April 28, 2012

Finding Dignity in Death

One of ways that I explore the complex subject of death and dying is by reading books and discussing interesting arguments and points of view coloured with my personal perspectives.  Doctors and hospice workers see and hear many interesting things and try to make sense of them by putting them in some kind of structure while I can respond with what it means to me as a person dying of a terminal illness.

Most recently, I read a book called "How We Die" by Dr. Sherwin B. Nuland.  It is a well-known book and covers a lot of interesting territory encompassing how death manifests itself through a variety of diseases and mechanisms.  I was most interested in some of his ideas about how one finds dignity in the process of dying. In particular, he hightlights the idea put forth by others of "psychological autonomy" (Jay Katz) or the right to independent thought and self-determination and the choice by the patient not to exercise it.  In other words, while we have the right to make choices regarding our own treatment, as I and many others have, there are many who chose to let others make these choices for us, whether it be our medical team or our loved ones.  There is a lot of choosing going on here - choosing not to choose is a choice in itself - but some of it smells of cop-out to me.  I can't argue that the choices to be made are tough but who benefits when someone other than the patient is put in the position of making critical decisions of life or death for us?  I'm a control freak and will be until I die so I want to make the decisions that affect how I die while I am in a position to make them.  I've done this and feel good about it.  From my point of view, it just isn't fair to leave these decisions to my dear wife.

Going a little further back, in deciding on no further treatment for my incurable cancer, I have avoided being at the receiving end of a series of experimental drugs and chemotherapy choices that would only make me feel worse and would further tax the health care system.  And for what?  The real issue here is that many of us are so overwhelmened with the emotional and physical impact of a terminal prognosis that we don't have the psychological strength to exercise the control that we have.  I suggest that, in these cases, it is critically important that our loved ones, caregivers and medical team work together with us to ensure we are aware of exactly what is happening to us, what is likely to happen as result of different decisions which must be made, and ensure that our true wishes are taken into account.  Help us to help ourselves.

I further suggest that leaving the decisions to the medical team is not necessarily a healthy choice.  This is at the heart of the decision of whether to continue treating a condition that is ultimately not going to turn out well and puts our doctors in a difficult position.  When charged with the responsibility of continuing to "treat" our terminal illness, we are forcing them to make many large and small decisions that deny the reality that we are going to die regardless and satisfy a perceived need to be "doing something" that may have no benefit at all.  The fact that the doctor is obligated to do these things, whether they think they are the right things to do or whether hope is already gone, is patently unfair in my estimation.

I believe that we find dignity in death by the measure of the life we have led up to this point and in ensuring that we make dignified decisions regarding our final days to avoid flailing about in uncertainty.  For those who have difficulty with these final decisions, there is lots of help out there.  The hospice community is well versed in processes to help and can provide tremendous support through the final days and beyond.  If you are having difficulty on your own, then reach out and ask.

No one needs to die alone.  We need to know we are dying, the circumstances of our death, and we need to know that we have cleared the way for a good death.  A death with dignity.  It's the least we can do for ourselves and for our loved ones.

Personal Update

I feel I am on the razor's edge of a balancing act with my medications.  The palliative approach to managing symptoms, while working, has me on a fist-full of different medications which all must be fine-tuned. It's taken a couple of months already but my pain is now manageable and I can see a light.  However, my fatigue is back and I am becoming more dependant on oxygen so life is not a bowl of cherries.  But I soldier on.

April 21, 2012

When dreams die.

With all the talk about dying it is easy to focus on the tangible things that go away or disappear when we die. The things that we often leave behind incomplete because we didn't have the time or the will to carry through. We could have completed them if we had really wanted to but, for the most part, we chose not to. But sometimes we just run out of time.

So we miss out on seeing people, on going places, on doing things, on saying the things that we thought were important but which, ultimately, were not as high on the priority list as we thought. But that is so much water under the bridge. While some people may be offended because they are left out, there really shouldn't be any animonisty amongst close friends. Shit happens when you're dying

But then there are the less obvious things that don't get done. The hopes, the dreams, the intangibles of life. The things that have the potential to mean so much but which seem so unimportant when they don't get done. Our biggest hope is that we find a cure or at least find some kind of treatment that will keep us going for a long, long time. Sometimes that happens because medical science has stumbled upon some new miracle drug that works miracles on a particular cancer (it happens!) but even that doesn't feel miraculous because we pray so hard and have such unrealistic expectations of medicine to begin with. "Of course it happened. I fought hard and it paid off. You must not be fighting hard enough. Drink that wheat grass (or whatever) and you'll be just like me!" But there are so many hopes that go unmet and because they are not directly related to our disease and to our terminal prognosis they don't seem as connected or important, even though they are. I hope that my family doesn't grieve too long, but that might not happen and that would be sad indeed. I also hope that I have left them financially viable but have no control over the economy or what governments decide to do in their questionable wisdom. These hopes mean more to me than those other more discrete "things" yet I don't have as much control over them and they certainly bear more heavily on my mind.

And then there are the dreams which we leave behind. All through our lives we have dreams of what we are going to do with our career and more importantly with our money, our savings, our retirement funds and the time we will have to use them as we approach our golden years. When we are first married and in the workforce it seems we have forever to create that nest egg and set ourselves up for a retirement (hopefully early) where we can enjoy the fruits of all of our labours. Where life can pay us back for our contributions to society and to the economy. I see so many of my friends doing just that and I envy them so much. I certainly don't begrudge them because if things were different, that could just as well be me, but their success in achieving their dreams just emphasisizes how much I will miss my dream of retiring and spending the last several decades of my life with my wife and children and their children. Or my dreams of kayaking down the Baja or moving to a small town on a lake where I could work part time at something I liked and enjoy all the extra time I would have. What sweet dreams they have been and they have sustained me through my working life over many years of long hours in many cities, so often away from my children as they were growing up. And just as these dreams came tantalizingly close, they have been snatched away from me. They're gone, replaced with the more tangible hopes that Dianne and the kids will be okay.

It hurts. There's nothing good about it. But I'm hanging on to these last hopes and just have to accept the loss of those dreams that can now never be. In the meantime, my dreams are beginning to focus on what is waiting for me on the other side. So far, they're pretty positive and that's a good thing.

Personal Update

Great visit with my doctor. We have reached a floor with the steroids now and may have to go up a bit to avoid the muscle spasms and cramps I've been experiencing. He talked about the need to have a philosphy of care such that we need to worry about the day-to-day experience rather than the longer term effects. I had a severe fall on the weekend which he traced right to the cancer in my back and which resulted in a serious sprain to my right ankle. Just what I needed!

April 15, 2012

Still Here?

Can I live too long? Can I outlive my usefulness? Can you get too tired of listening to me talk about death and dying? I don't think so. But is it possible? In my earlier blogs I wondered what might happen if I lived past my 12-18 month prognosis. And with my recent birthday, I've passed the 12 month mark. This is where everyone points out that doctor's estimates aren't very accurate and that I'm looking pretty good these days, which is supposed to make me feel good and helps to better deal with my situation. Well, the steroids are fleshing me out so I might look better from that, and my pain is under better control so maybe I can afford to be optimistic.

Outliving my prognosis would certainly give me the time I needed to say the many, many things I want/need to say. I would have a more wealthy set of experiences upon which to draw for my writing so the legacy imparted by dyingdigitally.com would be more robust in terms of content. That would be a good thing, right? And, of course, there would be all the extra time that I would get to spend with Dianne and the rest of my family and friends which can only be measured as precious.

So all in all, outliving my prognosis is a good thing as it would be for anyone and certainly something I should never, ever feel guilty about.

So what's the issue? I've read a few article recently about others who are dying of critical illnesses like cancer and who have written blogs or used other forms of social media to keep friends in touch with what is happening to them. As expected, their friends reach out to them in many different ways to offer help and encouragement and maybe even say goodbye in whatever way is comfortable for them. But as time goes on, they find that their friends are still around and start to feel uncomfortable saying goodbye again and again. Here's a quick quote fron one blog to illustrate the point:

"...many of her friends have, to put it bluntly, grown weary of her dying. They aren't so cavalier about it, but it's clear people don't know what to do or say anymore. That sounds terrible. But it's an un-discussed issue with cancer: When do people develop a "maximum saturation" with your problems?"

Wow! This was something I'd really never thought about before. And while I raise it here as an interesting aberration, I choose to discount it and suggest that it is in the eye of the beholder. If you wish to say goodbye and find it too uncomfortable to continue to have a relationship with a friend who has a stroke of luck in an otherwise difficult situation, then that's just sad.

Having said that, there are some other interesting aspects to this kind of situation which go beyond the emotional side of saying goodbye.

What about survivor's guilt? I must admit that, at times, I feel a little guilty that I have outlived so many others who have developed cancer. Irrational, I know, but there it is. Many people die within a year of diagnosis and here I am still around after almost ten years. While I am tired of being sick for so long, I am not tired of living!

And then there is the impact on our caregivers. Caregiver fatigue is a real phenomena. We rely so much on our spouses and other loved ones to take care of us, knowing how hard it is on them but thinking it's not forever. But as our illness drags on, it sure can feel like forever and they may not get the breaks they need to take for their own health. This is absolutely something that weighs heavily on me. Dianne would never say anything about this to me but I think I would know. I would know and I would do something about it if I could.

And there may be practical considerations associated with outliving your prognosis. Many of us are on some kind of disability insurance which may not last forever. What do we do when that income dries up? If you are working, what happens when you can't work anymore? With no income, how do you pay the bills? How do you pay the mortgage or the rent? This is how people end up on the street. There may even be limits on Hospice benefits in some jurisdictions so even this compassionate end of life support may dry up.

So it's much more than just people getting tired of you hanging on. Maybe that's just some kind of weird guilt thing that manifests itself in people like me who care about the people we love and the pain and suffering we put them through. But it is complicated and many facetted adn shouldn't be taken lightly. If you feel guilty, you need to talk to your loved ones about it. If you're feeling uncomfortable about saying goodbye over and over again, then don't. Just enjoy the time you have as you would normally. True friendships will prevail and if they don't, then maybe they weren't all they were cracked up to be in the first place.

I hope you found this to be an interesting wrinkle on the subject of death and dying as I did. So far, I'm not in any of these situations and I still have the expectation of dying before too long. With all of the symptoms and side effects I fight daily, I just don't expect a miraculous recovery or an extended illness.

So here I am, hurrying to get things done, feeling the pressure of time, but not really worrying about whether I'm overstaying my welcome. Why should I?

Personal Update

As I lower my steroid level, I find my pain returning. It's still manageable but it's there. My fatique is also returning and I forgot how debilitating that can be when my body needs to sleep 15-16 hours a day. I'm seeing my doctor this week to discuss these tradeoffs. The fact is there may not be some ideal level. I may have to live with some things I'd rather not have to live with. But regardless, it's still living!

April 6, 2012

Happy Birthday To Me

So it's my birthday. Happy birthday to me. I have been overwhelmed with birthday wishes from friends and family and from my new friends on Facebook and the blog community. It's a wonderful feeling!

Birthdays can take on different meanings as you get older. Some people want to stop counting at a particular age - it was 39 for me for awhile - while others want to celebrate with abandon as they snatch one more year of life from the ever-dwindling supply available to us. But for the terminally ill, birthdays become much more meaningful. They are in such short supply that it is impossible to ignore them and they become key milestones in our remaining journey. I choose to celebrate my birthday as a tangible indicator that I am still alive and still determined to beat the odds and get from this one to the next. This is where my optimism shines through and where a postive attitude can take root and strengthen my resolve.

Others may try to forget because they view such milestones as countdown markers leading to their death - a measure of how little time they may have left. But as much as they try, they really can't forget because choosing to not celebrate gives power to the day as well. It certainly can't be ignored!

When you are living with a terminal diagnosis it is often a struggle to give meaning to each day you have. You try your best to make the most of each and every day - to milk the very best and very happiest of the time you have, particularly with those accompanying you on your journey. Otherwise, you find your days measured by other things - a handful of pills in the morning, a couple more at night, another handful of fills with a slight adjustment the next day and then a couple more at night. Every day must have meaning and it is often a struggle to find that meaning as the days count down. But give me a birthday and I will pack it full of meaning. I'm alive and right now life is very good.

Today, my brother and nephew are down from out east and, big surprise, my son showed up from way out west to be with me today and for a couple of weeks. Nothing could have made me happier.

So here I am. It's my birthday and I'm surrounded by people I love. It may indeed be my last one, but it's my birthday and I'm surrounded by people I love.

Life is good today.