NETS

Where does my strength come from?

/ edebock / 12 Comments

In the six months since my cancer was diagnosed, (yes, it’s been six months already!) many of you have commented on my strength. While I’m both flattered and encouraged by your kind words, I feel I must give credit where credit is due.

The strength you speak of is not my own. I believe with all my heart that it comes from my relationship with the living God, creator of the universe. Oh, it’s true that tough times in the past have made me stronger and I’d be remiss not to mention that I have the support of a loving husband, family, friends and community but ultimately, if it were not for my relationship with God, I’d probably be a basket case by now!

I grew up in a church-going family but by the time I reached my late teens, I’d turned my back on the things I was taught and gone my own way. It wasn’t until I’d made a huge mess of my life that I heard something I’d never heard in all those years of Sunday School and church. I heard about a God who wanted to have a personal relationship with me and that made all the difference in the world! It wasn’t about a religion and following a bunch of old-fashioned rules. It was simply about someone who could take the mess I’d made out of my life and turn it into something beautiful. That’s where my strength comes from!

Does the fact that I have cancer mean that God has forgotten me or worse yet, that he doesn’t exist? Absolutely not! I have no idea why he has allowed this to happen but I am confident that the words of Jeremiah 29:11, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future” are as true for me today as they were for the Jews who were living in exile in Babylon in the days of the prophet.

In addition to acknowledging the true source of my strength, I must also admit that I had an amazing example in my oldest daughter who died at the age of five following a 14 month battle with leukemia. She endured so much more than I have with incredible dignity and grace. Though her wee body was ravaged by chemotherapy and radiation, her faith never wavered! She certainly knew where her strength came from and her legacy lives on in those whose lives she touched. I am inspired to fight the fight as well as she did!

Ready to go home after an 8 weeks stay in hospital

Ready to go home after an 8 week stay in hospital

Riding the roller coaster again

/ edebock / 9 Comments

Cancer is definitely a roller coaster ride! Yesterday was up and today is back down again.

I had my second mIBG treatment on Friday. When Dr. MacEwan, nuclear medicine radioisotope specialist at the Cross, entered the room for our pretreatment consultation, he started by thanking me for contacting my MLA about the delay in getting government approval for the lutetium clinical trial. It made a big difference, he said. In fact, the trial has received approval and is up and running now but there are a few hoops left to jump through before they can begin taking on new patients like myself. In the meantime though, the clinic is working overtime treating those patients who were receiving lutetium before the government cut its funding.

Though lutetium might still be my better option, yesterday’s post treatment scan showed that the mIBG appears to be working. There was no indication that the cancer had grown or spread. That was great news and we rode it to the top of the roller coaster!

Then the phone rang this morning. It was Dr. MacEwan calling with the results of the PET scan that I had before Friday’s treatment. He had ordered the scan in hopes that it would shed some light on what it was that had previously been found in the left side of my face. Apparently, it revealed that there is a growth of some sort in my salivary gland. That didn’t come as a complete surprise to me as I’ve been feeling swelling and tenderness there for some time. Dr. MacEwan is quite confident that it isn’t related to my other tumours, however. He suggested that there are a number of possibilities, many of them benign. Though he did his best to reassure me that it likely isn’t anything to be too concerned about, I felt the roller coaster begin to descend again.

After discussing options, including simply keeping an eye on it, we agreed that a needle biopsy to determine exactly what we’re dealing with would be a good idea. I’ll return to the Cross for that in about a month’s time after I’ve had time to fully recuperate from Friday’s treatment and my body has rid itself of most of the radioactivity. I have a lot of confidence in Dr. MacEwan and I feel certain that he wouldn’t intentionally give me false hope so, though I’m not feeling at the top of the roller coaster anymore, I haven’t crashed either.

It’s an ordinary common variety head cold that has me feeling really down today! 😦

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!

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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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.

Zzzzz

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