As I wrestle with the early treatment phase of this disease, it is my hope that by shar­ing my experiences I can provide some valuable insights to readers who are newly diagnosed and beginning treatment.

But before sharing in this column what I have been through as I finish the fifth cycle of treatment, I have two confessions to make.

First, treatment is tough, really tough -- far tougher than I ever imagined it would be. My approach to treatment was naively ignorant despite warn­ings from my doctor and all that I had read that indicated that the side effects of treatment would very likely be far worse than the actual symp­toms of the disease.

Second, a positive mental attitude, an appreciative disposition, knowledge, and faith (things I wrote about in my last column) can only do so much to help one cope with the treatment side effects.

So with those confessions out of the way, what have the past five months of treatment been like?

Initially, the only side effects I experienced were associated with dexamethasone ^[1] (Decadron). Like the phar­ma­cist suggested, I took my first dose in the morning (on a Wednesday - a bad move from a work per­spec­tive) and proceeded to not sleep for the next 36 hours. And while I have suffered from insomnia for decades now, nothing prepared me for going for weeks on two to three hours of sleep a night. I tried several dif­fer­ent sleep aids to combat the insomnia but found that they did little to improve the situation. In addition, they seemed to contribute to what I have found to be the most worrisome side effect of chemotherapy – chemo brain.

What I have experienced in regards to chemo brain is a complete breakdown in my ability to focus. I really struggle to stay on task. While I have never considered myself the sharpest tool in the shed, I have always taken pride in being able to undertake a task by methodically breaking it down into a step-by-step process, and then analytically completing it in a timely and accurate manner.

My secretary reassures me that there is no noticeable difference in my work product or ability to get things done. She insists that I am being too hard on myself, but I know better. The feelings of procrastination, con­fu­sion, and disorganization are real, and the apprehension and fear I sometimes now have of under­tak­ing even the most simple of new tasks is something I cannot overlook.

I am constantly misplacing things. I’ve lost three pairs of reading glasses and two sets of car keys in the last three months. I have difficulty remembering names, even the names of people I have known for decades.

Knowing that dexamethasone can produce wild mood swings and periods of anger or aggression, I have gone out of my way at work to control how I interact with people. As the superintendent of a small school district, I am in daily contact with community members, business leaders, staff, and students. Every problem within the district eventually lands on my desk.

To date, as I deal with the myriad of problems that come my way, I have been able to avoid any dex-induced outbursts that might prove embarrassing to me or the school district. Unfortunately, my family has paid the price for this because, when I arrive home after working so hard during the day to avoid a “roid rage” incident, it doesn’t take much to set me off.

This pattern continued for the first three cycles of treatment until I wised up, moved my once a week "Dex Day" to Friday (much better for work) and asked my doctor to consider lowering the dexamethasone dose, which he did. These changes have had a positive effect as I am now sleeping much better and the mental fog seems to have decreased over the last two cycles.

Since starting treatment in November, the neuropathy in my hands and feet has intensified. What started as an occasional slight tingling sensation in my hands and feet has now progressed to a mild to moderate pain that can’t be ignored. Non-prescriptive remedies (vitamins and supplements) that I have tried have been unsuccessful in relieving the pain.

I just recently began taking Cymbalta (duloxetine), a drug commonly used to treat depression, dia­betic neuropathy, and fibromyalgia. Thankfully, the pain and discomfort is gradually subsiding. While I welcome this relief, I am adjust­ing to the occasional mild nausea and fatigue that are side effects of Cymbalta.

Recently, I have begun experiencing leg cramps and back pain, listed side effects of Revlimid ^[1] (lena­lido­mide).

Despite my litany of the mental and physical side effects of treatment, five cycles of treatment have had a positive impact on my myeloma.

My doctor is pleased with this response and, because of the success of the treatment, plans for a stem cell transplant in June can move forward.

While my condition and the side effects I am experiencing may pale in comparison to what many with this disease are dealing with, for someone who has been a model of good health, dealing with this phase of the multiple myeloma battle has been the toughest thing I have encountered in my life. It has been all en­com­pass­ing, challenging me physically, mentally, emotionally, and spiritually.

I know this is the price we have to pay to treat this incurable disease. I have to admit that I currently think less of a cure for multiple myeloma, but rather, of that day when I am completely treatment free. If that is lowering somebody’s expectations, so be it. It is the reality I live in now.

Winston Churchill once said, “If you’re going through hell, keep going.” Good advice for those of us with multiple myeloma!