A national news magazine recently had a cover story about potential new cancer immunotherapies. The article also includes a discussion about clinical trials. While I found the article informative, I thought that it focused too much on the cost and exclusiveness of clinical trials and the fact that such trials are not available to most cancer patients.

What gave me the most food for thought from this article was the opening sen­tence: "Dates are important to a person who knows he is dying from cancer." The article suggests that dates from such events as "the call," the first visit to the cancer center, the first treatment, and the like, are dates that become etched in memories.

I reject using the word terminal when contemplating my future or dis­cuss­ing my condition. I feel very much alive and not like I am dying. Nonetheless, it is a pretty safe assumption that multiple myeloma will cut short my life. The above mentioned article got me to thinking about the significant events of my four years of living with multiple myeloma.

I am terrible remembering dates, especially milestone dates such as birthdays and anniversaries.  Having said that, by a sheer quirk of circumstance, four years from the day that I am writing this column I received the call from my doctor informing me that I had multiple myeloma.

While I find it difficult to remember dates, I can recall events. There are four events that I remember well since April 12, 2012.

One of my most vivid early memories of being a myeloma patient was when my wife and I made our first trip to my cancer center for my first bone marrow biopsy. We mistakenly turned left when we should have turned right out of the elevator, and we ended up in the inpatient chemotherapy ward.  For someone who felt and looked very healthy, it was a sobering sight. Almost every patient was wearing a mask, and most were hooked up to an IV cart. At the risk of sounding insensitive and feeding the stereotype of the physical ap­pear­ance of cancer patients, many looked as if they had endured chemotherapy for quite some time. I couldn’t help but wonder if this was my fate.

The second memorable event of my life with multiple myeloma involved my initial radiation treatment for a 3 centimeter-sized lesion on my left hip. The radiation wing of my cancer center was located in the lowest level of the building. The warm, welcoming atmosphere created by the disposition of the receptionists and bubbly enthusiasm of the young technicians quickly gave way to a more somber, dark feeling as soon as I passed through the thick metal doors into the radiation room.

The room was sparsely furnished. Located in the middle of the room was the external radiation therapy machine. I clearly remember thinking that it was ominous looking, reminding me of Star Wars-type weaponry. The country music that the young technicians were playing lightened the mood somewhat, as did the good-natured banter between us that centered around the fact that there was only one country music artist I en­joyed listening to, Shania Twain. (The technicians surprised me with Shania Twain music playing over the sound system when I returned the next day for my second treatment.)

That initial radiation treatment and the 24 treatments that followed over the next five weeks were anti­climactic.  It actually took more time to get undressed and situated for the treatment than the actual treatment itself.

Fortunately, I have not suffered physically directly from multiple myeloma. But my first memory of a physical impairment associated with the treatment of the disease – and the third memory in my list of four – occurred three weeks after my last radiation treatment. I was on a family vacation, taking my daily early morning walk on the beach, when I was suddenly overcome by an overwhelming bout of fatigue. The fatigue lingered for the rest of our vacation, and it prepared me somewhat for similar bouts of fatigue caused later by Revlimid (lena­lido­mide).

Six months after my radiation treatments ended, I began induction therapy that included a daily dose of 15 mg of Revlimid and a once weekly dose of 25 mg of dexa­metha­sone. My first experience with dexa­metha­sone was truly memorable – the final memory in my list. I remember taking the dose before leaving for work at 6:00 in the morning. I didn’t sleep for 36 hours. I was full of energy, overly talkative, and argumentative. Despite warnings to my family that such behavior might occur, they weren’t prepared for this new personality in the family.

What are the four lessons I have learned in four years of living with multiple myeloma?

First, be cautious in using the term terminal when describing the disease. The term terminal suggests immi­nent death. I know four individuals with multiple myeloma in my immediate surroundings. Three of those four were diagnosed at approximately the same time I was, the fourth just five months ago. All four are now living near normal lives and their prognoses, like mine, look good.

The second lesson I learned was to not underestimate the treatment side effects.  The individual who coined the saying “The treatment is worse than the disease” must have been thinking about multiple myeloma when they came up with the saying.  While the various treatment regimens are generally effective in slowing pro­gression of the disease, the side effects of these treatments, as every multiple myeloma patient can attest, can significantly alter one’s quality of life.

To illustrate the above point, my personal experience regarding the side effects of treatment is probably similar to most who are on a treatment regimen. My current maintenance treatment plan has me taking one pill (10 mg) daily of Revlimid. I then take six other pills throughout the remainder of the day to control the side effects of that 10 mg pill.

Knowing one’s limitations, whether those limitations are caused by multiple myeloma or the side effects of the various treatments, and adjusting to those limitations, is a lesson that took me four years to learn.  I retired nearly four months ago, acknowledging the fact that the side effects of treatment were impairing my ability to work at the level I expected of myself. I haven’t regretted that decision and now wish I wouldn’t have put it off for as long as I did.

And the fourth lesson I learned is to live in the moment. “If you aren’t in the moment, you are either looking forward to uncertainty or back to pain and regret.” Smarter words of advice have never been spoken about living with multiple myeloma, even though they came from an unlikely source, comedian Jim Carrey.

Hopefully, I will have more events and lessons to share in years to come.