Hope and Intellect

How does a multiple myeloma patient balance their hope for a long and healthy survival with the science and knowledge that the disease is incurable and often deadly?

My multiple myeloma diagnosis chal­lenges a funda­mental way that I’ve lived my life. I’ve always been one to use my knowledge and logic to take control and manage events.

Obviously, as patients, we simply don’t control as much of our future as we once did. The disease is the primary in­flu­encer, and while we have choices about treat­ment options, we don’t really control those either. I’ve struggled with the feeling that I’ve lost control, but that is not the challenge I’m speak­ing of here. I’m talking about a battle between hope and intellect.

I’ve found no stronger resource in life than gathering the facts, logically processing them, and applying the con­clu­sions I reach to im­plement the best solution. I’ve never been one to leave it to fate or simply hope that things will work out for the best.

My multiple myeloma diagnosis challenges this paradigm.

After I was diagnosed, I knew my conven­tional problem-solving methods might need altera­tion because I was now facing a threat to my life. Initially, I felt it best to go against my normal instinct. Instead of gather­ing all the information I could about multiple myeloma, I avoided the informa­tion. The fear and anxiety I felt at that time prevented me from processing the often grim survival statistics and the stories of pain and disability this disease can cause.

I know that is not the only information available, but sorting through the negative to find the positive was too difficult given my mental state at the time.

The information I received from trusted resources, primarily my doctors, still led me to conclude that my time was short and the future ahead was not bright.

I knew this was not a healthy mental state that would serve me or those close to me well, but the alternative ran counter to a lifetime of experience.

I’ve never been a “rose-colored” glasses type of person, expecting challenges in life to just work out for the best. How many cancer patients have heard well-meaning friends and family offer the encouraging words “you’ll beat this” without any basis in fact? While the speaker often says this because she doesn’t know what else to say, it is sometimes also a declaration of hope. Hope that, despite the odds, everything will turn out well.

As time passed, I was able to return to my problem-solving comfort zone. I found resources I trusted, like The Myeloma Beacon, and I learned to sift through the information without being overwhelmed by the negative prognosis of a myeloma diagnosis.

Today, I’m much more informed about multiple myeloma, and I think I have a good understanding of the current state of the disease and its treatments. I’ve also discovered that my earlier willingness to discount hope as a necessary element of living with the disease was an error.

My mistake was thinking that hope and intellect are opposites that cannot coexist. Hope and intellect lie on a continuum. I realize now that to move forward carrying the burdens of multiple myeloma I need a good balance of both.

If I rely solely on my intellect, as I have in the past, the science and statistics make living with myeloma tough. While there have been great advancements in the last several years, and there appear to be many on the horizon, pragmatically multiple myeloma patients have substantially shortened life expectancies.

Hope, on the other hand, tells me to have faith in my doctors and science. The key is knowing that multiple myeloma patients have a realistic hope of beating the statistics. The newest drugs and treatments are demonstrating dramatic results. Today, a patient can reasonably consider their multiple myeloma to be a “chronic” disease rather than a “terminal” disease.

The first treatment I received didn’t work well. My doctor immediately altered my medications, and the disease responded well. I underwent a stem cell transplant. Again, my medical team applied all of their experience and knowledge to drive the cancer into nearly complete remission with minimal side effects. Finally, an aggressive consolidation and maintenance treatment was prescribed, and I’m now enjoying complete remission and my life has substantially returned to what it was pre-diagnosis.

I credit my current condition to good doctors, good science, hard work, and some element of good fortune. I’m also aware of the many positive and negative roads ahead that my journey may take.

My intellect tells me whichever road I take, while not completely in my control, is not set in stone, nor is it simply left up to chance.

My knowledge and experience direct me to be hopeful that I can live with multiple myeloma for a long time and still be the husband, father, grandfather, friend, and colleague that I want to be.

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 Photo Credit: (c)2017 Mark Pouley

I captured this image from the front porch of our new home. After 25 years of beginning each day watching the sun rise over the mountains to our east, I now start each evening witnessing the sun go down over the mountains and water to our west. Both views are beautiful, and both are a necessary part of every day.

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