Can’t know what’s high, ’til you been down so low.
The future’s bright, lit up with nowhere to go.
To and fro the pendulum throws.
We are here and then we go, my shadow left me long ago.
Understand what we don’t know.
This might pass, this might last, this may grow.
Easy come easy go, easy left me a long time ago.
– Pearl Jam “Pendulum”
Not only do I like this tune and highly recommend listening to it, but I also find the song’s content very applicable to multiple myeloma.
The physical and emotional effects of multiple myeloma are not linear. There isn’t one starting point that directly moves to a finish point. Life with multiple myeloma is a pendulum, not an arrow. To and fro the pendulum throws.
With some diseases, a person feels sick, displays evident symptoms, is treated, and recovers. For me, like many myeloma patients, I wasn’t sick, and I didn’t have any evident symptoms of the disease. It was accidentally discovered, I was treated, which made me ill, and I improved. Even so, I never returned to my pre-diagnosis self. Others come to their diagnosis very ill with many symptoms, receive treatment, and improve.
Whatever our end state is following treatments, it isn’t static.
For most of us, myeloma will return, the pendulum throws, and we go through the back and forth of illness, treatment, and improvement. Sometimes multiple times. Even during times of remission, our health may move to and fro.
It can be discouraging to feel your health improve only to see it decline again. However, that is often the reality of living with this disease. It can be confusing and discouraging if you expect a straight line between diagnosis, treatment, and recovery.
Emotionally, I was at my lowest the first few months after diagnosis. The anxiety I felt was sometimes debilitating and often cut me off from the people and things I love the most. This extreme low, however, taught me to appreciate and recognize the highs that followed.
Possibly my highest point in the last four years was our recent family trip to Disneyland. However, there have been many other high points since my diagnosis that I appreciated more because of the low place I had come from. Can’t know what’s high, ‘til you’ve been down so low.
Within weeks of experiencing this joyful time, I had bouts of sadness and anxiety, mourning the possible loss of time with my grandchildren, wife, and family. While I intellectually understand these feelings, and I’m fairly good at letting them pass, they emerge nonetheless, sometimes unexpectedly and deeply.
I’ve never returned to the lowest point I felt after diagnosis, but I know it can happen again with a relapse or future treatment failure. Certainly, I swing back to sadness and depression with some frequency, even as my physical health continues to move in a positive direction. The highs may not always be as good as before, and the lows are not as bad, but like a pendulum, to and fro, the feelings change.
After my diagnosis, I recognized how low I had fallen, and I sought professional counseling. I have friends and family to turn to, but having someone to whom I can say anything was important. I didn’t have to consider whether sharing my feelings would scare him, make him sad, or make him judge me. Those considerations are always present when I talk to friends and family. It helped immensely, and I use the lessons I learned to help me past moments of anxiety that visit me now and then.
My counselor retired in August 2018 and, because I was feeling well, I didn’t look for a new counselor to continue my sessions. Since that time, however, I’ve realized how much I appreciated talking to him, even when I was in good spirits, and how it kept me stable. I realize now the importance of those conversations, and I’ve found a new counselor to help me maintain my balance.
Living with multiple myeloma isn’t easy. Understanding myeloma can challenge the experts; it’s even more mysterious to non-medically trained patients. The variety of treatments available give us many options, but it also makes the decisions difficult. Enduring the changes in our health and emotions is tiring. Easy left me a long time ago.
The one truth about multiple myeloma is that we don’t know exactly what our future holds. We have ideas, good and bad, but what do we know for sure?
My doctors can prepare me for what may happen in the years ahead, but there is no certainty in any prediction. This might pass, this might last, this may grow.
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Photo Credit: (c) 2015 Mark Pouley
“The futures bright, lit up with no where to go.”