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Myeloma On The High Plains: My Eyes Have Been Opened
By: Mark Pajak; Published: December 23, 2019 @ 3:56 pm | Comments Disabled
Though it has been almost five years since my initial diagnosis, I still am somewhat uncertain about what it means to live with multiple myeloma. Where does enjoying your life, LIVING your life (having fun, laughing, enjoyment, etc.) fit in with the very real and serious circumstance of multiple myeloma?
When first diagnosed, I was sad, disappointed, uncertain, and scared. It was easy to be this way because I associated having multiple myeloma with constant and extreme pain, lots of suffering, so much sadness, and of course my coming death. I had an assumption that this is how it always goes and that this “murderers' row” of unpleasantries was my future. I could not even imagine enjoying my life. Life was going to be endured. No more LIVING!
I recently had coffee with a friend of mine who is LIVING with lung cancer (six years and counting), and I asked her what she felt was most difficult about surviving with cancer. She could not come up with a specific answer. However, when I asked her what was most beneficial about her circumstances, the answer came quickly and most assuredly. She was so grateful that LIVING with cancer “opened” her eyes.
What wisdom. What perspective. What a gift to hear.
And so, in keeping with the holiday season and some of our traditions of gift giving and receiving, I came up with some thoughts about my journey of living with multiple myeloma and the gifts that come with the territory.
My eyes have been opened to the love of my wife and children. Sharing the disease with me, my spouse listens to my ad nauseum thoughts and ramblings about multiple myeloma, about dying and death and what comes next. And she does so without any complaints (she told me I had to write that). My children, though they are grown men, keep it real by reminding me that I am their father (which I love) and that multiple myeloma does not stand ahead of that.
My eyes have been opened to all of the kindness and goodness of people. It is amazing how people step up to help – and most of the time without being asked. My sister and brother-in-law volunteered to become my caregivers during my transplant without so much as a peep of complaint or hesitation. Meals, kind words, prayers, and assistance in so many ways and by so many in the community just showed up at our doorstep.
My eyes have been opened to a perspective that marvels at the fact that I am alive and LIVING because of so many others I will never know or meet. People who studied hard in school, went to class and got degrees in science, and then applied themselves developing new drugs and treatments that to date have been effective in keeping me upright and above the sod. Doctors who diagnose and analyze, nurses who care for me when it’s really needed. They smile while working in a cancer unit; they visit and share their lives; they help in keeping my mind away from the constant seriousness of the situation and the very dark alleys that cancer makes available to all of us. Wow, such heroes.
My eyes have been opened to the importance of acceptance in my life. I have learned that I am not in control (I mean really, how many times do I need to be reminded of this?), and that it is my choice to get up and keep LIVING! I know that I do not have to fix anything and know everything. I do not have to “make things better”; I just have to be who I am and accept that which comes to me. I still get to golf, read, laugh, and share with loved ones. Now that’s what I call LIVING!
Likewise, my eyes have been opened up to the suffering that is all around us. My goodness. Before multiple myeloma, shamefully, I was too busy and/or too myopic to acknowledge the suffering. My plans did not include a section on the suffering of others. But those big huge hospital buildings you see or visit aren’t built because there is no suffering. My oncologist reminded me that very few of us live to be 95 without any concerns and then die in our sleep. No, there is much suffering, and it’s almost as certain as death. It is everywhere, and it does not discriminate. What a gift it is to recognize the suffering and to be available when witnessed.
I know that I would not wish multiple myeloma on anyone. I would be less than honest if I did not mention that it’s a struggle involving constant fatigue, copius pill taking, and of course the unusual gastrointestinal workings that have become the norm. But, in LIVING with multiple myeloma, I have found more clarity in my life and a renewed understanding of the importance of kindness and relationships.
My eyes have been opened, and for that I am most grateful.
Finally, thank you to all who have responded positively to my first two columns. I was somewhat uncertain about how they would be received. Thank you so much for your encouragement and your kind words.
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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