July 31, 2011

Uselessness, limitless.

I have always been a Type "A" personality, driven, a perfectionist, a workaholic, a control freak. Even around the house, if something needed to be done, I wanted to do it. If I didn't know how, I would learn. I could do carpentry, plumbing, electrical work, even interior design, and I could do it better than anyone else, so I wouldn't hire someone else to do it.

It's all different now. Cancer has taken so much away from me. The combination of chronic pain from bone mets, side effects of pain meds, major fatigue from advancing cancer, etc. has made it almost impossible to do anything. Not that I have lost the knowledge or the ability, but the bending, stretching, hammering, etc. will wear me out as if I ran a marathon and send my pain level through the roof. So I have to hire people and rely on friends and my daughter's wonderful boyfriend to do the "heavy lifting", including cutting grass, shoveling snow, moving furniture, etc. I sleep, sit in my special recliner, read, write, and feel incredibly useless.

I can't help it. It is so hard on me to be not working and to rely on others so much. I have so few hours of "productive time" in the day, that I always feel like I'm behind, that there's so much left to do. I'm sure that some of that comes from my sense of limited time and some of it from the anxiety I live with. So I can't do much and I feel guilty along with the uselessness.

But of course, none of this is my fault, as Dianne continues to tell me. I'm not lazy. Its just such a contrast from the way I used to be. But it's one more thing, one more loss that I have to shoulder and that I hate. Thankfully, I can still use my brain (when I'm not sleeping) and I can read and write. And as long as I can do that, I can be productive, useful, hopefully helpful. As long as I am alive, I can fling my thoughts and ideas out into the insatiable vortex of the Internet. And each time I do that, I am leaving more of a legacy and hopefully have an impact on more people.

In that sense, I am limitless!

July 29, 2011

Reminders everywhere!

It's hard not to think about death when you have been given a timeframe. It's sort of like waiting on death row. It's probably even worse for me because my mind is tuned to writing about the subject. However, I don't want to be thinking about death all the time, particularly my own. But there are always some reminders that I can't get away from, such as the pain that's with me all the time, but I'm slowly accepting that as just a part of who I am.

Most of the time, I am preoccupied with what I'm doing, whether it's talking to someone, watching tv, reading, etc. But even in the middle of these normal activities, there are things that remind me that I am going to die, and make me very sad. I can't hide from them, nor can I ask others to walk on tip toes around me, because it's inevitable that something I see or hear or that someone else says will trigger the thought.

For example, hearing about Jack Layton the other day (political leader and member of the prostate cancer club) really hit me hard. While his prostate cancer is under control, I still feel an affinity for him, and hearing that he is now fighting another cancer and seeing him look so thin and ... well ... ill, it made me wonder if he was going to make it through. And that made me think about myself because I know I'm not going to make it. I could put on a brave face and tell everyone that I'm going to beat this thing (as he did), but I'm not like that and I don't have any constituents to worry about. I wish him the very best of luck. This is really about him and not me but I can't control how my mind works.

Other things that bring thoughts of death closer are more innocent or even mundane. Often, when I'm watching a movie, something will happen to pop up these thoughts like a red flag. A character may die, especially someone's spouse. Or I'll see someone giving their life to save others and I wish I could do the same to make my death more worthy. It's sometimes obvious that the plot is set up for a sequel and I suddenly realize that I might not be around to see it. Sound silly?

I love dogs and have two great bearded collies - beautiful and friendly dogs. I got my oldest as a "therapy dog", a friend to walk with, play with and snuggle up to in bed. There's a lot of evidence supporting the emotional healing power of dogs. She makes me feel good. The youngest we got because she was so darn cute and Dianne and I are suckers for dogs. Sometimes, when I'm playing with them or just when they're looking at me with those big puppy dog eyes I wonder what they will think when I'm gone. Will they forget me soon? Will I see them again "on the other side". What about my other dog friends who have already died? Will my first beardie, Gibson (who I had a very special bond with), come bounding up to meet me on that sun-drenched field I read about? Weird, eh?

And then there are those times when I'm looking into my wife's eyes in a happy moment, a precious moment that for me will last forever, and I think about how much I will miss her. I'm thinking about my own death, but I don't want her to know. These are precious moments for her too and I won't spoil them for her.

After all, it's not all about me!

July 25, 2011

Fighting for your life or just a distraction?

One of the things you hear when someone has cancer is how they are fighting it or fighting for their life. When someone dies from cancer, we talk about losing the battle. Maybe it's okay to think of it as a war, particularly when there are weapons involved, such as radiation, surgery and chemotherapy. But that suggests that when you stop treatments, you're not fighting it any more. For someone who has stopped treatment, I sometimes feel a little guilty when I read about others who are still doing something. This is intensified when I hear about others who are continuing to "fight", often right up to the end.

I follow a Yahoo group for advanced prostate cancer and these guys seem to try every possible treatment, drug or clinical trial they can find, even if it's "off label" (not using the drug as prescribed). Sometimes they pay tens of thousands of dollars a month if their insurance won't cover it. If you have advanced prostate cancer which has metastasized, you will die from it. If you are older, as many of these men are, you may die of something else, but there is no cure. Maybe some drugs will slow things down a bit, but that doesn't work forever. In my case, I can't tolerate any of the drugs that are available and I refuse to severely limit my quality of life on the chance that it might buy me an extra couple of months. For me, it's just not worth it. For these other guys, I often wonder why they subject themselves to the often horrible side effects and the chance of bankrupting their families (I want to leave every penny I can for my wife to look after herself and I refuse to spend tens of thousands on spec, even if I had the money).

In making this decision, I feel a great weight lifted off my shoulders and I can concentrate on preparing myself and my family for what I know is inevitable. Also, I have time to think and to blog about death and what it suggests about life - my remaining life and the lives of everyone else. I feel kind of sorry for the guys on the group and especially for those who I read about who spent their last remaining months "fighting" a disease which was always going to kill them.

Some people would fight even for a 1 or 2% chance, and maybe you think that it's worth it too. You can ask yourself what percentages you would need to put yourself through the miserable side effects of surgery or chemo. But what a way to spend your remaining time! I think, for many, it's the fear of death that makes them go down this path. They are so afraid to die that they need the "distraction" of treatments, side effects, constant tests and doctor visits - the fight. Or maybe they are resigned to the fact that they are going to die but don't want to spend their time thinking about it. This is a very personal choice, of course, but I think they cheat themselves of an opportunity to enjoy the time they have left - the time to prepare themselves and their loved ones, the opportunity to have a "good death". But that's the way I think about it and maybe I'm in a small minority. While I don't consider myself lucky to have this disease by any stretch of the imagination, I am glad I have had the time to think, to adapt, to share.

We all have to die sometime. It's a gift to have the time to prepare. I have already fought this disease for over 8 years. I have hoisted the white flag now so I can squeeze the best out of the time I have left. Think about what you would do.

July 21, 2011

The Will to Live.

My mother is not doing very well.  She is 90 years old with multiple medical problems and lives in a long term care facility.  She suffers from Alzheimer's Disease and Dementia which is getting worse.  In talking with the administrator, I asked her what we could look forward to.  She said that "sometimes" the dementia gets so bad that they end up sitting still, saying nothing for two or three years.  I've seen some of these people and it is very sad (my mom used to talk about all the "old people" around her who do nothing all day).  At that moment, it struck me that the dementia could get so bad that the person could lose the ability to give up on life.

Now, this may sound a little strange but, if you think about it, there may come a time in everyone's life when it's just that time to die and they know it.  I recall my father, who died a few years ago at the age of 92.  He had a great life but his final years were characterized by pain, inability to walk, partial blindness and frequent bouts of pneumonia from which he could never fully recover.  Shortly before he died, it was clear that he had made the decision that it was time to go.  I was incredibly lucky to have the opportunity to speak with him in one of his more lucid moments and say all the things I needed to say.  His answers confirmed that he knew his time was short.  But he had a relatively clear mind up to the end.  He would occasionally drift into a sort of waking coma, but did not suffer from dementia at all.  His life was over, he knew it, accepted it, and he made the decision to "let go".  As a result, he had a "good death".  It was like he drifted off into a lengthy sleep and stopped taking nourishment until his body let go.  Although I was immensely sad to lose him, I felt happy for him.  There was no fear, no reluctance, no more fighting.

Many people die like this, if they are lucky to make it to a ripe old age.  Even my mom is now talking about "not being around" for much longer and I sincerely hope that she can hang on to enough mental presence to make the decision to let go, when the time comes.  I feel so sorry for those who can't process what is happening to them such that they can't make the decision.  In their cases, it may be that they are being kept alive beyond what they would want.  Then again, maybe they don't know how bad things are.  It's something we may never know.

As I look forward to my future, I understand that the most likely thing to happen to me is that I will "waste away".  There will be lots of pain and therefore lots of drugs, but I believe (and sincerely hope) that I will have the mental presence to make the decision when it is time to go.  I don't want to suffer unnecessarily, nor do I want to have my life artificially extended.  I have come to grips with this already, so I think the decision will be easy and I think it will be obvious.  I consider myself lucky to have this foresight and to know that I will have the time to say what I need to say, including here.

Life is precious, death is inevitable.  Let's hope we all have a say in both.

July 20, 2011

Too early to deal with grief?

The tone in our house has changed, as you can imagine. Certainly, our long term planning has a much shorter time frame and, in most cases, decisions are easier. For example, when we talk about doing something fun or social, we generally decide right away. We want to maximize our enjoyment out of every day, subject to how I feel. Our reading materials have even changed. Much of my dear wife's reading materials are now about grief, looking after yourself when your spouse is ill, etc. It's not all about that, but the books laying around tell the tale. Is it too soon for her to be reading this stuff? I have some time left and hope that its longer than the doctor says, so maybe we're a couple of years away yet (denial or hope again!). Maybe she should wait.....? I don't think so.

I started thinking about death, mortality, and what it meant to me a few years after I was diagnosed and supposedly cured ("You'll be fine. Just fine!"). I did it because I had to. My analytical mind needed some answers and I had to find something to believe in or to hope for. I believe that it was this early start that has helped me deal well with the news of my recurrence, the spread to the bones, and the more recent death countdown. Grief is a multi-stage process and can take a long time, so there's nothing wrong with starting to deal with it a bit earlier.

When these earlier, bad news milestones occurred, both Dianne and I were hit hard and the depression lasted for several months or more. Over time, the impact lessened and we came up for air a bit stronger, if emotionally bruised, and were able to more readily adapt to the changes in our life-style. When the time comes, I don't want Dianne to deal with everything all at once. It's not fair to her and I want to do everything I can to make it as easy as possible. I don't mean that preparation can soften the blow of such a horrible event, but it certainly can shorten the period of emotional paralysis. My advance thinking about my own death has definitely helped me in may ways. Otherwise, I would still be going "Why me?" instead of writing a blog on the subject.

Aside from the emotional impact this will have on her, Dianne (and I) need to be thinking and making decisions about her future - financial, social, home planning, family, who will be there for her, etc. We've already made great strides in this area. The fact that we are both talking and reading, allows her to think about these kind of things with a clear head, to talk to me and to her friends about really important things, and to explore the complexity of her emotions. And even to deal with some of these emotions in advance.

Dianne is one heck of a strong woman and has the capacity to be very independent, so I have no doubt she will be okay after a while. Talking, reading and planning ahead will give her the time and space to grieve and be the emotional basket case she will need, without worrying about everything else. Supporting her in this and talking with her openly about everything is the greatest gift I can give her right now.

I consider ourselves lucky to have the time to prepare. Many people don't. There is a message in here as well for anyone with a child, spouse, parent or other loved one with a terminal diagnosis. First of all, don't ever hide this news from the person who is dying. They need to deal with things too. In fact, I think it's downright cruel to hold this knowledge back thinking that its better for them not to know (it still happens; less so now, thankfully). Secondly, you need time too - to plan, to absorb, to process. And you need to talk about it openly rather than tiptoe around the huge elephant in the room. We're all going to die some day, so if you have the time, it's the only fair thing to do.

It's probably the most important gift of love for both of you.

July 16, 2011

Thinkin' too much!

I'm back from cottage country and feeling a little out of sorts.  It was great to be away from the city for awhile.  It felt like a real vacation, which may sound a bit strange seeing that I'm sort of retired, but it really was wonderful.  Our hosts were more than kind and made us feel at home.  You know how spending lots of time in close quarters with friends can sometimes backfire?  In this case, it brought us closer.  Also, it was in Georgian Bay where I used to kayak and camp every year for almost two decades.  My kayaking days are over (for physical reasons), so it was wonderful to be able to spend some time immersed in the beauty of the area when I wasn't sure I would ever be able to see it again.

But now that I'm back in town, I'm back to feeling kinda down.  Some of that is vacation withdrawal, but I was already feeling like this for a couple of weeks before we went out.  Some of it is because I'm just not feeling well physically.  My ribs and spine are hurting in a number of places, which could be the cancer (some of it is for sure), or something else.  But I'm not going to bother getting another scan because I don't plan on doing anything about it anyway.

I think it's pretty clear that my emotional funk is related to my predicament.  There are several stages of grief that you go through when you hear you are going to die, so I think that I'm probably going through the depression stage.  But I also believe that we think about dying on several different levels.  When I'm talking with someone about my death as an intellectual exercise, I don't feel any emotion, at least not consciously.  It's as if I were talking about someone else (it's sort of like that when I write this blog).   If I talk about it consciously and emotionally, with my wife for example, it's can be very hard and is about the only time that it brings tears to my eyes.  At other times, it's all happening in my subconscious mind and, even though I don't know I'm thinking about it, it can be very emotional and makes me feel .... off.  Perhaps that is the depression that I've been feeling lately.  And, strangely, there are times when I think I'm going to live for a long time (and we all know what that's called!).

There are certainly times when I analyze things too much and perhaps this is one of them.  I've been told that I have less that 18 months to live and whether I believe that number or not, it's going to make me feel down sometimes.  I wouldn't be human if it didn't.  In fact, I read somewhere that humans are the only living creatures who think about their death at all beyond the deep-seated fight or flight response.
Maybe I should come back as a dog!

July 13, 2011

The Final Frontier

Death. The word alone surrounds us in a veil of darkness and prods mercilesy at that tiny well of fear that sits at the core of our being. It's a sad word too - funerals, tears, final goodbyes. When I speak of death, I don't mean killing in wars or murder per se. We have been numbed to that by the ceaseless bombardment of the news and entertainment media such that it evokes little emotional response (unless, of course, someone is holding a gun to your head). But good old fashioned death, the one thing that none of us can escape, needs to be talked about. We need to get past the fear and sadness and learn to understand what it is and, most importantly, what it means to us as individuals.

We'll be talking a lot about that over the coming months, but I wanted to begin with a few important and fundamental concepts. I've read a lot about this subject over the years and these readings have shaped my views of life and death and helped me to develop a working model that can help people understand who they are and why they are what they are. Just as understanding death can help put your life in perspective, understanding your life can help you deal with your death.

What I want to talk about today is this...... We are all first born into a frightening world of noise, bright lights and a deep-seated dependency on others. When we are thrust out on our own, we are faced with the challenge of making a life for ourselves which forces us to think about what's important in life and, at a more fundamental level, about the meaning of life itself. What we won't think about, and can't deal with, is the idea of our own death. It is something we can't explain and don't really believe will happen, so we consider ourselves to be more or less immortal and then go about creating a role for ourselves (a life) that becomes, for us, the meaning of our lives. A meaning with no room for death. Think about it. If we didn't consider our chosen role, our job, as the most importent thing we can do, then why would we do it? Maybe its not just the job itself, but the things that your job provides- the big house, the new car, the fancy clothes, or maybe just a simple life. What ever it is, we throw our heart and soul into it and when it's finally gone, at the end of our time, we are lost and we begin to look at death as a cheat - an end to something we thought would never end. Surprise! Fooled ya!

Ever since my initial cancer diagnosis, I've thought about my death and, because I did, I am much better able to face it now. I realized very quickly that death was both an end of sorts and a great equalizer. That all we have accumulated and all we have accomplished at our day-to-day jobs really meant nothing in the big picture. That if we hadn't been there to do our jobs, then someone else would have done them - maybe just as well. Supporting a wife and children is a much different proposition. For me, it was meaningful and worthwhile and something I could take pride in when I died. And while my family will miss me when I'm gone, they will go on and hopefully lead meaningful lives of their own. While it took a long time to get there, I realized that doing good, helping others and generally being a good person was what life was all about. And if I was really lucky, maybe I could leave something behind that could continue to help others. A real legacy. While not a necessary goal, it's still a nice thing to do if you can.

Now, I didn't suddenly quit my software job and run off to join the peace corp (I still had a family to look after), but I did start to leverage my cancer experience to volunteer and speak within the healthcare community and to write. I like to think that this helped some people, as I hope this blog will.

So I honestly believe that openly thinking about my death made me a better person. But I also don't believe that very many people do this. If they did, if we all did, then we'd all have a better idea of what's important and, consequently, what isn't. Perhaps the world could be a better place for many more people.

So think about it. Think about your own death and put your life in its proper perspective. I did and it made a huge difference in my life. And I think it will help me greatly in the months to come.

I just wish it wasn't so damn soon!

Let me know what you think!

July 6, 2011

A Profound Responsibility

I had a follow up meeting with my oncologist today.  My last chemo treatment had slowed down the rate of growth of my cancer temporarily (at too high a cost, mind you) and it seems the effect is still working.  I'm going to take this with a bit of optimism, something which I've had too little of lately.  Mind you, my pain level is increasing and the fatigue is getting almost unmanageable but these are all things I have come to expect.  Very little will shock me from here on in.

I must admit that I was a little scared going in, but I think that is natural.  Even when you know what to expect, there is still that lingering idea that it's all a big lie.  That's spelled d-e-n-i-a-l and I don't think it ever disappears completely, even when you have finally accepted your fate.  Perhaps its a coping mechanism or perhaps its just something built into the human DNA.

I read an interesting post once where a fellow terminal cancer patient stated that, once you are told you are going to die - that there is no cure - you immediately join a very special subset of people who think differently, deal with things differently and act differently than everyone else.  That there is no going back and no way anyone else can truly relate to you, no matter how much they try, no matter how much they love you.  I certainly feel that way and even my dear wife, Dianne, can see the truth in it.  For one thing, it forces you to really focus on your own mortality if you haven't already done that (I started that shortly after my initial cancer diagnosis even though I didn't know I was terminal at the time).  I will have a lot to say about what mortality is and what immortality means in future posts.  And I would love to hear your thoughts on the subject as well.

Now that I have begun this blog, I feel a magnificent new freedom.  I have so much to say and so much I want to share with you.  I didn't ask for this but, now that its here, I am viewing it as a gift and as a profound responsibility to share my thoughts and feelings with anyone who wishes to start thinking about it now.  You will all have to think about it someday, but I really believe that thinking about it early can change your life.

Till next time......

July 4, 2011

Welcome to Dying Digitally

On April 6, 2011 (by coincidence, my 58th birthday), my oncologist advised me that I had 12 to 18 months left to live.  Now, this wasn’t some kind of subatomic clock stamped into my DNA, but it was based on her experience with men in similar situations.  Shortly thereafter, I made the decision to stop any further treatment beyond what was necessary to help me manage my pain and any other symptom that pops up as my cancer slowly kills me.

Ever since I was first diagnosed with prostate cancer in October of 2002, I have made it my mission to learn as much as possible about my disease so I could make informed treatment decisions.  This has served me well, however, I discovered early on that there was very little information about the emotional impact of cancer.  So I started a blog (talkingaboutcancer.com) and wrote a book (The Wolf at my Door) to share my own experiences with others facing this horrible disease.

But now that I am past all of that, I am much more interested in what happens next.  And guess what?  There’s not much information out there on what happens between the time someone discontinues treatment and when they die.  So I decided to wind down talkingaboutcancer.com and create this new blog through which I can share my personal experiences – physical, psychological and emotional – right up to the moment of my death.  It is my sincere hope that this will leave a valuable legacy of information on what to expect for others who find themselves in my situation.  I also intend to supplement my frequent updates with musings, theories and questions about life, death and even what might come after.  These are, after all, the things that occupy our minds when we are lucky enough to have the time to do so.  After I am dead, perhaps I will arrange to have someone collect these writings and make them available in book or other formats.

In closing, I trust that you will quickly get past the initial feeling that this guy is pretty morbid, or depressed as hell, and try to get something out of what I experience and what I write.  Death, after all, is something that happens to us all and, frankly, I am already finding it a fascinating subject!

So welcome to my world and join me on my journey.  I hope it’s a lot longer than my doctor thinks.  If so, I will have quite a bit to write about!