Perhaps the biggest question someone who has been diagnosed with multiple myeloma faces is: Quality of life, or longevity?

As I reflect back on the three years since my diagnosis, I realize this question has factored into almost every decision I have made in dealing with the disease.

When my doctor recommended the “watch and wait” approach shortly after my diagnosis, the quality of life factor outweighed any benefits that might have been obtained by starting induction therapy in the early stages of the disease, even though my myeloma numbers justified treatment.

When the myeloma numbers reached a level that couldn’t be ignored, the decision to begin induction ther­a­py was not a difficult one to make. However, after going through seven cycles of Revlimid ^[1] (lena­lido­mide) / dexa­meth­a­sone ^[2] (Decadron) and the related side effects, I am thankful my doctor delayed that experi­ence for me by 16 months with a “watch and wait” approach.

The decision to have an autologous stem cell transplant, followed by maintenance therapy, is one that creates lively discussion for those with pro- and anti-transplant opinions, as demonstrated by the columns, comments, and forum postings here at The Beacon. Some may argue that the verdict is still out on the long-term benefit of that procedure. However, for me, four check-ups since the transplant showing no evidence of the disease in my blood would suggest otherwise.

I had pretty much resolved the question of quality of life versus longevity for myself and have been at peace with the course I have plotted.

However, the question returned two weeks ago when we buried my mom. She died suddenly, though not unexpectedly. Cancer that originally was located in just her cheek had spread in a matter of weeks to both of her lungs, her liver, and her spine. After viewing her last scans, her doctor gave her weeks to a few months to live. Fortunately, she suffered little, due to the fact that she issued a ‘do not resuscitate’ order after nearly dying six weeks ago.

I was not close to my mom. Growing up in a missionary family in the late 1960s and early 1970s in Papua New Guinea demanded that I attended boarding school in Australia from 8th through 12th grade. We did grow closer over the last six months since she was diagnosed with cancer. Sadly, the thing that brought us closer was what eventually ended her life and in all likelihood will end mine – a rare cancer.

We spent a good deal of quality time together after she was diagnosed with cancer, discussing her options. Our discussions focused on questions familiar to multiple myeloma patients. Should she pursue a treatment regimen with all of the associated quality of life issues, with the possibility of prolonging life? Or should she forego treatment for as long as possible, avoiding the serious side effects of treatment, but running the risk of a shorter lifespan?

As I sat at her funeral getting ready to make my remarks, the thoughts that had been with me all week long still lingered: Did my mom make the right decision, based on my advice, to forego treatment? And after discussing the details of my mom’s last moments with my sister, what does death by multiple myeloma look like?

I have peace of mind that my mom made the right decision at age 83 to forego treatment. The simple logistics of traveling for treatment would have been physically draining in itself, let alone dealing with the side effects.

Most importantly, she was at peace with the decision. Her strong religious faith led her to believe that she would be healed without treat­ment. And while that did not happen, that faith led her to look forward with enthusiasm to our plans for her of going into an assisted living facility. She saw this as her next mission field.

I have often wondered if the survivor instinct takes over when the disease gets to the point where the odds of successful treatment are diminished to little more than hope. I can only hope that, when I reach a similar situation in my life – which the odds indicate will probably happen – I will be as courageous and optimistic as my mom was in dealing with that tough choice between quality of life or longevity.

Despite living with an incurable disease and the data indicating that I have but five to six year to live, I have never given much thought to death.

But, as I indicated earlier, as I sat at my mom’s funeral awaiting my turn to speak, for the first time since being diagnosed with this disease, I wondered what death by multiple myeloma would be like. Infections (with pneumonia being the most common), kidney failure, and blood clots in the lungs are the most common causes of death associated with multiple myeloma.

I continually kept wondering: How would multiple myeloma end my life?

I know these were morbid, even self-centered thoughts on my part, but they are a part of the experience of living with an incurable disease.

Fortunately, those thoughts have not lingered. Multiple myeloma is a “time robber” in so many ways. Allowing it to rob me of those emotions and thoughts normally associated with the loss of a loved one demonstrates that. I refuse to allow it to happen again.

Have you ever had such thoughts, and how did you deal with them?