Cancer

How am I doing?

/ edebock / 11 Comments

“How are you doing?”

I’m asked the question often and I really don’t know how to answer! The short answer is, “I’m feeling fine and able to live a normal life right now and for that I’m very thankful!”

I know there are some of you, however, who want the long answer. Other than a sensation in the left side of my face that doesn’t feel quite right, I really am feeling fine but I have no idea what’s happening on the inside. Not knowing whether the cancer is growing and spreading or if it’s been arrested by the treatment that I had in November is somewhat disconcerting but it’s the growth in my face that concerns me the most because we know that it wasn’t receptive to the mIBG.

I’ll be back in Edmonton on January 31 for more tests and another treatment so I hope to have more answers after that. Because I tolerated the last treatment so well, I don’t even have to stay in the lead lined room this time! Instead, I’ll be receiving my treatment as an outpatient. I’d feel more confident if I knew that it was going to be lutetium instead of mIBG though. That was the original plan but the government hasn’t given final approval to the clinical trial yet. Since I don’t know where the hold up is, I’ve written to both my MP and my MLA asking them to look into the matter. As I pointed out to them, it may only be paperwork to those who are dealing with it at the government level but it’s a matter of life and death to people like me! Both their offices immediately forwarded my concern to their respective health departments but I’ve heard nothing more!

In the meantime, I’m grateful that I can live a very normal life. With the exception of blood tests at the nearby hospital every second Friday and a Sandostatin injection here at home every 28 days, my schedule is much the same as it’s always been. I’ve suffered absolutely no ill effects from either the mIBG or the Sandostatin, my energy and appetite are unaffected and I’m sleeping well. I do suffer from bouts of anxiety but thankfully, they haven’t been too frequent. My biggest regret is not being able to take a role in our drama club’s upcoming production of Agatha Christie’s murder mystery, And Then There Were None, because the upcoming treatment will render me too radioactive to be in close contact with other people for the final two weeks of rehearsal.

I often find January a long and dull month but getting back on track physically has helped a lot. Over the past three weeks, I’ve walked 12 miles (almost 20 km) on the treadmill and since the weather has been unseasonably warm, we’ve also done some walking outside. With all the freezing and thawing, however, it’s pretty treacherous out there right now and the treadmill is a lot safer. I’m also back to three full weight lifting sets three times a week. After almost a year long hiatus, I started with what seemed like ridiculously small weights but I’ve already started increasing them. Sadly, there’s still a bulge around my middle and the best I can say for my weight is that it hasn’t continued to climb but I know that the exercise is contributing to my overall feeling of well-being and I’m determined to keep it up.

So, to those who’ve been asking, I hope this answers your questions and to those who’ve been praying for me, thank you so very much! I’m still hanging on to the hem of his garment and asking for a miracle!

Getting back on track

/ edebock / 9 Comments

When I was diagnosed with cancer at the end of August, it would have been easy to fall into a deep pit of anger. After all, I don’t smoke, I only indulge in an occasional glass of wine, I’ve never even experimented with street drugs, I eat a healthy diet and I exercise regularly. I’ve taken excellent care of my body, so why cancer? Why me? There are no answers to those questions. I don’t think there’s anything more that I could have done to prevent such a catastrophic diagnosis, but life’s not fair and cancer is no respecter of persons.

Fortunately, I managed not to wallow in anger, but for awhile I definitely let a “why bother” attitude take hold. Why bother exercising? Why bother watching my weight? Why not eat whatever I want? After all, I have cancer. I deserve a treat, don’t I? Now, every time I look in the mirror, I see an unwelcome “why bother” bulge around my middle and every time I zip up my jeans, “why bother” gets in the way.

In spite of the delicious food, I actually lost a few pounds while we were in China.  The amount of walking and stair climbing that we did on a daily basis more than made up for the extra calories I consumed. I was surprised that I didn’t gain the weight back as soon as we got home and after being diagnosed with cancer, I actually began to worry about that. I knew that if I had to have surgery or if treatments caused me lose my appetite, I didn’t have any extra weight to spare. That made it easy to get lazy about exercising and to start indulging in fattening foods. I kept up my morning exercise routine but when winter arrived, I quit walking and the weights and the treadmill gathered dust in the basement. Suddenly my weight started to climb again and it didn’t stop! By early December I was seven pounds heavier than I’d been just three months earlier!

Seven pounds isn’t a lot but it’s five percent of my present body weight and on my slight frame, it shows. Also, I realized that if I kept gaining at that rate, I’d put on 28 pounds in just one year! There’s no way I wanted that to happen! It was definitely time to do something about the “why bother” attitude, but with Christmas goodies staring me in the face, I decided not to make any drastic changes until after the New Year.

Now, with Christmas behind us, most of the goodies eaten and the family gone, it’s time to get back on track! Today I bid “why bother” good bye, dug out my virtual walk DVDs and got back on the treadmill. I only walked 1.2 miles (just under 2 kilometres) but it’s a start and it felt good. Before we left for China, I didn’t have time to finish my video course, The Secret Life of Words: English Words and Their Origins so, when I’m not enjoying scenic pathways around the world via DVD, I’ll be watching lectures while I walk.

When the little ones were here for Christmas, we had to hide the free weights to keep them from dropping them on their toes but I’ll be digging those out again next week. It’s been almost a year since the last time I lifted so I’ll have to start small but that’s okay. Cancer may have slowed me down for awhile but it hasn’t stopped me yet!

Beauty after the storm

/ edebock / 12 Comments

I’m in a somewhat better frame of mind than I was when I wrote my last post. There are a couple of reasons for that. First, I read this in my devotions earlier in the week.

“When faced with challenging trials we have two options: to cower and travel down the unproductive road of fear or to walk forward, believing that our risen King is fully in control of our lives.”          Kirsten Rose

It brought me up short and reminded me that while I can’t necessarily choose my circumstances, I can choose how I react to them. We all have a limited amount of time on this earth and I can choose to waste whatever time I have trembling in fear or I can be thankful that I’m feeling well and get on with living. It may not always be easy but it’s obviously the better choice.

Secondly, I had a chat with Karey, the nurse at the Cross who is the “go to” person for neuroendocrine cancer patients when we have questions or concerns. She explained that Sandostatin, the drug that I receive monthly injections of, is a “cold” or non-radioactive form of Octreotide while Lutetium, the new treatment that we’re awaiting government approval for, is radioactive Octreotide. I was under the impression that Sandostatin was only meant to control my symptoms but she assured me that it also has an effect on the tumours themselves and that though my facial tumour isn’t receptive to the mIBG that I received recently, the Sandostatin should be helping keep it under control. I may have been told that before, but there’s been so much to learn, so much information to absorb, that it obviously didn’t sink in. This time, it was reassuring.

Today was already the tenth day since my mIBG treatment. Only four more days of avoiding close contact with other people to protect them from my radioactivity! The time has passed quickly and it hasn’t been as difficult as I imagined it might be though not being able to even hug my hubby has been tough. The past three days have been particularly quiet as I sent him off to Calgary to spend a few days at our daughter’s. I had several projects around the house and a couple of good library books to keep me busy.

Yesterday, a winter storm covered most of our province with a heavy blanket of snow and very few people ventured out but this morning we woke to blue sky and glorious sunshine. Since I couldn’t go to church, I bundled up and took my camera out to capture the beauty that the storm left behind.

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A friend loaded up his snow blower and brought it across town to clear my driveway before going to church himself! When I looked out and saw him, I felt the arms of God wrapped around me!

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Riding the roller coaster

/ edebock / 28 Comments

I saw my tumours yesterday. I drove myself to Edmonton for a post therapy scan and a follow up consultation with one of the doctors. He showed me the results of the scan and there they were, lit up on the screen like mini suns; one in my colon, two on my liver and a little one in a lymph node in the middle of my abdomen. That was the good news. It meant that the mIBG that I was given on Friday had, in fact, adhered to the tumours and was beginning to do battle with them.

Unfortunately, there was also bad news. A CT scan of my head and neck, done prior to my treatment on Friday, shows that I also have a growth in the left side of my face. They were unsure about that one after the initial diagnostic tests. Unfortunately, it did not light up on yesterday’s scan which means that, unlike my other growths, it’s not receptive to mIBG and it isn’t presently being treated.

It does appear to be receptive to Lutetium, however, but that’s a newer radioisotope treatment that isn’t presently being funded by the government. The Cross is in the process of setting up a clinical trial that will give them funding for Lutetium but it takes time to wade through the red tape involved in that. It should be available for use early in the new year but it would have been so much better if my facial tumour had been receptive to both medications. That would have given us more in the arsenal to fight with. Apparently, due to it’s location, it isn’t a good candidate for surgical removal either.

I’ve heard it said that having cancer is like riding a roller coaster and now I understand. I had crawled to the top of a hill and was feeling great; then came the sudden drop!

Perhaps today is a good day to remind myself of the things that cancer cannot do.

What Cancer Cannot Do

Cancer is so limited…

It cannot cripple
LOVE

It cannot shatter
HOPE

It cannot corrode
FAITH

It cannot destroy
PEACE

It cannot kill
FRIENDSHIP

It cannot suppress
MEMORIES

It cannot silence
COURAGE

It cannot invade the
SOUL

It cannot steal
ETERNAL LIFE

It cannot conquer
THE SPIRIT

Author Unknown

Behind the lead wall

/ edebock / 15 Comments

For those of you who might be wondering about my time behind the lead wall, my room looked much like any other hospital room.IMG_3270

My Victoria’s Quilt added colour to the otherwise bland decor and a great library book, And the Mountains Echoed by Khaled Hosseini, author of The Kite Runner and A Thousand Splendid Suns, kept me occupied.

It wasn’t just like any other hospital room though. There’s the yellow line on the floor that I wasn’t allowed to cross, the shield that the nursing staff stood behind when they entered the room and the teeny tiny window out into the hallway.

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Fortunately, the wall on the other side of the room was a bank of windows looking out over the busy street or I might have gone completely nuts. It was through those windows that I spotted my crazy and wonderful girlfriends after dark on Friday evening as they waved and danced a cancan in the parking lot for my benefit! They were in the city for our annual Christmas shopping trip which I, unfortunately, had to miss out on this year. When they took time out of their evening to come see me, here’s what they saw.

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They also brought chocolate! That tells you both how well they know me and what good friends they really are! The care at the Cross was absolutely fabulous but the food was bad. Really bad! Chocolate helped a lot. In addition to what the girls brought, my husband and son dropped off a Dairy Queen chocolate sundae. I was indeed spoiled!

Water was the essential element in getting me out from behind the lead wall though. Immediately after my IV injection  of mIBG on Friday, my radiation level was 53 µSv/h at two metres distance. I really don’t know what that means but it had to be below 18 before I could be released. While approximately 20% of the radioactive iodine that I was injected with would hopefully adhere to my tumours and begin fighting them, the remainder needed to be flushed from my system. That’s where the water came in. While I was warned not to drink enough to make myself sick, the more I drank and the more I urinated, the sooner I’d go home. I went through several jugs of water and exactly 24 hours after my infusion began, I was down to 14 µSv/h!

I felt no immediate effects of the treatment but the doctor knew what he was talking about when he said that I’d be tired for a few days. Today I feel like I’m suffering from jet lag! Oh well, since I have to keep my distance from people anyway, my calendar is clear and I can nap as much as I need to.

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The battle begins

/ edebock / 7 Comments

It’s been almost a month since I posted anything about cancer. After the flurry of appointments and tests in late September and the first week of October, it’s been nice to have a break in the action, but now it’s time to get down to the business of fighting this thing. I’ll be having my first radioisotope treatment tomorrow. It’s definitely been a long time coming. We were camping when I received the phone call telling me that I had cancer and now there’s snow on the ground! Fortunately, NETS are very slow growing tumours so there hasn’t been the same urgency to begin treatment that there is with many other kinds of cancer.

Early tomorrow afternoon, I will be injected with iodine-metaiodobenzylgaunidine, a radioactive substance better known as mIBG. It will be absorbed by my tumour cells and, if effective, will control some or all of the symptoms and inhibit the cancer’s growth, basically rendering it dormant. It may also make the tumours shrink.

Radioactive mIBG will remain in my body in diminishing amounts for up to 14 weeks. Most that is not taken up by the tumour cells will be eliminated within the first few days but, in order to protect other people, I will be isolated in a lead lined hospital room until my radioactive exposure rate drops below a certain level (likely 24 to 48 hours) and then I will be required to live a somewhat restricted life until 14 days have passed. While in hospital, I will have to stay behind a boundary line in the room. A tray table will be placed near the door so that meals, medications, water, linens, etc. can be placed on it for me to access without hospital staff having to come all the way into the room. I will not be allowed any visitors but there will be a small window into the room that people can see me through and a phone in the hallway that they can use to talk to me! Sounds a bit like jail, doesn’t it?

What will I do to keep from going stir crazy? I’ve packed library books, magazines, my Bible study book, a cross stitch project that I haven’t touched in ages, a deck of cards to play Solitaire with and a notebook in case I feel like writing. I’m not really a TV watcher but if there’s one in the room, I’ll probably see if I can find something worth watching.

Here are a few of the instructions that I’ve been given to follow after I go home:

  • drink plenty of fluids and urinate frequently to help flush any excess mIBG out of your system
  • use extra careful hygiene habits (followed by very detailed instructions for using the bathroom that I won’t go into here!)
  • shower once or twice daily and keep your facecloths and towels separate from others
  • wash your clothes, towels and bed linens separately from those belonging to anyone else
  • wear socks, slippers or shoes at all times
  • sleep in a separate bed (I’m moving into the guest room)
  • if possible, use a separate bathroom from others in the house
  • starting from 8:00 AM, you may have 8 hours of social contact no closer than 3 metres (10 feet) with your primary caregiver/spouse
  • each day, you may have 2 hours of social contact no closer than 1 metre (3 feet) with your primary caregiver/spouse

Though these rules sound pretty rigid, I’ve been told not to become a hermit. For example, I’m allowed to go grocery shopping because that won’t require prolonged contact with anyone in the store and Richard was delighted to learn that I can safely prepare his meals!

So, how am I feeling about all this? I’ve heard it said that a positive attitude is a mighty weapon in a battle like this one and I figure that if I have to go through this, I might as well have a bit of fun with it! In spite of the seriousness of the situation, there’s been lots of teasing and laughter about whether or not I’ll glow in the dark (I won’t!) and whether the radiation will give me super powers! Now, that would definitely be fun, but I haven’t decided what my super hero identity should be. Any suggestions anyone?

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!

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.

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.