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Mohr’s Myeloma Musings: A Life-Changing Decision

By: Steve Mohr; Published: September 18, 2015 @ 3:23 pm | Comments Disabled

Life is full of choices and decisions. For those of us afflicted with multiple myeloma, we are forced to make decisions that, prior to our diagnosis, we never imagined we would have to make. Is a second opinion necessary? Do I watch and wait or start treatment immediately? Undergo a stem cell trans­plant or even a tandem trans­plant? Pursue main­te­nance therapy or go treatment-free until relapse?

Unfortunately, these decisions are guided by the necessity of treating an in­cur­able disease. They really have nothing to do with the important parts of our life, such as work and family. Everything is focused on beating the myeloma, extending our life span, and, hope­fully, living as normal a life as possible.

Because multiple myeloma tends to be more common among those 65 years of age and older, how the disease impacts one's career may not be a factor to consider for many who have multiple myeloma, as they already have retired or are nearing retirement. But for those of us diagnosed in our fifties (or younger), our prognosis, how the disease affects our work, and how we feel about our work are issues we have to confront at some point.

As I have written in previous columns, every treatment regimen that I have been through – radiation, in­duc­tion therapy, an autologous stem cell transplant, and maintenance therapy – has been successful. My latest three-month check-up confirmed that. Fifteen months after having an autologous stem cell transplant, I feel better than I have felt since my diagnosis three and a half years ago.

Despite that and the fact that I still love my job as a school superintendent, I have decided to retire at the end of the calendar year.

It is because I feel so good now that I chose to end my 37-year career as an educator. The reality is that this is the best I will feel physically, mentally, and emotionally. Relapse is inevitable, and with relapse will almost certainly come a more aggressive form of treatment. Relapse may be years, even as much as a decade, away, but the memories of how I felt during induction therapy and after the stem cell transplant are still with me, and I remember all too well how difficult I found my job during that time.

What also factored heavily in my decision to retire is the fact that I have had one bout of pneumonia and three rather serious upper respiratory infections since the stem cell transplant in June of 2014. The fact that I con­sider it an important part of my job to be in contact with our students – especially our elementary students, who some might say are germ factories – probably explains my susceptibility to these infections. However, I refuse to administer our district solely from behind my desk.

In addition, my ability to focus, recall facts, participate in any prolonged complicated discussion, as well as other cognitive skills important in the performance of my job have decreased noticeably. It therefore is best I step aside before any mistakes made as a result of such declining skills negatively impact the students I serve.

When I was diagnosed three and a half years ago at age of 56, the prognosis was seven to eight years. I am sure that the number has improved since then. Regardless of whether it is seven, eight, nine, or ten years, if I am a normal piece of statistical data, I probably won’t make it to the average life expectancy of 76 years. For 37 plus years I’ve “talked the talk” of the importance of faith, family, and friends. It’s now time for me to “walk the walk.” Retiring from my profession will enable me to do that.

Some might say that I have given in to multiple myeloma and allowed it to take even more control of my life than it already has. I like to think of myself as a proactive person. I want to plot my own future and not allow the circumstances of this disease to dictate my decisions.

I tempted fate once two years ago when I started coaching basketball again. Three months later, my mye­loma numbers spiked. I had to begin treatment and, after one year, I stepped away from coaching again. Mul­tiple myeloma robbed me of one of my passions in my life. I don’t want to let it do so again.

In spite of my fears of the unknown and the uncertainty of so many things, I look forward to the future. I feel optimistic that my doctor and the new advances in treatment will provide me with a life beyond my 37 years in education that is equally fulfilling and enjoyable.

Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is pub­lished once a month. You can view a list of his columns here [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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