Myeloma On The High Plains: No Matter What
I must be honest with you, I think about dying a lot. Certainly not all of the time, but it is a big part of my daily routine and has been since I was diagnosed. And that is something that is new to my life.
Much of my life after diagnosis has been about the same as before diagnosis. I still work and put in time at the office. I still play golf and try to exercise at least four to five times a week. My wife and I still visit with our friends, live in the same house, and drive the same cars. I still like to read, and the TV still puts me to sleep on many nights. All of that is pretty much the same.
Yet, in spite of all this “sameness” or the required adaptations to my routine since diagnosis, like taking pills and getting blood draws, there is this one big (actually it is huge) issue that, while not new, is something that I just cannot seem to grasp and it takes up more of my time than ever before and it certainly has resulted in a change. And that is the awareness of the certainty of my death, my mortality.
Look, I believe that all of us know we are going to die. I have lost people very close to me. I sell life insurance for crying out loud.
However, now it is different. Very different. It has gotten so much more personal. It definitely is closer as I age and because I know that having cancer is not a life extender. So maybe that is why more time is being spent on the subject.
A couple of weeks ago, there was a notice in our local paper. Someone I knew here in town died. He was two years younger than me. What was not mentioned in the paper was that he had been diagnosed with multiple myeloma about two years after I was diagnosed. He lasted about three and a half years. We visited on occasion about our cancer journeys.
I am acutely aware that my cancer is my cancer. One of the most poignant pieces of advice that the oncologist gave me right off the bat was “Mark, this is your cancer. No one else’s. The existing statistics, the numbers, the conjecture, and test results about multiple myeloma do not include any of your data. This is your journey.”
Each and every one of us has our own challenges. It is our journey to walk. Of course, what was not mentioned, what was left unsaid in the conversation with my oncologist, was that each and every one of us, no matter the path taken, ends up in the same place. It did not need to be said because I already know where this all ends. It is a constant, and it is guaranteed. And for me, it has become a key ingredient in how I live my life. I do not know what comes next or when or how that will happen. I do, though, reflect on it quite a bit.
The value of our cancer struggle is not in the belief or the expectation that we are going to live forever. I mean, how foolish does that read? The value of the struggle is in knowing that we DO NOT live forever. Good gravy, we have just a limited time.
Often, knowing the certainty of my mortality does not feel very good, or very desired, or fair, or any other word you could use to describe a sense of dissatisfaction. Maybe, at times, it even conjures a sense of loneliness.
"Well," I ask myself, "so what?" I can struggle with it if I want. That is a choice that I have.
However, I must realize that it does not change the reality of the situation one iota. So I tell myself: Spend some time with the struggle and then let it go. Focus on an awareness which counteracts the struggle and presents the opportunities and the experiences that are mine for the taking. Realize how lucky I am and how lucky we all are to be involved in the struggle. Realize that it is all good and that it is going to be okay, no matter what.
Friends, enjoy the day. Enjoy the challenges. Enjoy the uncertainty, the successes, and the failures. Enjoy it all, or at least try.
Oh, I get that certain things cannot be enjoyed. That’s just life. That’s fine. For me, I do not enjoy snow in June, tuna casserole, or a dirty inside of a car on a long road trip.
Do I enjoy living with multiple myeloma and all that it brings? Well, let me put it this way: I enjoy living, and if I can avoid the tuna casserole, I will take it with a smile.
Mark Pajak is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month.
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Great article. Yes, we know we won't live as long as we had hoped, but none of us is guaranteed tomorrow. And I have found over the years that myeloma, like most cancers, is like a virus; it is different for everyone. Some may have a more aggressive form and some not so aggressive. Some have a treatable form and some people just don't respond to therapy. I have hated seeing people die from this cancer over my 12+ years experience with it, sometimes feeling guilty for enjoying a complete response, but learning that through the tears and empathy for the friends and family of those who succumbed, that I need to live each day with joy and thankfulness. The Lord has given me these extra days and years for a reason, and I intend to use them wisely. Mark, I wish the same for you!
Thanks, Mark, for the thoughtful article. I think that in terms of mortality now I could compare myself to completely healthy people, who may have a long lifespan, and also to fellow cancer patients, who may not be fortunate enough to have a long lifespan. So I am careful in other ways, trying to avoid accidents, infections, and the like, so that whatever has been "given" to me in terms of treatment will be put to the best use. I have lowered my expectations as to that, and just try to maximize my time. I still work at paid and unpaid work, but also take time for enjoyable activities and to enjoy my family life also.
I enjoyed reading your thoughts, Mark. My dad, who was a wise man and who lived to the ripe old age of 91, told me once that from the moment we are born we are all closer to the end than to the beginning. I’d never considered that, so it was an intriguing thought. I remember being diagnosed with myeloma and thinking, “Well, I probably won’t be the last kid on the playground.” Later, as I tried to wrap my brain around having this disease, I came to terms with it. I may not be the last gal standing, but I can still make it count! My oldest sister died after battling cancer. She never gave up. If I’ve learned anything from her, it’s that I get to choose how I handle this.
So, to me, every day above ground is a good day. That doesn’t mean it’s a perfect, fun-filled day. It just means it could be worse. I try hard not to think of my mortality. Needless to say, I have contemplated it at great length. (Who among us hasn’t?) I don’t think I fear dying; I fear missing out on life! My husband, my children and their families, and my grandson are my life. If someone in our family has to have this disease, then, I’m glad it’s me. I can handle it. I’m not sure I could handle watching one of my loved ones suffer and not be able to fix it for them. (I’m a mom; I fix things!)
All of us have had to deal with thoughts of our mortality. They are sobering thoughts, but like Susan said, none of us are guaranteed tomorrow. My mantra that I cling to is: Don’t worry until you have something to worry about! It’s a wasted emotion, at best, not to mention how depressing it can be. Carpe Diem! Do things that make you happy and that make you smile! Make the time you have left count! Don’t dwell on the disease! Focus on living!
Great response Nancy!
I had an old boss who said: "Don't put any effort (or worry) into things you can't control. Concentrate and focus on what you can control." Works for me with multiple myeloma.