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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.


19 comments:

Allison & Gord said...

We think of you often John. Praying that you get a good report!!! Our love to you all!!!
Allison & Gord

Perry Cooper said...

Every blessing be upon you and Karen...

Anonymous said...

Thinking of you Rev/friend John. We just came back on thursday, Louis had a biospy on his right arm, there is a lump there that should not be there, he also had chect xrays. They feel its nothing but... i don't feel good about it. He has brought up blood a few time and is now having pain in the left side of his face agaib, taking pain killers now, its a constant worry. I do hope and pray your MRI will be good and that you will continue to improve. Take care and Gods blessings on you both.

Vanessa warren and family said...

Hang in there, sometimes you have to look back to see how far you have come. I can understand some of your struggles on a different level having watched my nephew battle a rare sickness that almost took his life - on a couple of different occasions. There were a lot of very dark moments - we just had to take it a moment at a time. We are true believers in our home that things happen for a reason, even if we don't understand that reason. Maybe we will figure it out someday, maybe not - who knows. Anyway, our thoughts and prayers are with you and your family and if there is anything you need that we can help with, then please let us know, remember we have been there and needed help ourselves.

Tracy, Robert and Chloe Peckford said...

We love you, pray for you and know that God will be with you whatever the outcome. God bless you and yours.

Jacqui,Jonita and JP said...

Still praying for you as you travel that terrible road that nobody should have to travel. Please continue to plant those "peas" and TRY to stay positive, as difficult as it is. That"old fella" is always running around like a ravening lion We understand, that's why Jo had to have another surgery 12 months after the original one, because there was "something " there. Its not KNOWING what it is(scar tissue or tumor) that sets your mind wild and out of control. You are loved, cared for,prayed for, supported and in the right place by the human community BUT even more wonderful and strengthening is that you are all those things and much more by the BIG BOSS! Who is your Almighty Father and supporter and HE is in control...that's His job, yours is to rest in His Hand, while He takes care of the crappy stuff! Love you!

Nancy French said...

An open, powerful, moving and inspiring piece of sharing, John. Prayers for Gentle Healing Breezes of the Spirit - within and around you.

Matilda said...

Dear friend

I know there is nothing we can do for you but there is aomething we can say. That is we love you and pray that God is watching over our guardian angel. Oh please dear god let him beat this thing and let it be all over please. We are not ready to let you go yet and please do not give up John. You have too many people who love and need you so much. I only pray that things turn out alright and that 2012 will be the end of your cancer. We love you and wish you all the best. Remember you are very much loved and you do have a lot to give.xoxoxo

Anonymous said...

Our hearts are with you, Karen and Family, So little we can say or do but let you know we love you and pray for you all.

Linda & Pat

Anonymous said...

Father John, Please know that I wish you all the best on this newest part of your battle. I am sending all positive thoughts your way.


Alison Hickman

Anonymous said...

Just read your blog (well why else would I be commenting, duh) and I will read it later to Mom. I didn't quite get it when you wrote about the rear view cause I added 'mirror' to the words but when I re-read it I think I got it. Looking back is where you want to be. I said a prayer re your battle in 2011 and I am praying you will not be at the forefront of another war in 2012. Love Linda and I know Mom would send her prayers and love too.

Anonymous said...

Rev. John, Praying for good things from your next MRI. Keeping you, Karen and your family in our thoughts and know that you are in good hands, God's hands, and there is no better place to be. God Bless you all.

Thelma

shannon bath said...

uncle john u and aunt karen and the girls and there families are in my thoughts and prayers.everything will be just fine,u are a fighter and a beliver so just keep thinking positive things.we all love u guys take care and god bless you all.

Anonymous said...

Rev John, Just read your blog. So sorry that you have to deal with more tests. We know how very stressful some of these can be. Hopefully, all results will be good. You will be in our prayers, Thanks for sharing.

Shirley & Larry

Anonymous said...

I'm here for you Lovey.

Anonymous said...

We have never met but I have been reading your blog and this one touched me I am so sorry for all that you have endured. I know what that dreaded word can do and I know all too well what it's like to have a family member with cancer. I hope that one day we will meet cause your positive attitude inspires me.and the fact that you are keeping up with ministering parishers and anyone who needs you is amazing. You are in my thoughts and prayers.

Anonymous said...

Rev. John: You are an inspiration to anyone who is fighting cancer and it gives insight and empathy to those who aren't.You are one tremendous person.My thoughts and prayers are with you.

Geraldine and Baxter said...

Just checked your blog after a long time not doing so. I'm sure you know that Baxter and I keep you in our prayers all the time. It is great having you back!

Geraldine and Baxter

Adelaide Marie said...

hello rev. john, i pray u r in good spirits as i speak and perhaps u read.....my friend has been diagnosed with cancer that started in the tongue then moved on to a couple other places. no chance for cure they say but maybe a few extra months if he survives the treatments. he still has a little time to decide because he has no insurance and they are setting him up with medi something care or cal. the last i spoke with him he is leaning towards no treatment. i wonder if u think i should encourage him to take the treatment. as it stands i feel it might be a lot of hell for such a small amount of hope. he is afraid but keeping most of that to himself. he just keeps saying "i'm alright". today is march 21st.....hey isn't that the first day of spring?