Friday, 19 August 2011

The Melanoma Journey (part 4- the good bye)

In our area  there is a health care support network for patients who are out of the hospital. Community Care Access Centre ( CCAC ) provides whatever is needed from nursing care to family support. The nurses advised us on what to expect as Charlie came to the end of his life and helped us to be prepared for this to happen at home (as was his choice). The time came that the nurse told us to call anyone else that may need to see him, as we had only hours left.

In an interval between wiping his face and bringing him sips of water, Charlie closed his eyes and relaxed.  The peace that came to his body was amazing for us to see. After all these months of bravado and pain, seeing him so relaxed was such a catharsis. Family was close by. I opened the window fully wide to see the greens of the trees, grass and fields; the breeze was so refreshing.  Peaceful, healing and calm.

We sat with him and had a drink to toast his life,  his victory over his challenges.


We chose to have a celebration of Charlie's life at home.  I found a beautiful wooden cremation box online (this was the strangest online purchase I have ever made). It was perfect since he loved animals and the moon. Chairs were set in place in our yard, flowers bought, friends brought food.
Friends and family sat in our open yard, next to a corn field and shared stories about Charlie's life, we sang "Imagine" by John Lennon, little white butterflies floated freely around us. We honoured the lessons that his life provided - to live life without letting any of its challenges slow you down. He did not stop living life as these challenges came his way but rather looked for how he could still  make life happen in spite of them.

Thank you Charlie. You were always there for me, as I for you - brother and sister.


Part 1 - The Journey
Part  2 - The Man
Part 3 - The Gift

Thursday, 18 August 2011

The Melanoma Journey (part 3, the gift)

Canada Day 2011, Rogers Centre Stadium, Rick Hansen & Charles Griese
A chance meeting with Rick Hansen was a gift for us all.

NOTE: If illness details will distress you, bypass the blue paragraphs.



The speed of the main tumour's growth was amazing. We could see the changes almost daily. The mass on the right side of his chest stretched from sternum across to his back and down his side.
It was nearly as large as a football by the end. This was only apparent as a bruise in February, as thick as the palm of your hand in March, the size of a grapefruit in April, a cantelope in May. By June there were countless tumours visible under the skin all over his body, a tumour the size of an orange in his stomache.
In April, a tumour the size of a lime was removed from his brain. This helped to restore the paralysis in his right arm caused by its rupture. The tumour on his side was unable to be excised since too many nerves and blood vessels were already throughout.
Charlie had to hold out his arm at a 90 degree angle and the pressure of the tumour on the nerves caused him to lose most of his motor control. The stomache tumour prevented him from eating very much at all, or keeping down what he did manage to eat. He was very weak, and struggling but resisted pain killers until the last few weeks. He did not want to be "foggy-headed" so he preferred to manage the pain and be alert.

Charlie waited eagerly for our visits. He was always ready to be up and apologizing for being so weak and tired. The doctors had told us months earlier that there was no way to turn things around; there were only weeks to months left.
We wanted to enjoy a family day at a Blue Jays/Phillies game on Canada Day. Sisters, nieces and nephews traveled up from NJ to see their beloved Phillies. Local family supported the Blue Jays. Charlie, well we are Yankees fans anyway, we were there for the fun of it. Fifteen of us planned to attend the Canada Day game in Toronto.

By this time we were traveling with a "Do Not Resuscitate" (DNR) certificate, a special "end of life symptom relief" kit and enough doses of morphine to help ease the pain. We borrowed a wheel chair from a friend since Charlie could not walk very far. Mom, Charlie and I traveled to Toronto by VIA RAIL so that he might be a bit more comfortable than in a car. The rest of the family met us at the game.
All medical professionals involved in his care agreed that we should do this if we could. We all know that he could collapse at any moment, and that would be his last. He was clear that he wanted no further medical intervention, no more laying in a hospital bed waiting. He had enough of medical care throughout his 51 years and just wanted to die peacefully, in his own bed. Charlie wanted to be living every last of these minutes left. I was determined to make sure that he could.

Arriving at Rogers Stadium, we manouver our way to the "will call" ticket windows and then on to an handicapped accessible entrance. We missed the first one but I saw another ahead.
As we roll up to the door so does another wheelchair. The familiar smile of Rick Hansen lights up with a thumbs up to Charlie. Charlie has a broad smile of recognition, thumbs up to Rick. They chat for a few minutes. Rick had enough time for a few words, a hand shake and a quick photo. This made Charlie's day. Rick was actually there to throw out the first pitch.
He managed to watch most of the game, spending only a few innings inside. He asked if we got a picture and was so pleased that we did. We made it home that night. He was so weak, exhausted and could barely speak by now.
We brought him a framed photo of the Rick Hansen encounter amd Charlie was so pleased. We hung it at eye level for his bed. Charlie told me that he wanted to write Rick a letter. Rick Hansen had been a major source of inspiration in Charlie's life - and we always wondered where he found the strength to overlook his challenges.
Charlie dictated the letter, signed it and I mailed it to Rick. I also tweeted a thank you for taking the time to talk to a man who really only had days left to live. To his great credit, Rick Hansen and the Rick Hansen foundation acknowledged the tweet and the letter, Rick thanked us and also sent us his personal condolences when Charlie did pass away.

Rick Hansen
Rick Hansen Foundation
300-3820 Cessna Drive
Richmond, BC, V7B 0A2

Dear Rick:
Before I saw you I did not have a focus, and you came along and shifted my thoughts. I did not have a clue about things like “basketball wheelchairs” and cross-country tours.
In March 1994 I had a hip replacement. In April 1995 I had a kidney transplant. I started to spend my first time in a wheel chair. When I saw you on your tour I focused on the things that you said. You made me think about the positive – like the Olympics.
It April 2011 I woke up and my arm was paralyzed. They thought it was a stroke. I was told that I had a cancerous tumour. It weakened my body. I followed what you did, seeing you on TV shows (like Danger Bay) as you told your story.
Now you have me thinking, after I saw you at the Rogers Centre Stadium on Canada Day. I can see how much you can do in a short time and how far you can go.
It was nice, shaking your hand. Thank you.
Sincerely,

Charles Griese

This day brought a few very special gifts:
  • A great Canada Day family reunion
  • Charlie met his hero
  • Priceless memories with Charlie
  • Donations in Charlie's memory are asked to be directed to the Rick Hansen Foundation

to be continued:
Part 1 - The Journey
Part 2 - The Man

Part 4 - The Goodbye



Wednesday, 17 August 2011

The Melanoma Journey (part 2 - the man)


Charlie loved New York Yankees baseball, a bottle of Coca Cola, long walks and daily visits to Tim Hortons. His journey through life had never been easy; and in spite of these challenges he kept on smiling, joking, walking, and looking forward to seeing his dreams come true. 

He loved words. He chose every greeting card so very carefully and when you read it you would know that its sentiments were truly and deeply held. He also spent many hours working on writing his own stories about finding one’s place in society.

He loved nature; he followed the rhythms of night sky, understood the patterns of the weather that was coming, and all animals.

Above all, Charlie dearly loved his family, especially the children. For this, and much more, he will always be sincerely loved, very much missed and never forgotten.

per·se·ver·ance –noun
1.       Charles Frederick Griese
2.       steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement.

 1962 (Christmas),  NYC

1962, Coney Island, NY

1966 (Easter),  Queens, NY

1995, Ontario
to be continued:
Part 1 - The Journey
Part 3 - The Gift
Part 4 - The Goodbye

The Melanoma Journey

A few months ago I posted about the diagnosis that my brother received. This was the start of a short and rough journey for us. I have learned that Melanoma is not a cancer with a lot of hope, at least once it has metathesized.

For Charlie it was already too late. He did however live bravely.

We helped Charlie live these last months, and so he lived until he died - July 11, 2011. I want to share his story so that someone, somewhere else is helped by him.

Charlie spent 3 months in the daily care of Stratford General Hospital. He was there before his diagnosis and then spent the last 2 months at home.

In the real world, he lived with our mom, (a mutually beneficial situation). The family comprised  Mom, myself and my family, two more sisters and their families (living in the US), and a brother along with a collection of Aunts, Uncles, and cousins all over the place.

Life threw Charlie more than his fair share of challenges and he faced them all with an amazing attitude. He did not complain about his circumstances very often but always looked at how he could keep on doing what he wanted to do in spite of them. He was always working at getting his life on track.

Charlie had both knees spontaneously fracture in the early 90's due to calcium loss from kidney disease. Then the kidney disease -glomerulonephritis - led to dialysis and eventually a renal transplant in 1996. He fractured his hip. The hip replacement failed and he had it repaired in 2003.

With all this he walked many  miles every day, with routine stops for his Timmies .

to be continued:
Part 2 - The Man
Part 3 - The Gift
Part 4 - The Goodbye

Wednesday, 3 August 2011

A whole lot of living, and some dying

It has been a while since I have posted to Barda. I will be back with stories, both happy and sad, very soon.
Thanks for waiting patiently.