Sharing Steve Mohr's Blog: Worst part of having Myeloma

sharing because this is so well put and a lot of how I feel.

http://www.myelomabeacon.com/headline/2015/08/21/mohrs-myeloma-musings-reflections/

Mohr’s Myeloma Musings: Reflections

7 CommentsBy Steve Mohr
Published: Aug 21, 2015 12:44 pm

During a recent conversation I had with a friend, he un­ex­pected­ly asked me what has been the worst part of having multiple myeloma. For­tu­nate­ly, his cell phone rang before I could answer the ques­tion. It saved me from giv­ing an answer to a ques­tion I have never given much thought to.

At various times since then, I have reflected on what has been the worst aspect of living with multiple myeloma.

While I consider myself a reflective person, think­ing back on past ex­per­i­ences of living with this disease is some­thing I have avoided. My attitude has been to look forward, attempting to live as normal a life as possible.

For the most part, I have been able to do that because every treatment regimen I have undergone so far has been successful. I find it foolhardy to try and think ahead and anticipate what will happen next with this dis­ease and plot a course of action to deal with each possible scenario.

As I pondered my friend's question, though, I wondered if he wanted to know what the worst aspect was phys­i­cally, mentally, or emotionally.

Physically, this is an easy answer. I have stated several times in previous columns that the physical chal­lenges I have experienced with multiple myeloma pale in comparison to what many suffer from with this dis­ease. This was reinforced after I recently read Tom Brokaw's book, "A Good Life Interrupted," and learned of the debilitating back pain he endured. I have suffered nothing physically that comes close to compare to that.

Having said that, there is nothing that I have been through physically that compares to the first eight days of my autologous stem cell transplant experience in June 2014. I went in with a macho attitude of being able to handle anything that the procedure involved. I brazenly told my doctor beforehand that I would set a record (11 days) for the shortest hospital stay at my cancer center. Looking back, I now know what was behind his smile at my boastful prediction.

On about the fifth day I remember thinking that, if it was time for me to meet my maker, I was fully prepared to go. I was discharged after 16 days, the average stay for a patient undergoing a stem cell transplant.

Complete recovery from the physical effects of the stem cell transplant has been slower than I anticipated. It wasn't until this past May that I no longer had bouts of fatigue, and that the neuropathy subsided to barely being noticeable. I am thankful that I now feel better than I have since being diagnosed three and a half years ago.

While the worst of the physical effects of multiple myeloma are minimal and can be managed, such is not the case mentally and emotionally.

Mentally, my cognitive skills and abilities have not seen the recovery from the fog of chemo brain that I suf­fered during induction therapy and the stem cell transplant. I’m struggling to recall names and facts, deliver key points in public speaking engagements, focus on details of tasks, and generally concentrate for long periods of time. There is no history of dementia in my family, so I vainly blame it on the 10 mg of Revlimid(lenalidomide) I take daily as part of my maintenance therapy.

Emotionally, since being diagnosed with multiple myeloma, I have become far more concerned about what others think of me. This is a complete change in thinking for me. Through 29 years as a high school bas­ket­ball coach and six years as a school district superintendent before being diagnosed with myeloma, I de­vel­oped a pretty thick skin and could not afford to be overly concerned about what others thought of me. During the last three and half years, however, I have often wondered if others see me as less than whole, an invalid, contaminated. These questions of self-worth were reinforced when I learned that some of my staff, with the best of intentions, chose not to come to me as they should have to address issues because of what I was going through early in my treatment.

So, in summary, the answer to my friend’s simple, direct question is easy. For me, the worst part of living with multiple myeloma is the mental aspect, the decline in my cognitive skills.

While reflecting on my past and pondering my future, I need to point out that I’m doing far better now than I did before my diagnosis three and a half years ago. I am hopeful I will become a statistical exception to the prognosis of 8 to 10 years I was given then.