December 23, 2011

It's Christmas. What do you believe?

Merry Christmas to everyone. As I was raised in the christian/commercial version of the season, I feel comfortable with that salutation however, whatever your beliefs, I hope you have a great holiday season.

Christmas is a time of happiness for most/many of us, but it is a season deeply rooted in beliefs. So I thought it would be a good opportunity to talk about some of my beliefs and how they may have changed since I became terminal.

When I was young, I believed in Santa Claus. There was nothing spiritual in that, but it fit in with the commercial nature of Christmas and, like most kids, I loved getting presents. Even though I believed in the story of Jesus, Joseph and Mary, I admit it was still all about the presents.

But that was then and this is now. Christmas has changed for me as it changes for all of us every year. It's a wonderful time when you are young and when your kids are young and it can still be wonderful when you're older, particularly if you use the time to celebrate your beliefs or to reach out and surround yourself with loving family and friends. When you have the spectre of an early death hanging over your head, these special times mean so, so much.

I am 58 years old now and I believe that the love of my family is the single most important thing I have. I don't believe in Santa Claus anymore and I'm really not that hung up on Mary and Joseph or even Jesus. In fact, I'm still not sure what spiritual beliefs I will take with me to the end. But Christmas makes me think of these things. For some reason, the religious aspects of Christmas bring to mind the eternal question of what happens when I die. However I know I'm not going to find an answer to that question this Christmas.

Beliefs are important. What we believe and what we don't believe help to define who we are and what direction our life takes. They say a lot about what kind of person we are..... what kind of person we have become.

As I was saying, I believe first in the love of family (and close friends). I think many of us take this for granted most of the time and, in the past, I was definitely guilty of that. But not anymore. As I ponder the true meaning of life, wondering what comes next for me, I know for sure that a big part of my life is the relationships I have with others. Every time we interact with someone else, we change something about them and that is what keeps us, as a society, moving forward. So many of our interactions in life are with our families - first our parents and siblings, and then our spouses and our own children. When we look back at what we've accomplished and think about the truly meaningful times in our lives, we find it is all about family and close friends. So, for me, this is the most important belief.

Many of my other beliefs have been tested by my initial diagnosis of cancer and my latest prognosis of an early death.

I have never really believed in miracles, which wasn't a big deal for me in the past but since I developed cancer, I have been asked by many people to believe in miracle cures. I'm sorry, but I just don't. I can't. And, no, I haven't been brain-washed by the global pharma conspiracy! I'm just the kind of person who needs proof! And, unfortunately, many, many people have died while waiting for a miracle cure to work.

I also don't believe that suddenly taking better care of yourself will cure cancer. The idea behind this is that strengthening your immune system will allow it to successfully kill cancer. I can accept that it might kill some cancer cells and therefore might help someone on the margin, but if your cancer is well advanced (as mine is), there is no evidence that it can wipe it out completely (which is how I would define a "cure").

I don't believe that doctors are Santa Claus or that their bag of goodies will cure my cancer. If there was a cure, I'd have it by now. Forget, "This might help,". And please don't get my hopes up!

I don't believe that death is necessarily a bad thing. It is inevitable, after all. If you prepare properly for it, I believe that you can have a "good" death. It is, of course, awfully sad for those you leave behind and, whatever happens to me, wherever I end up, I will miss everyone. But maybe I'll see everyone who has gone before and I will be able to look forward to seeing my dear wife and kids again!

I don't believe that God fixes sports games or helps Survivor contestants win challenges. If there is a supreme being, he or she certainly doesn't care who wins what. So thank yourself if you get that touchdown or get your flag up first. God has more important things to worry about. While I can see praying to beat a disease I personally don't believe that this will cure me. But everything helps and well.... you never really know!

I do believe in people, especially good people. While some people can be bad, it's not that I don't believe in them.... I just don't want to have anything to do with them. Good people are the salt of the earth and my associations and interactions with them have made my life so much better.

While I may not believe completely in God, Jesus and the rest of the "story" that defines the Christian theism, I do believe in what Jesus stands for. Peace on earth and good will towards man sounds pretty darn good whether you happen to be muslim, jewish, buddhist or even atheist. Unfortunately, I don't believe we will ever see that as a fundamental tenet of life on earth (we're too busy shooting at each other and blowing things up) but Christmas makes me think about it and affords me an opportunity to have a little hope for the future. For all of us.

I believe my mom and dad are waiting for me in some form when I die. My closeness to them during their last hours was intensely spritual and gave me hope that I will see them again. I miss them at Christmas.

I will be exploring my sprituality much more intensely as my time grows shorter and, of course, I will be sharing this with you. But for now, I just want to think good thoughts and make wonderful memories with family and friends. For now, I choose to believe in the Christmas spirit that brings people closer together to share love and happiness and make a little peace on our patch of earth.

Love transcends Christmas, but it is so much a part of this wonderful time of year. For Dianne and I, it is a special time and everything we can do together just adds to the wonderful storehouse of memories that she can hold onto and that I can take with me, wherever I go.

Merry Christmas everyone. Whatever your personal beliefs, enjoy the special feeling in the air. Be with those you love and love the ones you're with.

December 10, 2011

Stopping Treatment - Revisited

My choice to stop treatment is at the core of this blog and fundamental to my state of mind as I undertake this final journey and try to make the most of my days. So I feel compelled to periodically revisit this decision, particularly when I run into others who are either wrestling with the decision or have already made up their mind. Normally, these are very emotional discussions and, often, many of the individuals come across as conflicted and certainly stressed. It's an incredibly important area for all of us to understand, especially those whose life circumstances place them in the horrible position where they have to make such a decision.

When I first made my decision, I didn't feel it was that difficult for me. I think that was because I had been living with cancer for a long time, had researched the hell out of it and basically felt that I knew all I needed to know. And most importantly, I knew that it was my choice. I never once thought it was the doctor's choice and hadn't really thought about that possibility until I started reading articles about "never say die" doctors who will continue to present "choices" that are really not choices at all. Now, this doesn't apply to everyone. At many stages of a disease there are real choices of treatment to make with varying degrees of risk and potential benefit. But when you are at the stage where your disease is incurable, the only real choice you have is to continue treatment or to stop. Doctors will present treatments in very good faith that may have some benefit but that benefit may be very small. When presented as an option, many patients see the choice - to continue treatment or not - as a choice between continuing to fight or giving up. I don't, but I think many do.

I have spoken to a number of others in my situation lately and have found many who plan to continue trying anything that comes along with the hope - or maybe the belief - that it "might" help or even that it "will" help. There are even a few who refuse to admit that they are dying, perhaps because they find the thought terrifying. When I speak of my decision, I wonder if the others feel that I am giving up. We all say that it is up to the individual and bear witness to our right to make that choice, but is there an unspoken judgement there? Or do I feel some sense of guilt or indecision deep, deep, deep in my own troubled mind? Who knows? I don't pretend to, and I'm open-minded enough to consider that maybe I'm the one who has a problem with it.

Regardless, It is a very important decision and a real one. And clearly, it's not a decision you make and then move on. Whether it's through discussions in support groups, with your doctor, your own family or friends who have heard about something they think you should try, it can keep popping up from time to time and you have to deal with it. It's important for your caregiver, your palliative or hospice team and your doctors to know where you stand on this so they can interact with you accordingly. I've made up my mind to forgo further treatment and, while I may choose to revisit that decision from time to time, I am at peace with it and I don't need to be pushed into second-guessing myself. I'm thankful for their concern, but it's my choice and it's the right one for me. Please honour that as you would anyone else's choice to "keep on fighting".



COMMENTS: I really appreciate your comments. If you are having trouble leaving comments, make sure you select "Name/URL" or "Anonymous" under Choose an identity. If this doesn't work, email your comment to me at doug.gosling@gmail.com and I will post it for you. Sorry for the inconvenience.

December 1, 2011

From Type "A" to Type "Z"

This is about loss. About being dragged down from someone you were, to someone you never thought you could be.

There is little doubt that I have been a Type A person for most of my life. I always have to be doing something and I am driven by perfectionism. But since I developed cancer, especially since it metastasized, I have steadily lost capabilities such that I now classify myself as Type Z. The Z is for Zombie. Zombies are pretty popular and they provide a good model for describing how I feel these days (Dianne tells me I don't look like a Zombie, but I'm referring to how I feel). For I have lost so much and am on track to lose so much more. Too much. At times, just thinking about it drags me into a deep depression. These are the times I really feel sorry for myself. It's when I cry.

So what have I lost? Well, quite a lot.

- I have lost the ability to work, something which has defined me for most of my life.
- I cannot make the kind of money it did when I was working. There was always a commission on it's way to help with a big purchase, repair, vacation or event. No more. I'm just scraping by.
- I have lost the pride I wore like a mantle for doing a good job and for being recognized for it. The respect of my peers.
- I don't see the many people I met through work. They were not necessarily best friends, but they were my "network" who we're always up for a beer or a coffee.
- I can't travel like I used to. I hated the extent of traveling I had to do for my job from time to time, but I enjoyed being a jet-setting business man and meeting new people in other countries.
- I forget things all the time....words, names, what day it is.
- I can't drink any alcohol because of the medication I'm on. I loved good scotch, cognac, dark beers.
- I don't enjoy food like I used to and can't eat as much.
- I can't kayak like I used to and miss my annual summer kayaking/camping trips with my buddies.
- I can't participate in any sports and I can't even work out or jog, so my body has lost all it's muscle tone (well a lot, anyway).
- I have only a few really productive hours in the day because I sleep so much and am so drowsy the rest of the time (from the cancer and my meds).
- I don't play my guitar any more.
- I have had to cut back my active involvement in health care advocacy.
- I live with varying degrees of pain every day. And I'm not in love with the meds I have to take to make it bearable.
- I have a great deal of difficulty with intimacy which is hard on Dianne and I.
- Above all, I am losing a future with my family and friends, and especially with Dianne.

Wow! Sounds pretty desolate, doesn't it? Well, it sure feels like that some days! But to be fair, I still have a lot to be thankful for and I don't want to minimize that. Yes, maybe I'm whining, but I'm being honest about it because, after all, that is what this blog is all about. I have to be open and honest with you. You need to know what I feel..... what others in my situation feel.

A light in the darkness!!!!!!!!! Recently, Dianne and I connected with the Dorothy Ley Hospice, which has been like a breath of fresh air to us. In addition to the support of our family and friends, we now have the support of a wonderful team of volunteers and professionals and the occasional companionship of others who are going through what we are going through. Does that move me back up the alphabet? Mmmmmmmmm.....nah. But it sure helps to concentrate on the good things in life; to realize that, in spite of what's happening, life is good!

And I can still write!!

November 17, 2011

The ups and downs of remaining time.

A day in the life. A week in the life. What is it like to live each day knowing you are dying prematurely, that there is a clock ticking away somewhere with your name on it? I'm sure a lot of people would like to ask me that sometimes, but most are afraid to or think that it might make me feel uncomfortable. Well, let me try to answer that with some examples.

It seems that every week is different in some way. There is no "regular" or "average" week. I thought that when I stoppedd working, I would be sitting around watching a bunch of movies, playing the guitar, doing puzzles ... that sort of thing. But it hasn't been like that at all. I sleep a lot from the fatigue I suffer due to the cancer and the pain meds I am on, so it seems like there is never enough time in the day to do very much. At the same time, there is an underlying feeling that time is precious, and I feel guilty that I'm not making the most of it. I don't sit around sulking or anything like that, but I feel like I should be doing more.

This past summer, I did make the best of the good weather, the highlight being the several trips to our friends' cottage on Georgian Bay. I was also able to spend some sunny afternoons relaxing in our backyard, but maybe not as much as I would have liked. But the fall has seemed to go by quickly. I'm already 6 months into my doctor's estimate, but I am still hopeful that I will exceed the year I supposedly have left. The runaround that I got from my medical oncologist where I almost got back on cancer treatments was extremely hard on me and was a stark reminder of my situation. While I'm back on track, I still have a few remaining tests and procedures to do, most notably some radiation to a few of my bone mets to relieve the pain a bit. All about quality of life, you know.

So let's look at ths last week. Not a normal week, but it will give you an idea of the ups and downs of my life.

On Saturday evening, with the help of a couple of Red Bulls, I enjoyed an evening at a lounge celebrating my daughter's engagement with her fiancé, his family, our family and their friends. It was a wonderful time and I lasted until almost midnight, pretty good for me and very worthwhile. I am so thrilled for her and I love our future son-in-law. Of course, I spent most of the next day recovering, but I was prepared for that. A happy, normal father for a while. I loved it and really was happy!

Then a doctors appointment on Monday morning to discuss radiation, another on Tuesday morning with my orthopedic surgeon to talk about my back and then again on Wednesday afternoon for targeting scans in preparation for the radiation. All this while getting used to my significantly higher dose of pain meds. On the first two days, Dianne and I took the opportunity to do some Christmas shopping - a normal thing to do - fun - but by mid-week it started to get to me. The doctors' visits, the trips downtown, the parking ... all of the things that have happened to me and that I have experienced throughout my cancer journey, they all cause my stress level to go through the roof and the depression descends on me like dark volcanic ash. I spent the night in tears, feeling sorry for myself, feeling guilty for things I had done in the past, things I should have done, and that which I was doing to my family. I know it's not my fault that I got cancer, but I still feel guilty because it's me that is changing everything. My life is ending and Dianne's will never be the same. My children are losing a father, a future grandfather. And I am going to miss so much. It tears me up inside sometimes. All of it.

You might think that I fear only my own death, but I fear the death of my life with Dianne and with my children. I fear the challenges and changes that my death will bring to them all. But then, in my tears, I realize how much I will miss them and how much I will miss of life. All the things that I might have experienced. All the wonderful things that I will miss seeing. All the great new products that Steve Jobs left in play before he died. All the things I might have done. It can seem bleak, hollow, sad. And that's when I know what it really means to die. And that's what I fear.

So you see what it's like to be me. A week in my shoes that ranges from the highest of the high to the lowest of the low. It ain't pretty, but it's all I've got. And I will do my best to enjoy each day to the fullest. Each day with all it's ups and downs. I will laugh and I will cry and eventually I will die. As will we all. I just know mine is coming too fast and I am afraid.

November 10, 2011

Choosing Death.

I have touched on this topic quite a bit in discussing my personal justification for discontinuing further treatment in the face of an incurable, terminal disease.  But, recently, I have stumbled upon a number of articles and blogs that provided me with some further perspective on this important topic.

It seems that what makes this problematic is the fact that many doctors and patients just don't want to talk about death or life expectancy.  In some cases, the patient may not even know that there is no chance of a cure.  So it's impossible to make an informed decision when you don't have the right information.

A recent article in the Globe and Mail mentioned a couple of studies with some shocking results.  In one study, only 18% of 440 patients who were likely to die within a few months talked to their doctors about this fact.  Another US study found that 20% of family with loved ones in hospice were not told that the disease was incurable.  Dr. Gary Rodin,  head of psychosocial oncology and palliative care at Princess Margaret Hospital in Toronto, refers to a "conspiracy of silence" that existed for years amongst the medical community, such that doctors wouldn't talk to patients about death.  I know from personal experience that I have had to push for information on my own life expectancy at various stages of my treatment.  I could sense almost a reluctance to talk about it.  I understand misgivings around giving an exact time frame, but my psychologist was the only one who ever said, "You know that this thing is going to kill you."  Once my cancer returned and particularly when it metastasized, I knew for sure that I was going to die because of my own research.

Another perspective to this is that the medical community is trained and driven to treat patients to the bitter end (and bitter it may be).  It seems there is always something else to try, whether its a new drug, surgery or radiation.  Even though the odds of the treatment helping you may be very low (and even zero in terms of a cure), there is a tendency to offer it anyway.  And we trust them so much we go along with it, often suffering through pain and sickness and tremendous emotional stress, and ending up no better off or maybe only marginally better off.  Even if you thought you might get an extra month or two, would you want to be too sick to do anything with that time other than feel sick and maybe disappointed that you didn't get more.  Dr. Larry Librach, in a recent article in the National Post mentioned an old doctor's joke:  "Why do they put nails in coffins? ... To prevent the oncologists giving them any more chemo."

But it's not always the doctor.  Surely there is an onus on the patient or their advocate or loved ones to ask the questions that need to be asked.  If an illness is incurable, they need to know that and they need to have some idea of how much time they have left.  How unfair is it to not know you are dying and therefore not able to do and say the things that you really need to say and do?  And just like doctors may not want to "give up", many patients don't want to feel that they are giving up by not going ahead with anything the doctors could throw at them.  Even if the odds of the treatment helping are extremely low, there is a tendency to go for it.  People buy lottery tickets all the time with worse odds.  And I think that many of us have trouble letting go of the deeply ingrained belief that we are going to live forever.  We believe that we may be that one in a million case where the treatment delivers a miraculous cure.

In other cases, it may be the patient's loved ones who push them to undergo these additional long-shot treatments.  No one wants to let go, so if they hear that something "might help", they may pressure the patient into going ahead.  In turn, the patient will go along with it because they don't want to let their loved ones down. Or they don't want to be perceived as giving up when there might be a chance of spending more time with them.  In many cases, everyone is fooling everyone else and themselves but it is the patient who must endure the effects of the treatment.

I am often asked about hope.  In fact, I have the Japanese symbol for "Hope" tattooed on my inner arm.  When asked, I say that I have hope for a miracle cure but my real hope is that I will have a good death, with little pain, and that my family is well looked after when I'm gone and no longer there for them.  I also hope that everything I do before I die leaves a lasting legacy that can help others, because this is integral to my sense of the meaning of life.  I hope that I am remembered with love.

But it is hope that often drives a patient's decision to continue treating an incurable disease.  Dr. Lucy Hornstein, in a recent blog on huffingtonpost.com mentions a colleague who tells his patients that he is in the business of hope.  I think a lot of doctors honestly feel that way, but I think that making a terminal patient believe that another course of chemo or whatever might help, where "might" is a real long-shot, is actually giving them false hope.  And many of us are so beat down or scared witless that we grasp onto anything that smells of hope.  This just isn't fair.

So how to we address this?  What is the right way of looking at it?

First of all, doctors need to understand that patients don't need false hope and that they may be giving it to them by offering further treatments that may only give them an extra month or two (at best) but subject them to, at a minimum, discomfort and disappointment.  I believe the doctor's Hippocratic Oath includes a statement about "doing no harm".  Doctors may think they are satisfying the oath by trying everything they can, but they need to understand that side effects, pain, illness and even the emotional strain of hoping for something that isn't going to happen is, in fact, doing harm.  Rather than constantly trying to treat or even going so far as "heroic attempts" to extend life, doctors should be thinking about how they can help their patients understand that they are going to die and doing whatever they can to make their remaining time as comfortable as possible.  That's certainly what I want from my doctors and I believe that, given an educated choice, many patients would feel the same way.

And let's understand what the real choice is.  It is not a choice between "giving up" or "continuing the fight".  That's not a choice.  In fact, as Dr. Hornstein suggests, if a treatment actually has a good chance of curing you, no responsible doctor is going to present it as a "choice".  She says,  “... doctors only offer you choices when it doesn't actually matter."  If your doctor offers something and says "it's up to you", Dr. Hornstein suggests you just say no and go about making the most of what time you have left however short or long it is.  I couldn't agree with her more!

If you have an incurable disease and you have done all of the standard treatments, the real choice may be between accepting the fact that you are going to die and try to have a "good death", or to keep trying whatever the doctors can throw at you and have a lousy last few months or years.  That is the choice that I saw and that led me to the decision to stop further treatment.

Inevitably, all of this comes down to the need to get the idea of death out in the open and talk about it.  Even if you're healthy, you are going to die sometime and it could be sooner than you expect.  You can at least make it known how you would like to be treated.  Death is a natural as birth or any other major milestone of life so we shouldn't be afraid to talk about it.  If you have a terminal disease, it is critical that you talk about it with your doctors and with your loved ones so you can make the right choice for you.  Some people feel that even talking about end-of-life is a form of giving up.  Nothing could be further from the truth.  Not talking about it is giving up and going with the flow; just doing what the doctors want until they are sticking a breathing tube down your throat to keep you alive on machines.  I wouldn't wish that on anyone. 

Talking about death is important for everyone, especially for the patient, but even for those who go on living.  By talking about it, we can make good decisions and, ultimately, make sure that everything is said that needs to be said.  As Janice Van Dyck says in an article on huffingtonpost.com, "The power of letting go means no one becomes the victim of death."

No one should feel like a victim and no one should feel, or be made to feel, like they are giving up.   I've said this many times - you should have no regrets. This applies particularly when you choose a good death over a 'never say die' medical lottery.



P.S. If you follow my posts via email, make sure you click through to dyingdigitally.com for Personal Updates and other news

November 6, 2011

Back on track!

Never say never. Again! In the world of cancer and other terminal illness, things can change overnight - a single test result, a new shadow on a scan, a change in a number on a blood test result. You can go from happiness to depression (or vice versa), from moodiness to anger, from crying to bawling your eyes out.

Or from peacefulness to confusion. That's what happened to me a while ago (as I discussed in my post "Never say Never"). I was beginning to feel almost comfortable with my lot in life, with the knowledge of my shortened time on earth and all that goes with that. But then I was talked into "trying someone new", that much-favored approach to end-of-life care by doctors who never want to give up on the slightest chance that they can do some good. I didn't go along with it to try to extend my life by a month or so, or to grasp at some fleeting hope that I might be part of a miracle cure. As I said in my post, I went along in the hope that I could minimize the risk of breaking my back and all that might entail. But I couldn't hide from the fact that I was, in fact, treating my disease after I had decided not to anymore. I was okay with the flip-flop (you do whatever makes sense at the time) but I still hated it. The waiting, the decision-making, the tests, the hmmmming and hahhhing, the injections, the side effects. But I was going to do it anyway and I documented how it felt for your benefit.

And then it all changed again.....

I had a pre-booked appointment with my pain doctor in palliative care who advised me that the hormone injection I had received AND the new medication that they were going to try to get for me were contraindicated with my pain medication, methadone! On methadone, you have to be very, very careful In this case, I could develop a heart arrythmia and potentially have a fatal heart attack! Now that would sure as heck would ruin my quality of life! He seemed very angry that this had happened. My records clearly indicated that I was taking methadone for pain relief and I made sure to tell my medical oncologist at the time. I was thankful that I only had a 1/3 strength injection, particularly since I was significantly increasing my dosage of methadone. I was upset as well and wrote an email to my med onc telling her what happened, how surprised and scared I was, and how I would not be returning for my next monthly hormone injection. And forget about the new medication. That was it. I was finished. I will consult with radiation oncology about radiating some of the new spots to reduce the pain and I will consult with my orthopedic oncologist to better understand the risk of pathological fracture. And I will be very, very careful how I walk, what I lift, how I turn my body, etc. That's all I can (want to) do while I hope against hope that nothing breaks and that I am able to walk my daughter down the aisle next year.

While I was upset at what happened with the meds, I was surprised at the blanket of calmness that fell over me and how quickly it happened. I had been very aware of the added stress that came with the start of treatment, but I guess I didn't realize just how much it was bothering me. But it disappeared as quickly as it had come. I like this feeling! I'm relaxed and I'm not going to brood over what I can't do. I'm just going to do what I was trying to do before (quite successfully I might add)- which is to enjoy each and every day. Relaxed, but perhaps with greater vigilance?

Like I said - never say never!

A final note. Let's not forget the key lesson in this for all of us. It is incredibly important that the patient and their advocate be intimately involved in their care. Doctors can make mistakes. Communication may not be as seamless as we would like in a busy hospital. People, test results, drug interactions, etc. can fall through the cracks. The health system is not infallible and relying exclusively on a busy doctor who has dozens of patients and unrealistic demands on their time is not a safe thing to do. And even with the best of intentions and the most careful case management, mistakes can happen. We are only human, after all. So be informed, be watchful, and don't be afraid to ask questions or to challenge. It's your body and your life (or your loved one's) and you have every right to have a say in what happens to you. And if you think it's time to stop, just say so.

Be careful out there!

P.S. If you follow my posts via email, make sure you click through to dyingdigitally.com for Personal Updates and other news.

October 28, 2011

Never say Never!

I started this blog when I made the decision to discontinue treating my cancer and was given 12 to 18 months to live. I was looking for answers to the questions, "What happens now?" and "What do I do now?"  I couldn't find much on the Internet so I thought that I would use my own situation, through this blog, to help others in the same situation.

Deciding to stop treating a terminal disease is not an easy decision to make but I felt good about making it.  There is no cure for my cancer and I have a history of significant side effects from any of the meds I could take.  My quality of life was already compromised due to the pain of my bone metastases and the tremendous fatigue I was experiencing from my pain meds and the cancer itself.  I didn't want to continue taking treatments that further compromised my quality of life with no potential for cure.  Give me something with any reasonable chance of a cure and I'll be all over it but, otherwise, I wanted to focus on enjoying the time I had left.

I have been doing that, with the belief that I would be "okay" until perhaps the last few months of my life.  But as I have always known, the cancer journey is full of twists and turns and it ain't over 'till it's over.  There was always the chance that something could happen to compromise my quality of life before those last few months.  Well, that has happened to me and I am compelled to do what I can to try to meet my main objectives:  to maintain my quality of life; to be able to do things to enjoy life; to be able to walk my daughter down the aisle next year.

My cancer has continued to metastasize/spread to my bones.  Thankfully, it has not yet spread to any of my organs, but my lower back (specifically, my sacrum) is becoming significantly involved.  And I am terrified of the increasing possibility of it breaking (what is called a "pathological fracture").  Depending on where and how it breaks and what nerves are damaged, I could be severely crippled or worse.  I can't let that happen.  I won't let that happen.

So I find myself once more exploring various treatments including radiation, surgery, drugs, or combinations thereof.  I hate it.  I hate the decisions I will have to make.  I hate the side effects that I will have to suffer through.  I hate the limitations it will place on what I can do.  I hate the added stress of wondering and hoping and the disappointments that may come.

But I hate more the idea of spending a good portion of my remaining time on my back or the idea of not walking down that aisle.  It is not about survival.  There is no cure.  It's about quality of life.  Something that I thought I had wrapped around me to keep me going until......

I've always known that there is nothing simple about life and certainly not about dying.  But I still have hope.  Hope that it will not be as bad as it could be.  Hope that I can continue to find joy in each and every day.  There is always hope.

I will continue to write about all the things I planned to write about, perhaps with some new perspectives and new insights.  I will definitely have a lot to say.  Wish me luck and continue to read.

Thank you all for your kind thoughts and words.

P.S. If you follow my posts via email, make sure you click through to dyingdigitally.com for Personal Updates and other news.

October 26, 2011

Give me a break!

I don't know why, but I thought that having a terminal disease which turns my life upside down would mean that I would get a few breaks along the way. Now, I don't wear a sign around my neck saying, "BE NICE TO ME - I'M DYING!" and I don't expect strangers to know what's going on with me, so how could I realistically expect anyone to treat me differently?

Well, I can't! So maybe I'm just banking on Karma. Or maybe I'm just appealing to the Universe to give me a break.

I think this is normal for people in my situation. Back in the "real" world when I wasn't ill and didn't know my time was limited, I would get angry if I ran into a traffic jam when I was late driving to a meeting. I would get frustrated if I couldn't find a seat on the subway or if someone snuck in front of me in a line at the bank machine. That was gross selfishness and ego on my part because I was conditioned to think that my time was more important than everyone else's. Embarrassing in retrospect and perhaps a sad commentary on what we have become, because I know I wasn't alone.

But I don't think my desire to "get a break" comes from the same place. I just think that those of us who deal with so much pain, invasive tests and often harsh treatments, and who carry the emotional burden of death hanging over our heads, feel like its too much sometimes. Maybe the Universe doesn't "owe" us anything, but maybe it would just be....... nice. It would be nice to feel that there was some balance in the world.

I have been using a cane to walk for some time, mainly for stability but also to relieve the pain of walking. Canes are an obvious thing and many people are very kind and hold doors for me or are a little more careful around me. But others totally ignore me and some just about run me over. Are they blind or do they just not care?

The other day, something gave way in my back and I started to collapse in a crowded store. There were lots of people around and they all stood by and watched as my 5 foot wife tried to hoist up my heavy 6 foot 2 frame. She managed to get my hands on the shopping cart so I could pull myself up
and which I leaned on to get out to the car. Even as I shuffled across the parking lot in obvious pain and distress, I came close to being run over by several impatient drivers.

Is that what we've come to? Or am I just whining again? It doesn't have to be that way. I remember back in "real time" Dianne and I stopping to help an elderly lady who had fallen and lay bleeding on the sidewalk. We weren't the first car by but were the only ones who stopped. We were appalled!

Sometimes I hate what the "civilized" world has done to us. I guess I'm just more sensitive to it now. And I'm really not complaining. I just want to share with you how things are different for me now. In the past, I would just get mad and complain about all the idiots in the world. Now I just feel sorry for people who have not yet developed any perspective on what is really important. A terminal illness can definitely do that for you, but it's not something I would recommend.

Just try to give us a break sometime. Please.......

P.S. If you follow my posts via email, make sure you click through to dyingdigitally.com for Personal Updates and other news.

October 23, 2011

Dogs in Heaven.

I spend a lot of time wondering about what comes after and I plan to share my thoughts and opinions as they develop. It really is a work in progress. I do hope, however, that it's something quite nice. I do need to have something to hope for..... to look forward to.

One thing for sure is that I am a dog lover and it would be wonderful to meet up with all my pets in the afterlife.

Anyway, I love this story. A friend sent it to me via email and I wanted to share it with any other dog lovers out there who will understand where I'm coming from. Something light for a change.......

A man and his dog were walking along a road. The man was enjoying the scenery,when it suddenly occurred to him that he was dead. He remembered dying, and that the dog walking beside him had been dead for years. He wondered where the road was leading them.

After a while, they came to a high, white stone wall along one side of the road. It looked like fine marble. At the top of a long hill, it was broken by a tall arch that glowed in the sunlight. When he was standing before it, he saw a magnificent gate in the arch that looked like mother-of-pearl, and the street that led to the gate looked like pure gold.

He and the dog walked toward the gate, and as he got closer, he saw a man at a desk to one side. When he was close enough, he called out, "Excuse me, where are we?"

"This is Heaven, sir," the man answered.

"Wow! Would you happen to have some water?" the man asked.

"Of course, sir. Come right in, and I'll have some ice water brought right up."

The man gestured, and the gate began to open. "Can my friend," gesturing toward his dog, "come in, too?" the traveller asked.

"I'm sorry, sir, but we don't accept pets."

The man thought a moment and then turned back toward the road and continued the way he had been going with his dog.

After another long walk, and at the top of another long hill, he came to a dirt road leading through a farm gate that looked as if it had never been closed. There was no fence. As he approached the gate, he saw a man inside, leaning against a tree and reading a book.

"Excuse me!" he called to the man. "Do you have any water?"

"Yeah, sure, there's a pump over there, come on in."

"How about my friend here?" the traveller gestured to the dog.

"There should be a bowl by the pump," said the man.

They went through the gate, and sure enough, there was an old-fashioned hand pump with a bowl beside it. The traveller filled the water bowl and took a long drink himself, then he gave some to the dog. When they were full, he and the dog walked back toward the man who was standing by the tree.

"What do you call this place?" the traveller asked.

"This is Heaven," he answered.

"Well, that's confusing," the traveller said. "The man down the road said that was Heaven, too."

"Oh, you mean the place with the gold street and pearly gates? Nope. That's hell."

"Doesn't it make you mad for them to use your name like that?"

"No, we're just happy that they screen out the folks who would leave their best friends behind."

Anonymous

October 18, 2011

How fear darkly comes.

I talked a few posts ago about the fear of death and how perhaps I feared the coming of the fear of death. I was speculating then because of where I was at that point in time. But time moves inexorably forward. You can't stop it at a "comfortable" time and decide to hang tough for awhile. The sands keep pouring out of the glass, continuing to remind you that you have a limited time to live.

Those of us with premature death sentences hanging over our heads find ways of compartmentalizing things so we can live life as normally as possible or even just make it through the day. But sometimes things happen that slam you back against wall with the truth. And as Jack Nicholson suggests, sometimes we can't handle the truth.

I realize now that you can't hold the truth at bay forever and that it isn't something that you can just decide to face a day or two before you die. You want to hold it off as long as possible so you can squeeze as much living as possible from the days you have left. But sometimes it just comes and there's no way of stopping it.

Over the past couple of weeks, my pain level has increased significantly. Although I have increased my pain meds, they only make it bearable at best and, at times, it's almost unbearable. That's when I can't sleep. That's when I can't get comfortable. That's when I can't think straight. That's when I cry. It's when I feel the fear.

Where does it come from? I was laying in bed, squirming around to get comfortable and feeling sorry for myself when it hit me. But it didn't suddenly "become". I realize now that the fear of death is always there. It is something that begins to grow early in our development when we come to realize that we are live, thinking creatures that will eventually cease to be live, thinking creatures. We compartmentalize it then by pushing it away, consciously forgetting it by concentrating on living. As Ernest Becker suggests, we begin to adopt the role that will eventually define the meaning of life for us and makes it unnecessary to think about our death. While this thought lingers in self-imposed exile, it grows and evolves as our subconscious feeds it information about what death is, when and why it could happen, and what it might mean to us. Then (hopefully) many years later we are hit with a car, a life threatening disease, or some other bad luck and it comes oozing out of the dark recesses of our minds to scare the hell out of us!

"I could have died!" you cry. "I'm going to die!" you moan. At the very least, you realize, "I could die!". For me, my initial diagnosis made me think that I could die and the fear of death popped out of its hiding place long enough for me to convince myself that I wasn't afraid of dying and I honestly felt okay with that. At first. Strangely enough, it was two or three years later that it snuck back out when my analytical mind tried to find the true meaning of life in a world whose morals and priorities I was beginning to question. I eventually found something that I could hang on to and that was enough to carry me. For awhile anyway.

It popped out again when I discovered that my cancer had metastasized and was now incurable. It scared me, but the uncertainty around time frames seemed to blunt the fear somewhat. But when things started to advance more aggressively and I was given the 12-18 month time frame, it really hit me hard. That wasn't much time and even if there was some uncertainty, the time was short. I had to see just what I could accomplish with that much time. Interestingly, this focus on planning and worrying about how my family would cope allowed me to not deal with the fear. But now it's back in full force as the symptoms have progressed to the point that I can't ignore the reality of my illness anymore. It hurts and I'm scared. In fact, it really hurts and I'm really scared. But I'm not afraid to admit it.

So it seems that the fear of death is something that is with us from our early years and when there is a real reason for it to spread darkness into our conscious minds, it comes and goes and comes and goes as our journey progresses.

So now I lay awake at night and, tired as I am, the thought of dying will not go away. I think about how long I have left and the things I still have to do and I wonder how sick I'm going to be and how much pain I will experience. I used to think that I would be okay until the last couple of months, but now I fear that my back will break and I could end up bedridden and in severe pain for all the time I have left. And I think, if that happens, I will die much sooner because maybe I won't want to live that way. Maybe.

So the lesson here is that fear of death is not a one time thing and that those of us with a terminal illness will experience it at many times and in many different intensities. But I feel strongly that the only way to deal with it is to talk about it; get it out in the open and work it through. Nobody wants to go through this alone. It's too much and too dark. And while I will fear my death, my loved ones will also fear my death. Talking about it, exposing it to the light can only help us all. None of us will leave this world alive anyway so we might as well get it out in the open and deal with it.

I'll keep you posted on how it comes and goes and how it affects me. Today I'm afraid, but who knows what the future will bring?

October 16, 2011

How ya doin'?

How are you doing? How's it going? What's new? These questions flow so easily off your lips whenever you bump into someone. Over the years, this standard greeting has become a connective glue that bonds us together in social interactions. Amongst strangers and acquaintances it's a way of acknowledging them and opening the door to further interaction if both of you desire it, although often it means little more than "Hello".

For family and friends, this type of question begs a response with some meaning. But how much? What are we really asking? Do we really want to know the answer? If you really aren't well, or if you happen to be dying, does the person behind that smiling face want to know how you really feel? "oh hi," you say. "I feel like shit, I'm peeing blood when I can pee, and I spend most of my nights crying my eyes out at the unfairness of it all." Do we really think that's what they want to hear? Maybe some do!  Maybe you can look at the body language and facial expressions for a clue.  If someone asks you how you are doing and has a very serious, questioning look on their face, then maybe they know something about your situation and really want to know how you are doing.

Sometimes it's so obviously lacking in sincerity that you know they don't really want to know.  I've had many people, including supposed friends, ask me how I am, and when I tell them my pain level is really bad and I'm worried about how fast my cancer is spreading, they say, "That's great!  I'm glad you're feeling better".  I kid you not.  This happens more often than you would think.  But sometimes you can give people like this an out.  I've said that my pain level is pretty horrendous but I feel a bit better than yesterday, so when they say, "That's great!  I'm glad you're feeling better," it sort of makes sense.  To them, anyway.

Sometimes it can even backfire on you because as soon as someone hears you have a disease or are suffering, many people love to tell you how they had something which is totally unrelated but surely must be much more serious.  Or they'll start listing all the people they know who died miserably from whatever you have.  All just to perk you up!

My good friend Lori Hope has just released a revised edition of her wonderful book, help me live: 20 things people with cancer want you to know, which contains many humorous and sometimes scary things that people say to people with cancer as well as what we really want to hear.  It's certainly something I relate to and has been very helpful to many people who find themselves having to deal with a friend or loved one with cancer.  Although it focuses on cancer, it is equally applicable to any serious illness.  Please check her out at lorihope.com to see how to obtain a copy of the book and access her entertaining and informative blogs.

It's hard to know how to respond sometimes, although I think we do get better at it as time goes on.  I've personally developed a number of approaches to deal with different people or situations - rules of thumb if you wish.

For strangers, I generally just say that I'm doing great and ask them how they are doing with the same level of disinterest.  For friends, relatives and others who might be interested, I tell them I'm "surviving" or just "getting by".  This provides enough of a hint that invites them to probe further if they are truly interested but also allows them to brush it off with, "Aren't we all," or something similar.  For my other friends who ask but really don't want to hear, I like to tell them how I'm doing in gory detail to see how they respond.  I'm just having fun to see how uncomfortable I can make them or to see if they come up with a newly entertaining response.  (Cruel, isn't it?  But you've got to have some fun when your life is falling apart!)

For a long while, I would avoid telling my friends too much about how I was feeling because they always asked and I felt that I was complaining too much to them.  I also didn't want to scare them away because friends are so precious at times like this.  But Dianne told me that I had to tell them the truth.  They were my friends and they really want to know so they can understand how I'm really doing and know how to help me.  So I started doing that and discovered that she was right (as she always is, of course)!

So just think about what you are saying when you greet someone who you know is ill.  If you really want to know how they're doing then make it clear and be sincere.  If not, try, "Hi.  Good to see you."  But remember, some people really need to talk about what is happening to them and many don't have anyone strong enough and interested enough to do that.  If you're someone who can, then bless you and let them know.  You can start something precious for both of you.

And if they tell you they're dying, don't tell them how wonderful that is!  You'll just give yourself away!


October 11, 2011

Don't Wait!

Dr. Robert Buckman died on Sunday, October 9.  He died in his sleep on a flight from the UK to Toronto.  He was 63 and was a friend.  Rob (as he liked to be called) was a friend to many as he was a well-known oncologist, an author of many books and had a fascinating history which included doing comedy with John Cleese for many years.  I got to know him through his work at Princess Margaret Hospital where he continued to practice while doing seminars for patients and doctors.  He was particularly good at talking to doctors about how to communicate with cancer patients.  Over the past few years, he became an advisor and mentor to me as I expanded my own volunteer work within the health care community and through my previous blog (talkingaboutcancer.com).  He read a final draft of my book and provided a cover recommendation. He once said that we were kindred spirits which was one of the biggest compliments I could receive.  I wish him well on this next phase of his journey, whatever and wherever that may be.  Actually, as a Humanist, he believed that we all just cease to exist when we die.  I hope he is pleasantly surprised!

I mean this as a brief tribute to a man who has helped many people and as a nod to a lost friend.  But I also want to make a point.  I used to visit with Rob often when I was downtown at the hospital, but had not seen him for many months and had meant to drop by soon.  Since I haven't been going to the hospital as often, "soon" stretched into "next time" and then into "too late".  While he didn't have a terminal disease that I knew of, I wasn't expecting him to die but, of course, you never know.  I am saddened by his passing but even more so because I left it too long and didn't get to see him again.  I wanted to talk to him about some of my decisions and get his thoughts from his various viewpoints as a doctor, a Humanist, a comedian and a friend.  And I just wanted to give him a hug.

A similar thing happened to me last year.  I had met a very interesting man, Irwin Barker, who was a well-known Canadian comic with an unusual cancer who had already out-lived his estimated "time remaining".  He attributed his extra time to his sense of humor, while undergoing treatments and suffering through severe physical problems.  We met because he was interested in writing a book about cancer, humor and dying and had heard about my book.  While we never really had time to become friends, I saw in him another kindred spirit and thought that we could become close.  Unfortunately, with both of us going through treatments and his traveling to see family, we just never got together again.  Even though he was clearly on borrowed time, his attitude and perhaps my naivete didn't allow for any sense of urgency and so next week turned into a couple of weeks and then into too late.  I mourned the loss of something that could have been and I was hit hard at a time when I was suspecting that my own time was about to become more limited.

These are just two stories out of so many, many more but they highlight an important lesson for us all.  Don't wait, particularly when there are time frames involved.  It's easy to put off meeting that old friend who you just heard is dying of cancer or who just survived a serious heart attack.  In fact, for many, the fear of facing death makes it seem even easier to be too busy and to put things off.  If you wait too long, you may just run out of time and miss the opportunity to see someone for what could be the last time.  Our interactions with family and friends are key to the meaning of life and are at the root of what is (or should be) truly important.

I miss Rob and will never get that last hug.  I miss Irwin who I never got a chance to know.  And now, with my own clock counting down, I don't want to miss any opportunities to spend time with the people who are dear to me.  I don't want any of them to wait to see me, but it is a two-way lesson.  I can't allow myself to wait to reach out as well.

Life is too short.  Believe me.  Don't wait.

September 30, 2011

The Value of Extra Time.

I volunteer a lot to speak or be interviewed for videos and such as part of my "bucket list" item of giving back. I have opinions on many things related to cancer, chronic illness, life and death, health care, etc. based on my personal experience which I love to share if they might help others understand. So yesterday, I was doing a video interview for my cancer center's new website and was asked how I would value the "extra time" I had been given through the treatments that I had undergone.

In all of my time thinking and writing about life and death, I have been looking at the big picture - the meaning of life, what happens when we die, what is a good death - that sort of thing. I had never had to focus on the incremental time I have been fighting so hard to attain. So the question caught me a little off guard and I had to think for a moment. But just for a moment, because the answer was pretty clear.

If there is value to life at all, there is obviously value to each and every day. It is why we continually strive to avoid getting ourselves killed or dying prematurely from disease. But when you have a terminal disease, every day is more valuable than those prior to the day you realized you weren't going to make it. Of course they are! The challenge is to make them more meaningful - to you and to your loved ones. If you can make those extra days special in any way, then they have real value. My own objective is to make each and every day I have left special in some way and, to a large extent, I have been able to do that. Not necessarily every day, but certainly overall (so far, anyway....).

But that doesn't really answer the question. To do so, you have to compare what you get to experience with the extended time you have left versus what you would have missed If you hadn't gone through all those surgeries, radiation treatments, chemotherapies (or whatever) that gave you those extra days, months or years. While there are many such events - big and small - that I could list if I had a bit more time to think about it, there are two that really stand out and that I am immensely thankful for.

The first was the recent death of my mother. While it was a sad event, it was part of the circle of life and I was around to be part of it. I was alive to be with her in the days before she died and I was at her side when she took her last breath. To miss that would have been a tremendous loss to me and would also have meant that this dedicated mother would have lost a son before her - a mother's worst nightmare. By fighting to extend my life, I saved her from that and we both were able to experience what was, for her, a good death. Now that has real value.

The other event is a two-parter. I was also here to celebrate my daughter's recent engagement to a young man I admire and respect tremendously, so I now have the very valuable knowledge that she will be able to experience life with someone who she loves and who adores her. (The fact that my wife says he is very much like me doesn't hurt either!) Of course, the other part of this two-parter, is that I will be here to walk her down the aisle on her wedding day and that makes both of us very, very happy (as well as many others)! While I can't guarantee it 100%, the wedding is only a year away, and I have done everything I can to give me the extra time I need and I am absolutely determined to make it happen. I wouldn't miss it for the world....... or even for heaven!

I think it is important to think about the time you might have left in this way - as an opportunity to experience things that you really don't want to miss. And be incredibly thankful for the extra time that you, your doctors and medical science have given you. Don't waste a moment of it! You've fought hard to get it, so make sure you use it wisely. And if you're at that difficult stage when you're unsure whether all the pain and suffering is worth it, think carefully what you might miss out on!

My little girl is getting married and nothing is going to keep me from being there and enjoying every minute of it!

September 20, 2011

No regrets?

Having just buried my mother, I have been thinking a lot about whether people die in peace and what it takes for them to have that privilege. My mother died in peace and I think she did because she had accomplished all she wanted to accomplish in her long life and because I was there with her telling her that everything was going to be okay. And, besides, she was ready to die. She was lonely, her health was deteriorating and, honestly, she had had enough. I felt her go and, at that moment, I felt a calmness and peace unlike anything I had ever experienced before. It was as if peace washed over her in a comforting, unseen wave, and I was picked up in it by virtue of my closeness to her. What a wonderful feeling and what an incredibly deserving way to go!

Dying in peace seems to imply that you die with no regrets. And while it may be nice to think that, I don't think we can ever have no regrets. Even if we climb every mountain, cross every sea, build giant corporations or become the leader of the free world, we will have regrets because at the end of our time, we are all just the same and nothing we own can be brought over to the other side to allow us to jump to the head of the line or demand any special treatment. We are just ordinary people and all of us have missed something in life - an unrequited love, an unspoken apology, a small kindness that just never happened. In this busy life we lead, we just can't do everything no matter how hard we try. So we all regret something. It is how we deal with these at the end that determines whether we die in peace, as my dear mother did. As I intend to.

A lady by the name of Bronnie Ware wrote a blog recently on Regrets of the Dying which she is turning into a book (see http://inspirationandchai.com/Regrets-of-the-Dying.html). Bronnie has worked in palliative care for many years and, in her experience, everyone manages to die in peace. But she learned a lot from her patients in the last three to twelve weeks of their lives. While they were able to find peace in the end, they all had things they would do differently. She found several major themes that people had expressed as regrets or areas where they could have done better. I'll just repeat them here without her analysis and give you my personal perspective. Maybe yours would be different.

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

I think we all have to adopt a role to play in life. Something that gives our lives meaning. Something that, at the end of our days, we can look back and say, "I accomplished something. I was good in that role. My life had meaning." While I wish I could have known earlier how much I enjoyed writing and that I was good at it, I didn't, so I made my own choices based on what I knew at the time and became a businessman rather than a writer or journalist. The important thing is that I made the choice myself. No one else. I don't think I lacked courage so much as information about myself.

2. I wish I didn't work so hard.

Okay. Got me there. Part of this is the work ethic I have (partially inherited from my parents) and part of it is just the society we live in that forces us to work hard, spend too much time away from home, all to "get ahead". Can we blame society? I suppose to some extent, but it still comes back to choices. I could have chosen to be less successful. Or I could have chosen a more sedentary vocation (although I probably would have gone crazy). But I did choose to have a wife and children and I wanted my wife to be able to stay home with the children. I would say I chose right and, while I wish I had had more free time, I definitely made the right choice. Right, Dianne?

3. I wish I'd had the courage to express my feelings.

It took me a while to be able to express my feelings, first to Dianne and then to the whole world, but I did make that choice. I did have the courage. If I have any regret it was in not doing it sooner.

4. I wish I had stayed in touch with my friends.

Definitely. Friends are so important. But friends do drift apart for a variety of reasons that are nobody's fault. But it does take two to make a friendship and I could have tried harder. Dealing with cancer has taught me how important "real" friends are and I don't make that mistake any more.

5. I wish that I had let myself be happier.

Yeah......got me on this one, too. Happiness is a choice, although it is often a byproduct of other choices you make. But it is a good guidepost to help in making many life decisions. I have let guilt and duty drive a lot of my decisions in the past, but have learned that this is not a healthy or happy way of running my life. I really try to make happiness a criteria these days, although sometimes it's damn hard. I just don't have enough time anymore to be unhappy or to make critical mistakes.

There are other regrets that many of us could identify. My dad, when I talked to him about death shortly before he died, told me his only regret was that he didn't meet my mother sooner. It was a lovely sentiment and one that I share, but he couldn't have controlled that anyway. So it is not a regret that he would curse on his deathbed. He was ultimately happy with the choices he made and that is what counts. It allowed him to die in peace as well. I think we all might have regrets like that.

Overall, it seems that a lot of so-called "regrets" stem from choices. Maybe we can't go back in time and make different choices (with no real guarantee that we would be better off anyway), bur we can stop the insanity and make the "right" choices now. While we have time, no matter how little we may have left.

So, in fact, it is never too late to die with no regrets. To die happy. To die in peace.

That's the plan, anyway!

September 10, 2011

Bye Mom! I Love You!


My mother died this past Wednesday just short of her 91st birthday and four and a half years after her husband died at the age of 92.  As a son, it was a terrible, although not unexpected milestone in the circle of life.  As someone with a death sentence of my own, it was doubly emotional, yet full of lessons.

My parents had 59 wonderful years together.  When my dad died, relieving him of a very painful existence, my mom was left alone in a modern Long Term Care facility, several hours away from her closest child (me) and virtually blind.  She was a very practical woman who was able to carve out a life that sustained her for four more years.  It was in the last several months that her health deteriorated significantly and dementia stole away her sharp, clever mind.  She became very sad and often said that she wanted to die.

I visited her the Sunday before she died with Dianne, my daughter Caralia and her new fiance, John. In a rare show of clarity, she expressed her excitement about their recent engagement but for most of the time she wasn't making much sense.  When I returned on Tuesday, she was in bed, unable to move on her own and having trouble breathing from a full-blown case of pneumonia.  She was under palliative care with a DNR order, so she was only being kept as comfortable as possible.  She was like this until she passed away the next day at 5:30 pm.  She died comfortably with her near-blind eyes staring up at my face.  She knew I was there.  I held her hands and kissed her while I played Oh Danny Boy on my iPhone near her ear.  It was her favourite Irish song (she was a fine Irish lass herself) and I thank Dianne for the idea.  The song was winding down as she took her last breath.  It was over and was a blessing and a relief for her and for all of us.  I cried but I felt at peace now that she was.

During the time that Dianne and I were with her, I had a lot of time to think about what my mother was going through and what that might mean for me.  Did she die a "good death"?  I hope for that myself, but it made me think about what that meant.  Certainly her moment of death was "good" - as good and peaceful as it could be.  I would like that too.  I want to die quietly and at peace listening to my favourite song.  I want Dianne and my kids with me in those last minutes.  That's part of it, but there is more to a good death.  The key to a good death is a good life and I hoped that my mom felt that she had lived a good life and accomplished all she wanted.   Except for the last couple of months, I think she did.  As for me, I still have control over the things that will allow me to make sure that I have done all I can and that I've made the most of all my remaining time.

I encourage everyone to think about their mortality early because I believe you have to accept the fact that you are going to die in order to make sure you are living life honestly and to the fullest.  It is equally important to talk about death with those who are dying so that you know what they want and to ensure that you have said all you need to say.  I talked to my mom about death when my dad died and I know that she recognized she only had a limited time left and that there really wasn't much more she needed to accomplish in her final years.  More importantly, over the past few visits I had with her, I was able to assure her that she had been a wonderful mother and wife and that she had many people who loved her.  I was able to tell her that I loved her very much and that there was nothing wrong with wanting to die when your quality of life had degraded and you had done all you had set out to do.  During the final hours, I gently told her that everything was going to be all right, that soon she would be free of pain and that she would be with my dad.  I told her it was okay to let go whenever she felt she was ready.  I guess that makes it a pretty good death and it was my great gift to be with her when she passed away listening to the final strains of her favourite song.

Was I right in telling her that she would soon be with my dad?  I don't know for sure that it was true, but it was the right thing to say to her.  It brought me back to wondering again what happens when we die.  I think about this a lot and I will share many of these thoughts with you over the next months.  Just as I hope there is something for me, I definitely hope that I told her the truth.

Perhaps the biggest lesson I took from this experience was the importance of being with your loved ones when they die.  I have never felt closer to my mother.  We shared an intimacy that can only be experienced when you are together in the final moments.  I wouldn't trade this for anything.  And the fact that I was able to share this moment with Dianne made it even more special because we both got to forsee what will take place between us in the near future.  It has brought us that much closer together.

Finally, as I walked down the halls of the facility for the last time, listening to the elderly blind man yelling, "Please, please help me!  Somebody turned out the lights!" for the umpteenth time, I saw how life goes on.  How when we die, only our existence on this plane ceases and everyone else just keeps on keeping on.  We always return from whence we came and hope only that our lives have been good and meaningful.  We don't all have to be famous or go down in the history books.  We can just be a good mother, father, sister or brother; a good wife, husband, grandma or grandpa; and a good friend.

Like my mom.

Rest in peace and say hi to dad.  I'll see you both soon.

September 2, 2011

Fears of Dying.

I'm not afraid of dying. Not now anyway. But I do think I'm afraid of experiencing the fear of dying as my time gets closer. When I start to feel that cold breath on the back of my neck, then I will be afraid. And I'm not looking forward to it.

I started thinking about this the other night. I was watching a TV show (Flashpoint, if anyone is interested in good cop shows) and one of the characters rushed to the bedside of his dying father. When the old man saw his son, he looked at him and said, "I'm scared!". It was a nice scene, very heart-warming, but I found myself contrasting that with my own father's death a couple of years ago. While my dad never said he wasn't afraid, I am convinced that he was very much at peace with the prospect of dying. He had a good life (92 years) but his last few years were not kind to him. He was ready to go and I think he was feeling good about what he had accomplished and what he had experienced during his long life. It was time to go and I truly believe he welcomed it with open arms. Perhaps he felt the fear of the unknown but I don't think he feared death itself. I like to think that he welcomed the relief from pain and the end to a downward spiral that wasn't going to stop. Perhaps for some, it is that sense of relief and release that overcomes the fear. I hope that's the way it will be for me.

On the TV show, the dying man's son said, "Don't worry dad, I'm here.". What he meant, and what I would want to hear from my family if I was in the same situation is something like, "It's okay to be afraid, but it's also okay for you to go now. You've earned your rest and we'll be right here with you for as long as it takes." They can't perform medical miracles, they can't take the fear away, but they can provide the kind of moral support only family can give and perhaps make it a little easier.

I titled this post "Fears of Dying" because death brings out different kinds of fears in the person who is dying and those around them. Lets start by looking at exactly what we are afraid of.

For most of our life, we make choices that help us to avoid thinking about or dealing with death. The biggest fear I think we all have is having to leave behind the wonderful life we've spent so long and worked so hard to create. For all of us, to varying degrees, this includes the material things that seem to mean so much at the time. I mean, who wants to lose that high-end Beemer and the grossly oversized house we've worked so hard to obtain? Those "things" that tell the world we've made it! Hopefully, as we get older, we learn that these things are really not that important and that we can't bring them with us anyway. Life is not a competition where the one with the most toys at the end wins! By the time we are on our death beds, hopefully we are thinking more about the people we are leaving behind, which is the real loss we should be feeling. For nothing is more important than those we love and those who love us.

A lot of fear comes from the fact that we can never know what comes after. We can guess. We can hope. Or we can "believe". We can accept as fact the story that our formal religions tell us based on interpretations of the Bible, the Koran, the words of the Buddah, etc. If you truly have faith, the kind of faith that leaves no doubt in your mind, then you have nothing to fear and, for your sake, I really hope you're right. But regardless, your belief allows you to die in peace and that is a great and wonderful gift.

I don't pretend to know what comes after. I just don't have enough faith. I'm one of those people who need proof and this is not something for which proof is readily available. And even if I chose to accept a particular story, I could never be 100% sure, so I would always be worrying to some degree. For me, I'm not afraid to admit that what I fear is the dying process itself. I am already dealing with chronic pain, which is severe at times, and I know that it will get much worse. I definitely fear that! And along with the pain, I expect increasing difficulty breathing and anxiety - lots and lots of anxiety. I suppose I could be drugged up so completely that I wouldn't notice these things, but that's really no way to spend my last days.

I also think that many people, if they have the time to think about it, may be afraid that their lives have not been fulfilled. That they haven't done enough or been good enough. Maybe that is enough to fear in itself - the fear of not being all you hoped you could be. Or maybe, in some extreme circumstances, they fear that not doing enough condemns them to hell, a very scary place in most people's minds - if you believe in that, of course. Or maybe even if you don't. Cuz you never really know, do you?

Personally, my biggest fear is for my family. For my children who, while grown up, are losing their father and the emotional support and guidance that I can't provide when they are faced with the difficult decisions and crises that life can bring. I know they will be okay, but a father can't help but worry! But Dianne, my dear wife of 34 years, my soul mate, my best friend. I am terrified of losing her and I am terrified for her when I am gone. I know she is terribly afraid of being left alone and of growing old without someone at her side who really understands her. I feel so badly for her but I know in my heart that she will be "okay". She is smart, people love her, and she has the ability to be very independent when she needs to be. And most importantly, she has a strong and caring daughter and future son-in-law who are committed to being there for her. But we have been together for so long, and it's been so good, that its gonna hurt real bad.

And while I have my own fears of dying, my death will also arouse fears in others. Clearly, my family has to deal with their fear of losing a husband and a father and I am so, so sorry to be doing that to them. Perhaps not so obvious are those people who feel uncomfortable talking about my death. For them, thinking about my mortality makes them think about their own, long before they want to. It scares them. It arouses fears that they wish they didn't have to deal with. Well, I'm sorry about that. Please use it as an opportunity to really appreciate what you have today and make yourself a promise that you are going to make the most of every second you have. If my death can help you do that, then I've accomplished one more good thing.

While it's impossible to avoid the fears you have for your loved ones, I wish we could learn to not fear death itself. I wish that we all could think about death as part of life. As the beginning of another journey rather than the end of all things. But that requires belief, and faith. And I'm afraid that many of us just aren't there yet.

August 23, 2011

Thanks Jack!

We have lost a great man. Jack Layton, long-time politician, new surprise Leader of the Official Opposition, gentle man and friend to many has died of an unspecified cancer, just after being treated for prostate cancer.

It made me very sad. I never met the man personally but, like many, I felt like I knew him. Wen I first heard that he had prostate cancer, I immediately felt the same bond I feel with everyone who shares this disease. We joke about being welcomed into the club that no one wants to join. He is gone now, but there are lessons in every premature death. What do we thank Jack for, other than his tremendous contribution to Canada?

In his final letter to Canadians which he wrote two days before his death, he addressed part of it to me (and all other cancer patients). After his initial thank you's and admission that he wasn't going to make it, he wrote:

To other Canadians who are on journeys to defeat cancer and live your lives, I say this: please don't be discouraged that my own journey hasn't gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.

This is a great message of hope and one that all people with cancer or other chronic or terminal disease needs to take to heart. It's so important for us to have hope because the moment you lose hope is the moment you begin to die. As I've commented in other posts, even if you decide to stop treatment (based on educated reasoning) you are not giving up hope. You have just decided to try to enjoy your remaining time. While my disease is incurable today, it may not be in a few years. Even though it might turn out to be too late for me, I will never give up hope. And while my future may be limited, I can look to the future for Dianne and my kids and hope that their lives are as rich as mine has been.

Much has already been written about Jack as befitting a man of his stature and accomplishments and I am pleased that much of it is about Jack the person, rather than just Jack the politician. Interestingly, one article I read talked about the inappropriate use of terms like "losing the battle", "fighting the cancer". I've posted about this too, but it's refreshing to see the debate starting in the press, even in a small way. As my friend and well-known oncologist Robert Buckman said in the article, "The idea that he was waging a battle which he lost demeans him." There is an unintended implication that those who "lose the battle" may not have "fought" hard enough. Similarly, calling someone a "survivor" may suggest that they "fought harder" than someone who dies (if anything, it may be be the reverse). Some may think this is just being overly sensitive, but you need to see it from the perspective of the person with the disease.

One of the comments made in response to this article was from a man who had cancer when he was 17. He said, "I can't say I did much myself to fight it. A couple good oncologists and some pretty harsh chemicals fought the cancer, I just showed up and was along for the ride..." And farther on, "I didn't survive cancer. I survived the treatments, and they made my cancer go away."

I haven't stopped "fighting" and I don't think of myself as a "survivor". That's just me, but perhaps we should be a little more thoughtful with inspirational leaders like Jack.

A final point I want to make concerns the fact that he wouldn't tell us what his second cancer was.... the one that killed him. Perhaps he thought that by announcing what it was, people might become convinced he wasn't going to make it. Because of this, there were many people who wouldn't have had a chance to have "that talk" which I've always said is extremely important. But we must recognize the position Jack was in. As a public figure, the press would have focused on the disease and held an unsolicited, unappreciated and inappropriate "death watch". They would would have had him dead sooner than he was. Unfortunately, this would have overshadowed his accomplishments and the positive coverage he and his political party continued to have throughout.

There is no conflict here. As I have stressed in previous posts, the decision of who to tell and when should always be made by the person and not by someone else. Jack had to think about the impact this would have on his party, to which he had dedicated his life. And I am sure that those he really wanted to know and to talk to were made aware and they and Jack had those precious opportunities that mean so much. And while I'm as curious as the next guy, he made the right decision. We'll likely find out shortly.

Above all, the biggest lesson that Jack gave us with his death is the remembrance of who he was and what he stood for. His love of life, the love he had for his family, the love he had for his country are all things we can all aspire to. So the great lesson of his death is his life. Who knows what his legacy would have been if he lived longer, but the one he has left with us now can change us all. As he said at the end of his letter,

My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world.

That's something we should all aspire to.

With thanks to the Toronto Star and The Globe and Mail.

August 16, 2011

Making choices.

I just finished reading a great book called "DNR - Real Stories of Life, Death and Somewhere In Between" by Lauren Jodi Van Scoy MD. I didn't know what to expect, but the real life stories were extremely powerful and made me think about choices - the choices we make and the choices people make for us - and how important this is when you are faced with a deadly disease.

The first choice you make is whether you want to talk about what's happening to you and who you want to tell. In my last post, I wrote about how important it was to talk about it, but it's up to you to make the decisions about when and who. Your family should always come first and, for some, it may go no farther then that. But most of us have friends, co-workers, acquaintances or others who should probably know sometime but it should be left to you rather than an email blast from a well-meaning friend who likes to be the first with all the juicy gossip. We all know people like that, but this is pretty personal stuff, so it really should be you. Once you've told others, let them decide when they feel comfortable talking to you about it. Some people may not be able to because it upsets them too much and that's okay; that's their choice. They will find a way to express themselves when the time is right for them.

The next choice is a big one. It's the choice I had to make whether to continue treatment or to stop. For me it was all about quality of life, and I've written plenty about that. I just want to make it perfectly clear that this is not a choice between fighting and giving up. I have fought this disease long and hard and I have many more battles to fight before it finally kills me. I have just decided to discontinue optional treatments that cause me to have severe side effects with no chance of cure and it was the right decision for me in my situation. It may not be for others. Others may choose to try anything they can get their hands on, hoping for a miracle. They may call that fighting, but it some cases it may be a form of denial (see my July 25 post for further discussion on this). But it's their choice and no one else should be making it for them or pressuring them one way or another. Whether you choose to fight aggressively, to accept that there is nothing you can do, or to live in denial, I wish you all the best.

There is a very important wrinkle to this that needs to be discussed (I've seen a number of blogs on this recently), and that is the role that doctors play in the decision making process. While doctors don't and shouldn't make the choice to continue treatments in general or to undergo specific treatments, they have a great influence over patients and their families. Many doctors and other health care staff don't like to tell people that they are going to die, either because they don't like to be the bearer of bad news or they don't want to be responsible for dashing all hope. Or maybe they themselves are hoping that the next drug or surgery will work, or the next one after that. Well, I don't want false hope and I don't think anyone should be given false hope, especially if it means spending your remaining time in misery. These are critical decisions affecting a person's remaining life and they should be given all the information available so they can make the choice themselves. Doctors should be compassionate but factual. We patients need to know the numbers, the risks, the alternatives and the implications for our particular situation (as opposed to averages from clinical studies) so we can make the choice that's right for us. Even if it ends up killing us sooner!

Most importantly, there are the choices around end-of-life care. While we are still of sound mind and can communicate, we need to decide how we want to be treated when it gets near the end. Do we want to be at home or in a hospital or hospice? Do we want emergency or palliative or hospice care? Do we want to be kept artificially alive on machines? If our heart stops, do we want CPR? Who do we want to make any final decisions for us if we are not able? These are critical choices that should be made by us and not by doctors and nurses who have no idea what we want and therefore have to do whatever it takes to keep us alive as long as possible. It's not fair to us and it's not fair to them. So I strongly urge everyone to look into living wills, power of attorney for personal care, DNR, etc. and talk to your family so everyone knows what you want to do. We all want and deserve a good death, not one surrounded by questions and confusion where our loved ones are forced to make monumental decisions that they're not prepared for.

And finally, there are the choices that you can make in advance about whether you want to be cremated or buried, where you would like to be buried or have your ashes scattered and what kind of party, wake, funeral or celebration you would like for your family and friends to remember you. These shouldn't be difficult and, if they are made well in advance, they shouldn't be upsetting. Once again, you can ensure your wishes are carried out and save your loved ones from making decisions in the dark. Let it be your choice.

I really don't want to make any specific suggestions in this post. I just want you to think about these important things in advance and make the choices that you want to make. Don't make your family, your doctors, or anyone else try to guess what you want. It's not fair to them, it adds to their grief, and it takes away from the celebration of your life, which is what it should be all about.

I know what I want! Do you?

August 8, 2011

What's in a name?

What's in a name? Sometimes a lot. When you're dying, the terminology you use can make a big difference in how people understand your situation, how they treat you and even how they feel inside themselves.

With cancer, it can be even more confusing. Some people automatically think that cancer is a death sentence, particularly if they have had several cancer deaths close to them. In that case whether its "terminal" or not, they figure you are going to die some time. At the very least, they are not surprised when they hear that you are now terminal. With so many people surviving cancer, others figure that you're probably going to live and even if they are told that it has metastasized and can't be cured, they don't really think you're going to die. I recently had a relative say to me, "Ha! They've been saying you're going to die for so long now.... you'll be just fine!". I was so shocked, I didn't know what to say to her.

When my cancer first recurred, I had one chance to stop it with what is called "salvage radiation" (another nice expression). When it was clear that didn't work, I started telling people that my cancer was now "incurable". But with no real time frame to go on, it seemed a long way off and I think that most people thought I would still be okay. And, yes, some people made a point of telling me that. Even when my cancer metasasized, people didn't suddenly look at me like I was going to drop dead. It was just more of the same. I don't know why this is, but perhaps our fear and lack of knowledge of cancer causes us to "park" the idea that the person is going to die until they are on their death bed or they get an invitation to the funeral. It wasn't until my oncologist gave me an actual timeline of 12-18 months that people seemed to understand that this was really happening. It was then that I started to use the term "terminal", which seemed to have a bigger impact. But even then, there were a few who felt it necessary to point out examples of people who lived way past their initial time frame. And while I know that they meant well - trying to give me hope - it seemed that they believed it would be the same with me. So I have to wonder when it is that people finally come to terms with the fact that someone is going to die so that they can both deal with it. For some, calling it "terminal" rather than "incurable" seemed to make a difference. For others, hearing a specific time frame made it real. The point is that knowing and accepting that someone is really going to die allows us to talk about it, come to terms with it, and to begin the important step of beginning to mourn the impending loss of a friend or loved one.

Another term I have some difficulty with is "survivor". Those who study these things tell us that we join the ranks of survivors as soon as we are diagnosed (usually with cancer). Generally, people think of surviving as having "beat" the cancer. While it is good to think that it's gone for good (which it is in many cases), it tends to ignore the fear that all cancer patients have of a recurrence, a fear that can have deep psychological effects on the survivor. In my case, I happily accepted the mantle of survivor after my initial treatment, but once it recurred, and particularly when it metastasized, I never felt comfortable with the word. I was not going to survive this disease and I knew it, so I didn't feel comfortable being introduced as a survivor. Perhaps others take comfort in the term because it represents the hope of a victory over death. For sure, people generally don't want to think about death or the often horrendous things we must endure to become "survivors". I no longer want to be called a survivor. I feel like a fraud walking in the Survivors Lap at the Cancer Society's annual Relay for Life, although I do it to support others who have truly survived.

It's interesting to note that even some metastatic cancer patients with zero chance of cure, still think they had a chance (52% in one study - see link to the right). Is it hope? Denial? Whatever it is, it's important for medical staff and family to know both what the reality is and what the patient is thinking.

My key premise in writing this blog is that it is important to think and talk about death. This goes for everyone, but particularly for those who know they are close to the end. In no way should this be the only topic of conversation with friends and family - it's important to focus on getting the most out of every minute we have left - but IMHO it is essential for anyone in this situation to talk it through and deal with any fears, regrets or unresolved issues so they can go in peace. It is equally important that those close to you know what is happening to you, how you want to be treated now, and any directions you have for end of life arrangements. It is wrong to avoid the subject. If everybody did that, then there would be no one for the dying person to talk to about one of the most important events of their life. You can't hide an elephant of this size in the room. You may think you are protecting them, but you may in fact be robbing them of something very important.

So to summarize, if you know someone who is "dying", or is "going to die", or is "incurable", or is "terminal", you need to make sure you know what's really happening, accept it and be prepared to talk about it, no matter how uncomfortable it is for you. It's always better to be open and honest. Be the friend they need and show them the love and respect they deserve.

Shoot the damn elephant!

Don't we owe them that much?


August 5, 2011

What will I miss?

With an expectation of leaving this world within the next year or two, I think a lot about where I'm going, and I will certainly be blogging on that subject a lot.  Naturally, I also spend a lot of time thinking about what things will be like for my family when I'm gone.  But I also think a lot about what I'll be missing over the next 30 years or so, beyond the obvious.

Of course, I will miss everything associated with the lives of my wife and children, particularly things that fathers and husbands should be participating in.  But outside of these, which are like a black hole in my vision of the future, there are other more simple and even mundane things I will miss terribly..... well, at least a lot.

I love movies and now that the technology has advanced to be able to bring all sorts of classic comic characters, adventure heroes and science fiction epics to the screen so realistically, I know I'm going to miss going to the movie theater with the smell of popcorn, the upcoming movie trailers and seeing my childhood favorites come to life.

I also love to read and get tremendously excited to download the latest works from Stephen King, Iain Banks and many others on my Kindle.  I'm going to miss that pleasant anticipation and the satisfaction of delving into a new story that promises to captivate my imagination and, for a time, take me into another world.

When I was young, I was really into all forms of science and science fiction.  It was thrilling to follow the first men in orbit, the moon landing, the launch of the space shuttle.  I fully expected that by the turn of this century, we would have space stations, moon colonies and routine trips into space for civilians.  Well, things didn't happen quite like I hoped but now, for sure, I'm going to miss all of those things.  Even if I lived another 30 years, I still might not see them, but I nonetheless feel a sadness that I will miss it all.

I will also miss some of the simple things like sitting out on my back deck on a warm summer day, feeling the breeze gently caress me while I read or chat with Dianne or our friends.  And how about diving into a bowl of ice cream with caramel sauce (like I just did) or having a cold drink of pop on a hot day.  Or waking up the morning after a huge snowfall and seeing how beautiful the world outside is while I'm warm and safe inside and don't really have to go out at all.  Staying up too late, propped up in bed, just talking to Dianne about "stuff" with our dogs curled around our feet.  And that wonderful feeling I get when Dianne looks at me with a love that has grown stronger over 34 years of marriage.  And even that dumb look of unconditional trust in my dogs' eyes when they look at me sometimes.  Priceless.

As a kid, I spend much of my life living on hydroelectric projects "in the bush" and learned to love the great outdoors.  Later, every summer for many years, I would kayak and camp with one or more of my close friends in some of the most beautiful parts of the country.  I can't physically do that any more, but I can still take trips to cottage country and, on very special occasions, be invited to stay at a friend's cottage where I can revisit the water, the trees, the beauty of nature.  I am really, really going to miss that.  I'm not truly at peace unless I'm in that kind of environment.

But then again, maybe that's what heaven is like!  Wouldn't that be a great place to spend eternity?