Month: September 2013

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.

IMG_3113

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?