Myeloma On The High Plains: Hitting The Curve
When trying to encapsulate my life experiences and paths traveled, there are two very distinct roads taken. There was the path taken with experiences before “the cancer,” and then, of course, there is the current path of living with “the cancer” that I am on now.
While recognizing that there were events before diagnosis that were memorable – wedding, birth of children, death of a parent – generally speaking, my life before multiple myeloma was pretty routine. My old life.
My new life started a little after 11 a.m. on January 15, 2015 in a very nondescript doctor’s office. I remember sitting in the chair on the left side across from his desk, wearing gray pants, a blue shirt, and a blue and green necktie, when I first heard three of the most powerfully spoken words I will probably ever hear: “You have cancer.” And at that point, the old “before cancer” life was gone. Never to return.
Not long after my diagnosis, it became obvious to me that there was going to be very little gained from looking back at my old life. First off, thoughts like “Gee, I wish I didn't have cancer” (focusing on the old life) or “How could this happen?” or “Why did this happen?” were getting me nowhere except possibly to feeling a bit sorry for myself and damning my fate.
For my well-being, I had to accept having multiple myeloma, plain and simple. Why did I get it? Well, does it really matter? I mean, I got it. Plain and simple. As time passed, the notion or belief that knowing the “why” or “how” could be beneficial as I tried to move forward never seemed to add up.
The important issue for me was accepting my fate, accepting the reality of having multiple myeloma, and then working as much as possible to adjust to and accept this new reality. I could wish and hope all I wanted, but none of that was of value.
(Oh, I'm not perfect. So even today, from time to time, the "why" and "how" questions float into my consciousness.)
The physical tasks associated with having and living with multiple myeloma to this date have been full of instructions: when to take my pills, when to re-order more pills, when to schedule my port flush, when to schedule my blood draws, when to wear the mask, what not to eat, and so on. It's all pretty straightforward. Yes, my life is different now, but not that much different. Besides, if I want to live, I have to do what is necessary. So there's not been much pushback on my part. I was and am grateful that I had choices to make.
For me, the greater struggles were and still are of the mental nature. Finding and implementing a method to help me get through the “dark times” was critical. Re-focusing my mind away from thoughts about unfairness, self-pity, and resentment became and still are a priority. I had to put to rest, or at least minimize, many of the thoughts I had about my life before multiple myeloma.
That was then. This is now. And this mental “training,” as I have come to identify it, is an everyday kind of task.
I must accept who I am and be mindful and grateful for the place that I am at right now, today. I have today. How am I feeling today? What will today bring? Can I work towards an awareness of the goodness that abounds today?
We all could complain about the many different and difficult new situations that come with multiple myeloma, but really, what good would that do? Multiple myeloma has taken its toll on me, no question about it. But it is what it is. So, stay in the now.
Living with multiple myeloma and knowing proof positive that I have but a short time on this blue planet makes what I do today seem so much more special and valuable. And I like that. Working to develop a mindset that makes me aware of life’s goodness helps create for me a more positive and brighter outlook and environment. Much of the heavy lifting required to try and make sense of what happened in my life before cancer falls away when I stay in the now. The same is true for looking into the distant future. In a way, having cancer simplified things. It is for me somewhat freeing.
No multiple myeloma: That was then. Having and accepting multiple myeloma: This is now.
When I was growing up, I envisioned myself swatting home runs as a professional baseball player. Well, swinging badly at three straight curve balls and heading back to the dugout when I was about 17 ended that vision. I couldn’t hit the curve. I accepted it and moved on.
Five and a half years ago, I came up against multiple myeloma with little or no expectations. I still do not know what to expect. I am one “bad numbers” blood draw away from some very serious worry, some very serious anxiety, some very seriously depressing thoughts, some ... STOP. STOP. STOP.
Today, in the now, I am fine. I am still at bat, still swinging at what life throws.
Soooo, maybe in a way, I have finally learned to hit the curve, or at least foul it off.
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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Mark - Thanks for the reminder to "stay in the now." Wise words and so apropos, especially with all the uncertainty in our lives at the moment. Keep swinging!
I can honestly say that I have never asked the universe "Why me?". I remember sitting in a waiting room about to have my first round of treatment and another patient and their family being quite vocal about the cancer they had and how undeserving they were, and how furthermore someone else was more deserving and, I quote, "Junkies and criminals should get these horrible diseases."
I thought to myself how arrogant to think that anyone is more deserving than someone else, or that we are not deserving because we are good people. From that point on, I did not waste any time wondering why or how. I accepted that it just is.
Yes, I still have self-obsorbing down days. Ultimately life goes on around us. With two kids and a mortgage, I personally have little time to think about such things. I think the sooner we can accept our new normal, the head has a better chance of living peacefully. For me personally, the head in some ways has been harder to endure than the treatments and symptoms of the disease. Mostly because I do still have day-to-day stresses of young children and a house to keep financially. That is where my head is often at.
Now with COVID-19 and no immunity I think it fair to say I feel like a surfer surrounded by great whites trying to keep still so they will pass me by. Who knows what the future holds?
I try to focus on the fact that we are still alive and live as best as I can.
I know exactly what you mean. I got past a lot of the "what ifs" by realizing that before I was diagnosed I did not know the how / when / where I will die, and after the diagnoses, I still don't know. I'm doing well now and realize that could change, but for now, things remain as before. I try not to worry too much about my future with myeloma since the end could come from anywhere. I'm still shooting for a healthy happy 100 (I'm 64 now). Is that likely? No. Is it possible? We'll see.
Thank you Mark. I appreciate your sharing and your effort to do so. I’m 71 and 4 years in remission.
It doesn’t get any more fortunate than that. Yes, I’ve got enduring side effects from the treatment and four more years on the old chassis, but the grass is still green when I look out the window.
I still read all the columns on The Beacon. It keeps me in the present and aware of what is. It’s been a gift to me to be forced to focus and savor the moment. It’s also wonderful to experience, through reading, the courage and spirit of others.
Thanks for the thoughtful column, Mark. It is very real to have to live in the now and remember to take all the medications, stay as healthy as possible, and try not to worry too much about how and when one got multiple myeloma. But I think it is a good idea to ask why, in terms of environmental impacts or even lifestyle choices, since one would want to help others to not get any sort of cancer. Thus research into these matters could be helpful, in terms of preventing cancer in the first place. We can't help now that we have myeloma, but it would be good for those who don't have it to have some ideas as to how to avoid that! In my case, I think back on any carcinogens I may have come into contact with, through work or the environment, that could have started off this problem.
Thanks Mark. Your words resonate strongly with me. No sense looking back and living a life of regret. We must move along and make the most of we have. Glad you hit this out of the park. Cheers.
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