Cancer

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.

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?