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."


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.