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.