Day 4 of hospice care. Still no symptoms.
Is it better to know in advance that you are dying, or that a loved one is? Or is it better to have it happen suddenly, without warning? It depends on who you ask. There is sharp disagreement among my own loved ones about this.
Many will not like this post. It's one I've been waiting to write since June of 2016, when I read a Facebook post from my friend Trevor Downing. Trevor and I have very different spiritual beliefs. He's an atheist and I'm a Christian. But we are very much on the same page when it comes to our view of mortality. Here is what Trevor said in his post:
I consider myself fortunate to have an idea of when I'm likely to die. It has allowed me to make peace with the world, to say my goodbyes, to get used to the idea of being here no more. Most people have no idea that they are about to die, so leaving unfinished business, and not making the most of their last days. Cancer for me was an opportunity to become a better person. I don't worry about death as I have little control over it when it comes. Each morning I awake and enjoy life as I'm still here.
Trevor's post resonated deeply with me. I've saved it all this time, waiting for the day I could write about this without people calling me a defeatist. I've had that happen a lot, in spite of what most would call a very positive attitude. Trevor has accused me of this in the past. In fact, he proposed a wager as to whether I'll still be here for New Years Eve, 2020. The trouble is, I have to die to win the bet. Smart man.
I agree completely with what Trevor wrote. I like knowing what's coming, and approximately how much time I have. It helps me plan and prioritize. It's a great motivator. I know my time is short, so I'd better get busy while I can. It gives me the chance to say my goodbyes. It helps me to make sure there's nothing left unsaid or undone. It gives me the time to document the whole process over a two and a half year period. It's given me time to change and achieve things I never would have achieved otherwise.
Since I feel this way, I've felt it necessary to tell people who might not know what's going on. I don't want them to be shocked when I suddenly start to deteriorate in front of them. But maybe that wasn't the best thing for everyone I've told.
Another wise man, Mark Brewer, once said, "The good thing about cancer is, it gives you time. The bad thing about cancer is, it gives you time." For some, time is not a luxury.
I have friends who have lost loved ones in a variety of ways. Each feels that the way they lost their loved one is worse. Each has good arguments in their favor. But the most persuasive argument against my view came from my own wife.
Last week, she told me that she's been experiencing grief for a long time. By the time I die, she will have been going through the grieving process for something like two and a half years. Then, after I die, she'll go through the same grieving process she would have had if I'd died in a car accident. She recognizes that there are advantages to knowing in advance, but there is a huge downside too. Two more years of grief than she would have had otherwise. It's amazing that she doesn't show it more than she does.
I know this is true of many who are close to me. Most have been preparing for this for at least a year, since I was diagnosed Stage 4 in September of 2016. A very few have known from the beginning that this was coming. Or at least, very few have wanted to admit it. It's easy to understand why. As my dear friend Nikki once said, "We don't want to live in a world without Mark." It was one of the nicest things anyone's ever said to me.
But I always knew. As soon as I found out how serious and aggressive my disease is, I knew how this would end. I felt soon after I was diagnosed that I had about two years. I don't know how I knew that. I just did. That feeling never changed, even when things were going very well. Close friends know this to be true. If my oncologist's estimate is correct, I will have been off by about six months. It will have been approximately two and a half years from diagnosis to death.
This is why I listen to my heart. It's usually pretty accurate. And speaking of accurate, when I asked my oncologist for a prognosis a year ago, he said if I respond well to treatment, I could live three to five years. If not, a year or two. I tell that story in Life Expectancy, written September 16th, 2016. I did not respond well to treatment, or at least not for very long. If I'm looking at four or five months from today as my sell-by date, it will have been roughly a year and a half since he gave me that prognosis. Pretty accurate.
When I wrote that post, I was chastised by many for believing him, as though disbelieving him would help me live longer. But I knew he was right.
Even so, for most of the time since I was diagnosed, I haven't felt like I was dying. I felt pretty much normal. I still do, for the most part. Physically, at least. When I visited my family last February, one of my sisters asked if I felt like I was dying. I said no without hesitation. I knew that I would die, but I didn't feel like I was dying. But in recent weeks, that has changed.
Since sometime in August, I've had this feeling that I've only told a few people about. I can feel that I'm dying. It's nothing physical. It's more in my heart and spirit. What does it feel like? It feels like certainty. It feels like a slow decay has begun. It feels right that I am in hospice care now. It feels like God is looking at his watch, wondering when I'm gonna show up. Typical singer, always late.
But at the same time, I am in great spirits. I love what I'm doing, mentoring and writing. I'm having lots of fun. My days are not spent waiting for death. In fact, my friends have had to get used to my dead guy jokes. You have to have a sense of humor about this. If you don't, you really are just waiting to die.
The band I'm in is about to get band pictures taken. But I won't allow myself to be in the picture, because as I told them, you don't want a dead guy in your band poster. That was a real knee slapper. We're performing at an annual event here in Denver called Prog Fest on October 29th. We're closing with two songs from Pink Floyd's Dark Side Of The Moon; Time and The Great Gig In The Sky. Yes, we have a girl singer who can sing The Great Gig In The Sky. It will give you chills.
There is a speaking part in that song that I've never paid any attention to. I can't understand what he's saying, and I've never bothered to find out, even though I've owned that album since it came out in 1973, and I've listened to it hundreds of times. But since I'm not doing anything at that point in the song, and I'm the best actor in the band, I volunteered to do it. Then I saw what the words were.
I've performed at Prog Fest many times. My first performance at that event was in 2006, when a group of us did another Pink Floyd piece, Shine On You Crazy Diamond. You can find the video on my YouTube channel here. So it's fitting that my final Prog Fest performance is another Pink Floyd song. They've always been one of my favorite bands. When The Great Gig In The Sky begins, and my speaking part comes, these are the lines I'll be delivering, verbatim from the album. My parting words to the Prog Fest crowd who has seen me perform so many times.
And I am not frightened of dying
Any time will do, I don't mind
Why should I be frightened of dying?
There's no reason for it, you've gotta go sometime
I never said I was frightened of dying
I'm sorry, but that's spooky. It was my idea to do that song, but only because I wanted to hear our singer sing it. I had no idea what I'd be saying in a speaking part I didn't even know I'd be doing. How bizarre is that? And how in character with the way my journey has gone from the beginning. One serendipitous event after another.
This is why, for me, it's better to know. If I didn't know that this is my last Prog Fest, the significance of those words would be lost on me. The significance of my last public performance would be lost on me. I'd miss how precious time is.
But at the same time, I understand that you may not feel the same way. For you, it may have been months or years of grief, and we're not even to the bad part yet. I am sorry for your grief. Allow me to be the first to say that I'm sorry for your loss. Thank you for sticking with me even though it hurts, and the hurt will get worse. And the more you love me, the worse it it will be when you have to live in A World Without Mark.
Whether you think it's better to know or not, we all get off at the same exit ramp. We all know it's coming, we just like to pretend it's not. You might think my expected death is terrible, but an unexpected one can happen at any time for any one of you. So don't wait until you know you're dying to tell the people close to you how you feel about them. Don't wait to get your ducks in a row. Then you won't have to worry about whether it's better to know, or not to know. #waroncancer #bearingwitness