Just Starting to Read this Blog?

Scroll down for the first entries

Friday, June 24, 2011

A Year After

Today is January 9 2012 .

Almost a year has passed since I last published my blog.

Why Wait so Long?
I'll tell you why.
Time flies!... So we say, when amazed at how quickly an anniversary or one of life's cycles repeats before we really had a chance to think about it.
I can say that the year hasn't flown by for me.
I'll tell you why.
Things were not changing very quickly for me.
Honestly,I was having a struggle in many areas of my "new reality". My work ethic was eating away at me as I became more and more sensitized to the never ending needs of our parish . I was trying my best to get back to a full work load as quickly as possible and feeling both guilty and frustrated at not being able to do what I used to do. As a priest and Rector,that means being available 110 percent of the time,with 110 percent energy,and 200 percent desire to "get er done".

The side effects from the treatments and lack of nutrition actually seemed to be getting worse as time went on. I was literally a person who had been starving, willingly subjected to a chemical warfare,and having my head placed in a "microwave".

I really had to learn how to talk all over again. I still struggle with self confidence in relation to my vocal delivery.
Stumbling around with numb feet, trying to play the guitar with fingers that didn't want to move anymore,being dizzy every time I tried to stand. I can't recall how many times I would have to bend over and wait for a dizzy spell to pass before I could start to walk. Eating was (and remains) a challenge. On top of that...returning to offering pastoral care,preaching , conducting worship and trying to inspire and motivate ......yadda yadda yadda.

Then there was the feeding tube.
That blessed thing caused so many emotions for me through this journey.
When I first had it "installed" I was just beginning my treatments. I had arrived at a point where I had stopped eating very much at mealtime because it was too painful to swallow. My weight loss was evident long before I was diagnosed with cancer. When in hospital my meal trays always returned to the cart pretty much as they were given to me....Untouched.
They started to blend my food for me,just like they did for my father in his last days when he could no longer hold a fork and I had to feed him.
Seeing those strips of food on my plate bothered me deeply. No matter-I couldn't stomach the mush anyway,so I didn't eat that either.

The prognostication was my problems were going to be even more compounded as treatment progressed. On top of the painful restriction in my throat, the chemotherapy was going to make me very sick,and the radiation was going to cause burns and other issues ......the weight loss had to stop NOW,or I was going to starve,and simply would not make it. would have been gone long before the cancer had a chance to finish me off.

That almost happened. I went from 195 plus pounds to less than 100 by the time my treatments were done.

Hence the percutaneous endoscopic gastrostomy (PEG) tube .
Hence the simultaneous whammy of being introduced to forced feeding and an infusion of Chemo drugs. (radiation was yet to come!)

I remember waking up with this thing sticking out of my gut..this piece of white tubing with a cap and receptacle on the end designed to receive a funnel or large syringe for the purpose of getting liquid nutrition in.
At first I was too weak to care. In the beginning the staff tended to the tube. I was hooked up to a device that metered the liquid. Water first,then Gevity, (the liquid food) then more water to rinse it out. I could not handle it at all. I was constantly nauseous The tube became a symbol of all that was wrong in my life,and it was getting to me. The fight to stay positive and keep the faith was harder than most people will ever know.

It wasn't until after the treatments were finished and I was determined to win this (#$@!&*^^^$$%@) battle that the feeding tube became a trusted friend and a security for me. I became a whiz at using it.(Making the scattered mess over myself and the furniture I might add. One day I actually burst into tears in a flurry of self pity over an unintentional spill. Some days it was downright hilarious)
Feeding tubes are something that I strongly recommend to any cancer patient who has the slightest chance of having to fight a nutritional war on top of everything else.
Me and my tube were symbiotic for almost eight months before I decided it was time to say goodbye.

I reached the point last year where I became restless about having the tube in. I was eating a little , but able to drink large quantities of liquid supplements like Boost and Ensure.
Having the tube removed was a turning point.
What a day that was. Joanie and Dr. St. Croix had been observing my progress. Many times I had asked if the tube should come out.
For quite a while they discouraged the idea because I wasn't taking in enough food yet and we didn't know if my Cancer battle was any where near done.
I was living with the possibility that I might still have to undergo surgery- that I still might lose parts of my tongue and voice box.......
But Wait..there's More!
I was having a hard time getting anything down orally. Not because of the tumour any more, but because the 50 pairs of muscles and nerves needed to accomplish the simple act of swallowing hadn't been used for so long that we were not really sure how effective they would ever be again. Let's not forget that in addition ,the inflammation and scarring of my esophagus and tongue compliments of the radiation treatments,had basically paralyzed a major portion of my tongue and throat.

Again I say, the fight to stay positive and keep the faith was harder than most people will ever know.
To a large degree my caregivers at the cancer clinic and hospital did know. My sense of gratitude for them has not diminished one iota,and never will. When I visit the hospital now,and see the staff, my heart fills. I wish them blessing after blessing.

In 2011 the right time arrived -the feeding tube came out,and ever so slowly,I continued on my way without it.

Why Wait so Long to write?
My goal for this blog and my writing was to provide an honest, factual and positive narrative. I wanted to continue my ministry in some way from what I knew was going to be a dark,dangerous,and terrifying place. I came to a place where I realized I was so tired of talking,thinking and breathing "Cancer, Cancer, Cancer.." and realized that my wife was right there with me. I decided to just focus on moving on,and getting better. I would wait to update this blog when I was able to come to it from the viewpoint of looking back,instead of always looking forward and wondering what was next. I know that that is a place called utopia . It is a place that Cancer patients can never visit for very long.

2011 was, as you can tell a great struggle.
I was "weaned away" from being a regular Cancer Clinic patient. Dr. St. Croix retired from the Cancer Clinic, but they still keep an eye on me .

It is quite a challenge to move away from people that you have come to trust and need so much. You slowly unwrap what has come to be a security blanket. You feel somehow that you are deserting them..and they are deserting you.
I tell the Nurses upstairs at James Paton (Sometimes fighting back a few tears) "I miss you guys so much...But I don't want to come back."

It is as Joanie Wicks said to me one day at the Cancer Clinic in Gander: "Hold me close as you let me go."

Some More about the Challenges we faced in 2011
A Cancer diagnosis does not just affect your physical well being.
We are made up of a threefold existence: Physical Mental and Spiritual.
Everyone of us will face challenges in life that will bring stress to bear on each of these areas.

These challenges will affect relationships with other people such as friends, spouses , children and other family members.

Then there is the relationship that you have with God. That one can be challenged BIG TIME. So is the relationship that you have with your SELF.

There is anxiety after being done with chemo and radiation waiting for what is next. You do worry about dying from cancer. You do wonder how much time you have left.

You are surrounded by "healthy people" who don't have to deal with these types of fears.

You meet other cancer patients who have had a journey far less arduous than yours,and their optimism is something difficult to understand. You meet other people who have had journeys far more difficult than yours,and you get a sense that you are not alone after all.

I thank God...for my Wife, My Children,Grand Children..and my Church.

Bi monthly trips to St. John's became the norm in 2011. We grew comfortable with the knowledge that my cancer seemed to be non-active,and that everything looked good.

That feeling was challenged this fall.
My last MRI was in August of 2011. The report came back All was well !

"BUT" Says the Doctor....
In November I was informed by mail that my MRI,among others, was being re-read because of possible mistakes. I was told that I would be informed if there was any problem to worry about.
The review led to a different interpretation of the scan. When my family doctor read the results he forwarded them to St. John's . Just before Christmas I was summoned to the Cancer Clinic in St. John's to discuss the "newly found concerns" with an oncologist.
After some freezing, prodding and poking the doctor announced that he was pretty comfortable that I was okay...BUT there was a concern about a "bright spot" that has consistently shown on all of my MRI scans. Some interpretations said the bright spot was just scar tissue. others said this brightness could indicate the presence of Cancer.

What are we going to do?

On June 4 2010 I was at St. Clare's hospital for a biopsy. when I woke up I was told simply:"You do have a tumour and we have some things we have to do. you will need an MRI, and some treatments. I might be getting ahead of my self here, but I'm pretty sure of what I have found." Pause. " We will get the pathology results,and I'll see you in the Cancer Clinic. "

Today is January 9 2012.
I am writing this in Torbay at my daughters house. Karen and Chanda are gone shopping. Jason is at work and the kids are still in school. I love them all so much.
I am lying on the warm soft,comfortable green flannelet sheets I know so well back in the bedroom where I spent so many hours waiting and fighting 1n 2010 and 2011.

Tomorrow I must go back to St. Clare's for pre-admission checks because on January 11 I am scheduled for another biopsy. Guess writing while looking in the rear view is not going to happen just yet.

Wednesday, February 16, 2011

A New Year Update

Just before Christmas 2010 I wrote about the latest "after treatment results". Since then I have made a number of overnight trips to St. John's for appointments at the Cancer clinic.

My first post treatment MRI was disappointing. It showed that there was very little shrinkage in the tumour. (Yes it is still called a tumour or "a mass"). The doctor's exam gave us hope that the cancer was gone - "However, a biopsy and surgery might still be a reality we would have to face".
"We need to keep a close eye on things."
That's what we have been doing since Christmas.

Christmas was Bittersweet. On the week before Christmas , (my Birthday) we held an open house. Karen cooked mountains of food,and some friends even sent along some treats. I wasn't able to do much more than sit and greet people. Folks understood though, and it was a wonderful day. We received a great number of people and much love through the day. Later that evening we were off to a friends for supper. I was exhausted so when we got there, I crashed on the couch, and enjoyed all the noise. It's amazing how comfortable a friend's couch can be!

Some of the members of our youth band gave me a cake and sang Happy Birthday.

I was also able to preach at St. Martin's at one of the Christmas Eve services.

Our grand kids from Torbay were with us in Gander which meant that on Christmas morning we would once again experience the joy of young children opening their gifts at 6:00 in the morning! After a nap,we enjoyed a quiet day with the kids. I invested a couple of hours with Joshua and his newest Lego set.
Throughout Christmas I wasn't feeling well. Every activity became a challenge,weakness and dizziness being constant companions.
I sat at the kitchen table doing some food preparation and helped present Christmas dinner to our family in the dining room. Although I was unable to eat much I did join the family at the table for Christmas dinner,and the following day carved the turkey and joined a large extended family group for another feast. I did not eat,but shared the fellowship with a sense of gratitude and satisfaction. Karen worked very hard to ensure Christmas at the Rectory would be a blessing. It really was.

Food and the Joy of Eating

Joining people for a meal is a special event at any time. By nature people are social and want to share time and provision with each other. Many solid friendships and life blessings result from fellowships around the table.

That's something I have never taken for granted. I have always enjoyed cooking. I enjoy helping Karen in the kitchen,and sharing a good meal with friends and family.
Before beginning any meal I always say Grace. It is important to me to thank our Lord for what I have been blessed with,and for His provision. I have always felt the need to return thanks and to ask that what we eat would be blessed,so that our strength would not just come from earthly food,but from God's own hand.

No one should eat a meal without Grace.
No one should ever take a meal,prepared and served by one to the other for granted. Amen?

As of today, I still have a feeding tube. Good thing too. After treatment I continued to lose weight. I had been going through each day trying to eat something. I actually made myself believe that I was doing good. That wasn't the case. Karen patiently let me do as I wished,eating small portions and cutting down on the liquid meal substitute that I pour into the feeding tube.
I even mentioned tom Dr. St. Croix that I thought it was time to remove the tube. She exchanged glances with Karen,looked at me with a reminder that I might still have to have a biopsy,and might need the tube again.
A few days later,I told my friend Joanie that I was down to 130 pounds. Joanie Wicks is the Patient Care Coordinator at the Gander Cancer Center. She has been with us through all of this journey and knew every detail of my progress and regressions.

She sat me down and told me I simply wasn't getting enough calories to maintain my weight and strength. If I continued in the way I was going,I was headed back to the hospital.

Okay...Okay I get it!
I returned to regular feedings of the "Jevity " liquid in the feeding tube. Six cans a day, and continued to eat what I could. That's what I am doing now.
It seems to be working.
My energy has increased,I am getting up earlier,feeling better and although I still look like a toothpick with the wood shaved off,I have gained four pounds!

Ahhh. Food...
Food still smells wonderful, but eating is a battle for me. Today every bite either burns, tastes bad ,or refuses to go down without a fight. The texture of food that I used to love simply turns my stomach. I drink a good sip of water with every bite,cough a little ,catch my breath and go for another bit.
My saliva glands are "kaput". Believe me ,you don't realize how important saliva is until it's gone. Saliva helps protect our teeth mouth and throat. It helps start digestion, and makes it possible to swallow. Saliva also causes the nessacary reaction between food and your taste buds,so you can enjoy your food. So thank God for spit.
Without belabouring the point,let me simply say: "Its awful".

I am not going to give up! I still watch my favorite cooking shows and go through our recipe books planning meals,and thanking God for the blessings of good meals,family and friends.
I must admit though that some of the stuff we cook is so good, it drives me crazy remembering the way it used to taste!

Some other Changes

I used to grow a beard every winter.
There is no hard and fast reason I do this other than the fact that I could - and some of the folks in the Church love to comment about it.
Some of the men offer me money for razors, and some of the ladies cringe when I come towards them with a greasy grin to rub their cheeks with my whiskers. It's all for a bit of fun.

One Sunday a parishioner told Karen that she wished I would hurry up and shave.

Karen responded by saying: "I like it. It's less of his face I have to look at!"

I don't spend much money on razors these days. Thanks to the radiation, what used to be a moustache and beard is just a reminder of my adolescent days when a little bit of growth over the lip and a few chin whiskers made their appearance.

Overall,I am feeling better and can finally say some of the uncertainty about having Cancer has evaporated. Having made several trips to St. John's, and to our Gander Clinic,I have only received positive speculation.
My recent MRI was in Gander on February 11. The results showed that the mass, in and under my tongue is shrinking slowly. To quote Dr. Burrage: "Good things get smaller - bad things get bigger"

There is a whole bunch of stuff that I have to deal with still,and while I have days of self pity (just hours really --and I think I have earned it!), I am in a very positive place.

I am still dizzy,tired and weak. Although its nothing compared to the past,there is always a level of pain in my throat an jaw.Thanks to the type of Chemotherapy I had, my feet feel numb and tingly all the time. My hands too - but to a lesser degree. I picked up my guitar a couple of nights ago and played a bit. It was really awkward,but felt great. People tell me my voice is good,but I am very aware that my diction is not what it used to be. I haven't tried to sing yet. We are still waiting - (and always will), for confirmation that Cancer has left me.

Thanks to Chemotherapy and Radiation I have been through.......something.
Thanks to Chemotherapy and Radiation ,and the wonderful people I have met along the way...I will live.
Thank You Chemotherapy and Radiation ,and the wonderful people I have met along the way. Thank You so much.

Starting next week there will be a series of check ups for at least another year. We believe God,and hope for good things.
Faith is the substance (that which you can hold and feel) of things hoped for,based upon the evidence of what you cannot see. We have much faith.

Today is February 26. It is raining heavily in Gander,and I am having a quiet morning.

Karen is having a well deserved "Rain Nap". We both love to relax and listen to the rain. She has been my absolute rock and uncompromising caregiver,infusing me with strength and faith.
Sometimes I look over at St. Martin's Cathedral - the building is just behind the rectory,and think of all that takes place there.
The church Building is in my backyard, but all around I am surrounded by The Church...the people of God,who have been a comfort,blessing and hope on my journey through the Valley of Shadows. I fear no evil and through the Grace of God I have been,and will joyfully continue on as servant and friend to God's people.