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.