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Birds In Spring: Making The Most Of These Few Precious Footsteps While Living With Myeloma

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Published: Nov 16, 2010 12:03 pm

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 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 talked about this in a column the other day, as did Sloan-Kettering’s Dr. Sergio Giralt 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, 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.

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Lou Ganim, monthly columnist at The Myeloma Beacon.
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3 Comments »

  • Kimberly Dunlap said:

    Having Multiple Myeloma as well I have to say that I have also thought about my own mortality, but I really believe that anyone with an incurable disease thinks about their own mortality. I would think that this is normal. Having the diagnosis makes you think about all the things you haven't done, all the things you want to try and all the people that you love.

    I take each day as a new day to discover something about myself. Now that I'm unable to work, there is a lot of time for me to do this. My husband and I have become more spontaneous, we load the car and head to the beach for the weekend. I cherish each and every moment. I believe that now with this diagnosis it has made me appreciate the little things in life and the people in my life. I fear that I too will run out of time before I show the most important people in my life how much they mean to me.

    At this time I have a "Complete Stringent Response" but there are days that I fear the disease will come back this time stronger and I will be to weak to fight it again.

    This topic is one that I think of often and I haven't found much on the subject either. Just is how one suppose to deal with the fact that you are living each day with a disease that is incurable? How often are you suppose to think about your own mortality before its considered to much or obsessed?

  • Lori Puente said:

    And therein lies the bigger challenge for the "survivors". How you learn to LIVE WITH MYELOMA (or Cancer). I felt this was going to be the challenge Dave would face as he finished up with his major medical intervention. I knew it was coming and I approached him about it midway through his treatment. My mother had 5 cancers over a 12 year period. She was an alcoholic. I told Dave, "I know how Mom handled it. But I wouldn't recommend it." He said, "Really? How did she handle it?" I said, "Well, she went on a 3 week binder every 6 months! She drank before the test, worrying about it. She drank once the damn scans were done! Then she drank to celebrate she was clear!" Other than those two times in the year, she seemed to really live her life well, but the stress and anxiety she must have felt, I'm sad to say, I didn't fully appreciate.

    Dave and I have made a conscious decision to not allow "it" to consume us. Really. We don't worry about the tests, we don't worry it will come back, we don't worry. We are not going to waste one minute of our energy worrying about something that may or may not happen and if it does we don't know when. We know that our doctors are following him closely and if there is a problem, they will let us know. We'll deal with what is presented to us. I'm really proud of him for that. Its not easy.

    Great post! Love your stuff!

    PS I just met a 17 year survivor in Little Rock this week! He was there for his check up!

  • Pat Killingsworth said:

    Thanks for making the emotional commitment to write a column like this one. It took a lot of thought and soul-searching. Much appreciated! Pat