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.