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.

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!


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!