December 23, 2011

It's Christmas. What do you believe?

Merry Christmas to everyone. As I was raised in the christian/commercial version of the season, I feel comfortable with that salutation however, whatever your beliefs, I hope you have a great holiday season.

Christmas is a time of happiness for most/many of us, but it is a season deeply rooted in beliefs. So I thought it would be a good opportunity to talk about some of my beliefs and how they may have changed since I became terminal.

When I was young, I believed in Santa Claus. There was nothing spiritual in that, but it fit in with the commercial nature of Christmas and, like most kids, I loved getting presents. Even though I believed in the story of Jesus, Joseph and Mary, I admit it was still all about the presents.

But that was then and this is now. Christmas has changed for me as it changes for all of us every year. It's a wonderful time when you are young and when your kids are young and it can still be wonderful when you're older, particularly if you use the time to celebrate your beliefs or to reach out and surround yourself with loving family and friends. When you have the spectre of an early death hanging over your head, these special times mean so, so much.

I am 58 years old now and I believe that the love of my family is the single most important thing I have. I don't believe in Santa Claus anymore and I'm really not that hung up on Mary and Joseph or even Jesus. In fact, I'm still not sure what spiritual beliefs I will take with me to the end. But Christmas makes me think of these things. For some reason, the religious aspects of Christmas bring to mind the eternal question of what happens when I die. However I know I'm not going to find an answer to that question this Christmas.

Beliefs are important. What we believe and what we don't believe help to define who we are and what direction our life takes. They say a lot about what kind of person we are..... what kind of person we have become.

As I was saying, I believe first in the love of family (and close friends). I think many of us take this for granted most of the time and, in the past, I was definitely guilty of that. But not anymore. As I ponder the true meaning of life, wondering what comes next for me, I know for sure that a big part of my life is the relationships I have with others. Every time we interact with someone else, we change something about them and that is what keeps us, as a society, moving forward. So many of our interactions in life are with our families - first our parents and siblings, and then our spouses and our own children. When we look back at what we've accomplished and think about the truly meaningful times in our lives, we find it is all about family and close friends. So, for me, this is the most important belief.

Many of my other beliefs have been tested by my initial diagnosis of cancer and my latest prognosis of an early death.

I have never really believed in miracles, which wasn't a big deal for me in the past but since I developed cancer, I have been asked by many people to believe in miracle cures. I'm sorry, but I just don't. I can't. And, no, I haven't been brain-washed by the global pharma conspiracy! I'm just the kind of person who needs proof! And, unfortunately, many, many people have died while waiting for a miracle cure to work.

I also don't believe that suddenly taking better care of yourself will cure cancer. The idea behind this is that strengthening your immune system will allow it to successfully kill cancer. I can accept that it might kill some cancer cells and therefore might help someone on the margin, but if your cancer is well advanced (as mine is), there is no evidence that it can wipe it out completely (which is how I would define a "cure").

I don't believe that doctors are Santa Claus or that their bag of goodies will cure my cancer. If there was a cure, I'd have it by now. Forget, "This might help,". And please don't get my hopes up!

I don't believe that death is necessarily a bad thing. It is inevitable, after all. If you prepare properly for it, I believe that you can have a "good" death. It is, of course, awfully sad for those you leave behind and, whatever happens to me, wherever I end up, I will miss everyone. But maybe I'll see everyone who has gone before and I will be able to look forward to seeing my dear wife and kids again!

I don't believe that God fixes sports games or helps Survivor contestants win challenges. If there is a supreme being, he or she certainly doesn't care who wins what. So thank yourself if you get that touchdown or get your flag up first. God has more important things to worry about. While I can see praying to beat a disease I personally don't believe that this will cure me. But everything helps and well.... you never really know!

I do believe in people, especially good people. While some people can be bad, it's not that I don't believe in them.... I just don't want to have anything to do with them. Good people are the salt of the earth and my associations and interactions with them have made my life so much better.

While I may not believe completely in God, Jesus and the rest of the "story" that defines the Christian theism, I do believe in what Jesus stands for. Peace on earth and good will towards man sounds pretty darn good whether you happen to be muslim, jewish, buddhist or even atheist. Unfortunately, I don't believe we will ever see that as a fundamental tenet of life on earth (we're too busy shooting at each other and blowing things up) but Christmas makes me think about it and affords me an opportunity to have a little hope for the future. For all of us.

I believe my mom and dad are waiting for me in some form when I die. My closeness to them during their last hours was intensely spritual and gave me hope that I will see them again. I miss them at Christmas.

I will be exploring my sprituality much more intensely as my time grows shorter and, of course, I will be sharing this with you. But for now, I just want to think good thoughts and make wonderful memories with family and friends. For now, I choose to believe in the Christmas spirit that brings people closer together to share love and happiness and make a little peace on our patch of earth.

Love transcends Christmas, but it is so much a part of this wonderful time of year. For Dianne and I, it is a special time and everything we can do together just adds to the wonderful storehouse of memories that she can hold onto and that I can take with me, wherever I go.

Merry Christmas everyone. Whatever your personal beliefs, enjoy the special feeling in the air. Be with those you love and love the ones you're with.

December 10, 2011

Stopping Treatment - Revisited

My choice to stop treatment is at the core of this blog and fundamental to my state of mind as I undertake this final journey and try to make the most of my days. So I feel compelled to periodically revisit this decision, particularly when I run into others who are either wrestling with the decision or have already made up their mind. Normally, these are very emotional discussions and, often, many of the individuals come across as conflicted and certainly stressed. It's an incredibly important area for all of us to understand, especially those whose life circumstances place them in the horrible position where they have to make such a decision.

When I first made my decision, I didn't feel it was that difficult for me. I think that was because I had been living with cancer for a long time, had researched the hell out of it and basically felt that I knew all I needed to know. And most importantly, I knew that it was my choice. I never once thought it was the doctor's choice and hadn't really thought about that possibility until I started reading articles about "never say die" doctors who will continue to present "choices" that are really not choices at all. Now, this doesn't apply to everyone. At many stages of a disease there are real choices of treatment to make with varying degrees of risk and potential benefit. But when you are at the stage where your disease is incurable, the only real choice you have is to continue treatment or to stop. Doctors will present treatments in very good faith that may have some benefit but that benefit may be very small. When presented as an option, many patients see the choice - to continue treatment or not - as a choice between continuing to fight or giving up. I don't, but I think many do.

I have spoken to a number of others in my situation lately and have found many who plan to continue trying anything that comes along with the hope - or maybe the belief - that it "might" help or even that it "will" help. There are even a few who refuse to admit that they are dying, perhaps because they find the thought terrifying. When I speak of my decision, I wonder if the others feel that I am giving up. We all say that it is up to the individual and bear witness to our right to make that choice, but is there an unspoken judgement there? Or do I feel some sense of guilt or indecision deep, deep, deep in my own troubled mind? Who knows? I don't pretend to, and I'm open-minded enough to consider that maybe I'm the one who has a problem with it.

Regardless, It is a very important decision and a real one. And clearly, it's not a decision you make and then move on. Whether it's through discussions in support groups, with your doctor, your own family or friends who have heard about something they think you should try, it can keep popping up from time to time and you have to deal with it. It's important for your caregiver, your palliative or hospice team and your doctors to know where you stand on this so they can interact with you accordingly. I've made up my mind to forgo further treatment and, while I may choose to revisit that decision from time to time, I am at peace with it and I don't need to be pushed into second-guessing myself. I'm thankful for their concern, but it's my choice and it's the right one for me. Please honour that as you would anyone else's choice to "keep on fighting".

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December 1, 2011

From Type "A" to Type "Z"

This is about loss. About being dragged down from someone you were, to someone you never thought you could be.

There is little doubt that I have been a Type A person for most of my life. I always have to be doing something and I am driven by perfectionism. But since I developed cancer, especially since it metastasized, I have steadily lost capabilities such that I now classify myself as Type Z. The Z is for Zombie. Zombies are pretty popular and they provide a good model for describing how I feel these days (Dianne tells me I don't look like a Zombie, but I'm referring to how I feel). For I have lost so much and am on track to lose so much more. Too much. At times, just thinking about it drags me into a deep depression. These are the times I really feel sorry for myself. It's when I cry.

So what have I lost? Well, quite a lot.

- I have lost the ability to work, something which has defined me for most of my life.
- I cannot make the kind of money it did when I was working. There was always a commission on it's way to help with a big purchase, repair, vacation or event. No more. I'm just scraping by.
- I have lost the pride I wore like a mantle for doing a good job and for being recognized for it. The respect of my peers.
- I don't see the many people I met through work. They were not necessarily best friends, but they were my "network" who we're always up for a beer or a coffee.
- I can't travel like I used to. I hated the extent of traveling I had to do for my job from time to time, but I enjoyed being a jet-setting business man and meeting new people in other countries.
- I forget things all the time....words, names, what day it is.
- I can't drink any alcohol because of the medication I'm on. I loved good scotch, cognac, dark beers.
- I don't enjoy food like I used to and can't eat as much.
- I can't kayak like I used to and miss my annual summer kayaking/camping trips with my buddies.
- I can't participate in any sports and I can't even work out or jog, so my body has lost all it's muscle tone (well a lot, anyway).
- I have only a few really productive hours in the day because I sleep so much and am so drowsy the rest of the time (from the cancer and my meds).
- I don't play my guitar any more.
- I have had to cut back my active involvement in health care advocacy.
- I live with varying degrees of pain every day. And I'm not in love with the meds I have to take to make it bearable.
- I have a great deal of difficulty with intimacy which is hard on Dianne and I.
- Above all, I am losing a future with my family and friends, and especially with Dianne.

Wow! Sounds pretty desolate, doesn't it? Well, it sure feels like that some days! But to be fair, I still have a lot to be thankful for and I don't want to minimize that. Yes, maybe I'm whining, but I'm being honest about it because, after all, that is what this blog is all about. I have to be open and honest with you. You need to know what I feel..... what others in my situation feel.

A light in the darkness!!!!!!!!! Recently, Dianne and I connected with the Dorothy Ley Hospice, which has been like a breath of fresh air to us. In addition to the support of our family and friends, we now have the support of a wonderful team of volunteers and professionals and the occasional companionship of others who are going through what we are going through. Does that move me back up the alphabet? Mmmmmmmmm.....nah. But it sure helps to concentrate on the good things in life; to realize that, in spite of what's happening, life is good!

And I can still write!!