The endgame

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End GameIn the next couple of years, about 100 million people will die around the world—of old age or other natural causes, in accidents, of infections, from pathogens or poisons, in wars and terrorist attacks, from congenital defects, in fights, of suicide, in natural disasters, from medical errors, of exposure, by misadventure, by assassination or murder, and of various diseases and conditions. Between 10 and 15 million of those people will die of cancer. Today I'm telling you that I'll be one of them.

It's good that Thursday, November 25, wasn't Thanksgiving Day in Canada (it was in the U.S.), because that's when I found out. Doctors are notoriously reluctant to predict life expectancy, and for good reason—they're often wrong. But, with my wife Air in the exam room at the B.C. Cancer Agency with me, I drew it out of my oncologist, Dr. Kennecke.

"Do you expect I'll still be alive to visit you here in two years?" I asked, straight up.

"Honestly, no," he said.

There was more to it, of course, but that was the moment. It was no surprise. It's why I had asked Air to come along—she hasn't needed to join me for a doctor's appointment in a long while, but this week I needed her there.

How do I know?

My chemotherapy isn't working anymore, and after almost four years of different cancer treatments, standard and experimental, I've run out of new things to try. My tumours are still growing in my lungs, chest, and abdomen, so this week my doctors and I have agreed that I'm going to stop taking the drugs. I've probably got about a year before I die, give or take.

I discovered I have cancer at the beginning of 2007. Since at least 2008, it's been clear to me, after radiation, surgery, chemo, and everything else, that none of the treatments was going to destroy it or cure it. I've never been in remission, and with every CT scan and blood test it's been plain that the number and size of the metastatic tumours in my body has nearly always continued to increase, slowly and steadily. The direction of the arrow has been obvious—to me, to Air, to our two daughters—for a long time.

Chemo is never easy. Coincidentally, I discovered a couple of days ago that it was first developed from World War I bioweapons like mustard gas. Since late this summer, the latest cocktail has certainly felt like that. It's been brutal, probably doing more harm than good, not poisoning cancer cells any more effectively than it hammered the rest of my tissues. That led to side effects I'll be glad to reduce, and the weight loss I complained about last time I posted here.

My body is broken and failing. Precisely how long it will hold out, no one knows. But it won't be very long.

What happens now?

Importantly, I'm ready to accept it: I need to prepare to die. That's not giving up, it's facing reality. Anyone who knows me well, or who's read this blog for any time at all, knows I prefer to do that than to be deluded or in denial.

As lifespans have soared, our society has become lousy at dealing with death. I regularly receive emails from people I don't even know, who seem desperate to tell me about a very specific miracle treatment that I simply must take. They have good intentions, but it also feels to me like they refuse to believe that an otherwise fairly healthy 41-year-old man can get cancer and die, and there's ultimately no way to stop it. It seems to offend how some people understand the world.

Yes, I've looked into the options those people suggest, and the evidence for their effectiveness just isn't there. Many of the purported treatments would bankrupt my family and further disrupt our lives, almost certainly for no good purpose. The truth is that I have cancer, and it's going to kill me, soon.

I don't yet know exactly how things are going to go. The Cancer Agency has teams of people to help once patients (and our families) determine that we're terminally ill. I'll need more pain medications with time, and stronger ones. Since most of the cancer is in my lungs, I'm guessing I'll need supplemental oxygen eventually. At some point I may have to move into a hospice or check into a hospital permanently.

I don't play chess, but it includes the useful concept of the endgame, when tactics and strategies change because the remaining pieces are few, and the players know the game is almost over. That's where I am, so I know a few things.

As I predicted, our dog Lucy will outlive me. This might be my last Christmas, or I might see one more. I may or may not reach my 42nd birthday next June. I've probably bought my last car and pair of eyeglasses, but my final carton of milk and cup of coffee are some way off yet.

Facing my own death isn't easy. It's tremendously hard for my immediate family, for my parents, for my aunts and uncles and cousins. It may be harder for them than for me—after all, I know I won't have to deal with the aftermath. I'll be dead, and they'll be alive.

Still, I've had a lot of time to think about death and dying since the beginning of 2007. My wife and two daughters—my three wonderful girls—have talked a lot with me about it too, and we'll keep doing that. I'm not ready to die just yet, but I'm ready to prepare for it.

Off we go.

130 Comments

Derek, you're just about the bravest guy I know. I share your atheism, and so I can't say anything reassuring about the afterlife, but I hope you make the next two years the best you've ever had. The world is a far better place because you existed within it.

Derek, you've got the right attitude. Enjoy your family, get some semblance of comfort back once you stop the chemo, embrace the painkillers you need and keep on blogging. You've come this far from 2007. That's saying a lot.

Derek,

You don't know me, I am friends with Glenda (WH) ... your post is beautifully written and, while I don't share your timeline nor disease, your sentiments in this post very much reflect my own. May you live every moment. Best wishes.

karen

Your words will serve as great comfort and a source of strength for many people you will never know, and a record for your girls and others who love you. Please write as long as you can, knowing the gift you give so many of us out here in the dark. We all surely follow you, some more closely than others.

Oh Derek. So sorry. Wish I was over there with you guys. xxxx

Derek,

I don't know what to say, other than the fact that I am so very sorry to hear these news, and that I hope that the time that you still have on this planet, you and your family will make the best of it. Because you're an amazing human being and I'm honored to have you as my friend.

I believe I speak for other readers and friends that your writing continues to mean a lot to *us*. We can't feel what you're physically going through, but your blogging helps us understand life and death, inspires us, and keeps us that much closer to you for as long as possible. We're not reading out of a desire to be morbid. We keep reading to grow closer to you and thanks to RSS we'll be with you through to the end.

I've been part of end-of-life decisions with friends and family, but I've learned more from your blogging since you first announced your diagnosis than from anyone else. Chemo is awful, and when it's just not working you have to say Stop. Perhaps you'll actually gain some weight in the short term and feel a bit better for a little while. I sure hope so. You deserve at least that.

I had been sensing in your recent posts that you were writing some of your best and final thoughts.

One thing we are assured of in life is our departure. Your courage, thoughtfulness and insight are beyond words.

I wrote on your Facebook wall and it should be here, your words continue to make me more grateful for what I have in the love and health in my life.

Most incredible with your writing is your children will forever have your words and thoughts. They will read comments by people like us whom you have shared with on the Internet. They will see what a tremendous man of character, strength and inspiration their father was to those he never met.

Although we have never spoken or met, I feel like I am losing a friend. Thank you for sharing yourself and your journey.

I continue to be amazed at the way you write about your situation. I want to thank you for not making this a "cancer blog" - I was interested in your take on things before your diagnosis, and continue to be interested afterwards. You're teaching a big lesson here I think, what defines a person is their collection of thoughts and feelings, not a disease that they happened to come across.

Your openness in writings here have helped me understand a bit more of what my father went through when he faced the same situation years ago. He was a man of a generation that didn't speak of these things, so to me, in many ways, you've spoken for him or at least given me some insight into what he faced. For that, I'll always be thankful to you.

May your journey go as well as these things can.

Derek, you are a strong man and an inspiration.

What can we on the web do to help you and your family prepare?

Derek, in this difficult time, I wish peace for you and your family (as much as possible).

Dammit Derek!

I wish I didn't have to read this. I hate that I agree with everything you said, because it's the same decision my Dad made last year after fighing lung cancer for 3 years.

We can all play CouldaWouldaShoulda, but the important thing is that you're at peace with this decision.

Your Twitter & web "family" is here for y'all.

Erik

First reaction? "Oh, man."

Second reaction? "That's what grace is."

Derek, thank you for your honesty and your courage. Thanks for all you have shared on this journey. I think of you and your family often and I wish we lived closer so I could give to your family. I'm grateful for all you and your family have given to me. Thanks for all you and your family have poured into community, both close to home and around the world. Your ability to look death in the eye, to prepare for the future and talk about your experience will inspire others to go boldly into this unknown new endgame. I'm grateful we met six years ago. Grace, wisdom, and strength for this curve of the road to you all... and hugs too...

Derek,
Your honesty, candor, and courage to experience and express the realness of your everyday life is rare in most of our world these days. Thank you for sharing. The inspiring and significant effects this has on your family, and all those that are blessed to know you, is something I hope will give you strength through the many moments that are still yours, and ours to share with you.
Thank you for taking the time to write on this blog, you are fucking special.
Ryan

Derek, terrible news - great post. Do your best to help the family move forward, it is the best gift you can give them. It is refreshing to see. Not unexpected, though, from a great man, husband and father. Sending all the strength I can.

Dan

I'm terribly sorry to have to read this. At the same time, I'm astounded by your strength about the situation, and I respect your choice to make this about you and your family, to make this about having dignity when you know the end is coming. I'm sure that many people are much more likely to keep taking the drugs, and then they run out of time and regret things when they don't have time for regrets.

I truly wish you and A and the girls the best. Sending you much love and support.

Dear, dear Derek -- lots of beams of love, of whatever kind of "healing" or "comfort" your body and mind crave on the next step of your journey and for Air and your daughters. Your footprints have weight and durability in this world.

Derek, thanks for sharing this with us. Your writing is amazing as is your grace in facing this harsh reality. I think you are doing right by your family, particularly your girls, by informing them of what is going in.

Our thoughts are with you and your family, Derek.

Dear Derek, More than loving you since your earliest moments, we grew to respect and admire you at every stage of your life journey. You are a role model, an inspiration and a source of strength to the family. Yours and Airdrie's courage and comprehension have helped Sirkka and I tremendously .We love You.

Thanks for continuing to share your journey. I agree that society (or just western culture perhaps?) sucks at dealing with death. I've really enjoyed reading the work of Elizabeth Kubler-Ross and her co-authors - I have just borrowed On Grief and Grieving from a student - and would recommend both it and On Death and Dying to you and Air (if you haven't already been reading them)...

I'm curious: once you've recovered from chemo, are there some interesting things on your to-do list that you want to experience in your remaining time? If learning to knit or dance with a giant adult hula hoop is on the list, I can help :)

There may be other things that We Your Readers can help make possible. (and please pose the questions to Air and the girls too - what do THEY want to experience with you...?)

man......your grace and poise throughout this journey have been amazing to watch and read about. The choice you have made is hard but it is your choice, no one can argue that. I wish peace and comfort for you, Air, M and L and your family.

I'm sorry, Derek.

You're an amazing man, and I'm glad I've had the opportunity to know you for the short time I have.

I really don't know what else to say, but THANK YOU for recording your journey, being open, being brave, being interesting, and being you.

You've been amazing through what I've seen, and I can only hope I face my own mortality when it comes with the same grace and courage you personify.

Thank you.

What an incredible post. Wish to hell it didn't have to be written but so glad you did. Thank you for helping us learn and understand. I am blessed that I know you. My heart goes out to you and your family.

Derek,

You continue to inspire. Me. I love your ability to embrace reality. There is some peace in acceptance, I would imagine. It's tempting to want to argue - but! but! but! Try this, do that. I trust in your gut, as it were. I believe that listening to yourself is the right thing to do. I feel privileged to have shared your experience through your blog. Thank you for sharing with us, with me, a virtual friend who stumbled here because you once mentioned The Who.

Your blogs take me on a trip through just about every emotion but inevitably always leave me in tears. You're a great inspiration to me, Derek. I'm so proud to say that I know you and that you're a friend of mine.

Derek, I don't know what to say that hasn't already been said. You are one of the most incredible people that I have ever met - your strength, character, grace, kindness, intelligence and humour never cease to amaze me. I feel truly honoured to call both you and Air friends.

You sir, are my hero. I love you and I'm here with you.

I can only echo what's already been said. You are an amazing man, Derek. You inspire me with your courage, grace, acceptance, strength, and love. I wish you and your family the best times possible during the rest of your journey. And I hope that I get to meet you IRL - it would be my honour.

Prospero:
Our revels now are ended. These our actors,
As I foretold you, were all spirits, and
Are melted into air, into thin air:
And like the baseless fabric of this vision,
The cloud-capp'd tow'rs, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea, all which it inherit, shall dissolve,
And, like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on; and our little life
Is rounded with a sleep.

The Tempest Act 4, scene 1,

It has honored me to say that "I know Derek Miller". Let me know if there is anything I can do to help for you or your family.
Ari Giligson.

Hey Derek,

When I missed you in vancouver last month, I have to say, the thought in the back of my mind was, "Gee, I wonder if I'll really ever get to meet him in the future…" Your battle with cancer has, of course, been known for some time and I wondered when the opportunity to meet might present itself again. Somehow, deep inside, I kind of thought, realistically, I might never, in fact, have that opportunity again.

Speaking of opportunity, let me not let this one go by and tell you that, although we never did and probably never will meet in person, I consider myself fortunate to live at a point in history where physical distance means less and less. When else but in the last decade or so would it have been possible to raise our voices for "If Every Day Were Christmas?" In what other era could we have traded ideas and stories as we've done in the podcasting world? In what other era could we have enjoyed the possibilities that technology has given us to help make this vast world that much smaller?

I know you're aware of these things and I'm sure you've thought about them more and more in the recent years and, especially, months and days. You're a lucky man for many reasons of which you're also well aware. Based on your observations and those of others I know, I've often commented how, if I died tomorrow, I would know that I've lived a happy life. Nobody wants to die, of course, but there's something about facing one's inevitable mortality that calls for acceptance and, as you said, facing reality. There is this philosophical question that asks whether you'd rather know that you're going to die or just go suddenly in your sleep—to know or not to know, essentially. Well, your situation is clear. It's not like you had a choice but, if I'm correct, you've probably adopted the attitude that "if you only have one choice then make that your choice."

I don't know what else to say for now. My friend, I wish for you comfort, peace of mind and no regrets in the time you have ahead.

Slau

Your an amazing guy.

You Sir are an inspiration. Your grace and dignity are precious. Your ability to put into words your "journey" is an inspiration like no other. My thoughts and support go to you and your family as you travel the rest of the journey. Every moment is a precious moment, enjoy, embrace, enlighten.
Take nothing for granted.

Hi Derek,

This is my first visit to your blog. I was led here by @Drew via twitter.

I don't know what to say. This is awful news and you sound like an amazingly strong man.

I lost one of my best friends to cancer almost a year ago. She was 40 years old with 3 young daughters and they, and her husband, are still reeling, as am I.

I hope the doctors are wrong and I hope you find a treatment that will work. If not for you, then for those you will leave behind if the doctors are right.

Either way, this post alone has touched so many people, and me personally, in a very profound way.

The grace and forthrightness with which you write about such a stressful time is amazing and admirable. I hope that when my time comes, I can be as matter-of-fact and realistic as you are.

May you and your family find peace and strength.

Derek, I am saddened but at the same time inspired by your bravery and enthusiasm in face of everything you've gone through. I salute your and give you and your family all the mojo I can, in the hopes of a happy and satisfying time with you and in the future. Thank You!

Hi Derek,
I landed here after clicking on a link in my FaceBook newsfeed.
Thank you for your candor and courage and for the care you take to share your experience. It is remarkable to happen upon such profound and thoughtful writing and I am richer for having read your blog post. Thank you.

I am in the midst of reading a book by Elizabeth Kübler-Ross called, On Life After Death. http://www.ekrfoundation.org/
Perhaps you've heard of her or read her writing. Dr. Ross was a pioneer of the hospice movement and was one of the first scholars to frankly discuss our relationship with death.

I lost my husband in 2001 (he was 40) to a cycling accident. Since then my heart and mind have opened to helping myself and others talk, clearly and with compassion, about death and dying.

My heart goes out to you and your family and friends as you face this journey together.

Peace.

Really appreciate you writing about death. It's something we all need to come to terms with. We're better at trying to "beat death" rather than accept it. I hope you are able to keep writing about it. I think these posts will be a legacy for everyone who is struggling with feelings around death.

There are no words I can say that match Derek's. I can only share this as a sign of my admiration and respect for him, and my caring and support to the entire family. Fuck you cancer, and all diseases that ravage good people and those they love.

As parents, you don't expect your child to die before you. Unfortunately, that is the reality for us. Our only consolation is that he'll live on for us in his daughters and our daughter-in-law. Still, it's devastating.

You're the bravest person I've ever met.
I feel a lot of love from you and your family.
Thanks for sharing the news.

I can't say more than I've already said. I'm fortunate to have met you. I can definitely say that I'm a better person for having you as a friend. Your strength, insight and personality make everything ... a bit clearer in life every time we talk, email, tweet and do the IHR "thang".

Can't say it any better than Cathy above... a two handed one finger salute to cancer - for inflicting pain and suffering on one fantastic guy and his beautiful family.

Hi Derek,

I haven't seen your blog before. I clicked through from twitter. My husband Ian died of lung cancer last year. He was 48.

He made the same decision to stop chemo and also avoided miracle cures and was extraordinarily accepting of his situation. He died at home. We had some very happy times and quality of life throughout the whole period. It was 10 months from his diagnosis until his death.

I just wanted to briefly share my experience. I'm shedding a few tears but mostly I want to send my love and best wishes to you and your family.

Christine

Derek, I have followed you for a number of years, initially because of your music, however, I found myself coming back wanting to keep up with your developments. I cannot begin to imagine what you or your family are going through. How you are approaching it, blogging about it and staying focused and positive is amazing. Others have said it above, if there is anything we can do, just let us all know.

This is my first visit to your blog. I am sad for you, but also incredibly inspired. Thank you for sharing your story and strength.

Derek, your true life is just beginning. I don't know what your personal beliefs are, but I can tell you about mine. I believe that the human soul is eternal, and death is just a door to that eternal life. The way that you live determines where you're going. From what I've read in this blog, I sense that your heart is good, and you are making amends to your loved ones, so there are no loose end once you're gone from this existence. Good! Wishing you the best, and keep your chin up (not for defiance, but for strength).

Godspeed, Derek!

You are a brave person. And you are strong. I admire your point of view and also the fact of the matter is.. is that you are just going along with it. Because that is all you can do.

As sad as it can be, it's also really inspiring to read all of this.. it makes me not want to take anything for granted anymore.

Thanks for being you. Though I don't know you that well, you are a good person and a lot of people love you!

My deepest thoughts and prayers are with you. Know that people will support you regardless of your decision.

A brief aside regarding early chemotherapy treatments... My mom was diagnosed with Hodgkins lymphoma in the late 60's. At the time it was considered 100% fatal. With the help of the researchers, doctors, and nurses at Sloan Kittering (sp?) in NYC, she went into remission. She was one of the test group that used the surplus WWI mustard gas as treatment (though at higher dose than what became standard treatment). There are always trials and testing underway somewhere... maybe someday they'll find a way to beat this thing.

I am not criticizing your decision, frankly in the same position I would have made the same choice.

Dear Derek.

I guess I have to take offense with one thing you say in your blog post. While I don't have any miracle cures for you (would that I did), I do find it offensive that someone at your age can die of this stupid, ridiculous disease. It offends me that you don't get more time than this, in the same way that it offended me to lose my friend Kim a couple of years ago.

That being said, I can't help but admire the courage you've demonstrated all the way through this, and no doubt will continue through the "endgame."

The record of your life that you've left through these blogs is an important one for your family and for others. What you have done here is one of the things that social media should be lauded for. You've created a community, you've shared your thoughts, and you've bettered the lives of others by how you've communicated.

To be frank, I'd rather you didn't have to face any of this and that I had never heard of your blog, except perhaps as a fellow music lover. But I'm glad to have had the chance to meet you, even this way, and in these circumstances.

I'd give you advice, if I thought you needed any. But just keep doing what you're doing and love your family. Stay the course.

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