I was thinking the other day about mortality. By no means am I obsessed with this, but a thought process about one’s own mortality is, for me at least, sometimes unavoidable, given a life-shortening multiple myeloma diagnosis.

There doesn’t seem to be much written – there’s some – about the psychic impact of living with a disease that’s pretty much always fatal, and one where you don’t really have a clue when your myeloma will turn on you and go from “manageable” to untreatable. From comments I’ve heard from patients, I know mortality weighs on their minds too, sometimes I think more than it should.

It’s a two-edged sword, of course.

If you’ve looked at some of what I’ve previously written ^[1] on The Myeloma Beacon, you’ll see that I’ve referred to the positive impacts on my life that this diagnosis has had, particularly in how I view and appreciate life. Rather than bore you with repeating those same thoughts from me, I’ll share with you some comments I’ve received from others:

• “I am so amazingly aware of my surroundings – I love seeing the lake across my pool, the way the wind moves the palms, the jays in the oak screaming at the hawk, the summer clouds before a storm. I enjoy each moment. I want more.”
• “I just enjoy life as it is, whether that means sleeping in on the weekends, being a couch potato watching a silly TV show, or just folding laundry…As a person aware of the finite length of life, I need to do something meaningful each day! It took me awhile to realize that.”
• “I've learned to spend 30 minutes a day intentionally ‘wasting’ my time by watching the breeze blow through the trees or the birds flying by.”

We’re lucky (if that’s the right word) to be living in an era where there is so much development going on in myeloma treatment, so that those of us who’ve managed to hang around for a while are pretty hopeful that we’re going to live a much longer time than was on the table at diagnosis. I know I think that. Pat Killingsworth ^[2] talked about this in a column the other day, as did Sloan-Kettering’s Dr. Sergio Giralt ^[3] in a column I wrote in August.

As I mentioned, however, there are no guarantees. Some people with extremely aggressive disease don’t live very long even now, despite the otherwise effective treatments that are already available. Because of its inherent nature, myeloma has the ability to turn hostile on any of us, at any time. And becoming refractory, or resistant, to a particular treatment drug is a fact of life that all of us myeloma patients live with.

I think it’s good to keep that in mind, because it can instill a bit of a sense of urgency to our lives, which is not a bad thing.

In my own case, past experience made me more accepting of my initial diagnosis and its implications. Going back to the decade I spent a lifetime ago as a newspaper reporter, I learned how fragile and spider web-thin our link to life is. It can be broken without warning at any time. It happens every day to thousands of people, and to the people who love and care about them. I think knowing that helped me confront this disease from the beginning.

There’s an implication to this disease, though, that weighs on me.

It was expressed back in the early 1990s in, surprisingly, the old Calvin and Hobbes comic strip written by Bill Watterson (Calvin was the pre-kindergarten boy whose out-of-the-box thinking drove his parents crazy, and Hobbes was his usually rational and skeptical stuffed tiger who came to life when no one else was around).

In this particular strip ^[4], Calvin equates a sidewalk block to life – we’re born at the first crack in the box, and we die at the next one. Calvin says to Hobbes that at some point inside the square, we suddenly are aware of how fleeting our time here is. Calvin asks these questions:

“Is our quick experience here pointless? Does anything we say or do in here really matter? Have we done anything important? Have we been happy? Have we made the most of these few precious footsteps?”

The final panel in the strip finds both characters hours later, at night, still standing in the middle of the sidewalk block, staring intently and somewhat forlornly at that next crack in the box.

That’s always been one of my favorite strips, and it captures what I think about most now with the limits on my life expectancy that come with multiple myeloma. I look back at the time I have “survived” and am almost appalled at how fast those years have gone by, eroding the prospective lifespan that’s defined by this disease.

There are times when I worry that it's going by so fast, and I haven't done enough about those things I see as being important.

Some have written to me about how they have just sought to go on with their everyday life as best they can, and not, as one put it, “do something fabulous and life changing each day.” No “bucket lists” and no trying to cram in the latest 100 whatevers that you simply have to do before you die, which is all the rage in books these days.

I wholeheartedly agree with that, and it’s what I’ve sought to do since the facts about my diagnosis penetrated my feeble brain. I’ve heard from others who have had a way more difficult time with this disease than I have so far, and I am simply amazed at their ability to just keep going.

Perhaps, however, there’s more to it than that.

The slap-in-the-face awareness that a myeloma diagnosis brings gives us one final opportunity to confront Calvin’s questions, and the recognition that the time to do something about them is, once and for all, limited.

I mentioned my feelings of “not having done enough” to one of my email correspondents, and he wrote back: “I suspect the feelings that we aren't accomplishing enough with the time left is universal, but I also suspect we would never be satisfied with our use of the remaining time…so just do your best.”

And he’s right, of course. I doubt that I’ll ever be satisfied that I have done enough.

But I sure am going to keep trying.