s hard to be patient! Keeping busy helps and tomorrow I’m going to do that by playing in our local ladies golf tournament which is always a lot of fun!

Is it good news?

/ edebock / 23 Comments

We met with the doctor yesterday to discuss biopsy results. Apparently, I don’t have adenocarcinoma which is what he anticipated. Instead, I have been diagnosed with a “well differentiated neuroendocrine tumour” which is apparently less common. Is this good news?

Here’s what Dr. F wrote on a small slip of paper:

Adenocarcinoma            Prognosis: poor

Neuroendocrine             Prognosis:  ?

Question mark? My whole life, my future, is wrapped up in that one small question mark!

Dr. F, not one to give a person false hope, appeared to think that the diagnosis was good news, at least better than it might have been. For now, we’ll cling to that as a glimmer of hope.

So what comes next? We still don’t have a treatment plan. All of the information that has been gathered so far has been sent to the Cross Cancer Institute. Located in Edmonton, a two hour drive from here, the Cross is the comprehensive cancer centre for all of northern Alberta. As soon as I heard the dreaded C word, I knew that that’s where I’d likely end up.

The specialists at the Cross have requested a CT scan of my chest, presumably to ensure that the cancer hasn’t spread to my lungs. I fervently pray that it hasn’t and that it doesn’t. Once they have the results of the scan, my next appointment will be at the Cross where we should finally find out what treatment is going to look like.

So… for now, we wait some more! We wait for phone calls to tell me when to come in for these appointments. We wait to find out if the news is good or not.

Waiting is getting more difficult but we’re keeping busy which helps a lot and I know that the prayers of many people around the world are sustaining us while we wait.

Apron prayers

/ edebock / 8 Comments

When we directed Vacation Bible School a couple of weeks ago, we taught the children to fold their hands and close their eyes when we prayed; not because there’s any magic in these things but because folded hands are less likely to get into trouble and closed eyes shut out distraction.

1 Thessalonians 5:17 tells us to “pray continually” but how do we do that? How can we make prayer an integral part of our busy everyday lives? Obviously, we can’t sit around all day with our hands folded and our eyes closed!

I have been humbled and quite overwhelmed by the response to my last post. Promises to pray for us as we walk this road called cancer have flowed in from around the world! I especially loved one friend’s practical approach. “I’ll put your name in my apron pockets,” she told me and went on to explain that she wears an apron at work and reaches into it’s deep pockets many times throughout the day. When she wants to remember a specific prayer request, she writes it on little pieces of paper and puts them in her apron pockets. As she finds them throughout the day, she stops what she’s doing for a  few moments and prays!

prayer asap

How do you remember to pray?

A new journey…

/ edebock / 68 Comments

It looks like Richard and I are embarking on a new journey… not one that we would have chosen. It started with a phone call from my doctor on Tuesday morning.

If you’ve been reading my blog since we left for China at the end of February, you may recall that when we arrived we had to have complete medical check-ups including abdominal ultrasounds before our resident’s permits could be issued. That’s when we first learned that there was something on my liver but after having a CT scan, I was told that it was nothing to worry about. It was suggested that I follow up with my own doctor after returning to Canada.

Early in August, I went for my annual medical and took the ultrasound photos from China with me. Dr. H wisely ordered another ultrasound which I had early Monday morning. Immediately afterward, I was told that I should also have a CT scan and that was done before I left the hospital. I expected similar results to those I’d received in China but I couldn’t have been more wrong.

I was walking a nature trail in a provincial park several hours from home the next morning when my doctor called. He didn’t want to tell me the test results over the phone but since he was asking me to abort our planned trip to Vancouver and come home to meet with him, it was obvious that the news wasn’t good. I sat on the grass overlooking a beautiful lake while he told me that I have colon cancer which has already spread to my liver!

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Cancer… that dreaded C word!   Wow!   How do you respond to that?

With prayer!

I am a list maker so as soon as we got back to our campsite, I started writing a list of people I needed to call, not just to share our devastating news but also to ask for prayer. Prayer for healing, prayer for peace and prayer for the strength to walk this pathway with grace.

After dropping our daughter and grandchildren in Calgary the following morning as planned, we turned toward home and started this new journey. It all seems a bit surreal at this point as I feel perfectly fine! I saw an internist yesterday and I’m booked for a colonoscopy and biopsy on Wednesday. As long as the growth in my bowel isn’t threatening to cause a blockage anytime soon, it will not be removed at this point and I will likely start chemotherapy soon.

We believe in a mighty God who responds to the prayers of his people and we are asking for a miracle!  Whether he chooses to heal me with a touch of his hand or through the more usual medical means is immaterial to me but I am boldly asking for more time… there is much that I still want to accomplish in this life!

On the long drive home on Wednesday, as the doctor’s words rang in my head, I heard the still small voice of God’s Holy Spirit speak to my heart. I grabbed my notebook and wrote down his words so that I can recall them over and over again when things get rough and negative voices threaten to overcome me.

“I’ve got this in my hands. I know what’s going on. I’m going to take care of you.”

Where will this journey take us?

Where will this journey take us?

Kids helping kids

/ edebock / 5 Comments

We went on our second Mission to MARS this week!

That’s right! Two years ago, on the island of Saipan, we directed a Vacation Bible School program with an outer space theme. This week, we brought the same program, Mission to MARS (Meet A Risen Savior), to our own local church. Every morning approximately 30 excited children between the ages of 5 and 12 gathered for games, crafts, songs and Bible stories.

One of the verses that they learned was 1 Chronicles 16:29 which speaks of bringing an offering. With this in mind, we wanted to incorporate a Missions project that the children could identify with and contribute to throughout the week.

MARS
The escalating civil war in Syria has left an increasing number of families in chaos. According to the United Nations, an estimated two million refugees have fled into Lebanon, Jordan, and surrounding countries while more than four million people have been displaced within the country itself.  Schools across Syria are closing as children and families flee dangerous areas, and the public schools in Lebanon and Jordan are overcrowded. They simply can’t continue to absorb the number of refugee children who are flowing in. Many Syrian children have already lost a year of school due to violence and transition.

The Church of the Nazarene runs four schools in Jordan, Syria, and Lebanon. These schools are in neighborhoods where Syrian refugees and internally displaced people are struggling to survive but they can’t operate without funding. Many displaced, traumatized families have little or no income and are unable to pay school fees.

With the beginning of a new school year just around the corner, this was an issue that our VBS kids were easily able to identify with and they amazed us with their compassion and generosity.

  • $400 will enroll a Syrian child in a Nazarene school for an entire year
  • $100 will provide books and clothes for the school year
  • $45 will support a child’s school fees for one month

My faith was small. When I made up the poster shown below, I set $100 as our goal for the week but with the help of the church’s mission committee who agreed to match the children’s offerings dollar for dollar, we surpassed that amount on Wednesday! I was going to add another column to the poster that evening but one of our older girls suggested that I’d better make that two. Even that wasn’t enough! After taking this morning’s offering and adding in the matching amount from the missions account (shown in teal on the poster), we had raised $335.10!

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In a country where we take so much for granted and where most children will soon go off to school wearing brand new clothes and carrying backpacks stuffed with shiny new supplies, it was gratifying to spend the week with kids whose hearts were touched by the plight of boys and girls in a faraway land whose lives have been uprooted by the tragedy of war.