Archives for category: cancer

Thirty-five weeks, three days

The expectations around Christmas are never easy. We all suffer temporary madness leading up to this season which demands that we feel and act in ways that are fundamentally unnatural, particularly when faced with cold weather, financial strain and the inevitable weirdness of family dynamics. Don’t even get me started on Christmas decorations in Costco the day after labour day! These converging realities alone create a perfect storm of emotions. I always feel like I’m dancing with the devil to keep my head above water emotionally during this time of year, and I’m sure most of you feel the same.

Somehow, Ray always seemed to be able to see Christmas through a child’s eyes. He was certainly competitive when it came to lights on the house, the tree and the perfect wreath. But it was a joyous competitiveness, as though each competitor was only in it to make the season more beautiful. I was always the practical one — we can’t afford this, that isn’t realistic. But Ray seemed to be able to create magic out of dust and string. Where I thought money had to be spent, he saw that energy and thought — and sure, a bit of money — could happily be expended to find a creative solution. He did it year after year. I was always humbled by his ingenuity and love around Christmas time.

My little sister, Libby, reminded me that it was about this time last year that Ray, beginning to seriously lose weight as well as his battle with cancer, climbed up on a ladder to put up new lights on the roof. She joked that we were worried about God knows what and yet, this guy, full of toxic chemo, was clambering around in the cold, decorating the house. We were stunned at his strength and will to keep things normal. I’m missing that normality right now.

November in Vancouver is not an optimal environment for anyone with even a teensy leaning towards depression. It is grey, cold, intolerably wet and, to be honest, has always felt like the picture of death to me. Tim Burton has nothing on Vancouver in November. This year I’m doing it without Ray and it’s a struggle.

I’ve been packing my life full of tasks to distract me and, to an extent, it’s working. But I don’t know how well I’m going to do through the next thirty days. Christmas was Ray’s time. He made it magic despite the ostentatious contrivances we have created for this season over time. Ray made November beautiful.

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No one should have to endure watching their mate slide way. I love her and the kids more every day.

I finally screwed up the courage to look in Ray’s most recent journal. I have kept it, along with a few personal items, neatly arranged on my dresser like some kind of shrine. I didn’t intend it….it just happened.

Portrait of Ray and card by KAth Boake; metal flower by Kathryn Diakiw

I have touched the journal many times, wondering when I would have the courage to have a look. There are others around….written when he was more well. This was his last. I picked the book up today as I wanted to make sure this little shrine was pristine and free of dust. As I did, the floodgates opened and I wept loud and hard. I talked to Ray and I felt him trying to reassure me. I told him I missed him and just wanted to talk to him and hear him talk to me. I opened the journal.

The passages were a bit spotty, mostly how he was feeling and documenting the staggering number of interactions with doctors. On January 28, my brother-in-law, Sean (God love him) came to take Ray’s office on the main floor apart and move it upstairs to where our guest room was. The hospital bed came in the next day and it was the last night Ray slept upstairs with me. What followed was the collapse of any efficacy of chemo; daily pain readings and planning for a little shopping trip to Pottery Barn. On February 18, he wrote the quote above. It’s the last thing he wrote in this book.

I find myself looking for crumbs now. In the closet, folded and piled in haste, sits the outfit he wore on his last night, dressing up for his baby sister Savannah’s birthday party. I can’t even think of moving that. I feel like his soul is still in that little pile somewhere. This is the dilemma we face with the loss of someone so important. We imbue “things” with their essence. Their being becomes inseparable from a pair of jeans and a well-worn pullover. Rays’ hand, clearly failing over the last few days of entries, wrote those loving words to me and to my kids. It’s as real now as it was when he wrote it. It is no fainter or duller for the nearly six months that have passed. It is a message suspended in time — and it breaks my heart…again.

Not all cancers are death sentences. Not all cancers are fast killers.

I need to get this out of my system. If you are a cancer patient, hear me out. Not all cancers are death sentences. Not all cancers are fast killers. However, pancreatic cancer is a difficult diagnosis to have.

Please, don’t despair. Don’t give up. I think it is 90% attitude and Ray is a testament to that. In the 6 years he pushed back at pancreatic cancer, advances were made. He was not the only one to live far beyond the expected statistical norm. Steve Jobs passed him by a year. And I know of people with a pancreatic cancer diagnosis who are still alive after 15 and 20 years. If you have a new diagnosis of pancreatic cancer, who knows? Don’t rely on statistics. New drugs, new advances are coming on stream every day. Our oncologist, Dr. Hagen Kennecke at the BC Cancer Agency did everything new he could find. Granted, Ray was exceptional. He never allowed cancer to have any power over him. And Hagen and the staff at BCCA battled right along side him.

Look at diet, it’s important. Look at acupuncture, yoga, meditation. All of these have immense power over your physical systems and can extend your life in a very healthy way. You can have control over this and you need to use it. You are not a victim. Fight back. But — most important — be invincible because you can be. Your next 5 or 6 years may be the time that we find a cure. Be strong. Live every day.

Four weeks, six days

I knew Ray would die. Everybody says, “Oh, you could be crossing the street tomorrow and…”, but that’s not really the point, is it?

When someone you love has cancer, there is, suspended in air, a shoe. The first one hits the floor at the moment you hear the diagnosis. Cancer. The second one hangs there…

I stood, rigid, for I don’t know how long while a hotshot young GI specialist doing an ERCP poked around with a probe down Ray’s gut fishing for what he was looking for. He knew all along that he would find an adenocarcinoma. I was standing right outside the door. I heard every word. While he poked around — Ray moaning in discomfort the whole time, and the nurse telling him to hold still — the doctor talked to his team about his weekend. Workaday stuff this was for him. Afterwards he swaggered out and said, “yep, it’s cancer”.

Here’s the thing. No one had had the cahones to tell me that they suspected cancer, not the GP, or the phalanx of emergency doctors to which he sent us. They all kind of hoped someone else would do it. So this guy threw it at me like yesterday’s news. I remember the cool wall touching my back as I sunk into it. I remember thinking I needed to get to Ray. I remember hating that cold-hearted SOB for not even considering the human element in this equation. He gave it to me like an invoice for a car repair.

I didn’t know the first thing about pancreatic cancer. As knowledgable as I am about human anatomy, I wasn’t entirely sure what a pancreas did. I learned most of it within 48 hours. And I wept. Pancreatic cancer takes no prisoners. Most die within a year. The 5-year survival rate is under 5%. I remember calling my son and daughter, even less prepared for this, to tell them their dad had cancer. I had so much trouble forming the words. Who the hell knows how you are supposed to do this?

There is an epic story that follows this event which I will get to at some point in this blog, but my point tonight is that it is somewhat bizarre knowing you’re living with the love of your life while they are dying faster than you had expected. You don’t know how fast, or how it will all happen, but you can pretty much count on not having those halcyon days of sweet retirement together. That home looking over the vineyards in the Okanagan where we would enjoy the hot sun and play with our grandchildren — not happening. It’s blunt. It’s cruel. You know that other shoe will drop. It hangs there…suspended…waiting.

Twenty-five days

I don’t know where you are in the loss process. I’m not sure where I am. But it occurs to me that I have the ability to write and to rationalize my experiences. So, in the feint hope that I can help another person who is newly facing loss or who is raw from the loss of someone so important to them that the loss seems insurmountable, I’ll document my thoughts.

This is my first post, so bear with me. I lost Ray, my perfect soulmate on March 23, 2012. Three weeks and two days ago. I have the ability to distance myself from my own reality on occasion, as I’m sure we all do.

Ray was diagnosed with pancreatic cancer on March 17, 2006. I was gobsmacked. He was only 52 years old! We were successful…planning our lives….making a difference, and then everything changed in a blink of an eye. I had to call my kids and tell them that their dad was seriously ill…but he was fine yesterday.

I’ll write about the in-between some other time, if you want me to, and if I think it’s needed. But for now, let me tell you that six years of knowing that someone is likely to die does not diminish the shock. We had times of absolute bliss where the cancer seemed so distant. But it was always that “other shoe” and we waited for it to drop. I always thought we were “just kidding”. Ray was one of the stoic people who never acknowledged the illness and just kept going. So, when he finally started to show signs of weakness: a cane, a wheelchair, a dependence on oxygen therapy, I had to start seeing the reality. It was a short reality. From the time he needed that cane and oxygen to the time he died was three short months. He went from a robust 200+ pounds to I don’t know what in that time. He was light, frail and struggling to breathe in such a short time. How could this happen??

Ray was well known in our professional field. Three hundred people attended his Celebration of Life. Countless others watched it via live feed and later watched the recorded version from all around the world. That makes this not greater or less than your loss. It’s just that I find it difficult to understand how someone so loved and respected could be plucked from life when he had so much more to do. I am struggling with that right now.

Here is what I worry about. People will give me and my children time to grieve. But it will be far, far less time than we need. My doctor sat me down last week and, though she never does this as she knows I’m “in control” she told me, “let me tell you something about grief”. She told me that I will need a minimum of one year…to start. That’s for all the anniversaries. Each day will be a day without Ray. The year won’t do it, but the problem is, friends and maybe even family, won’t give us even that one year. They’ll give us weeks, maybe months. Then they’ll want to get on with things and expect that we will do the same. But we can’t. There is a smoking, meteor-sized hole in our lives. We just can’t fill it in that fast.

If you are reading this and you’ve lost someone, fight for time. You deserve it and you need it. If you are a friend or family member, back off. Allow the loss to settle. That settling time will be long — likely much longer than you will understand.

I’ll write more as I see that I can.

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