Since retiring from my job as a school superintendent nearly six months ago, I have made a concerted effort to not allow what time I have left in life to be pre­occupied with the fact that I have multiple myeloma. In other words, I try not be defined by the disease.

Little did I realize how difficult that would be.

Because my life would be less structured with much more free time during retirement, I was concerned that the challenges of living with multiple myeloma would dominate my thinking even more than they did when I was working.

Being on a maintenance therapy is the first obstacle to not being pre­oc­cu­pied with the disease. My day starts with … treating multiple myeloma. (Or, as my doctor describes it, keeping my myeloma sleeping.) I take one pill of Revlimid (lena­lido­mide) each morning, followed by two tablets of Welchol (cole­seve­lam) to control diarrhea, two tablets of the antiviral acyclovir, one tablet of aspirin to prevent blood clots, and two potassium capsules.

Ingesting one pill to control the multiple myeloma and seven pills to offset the side effects of that treatment is a daily reminder of being a multiple myeloma patient.

It is only since I have retired that I have noticed the amount of advertising that is directed at treating cancer. In one day, I noted four different cancer centers advertising on a national cable television station. Although multiple myeloma is never specifically mentioned in these ads, one tends to view advertisements from one’s own life experiences. So every time one of those ads appears, it is a reminder of being a multiple myeloma patient.

Far more numerous on the airwaves than cancer center ads are ads for specific drugs, some of which could be used for the treatment of multiple myeloma or for the side effects of myeloma-related drugs. Again, a daily reminder of being afflicted with multiple myeloma.

There are even reminders where you wouldn’t really expect them, such as the national news.

A case in point: President Obama recently appointed Vice President Biden to lead the federal government's “Cancer Moonshot,” and the Vice President will soon host a summit related to the initiative. As with ad­ver­tis­ing, one views news reports from personal experiences. So when updates about this initiative are reported, I automatically think about how it may impact my personal situation as a multiple myeloma patient.

While constant reminders of our disease make it difficult for us to avoid defining ourselves in terms of the disease, we also face the challenge that many people we know define us in terms of multiple myeloma.

I hadn’t realized this until a recent social event, where I learned that, despite my best efforts over the last four years, multiple myeloma has defined me in the eyes of others.

Several weeks ago, the board of education of the school district I retired from held a dinner to honor me and the board president who retired from the board at the same time that I did as superintendent.

Prior to the arrival of the meals that evening, we engaged in a reflective exercise. A basket was passed around that had slips of paper listing different events, activities, and initiatives that had occurred during my tenure as superintendent. Each person took one slip of paper and read its content. I was expected to comment on what was written on the piece of paper.

It was enjoyable reminiscing on the events of my time as superintendent. I had no trouble quickly com­ment­ing briefly on such things as successful levy campaigns, contract negotiations, hirings, and the like.

As we moved around the table for the second round of comments, I was thrown off guard when the former board president reached into the basket, pulled a piece of paper from it, and read "multiple myeloma."

It seemed as if a thousand thoughts went through my mind upon hearing those two words. Just two weeks earlier, I had given the graduation speech to the class of 2016, telling the graduates not to allow cir­cum­stances to define them. Thus, I didn't want to appear hypocritical and allow my comments to suggest that multiple myeloma had defined me. At the same time, I was amongst friends, and here was an opportunity to share with them how difficult the dark days of treatment had been, which I had always tried to downplay whenever they expressed their concern. But, I didn't want to elicit sympathy from a group who had been so supportive during those tougher periods of treatment, or make excuses for any of my failures.

During the awkward silence that took place while I contemplated my response, I sensed that everyone seemed more interested in this response than any other that I had  given. I wanted to make sure that my response related to how multiple myeloma had impacted my work as super­in­tendent and not bore those in attendance with personal challenges I have encountered that had nothing to do with being a super­in­tendent.

My eventual response was that the disease had cheated me out of an opportunity to complete some of the initiatives I had begun. Because of multiple myeloma, I had retired three years earlier than I initially had planned, at a juncture where some of what I had considered my most important initiatives needed my lead­er­ship. Furthermore, treatment and its side effects had sapped me of the energy necessary to push some initiatives to completion that were started years ago when I was first diagnosed.

To be more concise, multiple myeloma had cheated me of time.

Since retiring, I have started training with a national lead­er­ship company with the hope of becoming a cer­ti­fied speaker and trainer with that company, which will enable me to start an educational con­sult­ing busi­ness. In one of the training sessions, a statement about time was made that in my opinion applies to living with multiple myeloma:  Time can't be added, stopped, or speeded up; it can only be managed.

Managing time while working and living with multiple myeloma is a challenge – sometimes too much of a challenge – to overcome.  Such was the case for me.

Hopefully, during this new phase of my life, I will do a better job of managing time so that multiple myeloma isn't defining me or cheating me of something than can never be recovered.