May 31, 2012

Goodbye from Doug

(Doug passed away this morning, May 30, at 10:45 am surrounded by family and with his loving wife Dianne. We found this post that Doug wrote some time ago and know he would want it posted.)

I used to have a pair of wings, silver, that I worn on a chain around my neck for awhile last year. I asked that they be kept near the bed because I would need them to get me up to heaven, or wherever else I end up. Not hell - I don't believe in that and I am one of the good guys anyway. Wherever I'm going, I'll be there by the time you read this.
I wanted to say goodbye, but there's a lot more I need to say so I asked my dear Dianne, my soulmate, to make sure it got posted.
Worried about the future. Lots of good, but overshadowed by greed and pursuit of power. We cheer when dictatorships fall but we see the short-sighted decisions made by our own governments all in the name of betting re-elected.
We are idealistic when we're young but we learn that these ideals will never be reached as long as their are ways to achieve power over others and greed and money etc. Disheartening. Helps us to focus on our own lives, etc.
Not physical beings on a spiritual journey but we are spiritual beings on a journey through the physical plane.

Have made mistakes, but these are identification marks of our humanity.I am the product of all I have done and I will bring that with me.
Starting a new journey.

Used to say I would leave on a spaceship. That's how I look at dying.

So hard for Dianne. Afraid of being left alone and growing old without someone to understand her.

What I will miss most!

Followers. How they touch me.

Permit me this final dollop of guilt and let me ask Dianne if she can ever forgive me for leaving her.

Remember me fondly. Wherever I go, whatever happens to me, I will have that much immortality.

"All of this makes more precious each hour of those we have been given; it demands that life must be useful and rewarding. If by our work and pleasure, our triumphs and our failures, each of us is contributing to an evolving process of continuity not only of our species but of the entire balance of nature, the dignity we create in the time allotted to us becomes a continuum with the dignity we achieve by the altruism of accepting the necessity of death.
A realistic expectation also demands our acceptance that one’s allotted time on earth must be limited to an allowance consistent with the continuity of the existence of our species. Mankind, for all its unique gifts, is just as much a part of the ecosystem as is any other zoologic or botanical form, and nature does not distinguish. We die so that the world may continue to live. We have been given the miracle of life because trillions upon trillions of living things have prepared the way for us and then have died—in a sense, for us. We die, in turn, so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life." (Sherwin Nuland - How We Die)

May 29, 2012

House

I get a lot of my blog ideas from what is going on in my head and many more from what I read.  But some come from other strange places.  Like television shows.  Like "House", which I just started watching now that its over.

In a recent episode, lo and hehold, one of the key characters had cancer which looks it's going to get him.  His name is Wilson and he himself is an oncologist and Dr. House's best (and only) friend.  He is trying to come to grips with the idea of dying and having a hard time with it, so he reaches out to one of House's old team (13) who has a terminal prognosis and asks,  "Does it always have to feel so surreal?  And I immediately realized that this was the word I was looking for when people asked how it felt to be dying.  I would say confused, depressed, detached, disconnected, like living two lives.  But none of these seemed to capture it quite so well as this.  It does feel surreal.  There is a strange reality to each and every day that I find myself trying to reconcile - I'm dying but I'm alive.   If I were stronger, perhaps I could focus more on being alive, but the disease that will kill me has taken much away from me such that I don't have that physical strength and, as such, I don't really have that choice to make.  That's my reality.  So surreal it is.  It works for me and I hope it helps you understand this strange existence just a little bit better.

In the same episode, one of the doctors quoted the results of a post-911 study that determined repression was a better coping mechanism than wallowing in grief.  Now, I don't know whether that study was real or whether I've interpreted it correctly, but it's an interesting thought.  Some things are just too big for us to handle and perhaps the idea of dying is one of those things that, while we can't escape it, perhaps we can repress it enough to get on with living for awhile.  Is that even possible?  It goes against the grain of everything I represent but, just as some people deny that they have cancer as a way of coping, perhaps they can deny that they are going to die from it.  Denial.  Repression.  I couldn't do it and wouldn't want to.  But maybe some can and maybe it works for them.

Anyway.  Some interesting thoughts from an interesting source.

So long, House. 

PERSONAL HEALTH UPDATE

I realize now just how sick I was this past week and how close to death I was.  When I first reported on it, I was focused on the fact that I had sepsis and what a terrible thing that was.  But then I discovered that I had lost 2 days, some of it completely and some of it in sickened haze where people came and went and where Dianne ministered to me hour by hour, essentially keeping me alive.  And now, with the relative clarity of hindsight, I can experience viscerally the weakened state it has left me in.

I rely heavily on oxygen now.  Going up or down the stairs, carrying dishes into the kitchen.... simple things like this leave me gasping for breath.  So we  had the family discussion and decided to make a last stand in my own bed, close to bath and shower and the additon of a small fridge for medicines and cold drinks.  We decided that this would be the best place overall where I would be most comfortable and that could hopefully minimize the amount of vertical travel.  I fully expect to get sicker from here on in and we will handle this as best we can from our new headquarters.

We'll see how that goes!

May 24, 2012

Personal Health Update

Rather than posting on a special topic today, I wanted to bring you up to speed on a major health issue I'm now facing.  Since it's related to my terminal condition it's important for you to see what can happen and how it effects me.

This past weekend, Dianne and I visited the home of a relative of some dear friends which was located on a beautiful lake.  It was a chance to get out of the house and into the country which I dearly love to do and a chance to see how I handled a two hour car ride.  As the weekend went on, I started to feel kind of off and, in retrospect, there had been signs that something was happening for a couple of days leading up to the weekend.

As we headed home on Sunday, I started to develop a fever, headache and nausea and by the time we reached home I could barely climb into bed.  I was semi-delirious and was having trouble understanding what was going on.  There seemed to be people coming in and out and apparently my face had blown up like a big red balloon, my eyes were slits and I could hardly form words to comminicate.  My fever had escalated to more than 103F and we just couldn't get it to stop or drop so I spent the night in a delirious state, in and out of sleep and feeling like I could die.  Yes, terminal patients have times when they feel like they could die and I think I was very close!

Dianne called the Palliative care team emergency line and was able to speak to a doctor who diagnosed an infection of some sort and prescribed antibiotics and a sub-cutaneous saline dip to re-hydrate me.  Nurses and equipment arrived and turned my bedroom into a hospital room.

My fever finally broke the next morning and, while i'm still feeling weak and very ill, the worst of it was over for the time-being.  Later that day, my doctor came to visit and advised us that I had Sepsis which was a real shock because that is one serious disease.  He said if they couldn't get it under control and I was in pain or had other serious symptoms, they would have called it a day!  Well, we told him we wanted honesty and he certainly was.

I encourage you to look Sepsis up on-line.  It has an average fatality rate of 40% and is  considered so serious that standard treatment is the Intensive Care Unit where they pump you through with IV antibiotics and fluids to try to stop the progression.  It's a blood disease with a high rate of recurrence.  It starts with an infection elsewhere, probably in the urinary tract in my case, and spreads from there throughout your system and can cause damage to all of your major organs.  If it's not caught and treated fast, you can die.  Unfortunately, the signs and symptoms are hard to read so luck plays a large part in diagnosing it IMHO.  My underlying disease - my cancer - and my highly compromised immune system are what makes me susceptible to begin with and means I have to be ultra vigilent to avoid getting any kind of infection from here on in.  Any signs will mean a trip to the ER.  As a side note, I take a drug called Haloperidol for nausea but that drug can mask the signs of infection and Sepsis so it's something to be aware of.

I've learned several new things so far through this experience.  I learned about a very real, very uncomfortable way to die that I wasn't aware of.  If that's the way I'm going to go, I'm not too happy about it, but perhaps they could give me something like morphine to make it easier.  This is the way the cancer gets you indirectly while you're cruising along under palliative care.  I've also learned that I can have times when I think I could die but won't.  They say you often know when you're going to die but circumstances can dictate differently.  I was so sick I could easily see myself saying, "Okay, make this stop!"  Some would, I'm sure.

The biggest lesson in this was that, even though I have a DNR, I would go to the hospital to have this treated, partly because it can (thereby prolonging my life) and partly because I'm just not ready yet.  I hadn't really thought through this completely so I need to do that.  And I had better get an idea of what and when I've done all I need to do to be able to say "Okay".  It's consistent with everything I talk about but maybe you need a crisis like my Sepsis attack to really make it real.

Something to think about.  A lot!

May 14, 2012

Random Thoughts About Dying

There really are days when I feel like I'm just sitting around waiting to die.  If I was more active - if I could be more active I should say - I might not feel this way.  But my physical condition limits me so much that I do a lot of sitting around.  I have to be very careful with physical activity due to the deterioration of the bones in my back and even when I do exert myself, I end up out of breath and have to hook myself up to the oxygen tank.  So I do sit around and I can't help but think about the time I have left and feel somewhat morose about the fact that I can't do more.

Thankfully, I can write and, thankfully I have you dear readers who find something informative and helpful in what I write.  That is truly a gift!  And I thank you for your side of the bargain.  So bear with me while I wander a bit today.  Maybe get a little repetitive.  Just to get a few things off my chest.

I really try to feel good each day, to keep a smile on my face - a stiff upper lip.  It's not that I'm pretending to be well.  In fact, when people tell me how good I look, I assure them that it's all on the outside.  The bad stuff is what's going on inside of me.   But I want to feel good and try to convince  myself that I am.  When I'm successful at it, I can almost feel like I'm into some kind of long-term remission, even though I know how unlikely that is with a growing, untreated cancer.  But I wonder if this is some kind of denial?  Wishful thinking?  An attempt to put a pretty face on a not-so-pretty situation?  Perhaps.  Does it make me feel better?  Maybe.  Sometimes.  But then it always comes back to something that reminds me just how sick I am and what my prognosis is.  So I may feel better in the short term but, over time, it wears on me and I start to feel worse about things.  It becomes harder and harder to feel good each and every day.  So maybe it's just not possible.  And it's ironic, but the more accepting I become of death and the fact that I am going to die, the more anxious I get about what is happening to me and perhaps it is that anxiety that gets in the way.  So a good part of my life now is avoiding anxiety producing situations.  The calmer I can make things, the better able I am to enjoy the day.

The other side of this coin is the guilt that I feel about not being able to be the constructive member of society (and, more importantly, my family) that I used to be.  I just can't do many of the common day-to-day things that I took for granted before (like cutting the grass, taking out the garbage, etc.), that made me feel normal.  I don't get up in the morning and go to work to earn a living any more.  Perhaps it's more understandable to think in terms of feeling useless rather than guilty.  Even though I know it's the cancer that's created this new situation and not me, I still feel a twisted sense of personal guilt that can turn a good day into a bad day.

And when I'm gone, how will I be remembered?  Will I be that morose guy who dropped out of life when he took medical leave?  Will I simply be Dianne's husband who passed away?  Or will I be rembered as someone who made the most of his situation, maybe not every day but overall?  I sure hope it's the latter, but who knows.  Maybe I won't even care once I've made the transition to the other side (whatever that might be) but I think it will matter to Dianne who has loved me for all that I am and who works so hard to make sure that I can be happy every day.  For ultimately, she is the one I care most about.  She is the one who will keep my memory alive longer and stronger than anyone. And she is the one, today, who needs me to be happy because it impacts her own happiness as well.  We are in this together, after all.

May 10, 2012

Getting Political

Writing a blog is a great way of getting out your personal opinions and calls to action about issues that are important to you. Many times, these issues are very personal and may pertain only to your limited situation. Other times, the issues are more macro in nature and need to see the light of day in the court of public opinion. I blog about death, something that is uncomfortable for many of us to see and hear in the open but which nontheless needs to be talked about for the many benefits we discuss here. But some times, we may need to get political.

Perhaps the most political issue in this area is that of access to palliative care and hospice services for the terminally ill. Olivia Chow MP, one of our most well-known politicians has a unique perspective on this.  While watching the community and the medical system rally arround for the birth of a grand-daughter, she also watched a similar rally around her husband (and leader of the New Democratic Party) Jack Layton as he died from his cancer.

Because Jack was able to take advantage of the palliative and hospice care options available in the community, his "...death was without pain, without trepidation and without fear. His family experienced no guilt and regret, and made decisions in full accordance with Jack’s will.  Jack was blessed with excellent palliative care and support. We had nurses to provide personal care and support at our home.  We had doctors to help control pain, to provide last minute instruction and let us know what to expect when the final hours arrive. We had listening ears to help comfort us and the rest of the family."

Jack and Olivia were lucky to be able to access this kind of care, as am I, but unfortunately, most Canadians do not take advantage of it.  They don't have the knowledge or power to be in control of the alternatives of care available to them.  Nor do they have the financial resources necessary to allow the end of life journey to be experienced at home - a safe place. 

Today, much of the palliative and hospice care is provided by volunteers and we are extremely thankful to them for all they do.  But it is time to make it part of the broader medical system to ensure it is made widely available to all of us, just like birthing services are.

Palliative care is incredibly important for the patient and for the entire family.  The fact is that palliative care can take financial and delivery stress off of the regular medical system.  It can be delivered alongside "standard" care.  It can improve overall quality of life for patients at end of life and those suffering with long-term chronic illness and in some cases can even extend life.  Unfortunately, these facts are not well known, but therein lies the opportunity and the challenge.

Change will not happen on its own. It will require a focused effort and a political will to change years of practice.  Maybe it's time for Olivia and other political leaders who "get it"  to give it the political focus it needs and advocate for changes to the system and the way it is funded or, at the very least, to increase awareness of the nature and importance of palliative care.  This blog is my small call to action in this regard and I'm starting to see more articles calling for change.  Let's hope the call gets louder and gets picked up by our politicians and in the mainstream press to give it the profile needed to start to see real change.

Personal Update

I hate sounding like a broken record, and perhaps I should only concentrate on significant changes to my health, but my fatigue is beginning to be overwhelming.  Short of pumping myself full of more steroids, there's really nothing much I can do about it.  I get up around noon most days and, by the time I've had my shower and dressed, I'm ready to go back to bed again.  Once I've been up for a while, whether I'm watching television or in a conversation or even typing, I start to doze off to the extent that I've become quite the conversation piece myself.  I certainly don't mind the odd chuckle at my expense - I think it's quite funny myself - but it is very disconcerting because sometimes I feel like I could just go to sleep and never wake up.

May 5, 2012

Day by Day

One day seems to blend into the next, each one characterized by a kind of deja vu that gives an undifferentiated feel to the whole thing.  This is my life now.  Waiting and wondering.  Wondering when I am going to die and waiting for the signs that will tell me it's getting close.  All the while maintaining a laser focus on making the most and best that each day can offer.  I don't plan or think much beyond today because I just can't.

I assess the day and try to figure out what there is about it that I can leverage to make it special.  I look at Dianne and try to see how she is doing today because whatever we do we do together.  We have been so lucky, since I've been on disability insurance (retired essentially for health reasons) to have been able to spend the most of a year and a half together.  I know that's not for everyone.  I know that many people would want to spend much of that time alone to do things for themselves, but that's not how we work.  Our togetherness defines who we are and we cannot make the most of a day without the other.  We're lucky we can do that.

Surely, it makes things difficult at times.  There is always two to please and individually, we each have our bad days.  So sometimes it's just a matter of finding a way to coast through the day.  To get through it and hope that the next day is better.  On average, it works out well and life is pretty good.   Like I say, we're pretty lucky.

The big issue I have is my extreme sensitivity to her.  If I didn't care so much about how she is feeling and what it will be like for her when I'm gone, I would be happier even when she was a little bit down.  But that's just the way it is and I know that and I accept it.  I am a very lucky man to have someone I love so much and who loves me enough to make me feel this way.  If we're together, I'm happy.  I wouldn't trade that for anything.

So what do I do with the day?  Visiting good friends is always a hightlight.  I crave human contact at times and appreciate all of the well wishers who want to see me.  I look forward to getting up to our friend's cottage and really appreciate their efforts to get me there.  I worry about this summer because I'm not as well as last year, but I'm going to give it the good old school try.  Sometimes just getting out to do a few errands is good for the soul, as long as we're together.  A coffee at Starbucks.  (Their non-fat green tea latte is particularly good.  And healthy for what it's worth!)  It doesn't take much.  But I wonder and wait and worry.

Personal Update

So tired.  In a nutshell that's it.  And frustrated.  I need to get some stuff done in the backyard this weekend and I can only watch and supervise and wish I could get my hands dirty.  I just can't risk breaking my back and the world of hurt and inconvenience that would bring to everyone.  I'm now on water pills to help with my breathing and, naturally, have to deal with the side effects of these.  One more balancing act.

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.

March 30, 2012

About John A.

John A. died at 7:15 am on Sunday, March 25. He died of advanced prostate cancer, the same disease that is fated to take my life as well. He was 61 years old and he was a good man.

I met John on the Internet as an active participant in a Yahoo group focused on our disease. I've met many men through these types of groups and there are those who are regular correspondents, those who have lots of questions, those who just lurk. And there are those who give answers and are the first ones there with important news of new drugs or treatments. They are the wise men of the Internet whose information and experience we value even more than the medical information we find elsewhere. Cancer is such a personal experience that we tend to relate more to what other individuals experience than what the "standard" or "normal" progression of a disease offers. Pain is a good example of this. We all experience pain, but how and where and how if affects us is very personal so it helps us to hear about how other patients experience it.

On this particular group, John A. was one of the most prolific contributors for many of the six years of his journey. He made sure we all knew what he was doing, what his research had found, and what worked and didn't work for him. Many men are indebted to him for this and so many of us called him our friend. I had several direct discussions with him and he was complimentary of the work I am doing and was, in fact, the one who suggested that I try oxygen, which has been very helpful to me. But it was his last few months that meant the most to me and several other men who are nearing the end.

John knew that he was going to die soon. His body was telling him loud and clear that his days were numbered to the extent that he felt comfortable giving a date. And while he outlived that date, he couldn't outlive what the cancer was doing to him and he died several weeks later. What he knew, though, was that all of us were wondering the same thing. When am I going to die and how is it going to happen? It is the great unanswered question for us and one which the medical profession seems loth or unable to address adequately. As morose as it may sound, we want to know the details. We want to know how our body will act and how it will signal to us that the end is near. So John took it upon himself to give us a detailed run down on exactly what was happening to him every couple of days. He listed his drugs and the changes that were made by his hospice team to address existing and new symptoms and side effects. He described in detail every strange thing that happened to him physically, mentally and emotionally. When something wasn't working, he talked about why he thought that was the case and what he wanted to do about it. And when he was not well enough to do it himself, his wife Jeanne took over and kept us up to date, finally describing his last night and last minutes with us. What a wonderful gift to us all.

I read the news of his death that evening and, while I knew it was coming, it caught me off guard and I found myself shedding tears for this man who I knew only through his words and his wisdom. I could barely make it through his wife's note as I read it aloud to Dianne. I had felt a strong connection to him. We were dying of the same disease and our symptoms were very similar. Although I felt that I had much more time left than he did, we were on the same trajectory so his death was, in a way, a milestone marker along my own path. Sometime, this will be me. It was very personal and I felt it in my gut. So did Dianne. As I read Jeanne's note to her, she could see herself in the same situation and it conjured up in her the same fears as I. We both cried, as much for ourselves as for John and his wife. It was a sad way to end our day and it has taken several more to really come to grips with it all.

But we have, as best we can, and I felt that it was important to recognize his contribution and share with you the impact he had on me. I stress always how important it is for us to talk about death in general and our own deaths in particular for so many reasons. We need to understand, we need to be prepared, we need to face death as we face life. And when we want to know how we are going to die, what a blessing it is to find someone who can talk openly about that too. Like John did. Like he did for me.

In my last note to him, I promised to look him up on the other side and I will keep that promise.

Personal Update

I am feeling much better these days. With my pain under control, I feel like I have a new lease on life. I am still challenged with side effects from the steroids that are helping with the pain, but I am concentrating on getting down to a level where I can also manage the side effects without bringing the pain crashing down about me again. My palliative doctor visited today and was very pleased with my progress since he first met me, when he thought I could have survived only weeks! It was a "yikes" moment for me but his optimism has made me feel so much better emotionally and it is that positive attitude that will help me to enjoy life now.

March 23, 2012

Death and courage.

I saw a movie the other day that made me think about death and the courage with which we face it. It was called "Act of Valor" and was about elite teams of Navy Seals and the incredible acts of heroism they undertake to protect our countries, their families, and each other. They fight terrorists, drug cartel armies and any number of heavily armed factions by putting themselves in "harms way". And as they say, these are special men and "damn few". To them, it is a way of life and, I daresay, a way of death for they are prepared to die and have consciously made the decision to die if necessary, whether from a bullet or from diving on a grenade in a crowded room.

Regardless of your views on war, I would hope that most of you would view these men as courageous when it comes to facing death. I do. In fact, for all my life, I've felt that there is no more "noble" way to die than while saving other lives. I memorized this little line from a book I read when I was around eight or ten that encapsulated this - "Greater love hath no man than this, but to lay down his life for his friends." I've never forgotten this. But for me, unless I get a chance to run into a burning bus, I'm not likely to die this way. I will die the death that's waiting for me thanks to my own rebellious prostate gland and I don't feel very courageous about it.

Should I though? People tell me how courageous I am because of the way I'm facing up to what is happening to me. Maybe it just seems that way. Maybe I appear strong and stoic when, in reality, I'm just as afraid of dying as the next guy. I don't want to die. I don't want to have pain. I don't want to be fighting for my final few breaths. This doesn't make me a coward, but it makes me normal, I think. Just because I have accepted my death and am dealing with it as directly as I can doesn't make me braver than someone who is more quietly accepting of their death. Maybe it's because we always talk about "battling" our terminal illnesses that is suggestive of a heroic fight to the death. Maybe that's where the idea of courage comes from.

My courage, whatever it is, must necessarily be in how I stand up to the symptoms of my disease progression - the pain and fatigue mostly, the effects and side effects of the medications I'm on, the emotional and psychological roller coaster that defines so much of my life. It's not easy and it's not something I chose to face, but face it I must and in that, I guess I do have a choice. Any of us could choose to just curl up and die. Or we could choose to rail loud and long against the injustice of it all. But I choose to stand up and face it each and every day and do everything I can to minimize the impact it has on my life. I choose to have a good life - what's left of it - and I choose to have a good death. But I don't think it's courageous. Not like those other guys. It just is.

Personal Update

Continuing to deal with side effects of steroids mainly. The problem is that it is helping with the pain so it is a difficult question of tradeoffs. Wish me luck. I'm just so tired but the steroids are preventing me from getting the sleep I need.

March 18, 2012

Pain, Pain, Pain

This is a somewhat different post today as I have a specific audience!  About a year ago, I was privileged to participate on a pain panel during Pain Week at the University of Toronto.  I was invited again this year, but as my health deteriorates, I really can't participate in the same way so we decided to do it differently.  I have several questions to address and the students will be introduced to this blog for the answers.  What a great idea!  I do hope the students find both my answers and my blog of interest as they pursue their various medical careers and also hope my regular readers find it interesting.  Consider it an in-depth Personal Update.  Here we go.
 
Question 1: “Can you please briefly tell us where your current pain is and what it feels like?”
 

I have Advanced Metastatic Prostate Cancer which has spread to my bones.  It is most extensive in my sacrum, where it has spread throughout the bone and the Sacral vertebrae, extending into the pelvis as well.  Further up my spine, I have lesions on my Lumbar and Thoracic vertebrae, my ribs on both sides, my shoulder and even one on my skull.  The most intense pain is in my lower back, sacrum and pelvis area which makes it very difficult to sit in most types of furniture.  The pain comes and goes and is worse when I'm out and about and causing movement.  It is particularly acute in the left sacroiliac joint.  A few weeks ago, I had a severe attack of pain which my medications couldn't touch such that I was throwing up from the pain.  I ended up in the emergency department as my doctor thought I might have broken my back and damaged the spinal column.  Thankfully this wasn't the case, but I had an MRI that showed the extensiveness of the spread and provided some insight on why I have the pain where I do. 
 
Question 2: “What is the most difficult issue for you related to this pain?”
 
The most difficult issue I face is the fact that my disease is terminal and I have been given a limited time to live.  The cancer has spread extensively in my system already and continues to do so.  My pain, and the tremendous fatigue that accompanies it, are constant reminders that I am going to die a long time before I should.  Since I can't work anymore, I have a lot of time to think about this and my life has resolved around trying to make the most of the time I have left while I prepare for the inevitable.  It's tough!  It has also had a significant impact on my day-to-day life as I make do with special chairs and cushions so that I can sit for extended periods of time and use canes and walkers to provide stability when I'm on the move. 
 
Question 3: “ What has helped most with your pain?”

I have been very pleased with the approach to pain management that I have experienced over the past almost 5 years dealing with metastatic pain.  For most of that time, I have been under the direct care of the Pain Clinic at Princess Margaret Hospital where we have been able to try one medication after the other in search of something that controls the pain without debilitating side effects.  This is particularly important to me as I have an extreme sensitivity to most medications and I have needed the regular monitoring that the clinic provides.
 
More recently, I have transferred to a Palliative Care program, given my terminal prognosis.  The focus of this program is very much on trying to get me on an even keel with minimum discomfort until the end.  To do this, the team (doctors, nurses and other health professionals) employ a broad range of strategies including aggressive and innovative use of any medications available to find something that works for the individual.  Over the past couple of weeks we have, in fact, found a drug combination that has my pain under control for the first time in almost five years!  I am ecstatic about this, however it has come at a price as I now have to deal with significant side effects including disrupted sleep patterns (which is rough given my fatigue levels), painful skin rashes, thrush mouth and leg cramps.  But we're working on this now.  It's part of the program and I am thrilled at the degree of individual attention I am receiving from an exceptionally caring palliative care team.
 
Do you have a message for students about improving pain management? 
  
The main message for students is that you need to approach pain management from a very personal point of view.  My experience has taught me that the perception of pain is very specific to the individual and there is no "standard pain experience".  For example, some bone metastases can hurt one person but not another and some individual lesions can hurt while others on the same bone don't.  There's no obvious reason for this - it just is.  The only important fact for you to know is that it hurts and needs to be treated.  Also, there is no "standard" response to specific pain medications beyond the fact that they treat pain.  So some medications will work better for some people than others and some very unusual combinations of medications work amazingly well.  You have to be willing and able to experiment and learn.  But do it in partnership with your patient.  No one knows their pain or their response better.
 

Well, that's it for now.  I hope the students have found this useful and I thank my loyal readers for allowing me to piggyback on my regular topic.  My pain has and continues to be a significant part of my journey and I know I'm not finished with it yet.

If you are interested in my continuing story, you can follow me directly at dyingdigitally.com as well as on Facebook (Doug Gosling) and via Twitter (@douggosling).
 

March 12, 2012

Vacuums

There is a vacuum left when someone dies. I was thinking about this when Whitney Houston died. We really notice it with celebrities because it's all over the news and, suddenly, that famous anchor or actor or musician is no longer part of our extended lives. It's so noticeable because we are used to having them there. And of course even you and I leave a vacuum around our more sheltered lives that is just as palpable to those who love us. Celebrities have it at both levels. I miss my mommy but so does half the world.

How to we fill that gap? The news media handles the celebrities for us by overloading the airwaves with remembarances and trivia, while we process our personal vacuums with memories, funerals, wakes, celebrations of life and in the private moments behind our own veil of tears. It's the circle of life and something we all experience to various degrees.

This activity can continue for some time, commensurate with the importance of the person to us, how wound into our lives they are at the time of their death, how dependant we are upon them ... many factors. It will take as long as it does and will vary for each of us. For some, it will be a milestone event which will pass through time. For others, it will be unbearable, unmeasureable and will last seemingly forever. And there are all the in-betweens.

But life must go on for those who are still here. We have real lives to live, roles to play, things to do. We are put here to live, after all, and we can't stop living because someone we love has ended their time with us. But we can't forget either. We just have to find a way to coexist with the memories and with the might-have-beens. As hard as it is, we have to move forward. That doesn't mean moving on, because that implies a kind of brushing aside, but simply moving.

I think about this a lot because, while I am on the verge of new adventure, Dianne, my daughter, my family will all have to move forward without me and I feel so damn guilty sometimes. I know it's not my fault - it's the cancer - but I can't help it. I'm trying to do what little I can to help, such as leave-behind videos, encouraging advice, but it won't be enough to stave off the darkness when it comes. They will all have to define their new relationship with me and my memory. Thankfully, the world and the Universe provides. Life can be rich and we have the power and the ability to choose how we want to take advantage of the diversity it offers. We can choose the roles we play, including changes to who we are and how we are. Perhaps it gives us an opportunity to review our own mortality and to make changes we should have made a long time ago. I know of many people who have turned the loss of a close loved one - a spouse or a child - into a life of volunteer work, helping others through similar loss. It's not for everyone, but it shows you that you can do things that help you while helping others. Or maybe it's just a chance to slow down and enjoy life. But, then again, it might actually be necessary to become more active rather than less in order to fill the days, in order to not let the sense of loss overcome you.

Life is about change. We start off as children and live such different experiences through all the years of childhood, through adolescence and young adulthood, through our thirties and middle ages and into our "golden years" (if we're lucky) and each phase offers such a wonderful richness of experience. And death is just part of all that. Another change that will happen to us all. So we need to recognize it as just another part of life and accept it when it comes prematurely to someone we love. It's easy to say. I know it's not easy to do.

Personal Update

Side effects. That's what is occupying me these days. The steroids that I'm taking to help with pain control (which are working, thankfully) have turned my mouth raw, my skin ultra-sensitive and are interfering with my sleep. So we're trying to find some balance in all of this. I hope there is one. Nothing is simple.

March 7, 2012

Not just waiting around

When I wrote recently that I was ready now, I think I might have left the impression that this was was it - everything had been done and I was on my way. Talking about changes to my body may have colored that a bit too. However, that's not the case so much. I wanted to let you know that I had things "in place" so that everything went smoothly when the time did come. But until then, I don't plan on just waiting around. I have lots to do (videos, blogs, see some movies - lots of things) and intend to fill my time as best I can doing things I love with the people I love. This is the best way to spend my time and the most important legacy I have left to give.

So when will I die? It always seems to come down to that question. The fact is, I don't know that and may not until closer to the end. I just read a book called Final Gifts written by a couple of hospice nurses who suggest that many terminal patients know when they are going, among other fascinating things they experience. I can see that. In fact, I have a good friend who senses a strong spirit or angel around me that suggests, if I'm not close, at least I'm ready and in good hands. Rather than scare me, this actually lends me great peace and solace. As I've suggested before, the idea that there is "something next" allows me to stop worrying and enjoy the time I do have left.

But, ultimately, it will be the sum total of how I feel that tells me I'm dying and that will tell me when I'm close. In fact,I thought I might be close after the wedding (Dianne did as well). I couldn't wake up. I felt great emotionally but, physically, I honestly thought that I might just never wake up. The fact that it lasted several days compounded this feeling but I hung on to the idea that my body was recovering from the tremendous effort of participating as if I wasn't ill coupled with an exceedingly bad pain attack and trip to emergency. It seems that I was right and I'm happy to be here continuing to write. The last shoe hasn't dropped yet on the pain attack, but that's another story.

So I'm definitely not just waiting around to die. I'm writing, I'm working on visiting with friends which will be very good for me. I'm actively participating in hospice activities and in my care. Dianne and I are spending quality time together. I'm doing videos for my family and generally cleaning up paperwork and the ongoing clutter of a life lived well enough. Above all, I do feel that I'm making a difference in what has now become a profession of sorts - a full time blogger on the subject of death and dying - educating others on what it's like to die and what it might all mean. I want to be informative to those in palliative and hospice care so they can better understand the mindsets of their charges. I want others who are dying to see themselves and help their loved ones to see them in a more open light. Judging from the comments and emails I receive, I really am having some success in these areas and I'm very proud of that.

I really want people to open up about dying. Talk about it. Think about how the idea of mortality has shaped your life. Talk with your family about how you would want to die so, if and when the time comes, they know what to do with you. It's not much different than having a will, with the satisfaction that can bring, but is more personal.

We never really know how much time we have left, so don't leave it too long. Write your own story before its too late.
 

Personal Update


Starting to get side effects from my new pain meds and from the meds that address their side effects. My skin is starting to feel raw and my anxiety level is rising. But maybe it's from the cancer, in part. Need to talk to my doctor.

March 3, 2012

Musings

I wrote this a while back in a small notebook I often carry around for the purpose, and thought I would share it with you. Just some musings on life and what's important....

Our memories are no different than what is written in history books.  They are a "recording" of something that happened.  Our recollections may even be different from someone else's recollection of the same event, but they are still just recordings of something that may have happened.  They're gone now, so they don't have the "substance" of the here and now.  So, in a sense, the future is also the same thing.  Something will happen, but it has no substance in the here and now.  Even fictional stories (books, movies, etc.) are similar in that they document an event with no real substance.  So what does this mean?  It means that the only thing that matters, that has substance and reality, is what you are doing right now. The past, the future and your favorite movie are not important.  You can't act on them, interact with them or "do" them.  All that is important is now - what you are doing and who you may be doing it with or to.  Isn't it worth doing something meaningful?
 
We cannot change our past.  We cannot change our future.  We cannot change the fact that we are going to die and, once we die, we are no longer a part of this reality.  In a 100 years, no one will be alive who knew us or ever interacted with us.  We are gone like every human being who ever lived is gone.  Nothing we have done, with few exceptions, makes a significant difference to the future reality.  So if you want to know what the purpose of life is, it is just about living every moment for all it's worth, focusing on the tiny microcosm of time and existence that you have and that you share with others.  That's it.  Make the most of it.  Make the very best of it.  And have no regrets.  While this may sound like a cliché, it is.  Sometimes a cliché is just a very simple truth.

Personal Update

Tried to stay up some more the last couple of days - trying to have a bit of a life. Got some things done which made me feel good, but paying for it now with fatique. Some pain back too. Oh well.

February 29, 2012

I guess I'm ready now!

My fingers are getting thin! What a wierd thing to notice. I was rubbing my hands together just the other day and noticed that, when I put my fingers together, they were not as thick as they once were when I was busy with my hands, when I played guitar. It's a sign. It's yet another very concrete example that my body is .... less than it was. I know that I have lost muscle, fat and tone and, while Dianne keeps my weight up by pushing food on me, things have redisributed. I'm not the man I once was. I'm dying. I'm watching myself die, slowly but surely. Wow!

It's not that this is my first realization of this. It seems I've been ready for this for a long time, but I am definitely more prepared now and I wanted to talk about this with you to share what it's like waiting. My last several posts were more spiritual in nature, and I hope they were meaningful to some or most of my readers, so this will be a bit of a change of pace.

From a medical point of view, I am definitely on a different track than I was for the previous nine years or so. Tests, results, treatments, surgeries, side effects, doctor visits, psychologists, oncologyists, orthopedic surgeons, radiation technologists, on and on. That has been my life for so long that I have been truly a child (or captive, perhaps) of our medical system. But that's more or less over now and I'm not sad to see it go. In some ways it was a positive thing because I was fighting the disease as best I could. But my body wouldn't cooperate, my warranty period was expiring, and there was nothing more that could be done to cure me or to slow things down more than I had been able to. That's when I made the decision to discontinue treatment, yet continue to "fight" for quality of life and for a "good death". But then I found that I had to prepare for that too. There were plans to be made, things to do, affairs to wrap up, steps to get in place. Thankfully, Dianne is great at that sort of thing and threw herself into it with gusto!

So here's where I am. I am now under the care of the Dorothy Ley Hospice program and the Toronto Grace Palliative Doctors program, with extensive assistance from local community resources through CCAC and other organizations. How wonderful it is to be in a place where this support is available and free. As it takes a lot of pressure off the medical system as well, it's a good thing all the way around. I have a nurse who comes in and sees me every day, checks my vitals, my meds, etc. My new palliative doctor will drop by every couple of weeks to monitor me and see where I stand. This is critical to me as I will need help identifying the signs that indicate "it's time". My doctor already spent two hours getting to know me and my family and my wishes, in my own home! How great is that? I also have a palliative nurse practioner I can contact as needed. I have an emergency number for the doctors which means I can see one right away if necessary. I don't need to be rushing to emergency rooms if I have an attack of something, which is a great relief. As many know, it is not pleasant waiting for hours in an emergency department before anything is really done. No more.

I am also set up now for when the time is right, to enter the Hospice residential program. While I want to be at home as long as possible, I don't really want to die in the house. I don't want my family to walk by a room thinking, "This is where it happened". So, if all goes well, I would prefer to pass at the Hospice and we're as set up as best we can for that. The Toronto Grace also has a couple of beds that they keep available in case things change too fast. More back-up and support. And I have equipment to help at home. A hospital bed in the dining room for when I'm just too tired to get upstairs. Walkers and poles to help with stability. An oxygen generator for sleeping and portable oxygen bottles which really help when I'm out somewhere and need something to keep me going (other than Red Bull!).

I also have a DNR - a "Do Not Resuscitate" order that tells health care and emergency workers that I do not want my life to be artifically prolonged through CPR, entubation or anything like that. I'm dying and I don't need anyone to pursue heroic efforts to keep me going so I can die again later. It makes no sense, particuarly if I end up with broken ribs or on a ventilator. I can't think of much worse than that. Having that piece of paper gives me more peace than I had ever thought.

So I feel really good about all this. I'm ready. We all know what to do and I know that Dianne will execute like the tough executive she is! And I know that it will be good for her to have these things to do, to keep her busy in those first few days and hours. We're good to go!

But that's the procedural side of things. There are still all of the emotional things I have to deal with. But having this all in place gives me time and license to do these things. For now, it's about acceptance. Clearly, I have accepted that I'm dying, that I'm going to die. Dianne and I have talked a lot about this and we're both very aware of this. And I'm also accepting of the fact that are simply things I will never get to do anymore. No more kayaking, no more lofty goals. But will I get to our friends cottage again this coming summer? Will I even be around that long? These are things I just don't know. That's my next challenge.

Will I know when it's time?

Personal Update

Not much changed from my last post. I'm doing pretty good. Just the fatigue. I sound like a broken record, but I'm so tired all the time and find it so incredibly frustrating.

February 27, 2012

My Universe, My Home

So here we are. I promised that, after reading some more and thinking seriously about it, I would let you know where I have landed. For now. How do I view the universe today and what to I think it means for what comes next. I have been alluding to it over the past few posts as I explored and considered and I am now at a place where I feel comfortable. At least as comfortable as I can under the circumstances.

What is the universe to me? It is everything and we are all part of it. It is us, we are it. We all come from the energy of the universe and we all return to it in some way. That's a pretty good start because it means to me that there is no end to our existence in some form.
Having said this, there is the question of where did it all begin. This is important, because if you believe the Big Bang started it all, then what existed before that? Nothing? Well, isn't nothing something if you are attaching timelines. Or if you believe that God started it all, then where did God come from and what existed before Him? That's my biggest problem with the idea of a master creator. All I can think is that the universe must be eternal. It must have always been as it always will, possiby changing, starting and stopping. Maybe there have been many big bangs. Maybe there are multiple universes that exist within he larger multiverse as has been hypothesized (I don't make this stuff up!). But I can accept this. I can't explain it or prove it, but I can accept an eternal universe with no beginning or end to time or space. If I do this, then I don't have problems with grand design or with gods. There could be a master plan or it could all be random. The only thing that isn't random, that can't be random, is that it exists. If it all just winked out when we die, what would be the use. As wonderful as this life has been most of the time, it can't be all there is. So in my mind, there has to be more. But what?

Well, I know that I can't really know what's ultimately "out there". None of us can until we're there and, if we could come back, it seems we can't call up the news and give them the scoop. We have no choice but to accept this and deal with it, so that's what I'll do. But it also seems that we can get a glimpse of what's to come through Near Death Experiences (NDEs) as I discussed in my last post. As I said, there is enough evidence FOR ME to believe that there is a transitory stage where many things happen, where the lights don't go out. Maybe I will see my dad or my mom as I hope. Maybe I'll meet Jesus or even God on the other side. I can't discount any of those possibilities any more than I can tell you what is there so I expect to be pleasantly surprised. That's a lot better than laying there, afraid of the lights going out. Afraid it's just all over.

But ultimately, it is all still a mystery. A wonderful mystery. And perhaps that's how it should be.

Personal Update

It's been a rough week in some ways and a good week in others. Since my trip to the emergency department, it seems we have found a "pain cocktail" that works so my pain is under control for the first time in over four years! But tired! It took me most of the week to get any kind of energy level back and even that requires the use of portable oxygen. But I'll take what I can. As long as I can read and write, for now I'm happy. The wedding was wonderful and was a huge milestone for me. But I have lots left to do. Miles to go before I sleep and all of that.

Many thanks for all the good wishes and kind comments. They mean a lot!

February 20, 2012

NDEs and Me

As I've mentioned previously, my search for "what awaits me" has included reading about Near Death Experiences, or NDEs. I have found this very useful so I thought I would summarize what I've found and what it means to me.

NDEs are as they say, the experiences of people who have died, presumably seen an image or vision of "the other side" but survived to be able tell their story. The most interesting aspects of all of this to me, is that there are tens of thousands of these stories that have been studied, many "deaths" have been scientifically verified (ie. they meet the legal definition of "being dead"), and there is an incredibly consistency about what they saw. Lets talk about these common elements and what they say or mean to me.

First of all there seems to be a complete cessation of pain and discomfort and a corresponding feeling of very positive energy. This appeals to me greatly as I anticipate less-than-comfortable final days. This seems to be the first separation from the physical body and is either followed by the experience of watching your old body as people are working on it, or immediately beginning a journey to a light, often through a tunnel. Sometimes they are met by a "shining being" or dead relative who seems to be there to guide them through the transition.

While there have been all sorts of reasons given for the tunnel effect (birth canal, etc.), it doesn't seem to be that important except as a transitional step. Meeting a relative or other being who is there to guide you, however, is very appealing to me as well. Given the shock and surprize of "crossing over" it is comforting to think that you won't be left alone to figure out where the heck you are! For some reason, I expect it will be my father, if anyone, who will greet me, perhaps because of the connection I had with him when he passed 4 years ago. I suppose it could also be my mother with whom I had a special bonding experience as she passed last September. Either way, I would love it to be one of them!

While there are many variations in what happens next, including meeting with other beings, other long-dead relatives, etc. it appears that you go through some sort of life review. Kind of like watching your life fly before your eyes. It seems to be happening all at once so you experience everything that you've ever done and everything that has ever happened to you. Sometimes there seems to be some testing going on to see if you're ready, although they already seem to know the answer, and it is at this point where someone tells you that you have to go back. Sometimes you want to go back and sometimes you might not, but it seems you have no real choice in the matter. It's interesting to note that the need to go back is because someone needs you, which would seem to be somewhat self-initiated, but often it is because you are not "ready". This is what many people believe and is consistent with some Bhuddist thought, that we keep going back (through reincarnation and presumably NDE if something else happens that wasn't "planned") until we are ready or have reached some level of perfection, or whatever. You might think that I would want to "go back" at this point if it were to happen to me, but I really don't expect that to happen with a deteriorating disease, nor to I think I would want to return to the quality of life of my dying day. Enough is enough!

It appears that most people who have experienced an NDE come back changed, with a much better view on life, new attitudes, and new behaviours... all good. I like the sound of that and, to all those who have experienced NDEs, welcome back. I don't think I'm going to get that chance but these experiences shed some important light on what may come next. While NDE's vary in length of time and seemingly in depth, they can't go all the way (by definition) so we really don't know what is ultimately out there. But it's enough to know, or think, that there is at least a transitional "place" or "space" where the lights don't go out. If this were a few isolated cases, I would be more likely to remain skeptical and perhaps except other explanations, however we're talking about thousands and thousands of cases with incredible levels of commonality and some very convincing corroboration.

So I think I'm going to go with that at least. It's something. It can't really be proved one way or the other, but that is what is so good about this analsys. I only need to believe it to be a real possibility that is better than the alternative. It's a positive thing, a hopeful "belief", and it's something I can live with. And die with.

Personal Update

I've had a rough week with tests for potential blood clots in my legs and a severe attack of pain and nausea which resulted in a trip to Emergency. My palliative team felt that this attack, which wasn't even touched by my regular and breakthrough pain meds, might be a symptom of a major nerve compression, common with advanced prostate cancer, and potentially leading to paralysis. Pretty scary. Thankfully, it wasn't that but it was serious enough to pump up my pain meds with steroids and anti-inflammatories. As a result, my pain is under much better control, although we have to find something sustainable. Dianne has been great, getting me a lot of help from our team and the services available to us. She's keeping me going now. Have received a new hospital bed and a home oxygen supply over the past few days at her urging. I even used some portable oxygen at my daughter's wedding which really helped me get through the night.

Regardless of everything else, my little girl is married, I walked her down the aisle, I danced with her, and I'm a happy, happy man!

February 13, 2012

Musing on Life after Death

This post will be a little more disjointed as I bounce around a bit discussing different views of life and life after death. There are lots of different views but some commonalities..

Up to this point, I've talked about a belief system where we all become part of the greater spiritual universe with some question as to whether or not we keep some sense of self or lose that. Knowing which way would help, I think. In either case, there is a question as to whether or not there is any "direction" that we operate under when we're on earth. I guess another way of looking at this is to ask if there is any divine intervention or some form of higher power controlling what we do.

If this is the case, then we need to wonder what purpose we have on earth. Are there plans for each of us? Most chrisians do. Dianne believes, much like the Bhuddists, that we keep coming back until we have developed or learned enough. She thinks that my time is up, perhaps because I needed to help others through my writing (books, blogs) and speaking. It's an interesting concept but it feels strange to think that my death is required to fulfill my destiny. But she might be right! She just feels she has more yet to learn.

I have read a lot about how we are all made of energy and that we take a form determined by the frequency of vibration of that energy relative to how other forms of energy or matter vibrate. One of the implications of this is that similar vibrations tend to attract - hence, the law of attraction we've all heard so much about. Another potential implication is that we just change the frequency of vibration of our essence or soul when we die such that we leave our physical bodies behind and leave the plane of existence within which we exist. This is appealing because it suggests that we - the essence of "me", our souls - continue to exist on some different level or plane which, if we believe those who have had near-death experiences, is a lot nicer and is populated with all those who have died before us. I'll talk about this some more in my next post.

But what is really on my mind these days when I wonder what will happen to me, is what will happen to Dianne and our relationship. Dianne is terrified to be left alone and I am horrified that I am doing this to her. While we both know it's the cancer - it's certainly nothing either of us wanted - that's not enough to make us feel okay about it. I want to be there for her and I've promised to be there in whatever form and whatever way I can. Since I do believe that some of our immortality comes from how we have impacted others through our interactions, I know that part of me is already firmly attached to her own essence. She is different now because of her time with me and we are both better for it.

Good vibrations. The Beach Boys had it right!

Personal Update

I've had a couple of very bad weeks. My health is deteriorating noticeably now, month over month. I had always hoped that I would be reasonably healthy until close to the end, but now I fear that it will be more gradual. And that scares me. I fear the increasing pain and nausea and am frustrated by the fatigue that allows me few productive hours a day. And my time also feels limited. I feel like I don't have enough time to get done all I need to get done. As someone told me today, I just need to take it a day at a time and work through it. That's all I can do.

We have moved up the wedding, which is happening this weekend, and I'm very happy about that. Even so, we are making many accommodations for me and I can't guarantee that I can stay alert the whole day. But I'll do my best. This is too important for me and for my daughter. We're still going to have the big wedding in August, but we need to do this because I may not be around or well enough by then. We all hope I am, but we're taking no chances.
Doug

February 7, 2012

More thoughts on life after death.

None of us has much in the way of personal experience to go by when thinking about what comes after death. Unless you've had a Near Death Experience or unless you have had something else happen to you, what do you rely on? I spoke with someone recently who reported experiencing a strong smell - a clean smell of her father some time after he had died and been removed from the home. It's an amazing experience which she shared with her mother and which meant a lot to them. But what can that tell us? It made them feel that they had somehow made a connection with a loved one who had "crossed over".

As for me, I "saw" a vision of my father shortly after he died. I was, in fact, laying in his old bed looking up at the ceiling when I saw a smokey image of my dad thanking me for coming.  I can picture it to this day. Whether it was something my mind put together in the form of an image, it was as real to me as the chair I'm sitting in. Whatever it was, I felt that it was a very real connection with my father, almost a day after he passed.

So I try to put this all together in the context of what I believe in or what I am learning to believe.  I believe we are all created from energy and that this energy vibrates at different frequencies (Why do I believe this? Why not?). Clearly, there would be a substantial attraction between energies that resonate at the same frequency. We see this in real life as we find ourselves attracted to some people (spouses, lovers, friends) more so than others. If you follow this line of thinking, then the "soul" or "essence" of a person would have a pretty strong vibrational attraction to their earthly body and this attraction would likely take days to pull apart completely. Even the Buddhists believe that the soul remains with the body for several days. I saw my father. My friend smelled her father and both of us derived peace from the connection. Whether it's a vision, a dream or even a smell there would seem to be some kind of purposeful communication from our loved ones who have passed on.

This, of course, is intrinsically tied to a belief in an afterlife. If the alternative is "lights out"..... nothing..... then I choose to believe in an afterlife. I just don't know what form it takes exactly. Yet.

But this belief is intrinsic to who we are. I think, deep down inside, we all believe that there is something "after". It helps us to live and enjoy our lives on earth and to not feel like we are wasting our time so often. There are atheists and humanists who don't believe in life after death but I can't help but think there is something missing from their lives. They probably wouldn't agree, but I couldn't do it. Here are some other aspects of the Universe that I "believe".

The larger, Spiritual Universe is like an ocean full of currents and eddies with energy forms constantly floating, drifting, touching, sharing, dispersing, and combining in infinite variations. When we die, our own spirit melts into that ocean and we become part of it again in a different way. We bring with us the sum total of all of our experiences in our earthly bodies, experiences of the body, experiences of the mind, the result of interactions with other energy forms or people. We bring our fears, our happiness, our anger, our love... everything that made us who we are. In this way, we contribute back to the Universe in a small way or a big way, depending on what we've been through.

I also believe that striving for good, living life, and experiencing all that life has to offer develops the soul - the personal and the broader spiritual - in a good way and, incidentally, defines a life of worth. Striving for evil and for material things has the opposite effect and, in effect, devalues our lives and the contribution we can make.

If you think about this - if you bring yourself to believe this, there are two kinds of immortality. We are immortal in the sense that the enlightened/experienced energy of our existence feeds back and adds value to the greater spiritual universe. That is true immortality. But we also derive immortality back on the earthly plane if we have truly lived a life of worth and, in so doing, have contributed to make life on earth a better thing.

Do you see how all of this ties neatly together? You can choose to believe one simple thing and it branches naturally into a broader belief system. And as I've said many times, It doesn't have to be provable for me to believe in. In fact, we can choose to believe something that is unprovable precisely because it is! Ideas like eternity and infinity may be expressible mathematically, but that doesn't prove anything to me or many others yet they are acceptable root beliefs for all of us.

And as I've also said before, I don't care what you believe and I don't care if you don't accept my beliefs. The beliefs you choose are very personal. They are entirely up to you and they are only meaningful to you. I am sharing mine essentially as they are developing to show you how important and how personal they are. If it gets you thinking about your own belief system, then I'm very happy. I'm beginning to realize that everyone needs something to believe in. I'll have to think about that some more!

PERSONAL UPDATE

Things have not been going well for me lately. The last few days - almost a week - have been incredibly bad. It began with waking up to an horrendous pain in my right shoulder, resulting in having to ask my daughter to take me to the hospital and a final determination that it was an existing metastasis which had grown enough to start causing me noticeable pain. I have had to increase my pain meds to manage this extra pain and now I am dealing with an order of magnitude increase in fatigue. I can hardly keep awake anymore (no matter how many Red Bulls I have) and, when I am awake, I find myself forgetting more and more. I hate it! I hate it! It is so frustrating and it makes me worry about how much longer I will have with a reasonable degree of productivity. It's a real concern. In the meantime, I'll keep writing.

To my new readers on Facebook, welcome!
Doug

January 28, 2012

What happens when we die?

I lay in bed at night watching my wife sleep. As tired as I am, my mind churns over unanswerable questions. It fights the darkness of sleep that robs me of valuable time left. I could physically sleep all day, but my mind wants me awake to enjoy every minute. Dianne sleeps the sleep of the caregiver. Exhausted, afraid, worried about me and worried about what will become of her without me. We are as close as two people can be and I want to be with her every minute. I look at her all the time. Sometimes it spooks her. I wonder if I will ever see her again after I die. This is the most tangible aspect of the question of life after death for me, but the answer to that lies within the answer to the broader question.

As I've described before, I have chosen to believe that we are a part of the greater Spiritual Universe and, when we die, we rejoin it in some way. But in what way? Certainly we don't just rejoin a blob of nothing. The lights just can't go out, can they? There must be something more. In the same way that I choose not to believe we are the only intelligent species in this unknowably huge cosmos, I choose not to believe that our exceptionally short time in this physical embodiment is all there is in the infinite river of time. Like I say, I can't prove any of this, but I find it reasonable and comfortable to accept this viewpoint.

Up to now, this has been sufficient for me because my actual death was far enough away that I didn't have to worry about it as much. But now that it is uncomfortably close (even with all the uncertainties) I need to know more. I need to have some idea of what is waiting for me. I don't want to be laying on my death bed, scared senseless that the lights are going out. If they did, I wouldn't even know it, but that doesn't matter. That's rational thinking and there is no place for rational thought on the death bed. I need a belief. I need something.

Now I have already said that I can't believe in the classic view of the afterlife proposed with such certainty by the formal religions. Whether it's pearly gates and angels or twenty virgins, the certainty alone makes them suspect. I don't believe things just because they were written down many years ago by mortal men who were still alive. I have much respect for people who do believe in the literal interpretation of these texts, but I choose not to.

So what happens when we die? Whether we retain some degree of individual identity or become some part of an amorphous existence, the real question - the important question - is whether we retain any sense of our individuality and/or our former existence on earth. If we reincarnate back and forth, as some believe (including Buddhists), do we retain memories of all of our previous lives? Will I remember Dianne and my life with her or not? I realize there are many questions here, but I have no answers for any of them. I will say this, though.... if I am reincarnated, I will not worry too much about who or what I come back as. Not now. There is no possible answer to this that I would find comforting or more feasible than any other. Maybe it's just me, but I am most concerned about the moments of existence (if any) after death rather than the moments after that existence. Does this make any sense? If I were to simplify things, I suppose I just want to know that there is more than nothing when my life here is over. That's all. Is that too much to ask for? Yeah, well, I guess so.

I have already received some help in this. There are many people who have had near-death experiences (NDEs) who have related events that happened to them after they have presumably died and before they returned to life. I have met some of these people. I have read some of Elizabeth Kubler-Ross' writings on this and I have been loaned many books on the subject which I intend to read. Over the next few weeks and months, perhaps these will give me some ideas which I will share with you. In the meantime, here are some initial thoughts to kick things off.

Some people with NDEs recount an afterlife that looks exactly like the visions of heaven that are taught in the christian bible. When I hear about these, I think of dreams and how they are fictions formed by extracting memories and images stored in our brains. Anything we have "seen" in a dream, we have seen in real life, have visually imagined, or have possibly even seen on television or the movies. So someone who has been brought up with visions of heaven reinforced time and again by parents or preachers or teachers could very well have a dream-like vision in that gray area between life and real death. If every NDE was the same, I would be more likely to accept it, but that is not the case. But there does seem to be some similarity in NDEs amongst many other people, so perhaps there is something in that.

I think I will stop here for now and read some and let my mind mull over what I've heard to date. If you wish to share any of your own thoughts, you can provide a comment or you can email me directly. Just please don't be offended. We are all entitled to our own beliefs. Right?


PERSONAL UPDATE

I have not been doing that well lately. I don't think there is a time when I really feel good. If I'm not sleeping or ready to fall asleep sitting up, I feel ill and often very anxious. I'm trying some new meds to help with this, but they haven't helped much as of yet. I probably have around 5 or 6 "good" hours during the day when I'm not sleeping yet still feeling "crummy", however you want to interpret that word. I think this is mostly the cancer advancing but I don't know still how fast this will happen or how long I will have. I can only go by how I feel and I feel worse now than a month or so ago. I'll keep you posted.
Doug

January 23, 2012

Who am I and what the heck am I doing here?

As I said in my last post, I choose not to believe in any particular religious dogma or theism. I also don't want to classify myself as an Athiest or a Humanist either because I don't like the idea that, after we die, there is just....... nothing. I really need to figure out something comfortable to believe in. You might think that this demeans the power of faith however, in the absence of the possibility of proof, a comfortable belief is as valid as any. To be honest, if I weren't dying, I probably wouldn't worry about it at all. But I am.

I am a good person, I have lived a good life, and that should be enough of a religion for living. But I am concerned whether how I live my life effects what will happen when I die. So I have to ask, "What the heck am I doing here and what the heck am I supposed to be doing while I am here?" Sometimes I wonder, If we're just here for a short time and there's nothing afterward, then why bother doing anything at all? In a hundred years, nobody will remember me anyway. But what if there is a heaven? Now there's something to think about! Maybe it is important to have a sense of why we are here and how our lives effect our afterlife. The "formal" religions use their religious beliefs and dogma to answer those questions for us but I think this often borders on the disingenuous. They claim to know with certainty why they are here and where they are going when they die. And they should be very happy to die, I would think.

As I've said, I personally don't believe in the Christian view of God, nor do I believe that there is a master plan of any kind. If there is some kind of master plan, it certainly doesn't include a predetermined list of who wins the lottery, which sports team wins a particular game, which people live well while others starve, which contestant wins a challenge on a reality show, etc. You would think that people who pray to God for his intervention in these types of things and thank him when they win, must be pretty shocked to find that He actually plans for them to die...... sometimes horribly! It just goes with the territory.

This is something I can believe in - that how we live our lives and how we prepare for our deaths is completely up to us. If we are here for any purpose at all, it is simply to live - to be born, to live as long as we can (loving and procreating along the way), and to eventually die. That's it. There's no more guidance than that. But in that belief, there are many decisions and choices to be made.

Ernest Becker, in his Pulitzer Prize-winning book, "The Denial of Death" suggests that it is the fear of death (or our inability to deal with it) that drives us to determine a "role" in life and that role often becomes our "purpose" for all intents. I'm comfortable with that. But in that, there is much to choose. For example we can, and do, chose who we are. I believe that the "role" we define for ourselves - the characterization of who we are and what we do - depends on the relative balance we choose amongst key dimensions such as family, friends, spirituality, work, etc. This also determines, to a large degree, the other choices we make along the road from awakening to death. Are we family-oriented or are we destined to lead from a political platform? Are we focused almost exclusively on ourselves and the pursuit of wealth, or do we devote our lives to helping the poor? Are we workaholics or alcoholics? Or both? And, ultimately, are we happy or sad, full of regrets when we finally lay on our deathbed?

I believe this much - that we alone determine who we are and how we behave throughout our lives and that this effects our state of mind as we face the end. We can choose to believe in the ideals of a specific religion and to live a "religious" life, or we can ignore religion all together and just live a good life. If we live well, does that mean we die well? If we live a good life, do we go to a "nice" place? What really happens when we - schoolteacher, streetsweeper, minister, politician, businessman, housekeeper, billionaire or vagrant - die and leave our earthly works behind?

That is the next question to explore.

PERSONAL UPDATE

I have been particularly ill for the last couple of days and, now that I think about it (and as my dear Dianne reminds me), I haven't been well for several weeks. Looking back, I felt pretty good at the beginning of the summer, not bad at the end of the summer, somewhat worse during the fall and I am much worse now than I was at the beginning of December. I sleep so much now and when I'm awake, I'm exhausted. I am out of breath doing anything. When I do wake up, most of the time I feel ill and just want to stay in bed. But I force myself to get up so I can get things done (read my post on Wrestling with Time).

Based on how I feel, what I know of this disease, and discussions with health care professionals, I realize that I am now visibly starting to die. The cancer is wearing away at my body which is tiring from fighting it. I have no interest in eating and it is only due to the constant oversight of Dianne that I am not losing weight yet. I now don't think that I will make it to the end of this year and it has been suggested to me that I may not be well enough to attend my daughter's wedding in August. My daughter is now talking about moving up the date but, as much as I want to be there, I don't want her to disrupt the complex planning that has already taken place for her to have the wedding of her dreams. This isn't easy for any of us and we'll have to see how it will play out. I feel so guilty. I know I shouldn't, but I still feel that way. I want to cry and I do. This sucks.
Doug