I'm at the point with my cancer that the car has finally bumped down off the pavement and we're driving on gravel now. What I mean is, the end of the road is somewhere up ahead, not too far, and I'm not going back to smooth speedy travel, ever. To keep moving at a reasonable pace, I have to pay more attention to details, and a lot of stuff I previously took for granted requires effort—mine or someone else's. This has happened faster than I expected, but life often does.
Several doctors have helped me manage my symptoms, and the celiac block procedure I had last weeks seems to have helped with abdominal pain, for one thing. While my chest cough persists, it is not from fluid building up in my lungs. I am treating the cough, most often at night, with a drug that dries tissues out locally so I can more easily find a comfortable sleeping position. The Depends are doing their job too.
Both of my feet and lower legs are swollen, but that appears to be a regular consequence of my metabolism becoming wonky as the tumours interfere with my various bodily systems. The treatment? Elevate my feet, and wear super-tight compression stockings (I'll get thigh-high ones fitted in the next few days, ooh-la-la). I remain stupefyingly tired, especially on days like today when I decide not to take Ritalin to perk me up.
None of these symptoms will get much better. The only one that could is my voice, which has been nothing but a whisper for two months, but which I hope Dr. Anderson will inject or spray on April 25, and perhaps I'll be able to speak with my vocal cords again.
Real plans, for real. No really.
All the rest means that my wife Air and I are making plans, real plans, about what the next few weeks and months are going to look like. I am on the full B.C. Palliative Care benefits program—British Columbia seems to be in good stead when it comes to this somewhat uncomfortable specialty.
I have signed the official B.C. Do Not Resuscitate (DNR) form, so if I have a heart attack or other really drastic event, then my medical team—plus first responders and hospital staff—know that I don't have long to live, and don't want any overly-heroic treatments to keep me alive at any cost. In particular, there's no point in having me on a ventilator in intensive care when that space could go to someone who might make a full recovery and live a long life.
Emily the Burnaby Health Nurse comes again tomorrow to see what I might need here at home, so that I can stay as long as possible—and to determine who else on her team might be best to help my family and me figure that out. While Burnaby Hospital's Palliative Care ward is apparently extremely nice, and just down the hill, I'm not planning to go there.
Rather, we're physically preparing our house for me to live my last weeks to months here, and likely for me to die here too. Burnaby Health will even bring in a fully-adjustable hospital bed so I can set myself up comfortably.
Being the Decider
I may sound a little cold and matter-of-fact right now, but in truth it's surprisingly satisfying, even a bit joyful, for Air and me to be able to make decisions about how my life will end—and to know that these decisions will take effect not in some abstract future, but soon.
Personally I don't expect to live until autumn, and I don't know if I'll get very far into summer. But if that's the way it happens, I'd like to die during a beautiful Vancouver summer rather than one of our grimmer grey seasons. Once I'm dead there'll be no further experiences, so I may as well face a lovely city in the sunshine beforehand if I get the chance.
At the moment none of my doctors sees any particular single organ or physiological system as a big scary killer lurking to take me down suddenly, or with a series of cascading problems. More likely I'll continue to become weaker and more tired, and I may need some help breathing later. Then, eventually, weeks or a few months down this gravel road, I'll simply shut down, and I'll die. There won't be a Derek anymore.
That sounds like a decent way to go.
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:-(
Love you both.
You're never far from my thoughts, guys. I wish I had a magic wand I could use to make things better, or at least more comfortable.
I second Tod's thoughts. I've been thinking of you a lot, lately, Derek, and Air. xoxo
Like Steff and Tod, you guys are always in my thoughts. I admire what you're doing.
Even if it makes me cry.
I have no words Derek. This is awesome in the true, authentic dictionary definition of the word. You take my breath away. I'm half a world away from you, I have never known you, never will. But we are the same age and I shudder to think of what a mess I would be in the same situation.
I was close to my Dad in the last year of his life as he was dying from cancer, after years of being so far apart. I learned so much about what it was to live and die with integrity in those months. I truly hope your friends and family know what a privilege it is for them to know you and witness this.
Peace.
Derek,
My thoughts and prayers are with you and your family. I traveled down that gravel road with my mother last summer. I am glad to hear your loved ones will be close and that you continue to write for those of us far off.
Thinking of you from the states,
Joe
Derek - I never got to know you in real life or online but I think you're the most courageous person I've ever come across. You and your family are in my thoughts and prayers.
Powerful and grim description. Prayers to your family as usual.
It makes me cry too. I generally don't comment, but I always read your posts. It seems surreal that you've started down the gravel road. I hope it's a smooth ride. xx
There are no words. You are truly brave. I really hope that it will be as peaceful as you say and that Air will have all the strength that she needs. xx
Derek - we have only met a couple of times, but you have made a lasting impression on me. You and your family are very much in my thoughts.
I too admire your courage, and that path you are taking.
Derek, and Air too
You are always in my thoughts and I would be too naive to even remotely think that I know what to say. I'm at a loss for words. All I can say is that I love you both, that I admire your strength and courage, that I wish there were something I could do and that I will be there in a second (well, in whatever reasonable amount of time it takes me to get there by cab or plane if I'm in another city) for whatever you may even remotely need.
I didn't think my admiration for you and Air could grow any bigger. I was wrong. Every single day I am more in awe of how amazing you are.
Words escape me, Derek.
Sending you and your family love.
Andrea
xo
And here is one of the reason's why Facebook's "Like" button can be so far out of context. While I want to share your story of courage and acceptance with my friends, I do not like it. Not one little bit.
I know I'm just piling more sentiment onto what is already a long list of friends' well wishes and support, but I'm not going to pass up the chance to tell the alive Derek how much he has meant to me.
We are acquaintances, you could say, but I am also a huge Derek fan. I first discovered you via your podcast and your music, and I marveled at how cool a guy you must be to share your great music so openly (your licks appear in many of my videos as a result). When I realized how many friends we had in common, I knew I had to meet the "dude behind the music." When we finally did meet, you had already received the negative diagnosis. Your health had taken a hit, but your spirit clearly had not. Over the next few years, we visited your house for parties a few times, said our hellos at local events, and I think we bumped into you at Costco more than once.
When you started to document your experiences with cancer, I was floored.
A friend of mine passed away from CF recently, and he and his wife documented everything at https://www.cfsucks.com. Your story and theirs impress me for the same reason; that even though it inevitably made it more difficult to share your experiences with us, you did so anyway, for our benefit as much as for your own. And it makes me wonder: how many families will benefit from this legacy of disclosure that you left behind? Dozens? Hundreds? Thousands? Each and every one is a life that is improved because you were willing to be so generous with your insights into a truly awful circumstance. When my Uncle had a very real cancer scare last year, I waited until I found a delicate way to tell my Aunt that it might help to read your site; If nothing else to see a guy who is being told the worst, medically, but reacts in the most positive way possible.
I make the mistake of feeling sorry for myself all the time. It's a horrible habit, one that I am embarrassed to admit in the presence of one of the bravest people I have ever met. In your honour, I vow to try and stop that habit forthwith. I have a little trick I'm going to try:
Whenever I think that life has been (trivially) unfair to me, I will try and remember how lucky I am to have known you.
With love,
Jordan
I've been reading for so long, but haven't ever commented before today (go go delurking!). I really have nothing I can add to what others have said already, but I echo every statement. I wish you peace and comfort, surrounded by sunshine and love and that Air has the strength she needs to support the kids as well as herself. We're all here for you all.
Your truth hits me again Derek and once again I am reminded of the time I was fortunate enough to spend with my mother in her last days. She too spent her time at home in Smithers BC. She was surrounded by friends and family and those so supportive as clearly you have! And I agree it is a great way to go and while a tragedy it was also beautiful in its own way.
I am so glad you have kept your memoirs in this blog. Thanks for this!
But i have to disagree with one thing there will most certainly be a Derek! The one who lives on in our memory. Any the other and most important who live on in your daughter and family!
Cheers
Roger
You elevate the Human Experience to a place where we all aspire to exist. Real, raw.. and retaining only the best Elements of our accumulated experience.
Over the course of your posts, you have welcomed us to learn the difference between Sympathy/Empathy and true Compassion.
You've expressed noble character, moral fortitude, and divine love without the crutch of theistic intervention. Perhaps one of the most important gifts you've bestowed.
Thank you for your Voice, one that resonates with or without vocal cords ;)
A humble, fluid legacy - built with Grace, Courage and Clarity - is what truly becomes legend.
thank you for your gifts Derek ~Deborah
I'm made speechless by your grace in documenting and sharing this. Inspirational. Ive been reading from a distance, distracted by the silliness as is so common. You have made so much of your time here, and your writing embodies, in every way, the peace that comes with that. What an example for everyone you have touched, and those to come who don't know yet, that we are so much the better for who you've been.
Derek, I met you a number of years back when you did a presentation for an Editor's Association of Canada meeting in Vancouver. I followed your blog for a long while after that, but then didn't keep up for a couple of years. When I rediscovered it again this past fall, I was sad to learn what you've been going through. I have watched three family members die of cancer in the last eight years, and to be honest, cancer terrifies me. (I felt a little light-headed reading this post!) But following your candid, honest posts over the past few months has made me rethink some things, and I've learned a lot. Thank you for sharing your journey, and especially your take on death and dying through an atheist's eyes. Not enough is said about it in that context.
Like everyone else, I wish you and your family all the best, and hope you get to enjoy many sunny Vancouver days very soon.
Derek,
Thoughts and love go out to you and your family. Thank you for your courage and inspiration.
Hey Derek. Glad to hear that you're able to manage things well as can be. I'm heading over to Van for Easter so hopefully can drop by for a little bit and say "hi". anyhow, keep you updated. Hope to see you soon.
Simon
When my mother was dying, the palliative care nurse and so on were amazingly helpful, and she too was able to die at home, which is what she wanted. BC is indeed really great about end of life care.
Best of luck Derek, may your last time on earth be as comfortable as possible. Wish I'd got to see you once as an adult, but I don't suppose it'd matter, I suspect your blog represents the man you've become well, in more than one sense of the word.
Take care.
THANK YOU for your posts. By teaching us what it's really like on the gravel road, I think we all learn a little about how to drive (i.e. live).
If all the love and support (from around the world) coming your way could be represented by good weather, it will ALWAYS be warm and sunshiny, regardless of what it might look like outdoors!
Derek,
Many of your posts have brought tears to my eyes. In one way or another we've all been touched by the reality of terminal illness and I know you've helped provide meaning and connection to so many people. I'm thankful for the voice you've provided us all.
Peace, Cheryl
Derek, I took an editing course from you about six years ago. I never got to know you at all, but your illness saddens me to no end. I've been lurking periodically here over the years, and I've never written, but I felt that now was the time. I'm so sorry to hear you're declining. Someone else wrote that you've suffered with such grace, dignity, and may I add humility, and throughout you've been nothing but inspirational. I wish you a joy and peace during the rest of your journey.
Well put. Love you guys.
Thank you for sharing your life and giving so much inspiration to the rest of us. I've learned how to live, .. more. Thank you. Peace.
Derek,
I know these are just words from a stranger, and they can't change anything - can't even offer a single moments relief from what you're going through, but just know that your words have meant so so much to so so many.
You've changed and enriched the lives of everyone who has encountered you - even those who's closest contact will only ever be to have read your written word.
Derek, Air and kids: our thoughts are with you.
BJD. Ireland.
Derek, you, this post, and all you have done for us ALL through your writing since (heck, before too!) your diagnosis -- amazing gifts for us all. Admirable beyond words.
My husband died 5 years ago under very different circumstances but also at home. I've also seen people die in hospitals. While I didn't always see it as such and have had many different thoughts on the subject over the past 5 years, I now know for certain that dying at home, if possible, near and among those who love you and that you love is THE BEST way for gentle people to gently die.
Peace to you and your family.
Jen.
Just like you I have 2 kids and am in my 40s. Your story constantly makes me face my mortality and appreciate every little thing.
You've made a difference with the time you've been given here, thank you.
I'm hoping hard for Vancouver's summer to be sunny and gentle, and for a gravel road that wind gracefully the way it does on drives in the country where time slows.
Back in '02 or '03 when I volunteered with you at the Editors' Association, I remember you were one of the first people I knew who wrote a blog. Penmachine was one of the very first blogs I started following. I'm at a loss of words and filled with tears right now. Thank you for sharing your journey with us. I hope your journey down the gravel road is as smooth as possible.
Wishing you lots of love, peace, and beautiful sunny days.
Hi Derek,
You humble me and draw tears to my eyes with your strength and courage. I'm a lurker too (except for FB) but I wanted to add one more voice to the chorus of those who admire you and send the best wishes that they can to help you and your family through the next few difficult months and years with grace, tears, laughter and lovely memories.
Kathryn (and Mark and Sophia)
Derek,
Fuck, I'm sad as the tears run down my face but I also feel very humbled by your tremendous strength now and throughout the past few years that I've known you. Thanks for sharing your journey and much love to you, Air and the girls. I'll miss you and your infinite knowledge on so many different topics. Fuck Cancer!
Stacie Bee
May the shocks on your car remain in good repair so your travel down the gravel road can be as comfortable as possible. I'm sending you and the fam mental hugs. Not the crazy kind of mental,the brainy kind. Your bravery and honesty inspire.
Derek, I am another who's life you made an impression on by what must seem to you to be a few dozen brief and trivial exchanges. But it happened and I am grateful. One of the happiest moments I had early this spring was figuring out how to migrate the Pink Panther themed ringtone you made for me onto my new iPhone. It is the one artifact I have to remind me of you and honestly, I haven't found a ringtone I like better. As an aside, my wife really doesn't like it, so I've set it to be her custom ring. That way she never hears it and for me, well it's the most frequent call I take so I'm making good use of it. Thanks again buddy. I probably won't see you again, but I'll be thinking of you every time my wife calls.
Derek,
We have only "met" online, through the podcast and here. Grace and courage always come to mind as I read your posts.
Having lost a number of family and friends to it, I have to echo Stacie and say F*ck Cancer! (Hey, I came up in radio and STILL can't say "FUCK" in a public forum! (oops, I guess it was time...))
Ron
I'm going to miss you. I'm going to miss reading your blog and your tweets. My sad thoughts are with you Derek and Airdrie and your girls.
The reason we met sucks. But I feel lucky to have met you and Air. Cancer hasn't robbed you of your sharp, rich writing. Your ability to "observe" yourself as you go through this is so unique. Thoughtful. Heartfelt. Practical. Real. I have never met such an open, honest family before.
And I'm not saying this just because you're dying. ;) (my attempt at cancer humour)
Hugs and Love
T
Saluting you from Yellowknife Derek.
Derek - I can only echo what others have written - but know that you and your voice are reaching people all over the world. From here in Australia, thank you so much for your story and honesty - you are such an inspiring person and the world is much better for having you in it. Like you, I don't believe in an afterlife - but I think you will live on in memories and thoughts because you have made such an impact. May all the strength in the world go to you and your family.
~ Zanna
Derek, this is the first thing I've ever read on your blog, but I can tell you that it's really moved me to tears. I remember years ago when my grandmother (and best friend) was coming home from the hospital, after going in for what felt like the hundredth time. I thought for sure everything was okay - they'd keep her in there if something was wrong, right? Wrong. She'd elected to come home and be set up there and to leave us peacefully and comfortably. And it's still the most painful thing I've ever experienced. Though your entry is simple and to the point, it shines a light on a gripping reality that many people face.
I'll be keeping you and your family in my thoughts, and I hope things remain manageable, at the least, for you
Derek, you've been so generous with yourself over the years. You've given out your music for podcasters like me who were looking for something to play. You've shared so much about your experience over here.
Seeing this post, I had to share it with my wife. It moves us emotionally to be able to interact with you when you're so close to the end of your life.
All I can say is that it's been such a great privilege to have known you. I'm so grateful you were born. This world is such a different place because of that!
May God bless you and your family.
Make it a great day!
Daniel Johnson, Jr.
Cincinnati, Ohio USA
Derek,
I had no idea what you have been facing until a Vancouver friend tweeted this post. We may have only met passing in blogs or at a previous Northern Voice conference, but your work and sharing online has been invaluable. Almost any time I do a creative commons search on flickr for something related to cameras or photography, I land on one of yours.
Wishing you peace and comfort and the perfect Vancouver summer day.
Derek -
You are an inspiration to me in how to be on the internet, how to live life and how to leave life with strength, honesty and openness. Thank you.
I wish you and yours all the peace and comfort in the world. My thoughts and best wishes go with you.
~TJ
Oh, Derek. I wish much love and happiness for you and your family while you travel down this road.
Derek,
I don't believe we've seen each other for almost 20 years since UBC. I reconnected with you online after I heard you do a CBC interview on your cancer.
I have learned more about you from your blogs, and your wonderful family. My heart goes out to you, and them, as you "bump off the pavement" onto the gravel for this next stage in your life.
Thank you for sharing these very difficult times with us online.
As much as I've known you, you lived well, treated others well and clearly have family that loves and cherishes you.
I hope the summer comes soon, and is bright, sunny and warm so that the last stretch of road you're about to travel with your family is as pleasant as possible.
David
beautifully written post.
I wish you peace of mind and much much love.
You are special.
Derek, Bless you and your family during this time. You and Air are so strong. I wish nothing but love and peace for all of you. I don't know what else to say.
Like you Derek , a few years ago I had to plan my funeral (very surreal), unlike you my plans have a good chance of growing old and dusty. I'm hoping that you do see the summer as I'm finally coming home and I would love to see my Italy companion again. I cherish the memories of getting lost in Florence with you and our deep discussions on whether clip on sunglasses will ever be cool.
Reading your blogs have really put my life into perspective and I thank you from the bottom of my heart. It is an honour to call you a friend and I am so glad that you have been a part of my life. I send you all my very best to you and your family, you will all be in my thoughts daily. Heres to seeing a Vancouver Summer together. :)
Much love to you and Air. You are in my thoughts as always. I'm so damn proud of you my friend. Keep smiling.