You don't have to lie to me

| 28 Comments | No TrackBacks

Bodie Ghost Town Rusty Car PSIMG_4515DEI'm seeing a doctor at the Cancer Agency for a followup appointment today, almost exactly four years to the day since I first found out from my family physician that I have cancer, in January 2007. Back then I was freaking out, but nevertheless I didn't think the disease was as severe as it turned out to be. No one did. We thought we'd caught it early, but we hadn't.

When I left work for my first surgery in February of that year, I thought I might be gone a few months at most. I've never been back, and I won't be. The company has had numerous employees join, work there for a pretty long time, and leave again, all in the time I've been away. (Indeed, there aren't very many people remaining from when I did work there.)

There was a time when I counted the days I'd been under treatment, but I stopped that ages ago. I simply lost count, but I can calculate it out. From my arbitrary Day Zero at the end of January 31, I've now been a cancer patient for 1438 days. Or if you take my diagnosis on January 8, 2007, then I'm now at Day 1461.

In that time, lots of other people have developed cancer—such as Steve Dorner, creator of the Eudora email application. Some—including my online friend Jean-Hugues in Paris, France—have gone into remission or been cured. Some, like actor Patrick Swayze, were diagnosed, had treatment, and then died from it, all while I was still chugging along.

So my cancer has neither been a worst-case scenario of swift and painful death, nor a best-case scenario of quick treatment and cure. I've managed to stay alive for four years, though my chances of reaching five in 2012 are slim. I haven't become an expert on cancer as a disease, but I have become an expert at having cancer.

And having cancer is strange, because it is my own body betraying itself. The tumour cells aren't invaders: they are my own, with my DNA, malfunctioning so that they've lost the ability to be productive parts of my physiology. They won't stop dividing and multiplying, and they do nothing else. So far my medical teams and I have kept them from overwhelming the rest of the cells in my body, so that my lungs and heart and kidneys and liver and intestines and brain and other organs are still working—mostly.

But eventually, like a car that's rusting out, things will start failing, and then I'll die. I'm a lot less angry about that than I used to be, because being angry for four years would have been terribly corrosive in its own way. It's been tough enough emotionally already, on me and on my family.

Some of the people I know continue to be convinced that I'll recover somehow, to say that of course I'll still be alive next Christmas, to imagine that I'll get better, or at least continue chugging along some more as I have so far. But to me, they are like the many people who continue to hope that I'll have some sort of religious conversion, or that I'll suddenly believe in their evidence-free miracle cures. That is, they're doing it for themselves, not for me.

Saying that of course I'll still be around next year is a lie, and I don't like lying to myself, or being lied to because it's supposed to cheer me up. It's possible for me to survive another year or two, but it's unlikely. I could also become a famous rock star or win the lottery, but I shouldn't expect either one, or live my life as if I will.

If you want to say that I'm not near the end of my life, you may do that, but understand that it's for your benefit, and to allay your own fears, not mine. I'm the one who has this body whose cells have gone wrong, and I can feel what it's like. Let's not deny it and pretend that I'm not, okay?

28 Comments

I genuinely feel VERY sorry for you. Is there anything that we (people on the Internet) can do to help you?

It's true, IMO, that unless you are dieing, you really have no clue. We are all afraid of death and it's helpful for us to believe that God, a miracle cure or positive thinking will save us. If possible I hope that when the time comes (and I can only imagine that this would be very difficult given the pain and drugs and fear) leave this earth in a state of peace or acceptance surrounded by loved ones.

I hear you Derek. I think most people want to encourage than be discouraging. As you said, you could have taken a negative path in the last 4 years and then the positive energy you brought forward would have been missing and not helped to bring you to where you are today.

And, of course, no one wants to face their own mortality any sooner than they have to so it is mentally soothing to be hopeful that "someone else" who has cancer might recover and go on to live a long time. It gives them hope if the same thing should happen to them or a family member.

But, for someone with a family, it certainly does no one any good to ignore the problem and pretend everything will work out. Like you said, at some point, it can be more positive to be realistic.

You've been dealt a bad hand or bad gene and it sucks. You should not have to pretend to be positive or pretend to be in denial so that others are comforted.

Thanks for continuing to share your experience in living and dying with cancer. I really appreciate hearing from your point of view, as it helps me learn what things may be good vs lame vs offensive.. and hopefully I can speak more from the first category and less of the other two in the future!

Could it be that some of these people are just trying to be polite? Wouldn't it be worse if they said to your face, "Oh, I would include in the planning for the 4th of July party, but you'll probably be dead by then"?

Derek, you won't get any pity, or and "I am sorry for you" or any lies. What you will get is an honest-to-goodness big hug and a big thanks for taking the time to share your experiences with us. Your time line in leaving a legacy has become shorter than the rest of us...and that sucks. But know that, you are teaching the rest of us about what it means to be alive and that is so precious.

Derek, I know that you are a champion of Truth, and I think that can be a good thing when the subject is black and white... but, on the whole, there are very few real "truths" in this life, and whatever you, as an individual, believe strongly to be true will be true for you, as an individual. So... pick your truths carefully.

Dammit, I should have previewed! I didn't mean to be so insane with the italics at the end. :^/

I think you summarized it very well (and Lorraine Murphy aka Raincoaster) also said something very similar - the "oh you'll be there" is to allay OUR fears, not YOURS.

As Lorraine said in a comment on your post recently, it's almost like WE want YOU to fight OUR fight against death, on OUR behalf. And that's so wrong on our behalf, because we fear death and we are not the ones facing it the way you are. After reading that comment from Lorraine and this post from you, I think I begin to understand just how much I have been fearful of truth, sometimes.

As far as I am concerned, I am just grateful I have been lucky enough to know you for as long as I have and your friendship has left me with an amazing legacy. That IS a truth.

Derek, your blogging helps a lot of people - not just you.

The thing about life is that no-one gets out alive. People who behave as though they are not going to die are lying to themselves. Yet we see every day behaviour that is clearly putting themselves - and others - at needless risk. And commercial interests ensure that dangerous behaviours that generate corporate profits are allowed to continue. Tanning beds and smoking being only the most obvious in the context of this discussion.

Given that none of us knows when we will die, how we live is what is important. Pretending that death is somehow avoidable - or can be ignored - helps no-one.

Thank you for having been so open and sharing with your experience and feelings over the last four years Derek! You are right, deep down we all want to think that everything will be okay, but in the long run it helps you and us to hear how things are in a truly honest way.

Undoubtedly it will be a tough road for you, Airdrie, the girls and the rest of your family this year. Know that you have touched and inspired us out here with your openness and strength. I am glad that you have been able to live with the cancer for the last four years, particularly for the girls sake, and judging by your posts and photos, in a very graceful yet fun and vibrant way. Though we haven't seen each other in years, you (and Airdrie) are in my heart (oh those crazy... strike that... neurotic ;) rock & roll days).

All my best for this time to be filled with comfort and love.

"on the whole, there are very few real "truths" in this life, and whatever you, as an individual, believe strongly to be true will be true for you, as an individual. So... pick your truths carefully."

Um - no. Just no. This may have some merit on a psychological level (ie being angry can be individually corrosive, as Derek points out in his post), but as written seems to suggest that somehow believing you will or will not die will affect your outcome. While it may give us a nice sense of personal agency to believe this to be the case, there is no evidence to suggest anything of the sort. Moreover, such beliefs tend to have the unfortunate (although not consciously intended) effect of blaming the sick for the progression of their own illness (and I don't mean the obvious things like smoking). Which is rather shitty.

Hang in there Derek - I certainly hope you will still be around for a good long time, but I won't say more than that.

Oddly enough, our lengthy evolutionary adaptation has still left us ill equipped to deal with our own mortality. For some reason we are simply not programmed to deal with accepting the impending arrival of our own, or a loved one's, death. I find this curious because it is the one certainty of our lives that we all share.

Fortunately, you are the exception to the rule. Perhaps the necessity of your situation has forced your rationality to make it so.

You're right - probabilities say that you will not be around at this time next year. And we will be the poorer for not having your ongoing clarity and candour available to us then.

Hi Derek,

You know, I knew you had had cancer, but I didn't actually realize you had been living with it all these years, until today when something on Twitter sent me to your blog. I've been moved to tears several times reading your posts. I am appreciating your bravery, your honesty, your willingness to tell it how it is for you, without sounding bitter or angry and without shaming those who have responded in less than helpful ways. I'm sure you've felt all those things over the 4 years - you're human after all - but they are not what shine through.

It is terrifying for the "healthy" among us (well, for me) to be faced with the reality that this health is a gift, a blessing, and one that can be taken away without warning, without reason. I know that confronting this fills me with an awful dread, and a subsequent desire to keep that idea out of my awareness. But looking it straight in the face is also strangely a relief. And reading your words, feeling your acceptance, remind me that I too would find a way to come to terms with it, if it were to happen to me.

I will be very, very sad to hear news of your death. Very, very sad for your life and daughters, who I imagine will miss you dreadfully. I hope these last months are full of whatever you need to feel as complete as possible.

Thank you again for sharing.
Sarah

Thank you for sharing your thoughts, Derek.

I am sorry to hear that people are belittling your situation for their own comfort.

I hope it's not a large number of people and not your inner circle.

I often get the feeling that people are kind of nervous that I'm going to drop dead right in front of them... or at least that they feel a bit awkward around me because (i might not know it but) I'm not long for this world.

Or maybe it's my imagination -- because they don't explicitly *say* anything they just seem to act overly-normal with me and have nothing to say and seem a bit surprised that I'm going about my life fairly normally.

I guess we are lucky that illness and death are foreign to most of us for most of our lives and that's why we don't know how best to react.

Wishing you and your family well, as always.

GAH.

on the one hand, as a person who took care of family members who died, and who wished just once, my mom especially, could have had a moment of "THIS IS WHAT IS HAPPENING" pass between us or amongst my family if only to make ME not feel insane for being the only one who saw what in fact WAS happening, i feel you.

and on the other hand, even i having been around situation such as yours, still feel the polite, denying phrases want to pop to my lips when i encounter friends or acquaintances in such situations (or in my job. duh.).

i just looked over at my beyonce (rhymes with fiance and that is such a goofy word anyway) and commented on your blog after he said he read it today and found it sad, that i always wish i had hooked up with you and the girls somehow that january just after your diagnosis! perhaps in disneyland! and i don't know when i can put a trip to vancouver together... sigh...

your words mean a lot, just you shaing them as honestly as you do. you and your fabulous wife have inspired me in so many ways (--->fangirl), and in turn, gotten me "out there" and making connections and meeting people.....

anywho, at the risk of being strangely maudlin, the saddest thing in my life was that my dad died, alone, in a car accident when he was 29. i think my whole life was about not letting that happen to people, other people, my people..... the greatest gift i ever recieved and the best and worst moment of my life was being with my mom when she died. i can't pretend to understand all that your family goes through or your kids are dealing with and how everyone is coping, but your commitment to being present, truly present, no matter what is such a gift to them, and to all of us who know you or hear you or read you.

ok, enough from me. i still wish you guys could make it way out east! :)


annnnddddd i just typed "cancouver"

also, your google ad is "cancer treatment options"

When I was 8 my mother died without any knowledge on my part that this may happen, although there was a high probability that it would occur. At 18 my father died and again, amazingly, I was unaware that this was a possibility although I knew that he was quite ill. Both died of cancer . This was many years ago and in those days doctors never told you the worse for fear it would upset. Now the reverse is true and doctors give you the worse case scenario.

As bad as this may sound, it has enabled you to give your girls the knowledge that I wish I could have had, of knowing they had you for a limited time only and to appreciate all that you have to offer and have given them in life. To store memories of you and your family life together that will live with them forever and guide them as they grow and eventually have their own families. From what I have read on your blog I feel that they are very fortunate to have you as a father, even if it is for a shorter period of time that one may expect, but your honesty in dealing with your illness can only make them stronger as they grow into adults.

I am sure it has also given you the opportunity to appreciate all that they have to give to you without getting hung up on unimportant incidentals that often get in the way of our feelings for family, and to truly appreciate and enjoy them as they are. I wish you all happy memories and quality time together. Thank you for your frankness and insight to this terrible illness.

When my mother was 18 her father died suddenly of a heart attack. When I was 15 my father died slowly of pancreatic cancer. Mom and I talked and she felt the slow way was easier for the people left behind. Not that it wasn't really hard to watch my father get weaker and die 7 months after diagnosis, but at least he had time to prepare for his death and get things in order so things were easier for my mother and she had the minimum legal hoops to jump through. It also allowed us to say the things that we needed to say, so that we wouldn't have those regrets later.

He was very straight forward about it. When he was cleaning out his office at UBC, someone, who didn't know of his condition and thinking that Dad was retiring or maybe moving on to another university, asked him what he was going to do now. My dad said, "Die." When he told me that I laughed and Mom said that was too hard a thing to say to the poor guy. But it was the truth.

Losing my father as a teenager had a profound effect on my life. I'm missing about two years from my life from that time. I don't know how I got through school since it was a blur and I went "splat" on my desk and slept through every French class in grade 11. My body would just shut down because being unconcious was the only way to cope sometimes. I remember how angry I got when someone said to me, "Well, it's been 3 months so you must be over it by now." Ah, no. and obviously totally the wrong thing to say. It's been 26 years and I'm not over it. I still cry, and I don't go to funerals or memorial services if I can help it because I'm a complete mess. I think of my father every day and I'm thankful for the time I had with him. I just wish it had been more.

Superlove

We just hate to see you go.

Thanks for your honest, interesting, gut-wrenching, funny and heart-warming writing.
When your story ends I will miss you.

What balls. I mean it, what great, pumped with blood cojones. One thing that doesn't die with our bodies is the inspiration we leave behind with others. I don't think there's a higher calling, and you personify it.

You sir are a true hero.

You children will remember you for being real, strong and brave. I"m sorry to hear that your journey here will end sooner than later, but so loving you for being realistic about it all and not in denial.

I've been at the receiving end of losing a loved one to cancer, and if I can say anything to your family and children that you will leave behind, it would be this;
"It doesn't get easier, it just gets different".

I know it doesn't sound pleasent or helpful, so take from it what you will.

When you leave this journey, although I've never met you, I'll miss you. Your blog. Your wit. Your strength.

Live big sir for your remaining time here.

Much love and understanding.
xo
Samantha

Since I know you, Derek, it's the sadness we feel when we see you and know you are dying, especially since I know your kids and know you as a father. You have been incredibly direct, and that has been helpful for guiding us on how to act. I've wanted to say you will get better, just because of the sadness of it all! Your blog is great!

No TrackBacks

TrackBack URL: http://www.penmachine.com/cgi-bin/mt/mt-tb.cgi/179