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Myeloma On The High Plains: Time Now

By: Mark Pajak; Published: January 9, 2020 @ 6:21 pm | Comments Disabled

I have made it five years since my initial diag­nosis, or at least I am hoping to make it to five years, because you should be reading this column right around my five-year mark (January 15, 2015). 

Wow. I have lived with multiple myeloma for five years, or almost 8 per­cent of my time spent here on Earth. Looking at it from the perspective of 8 per­cent of my life with multiple myeloma feels so dif­fer­en­t than looking at it from a 5-year perspective. Strange, no?

When I was first diag­nosed, trying to know how long I had to live became a critical component of my life. And as you probably have gathered from your own ex­peri­ences, the answer to the question, "How long do I have to live?" is universally answered by those in the know with "Who knows?" That's not all that satisfying of an answer, especially when looking at an unknown future after a multiple myeloma or any cancer diag­nosis.

Trying to assemble my thoughts about living with multiple myeloma, and my interest in knowing how much time I have left on Earth, provided much confusion, angst, and of course worry. I realized that a re-arranging of my thoughts was needed or I would go insane.

What does "time left" mean? What does that look like?

I looked up the word "time" in Webster’s dictionary and found the fol­low­ing as the first definition: "the indefinite continual progress of existence and events in the past, present, and future regarded as a whole."

What? The thought occurred to me that Webster may have been actively partaking in an herbal protocol that only recently has be­come legal in some of these United States.

I can accurately tell you that after reading that definition, my under­stand­ing of time, or the notion of "time left," did not im­prove at all.

Early in my journey with multiple myeloma and well before my stem cell trans­plant, I was visiting with my wife over the telephone. She was attending a professional conference away from home and had called to check up on me and "our myeloma situation." (Yes, it is an "our" situation.) I was standing in the kitchen, and I remember that I told her that I was so wanting to live and that if I was extended the gift of more time and thus more life, I sure as hell did not want to waste it. My awareness of the gift of time and life was so much greater now than before. I just did not want to waste the time that I had left.

So how do I not "waste" time? Well, I cer­tainly under­stand the definition of waste that Webster puts forth: "To use or to expend carelessly or extravagantly or to do so for no pur­pose." That I under­stand.

The de­ci­sion to be made was to identify what I con­sidered pur­poseful and what I con­sidered wasteful in my life. Once done, I could make the nec­es­sary changes so that the time I had left was not wasted. I needed to look at what I was doing and if it had no pur­pose or very little pur­pose, make a change to provide ac­ceptable pur­pose!

So now, five years later, I can report that changes were made. I am less con­cerned about tomorrow than I am about today. I am pur­poseful in spending time on kindness and build­ing and main­taining old or new rela­tion­ships. To use a metaphor, I work at being content "in the river" as opposed to needing to "push the river." Every day is im­por­tant now. Every day is a gift. Give it a pur­pose or let it go. Remembering that change is the only con­stant in life allows me to complain less.

By focusing on my "time now," or what I am doing today, my "time left" anxiety de­creased. This idea or preoccupation with "time left" is sig­nif­i­cantly less im­por­tant than "time now."

Oh, don’t think for one min­ute that I have stopped com­pletely thinking about "time left." I still do, which I believe to be pretty natural. However, I keep telling myself to let it go and focus on "time now."

I have "time now," and that means that today, right now, I get to define what is wasteful, what is pur­poseless, what is to be let go, and what is to be kept or added. This concept of "time now" provides a more man­ageable, more meaningful, and cer­tainly more enjoyable ex­peri­ence. My life in "time now" reduces the anxiety and the desire to know about "time left." And I am all for any­thing that reduces anxiety.

Five years and counting. I love to read about myeloma sur­vivors in their 8th, 10th, or 12th year after diag­nosis. It really provides a morale boost. That said, each of us is on our own journey, and thus each of us only have “time now” how­ever we choose to define that.

As the journey con­tinues, "time now"” has be­come so valuable to me.

Mark Pajak is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column is pub­lished once a month.

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


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