A Northwest Lens On Myeloma: Hope And Intellect
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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Mark's Photo For The Month
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.
Photo copyright © 2017 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I, too, have heard the "you'll beat this" statement that I know comes from friends who meant well, but sometimes I was more annoyed than encouraged by it. How in the world do they know for sure I'll beat this?! Good grief, I guess it comes from just not knowing what to say. I'd like to tell them not to say anything at all than give someone false hope. I still have hope, but never the type that I'll be cured of this, unless a cure is found, but until that day, or if it doesn't happen in my lifetime, I live with hope that I can live in some sort of remission for many years.
On a more positive note, I love your photograph as usual. You always capture God's creation in such a beautiful way. Thanks for sharing your talent.
Thank you for this wonderful column. Often share the same thoughts and hopes ! My best to you Mark, Tonya
Thanks, Mark. Hope and intellect are wonderful ways of framing the multiple myeloma journey. It is good to remember that we are not completely subject to the roll of the dice.
Thank you for this article and the wonderful heart-lifting photo.
I have an outlook very much like yours. At times. I want to do more research on multiple myeloma in order to stay well informed. But sometimes I just need to live in hope, trusting in my doctor, walking in nature, letting music or poetry soothe my soul. I do get annoyed at some of the dumb things well-meaning people say! Such as "You are so strong and have such a positive attitude. I know you'll beat this!" What an insult to all the strong, positive friends who have died of multiple myeloma or some other disease. I even hear people with multiple myeloma say that! Of course, it's good to be positive. It's also normal and maybe necessary for us to acknowledge sadness and even fear at times.
I think most people go through a kind of existential crisis upon diagnosis. Eventually we come out of it if we go into remission or the multiple myeloma is stable. Some of us return to that state occasionally. Sorry to blather on.
Thanks again,
Doris
Mark,
The photo for this column is so beautiful and really fits your theme of hope and intellect, I think. Science can tell us why clouds form, for example, yet there is the beauty of the sunset – unmeasurable.
Your article has made me think about this combination of facts/data and that indescribable, but, for me, essential, "hope" in living with multiple myeloma day to day. Thank you for sharing your thoughts.
Thank you for another spectacular photo and column Mark. I was diagnosed at the same time as you were. I have really gotten a lot of support from your writing.
Dear Mark - We are all optimistic about things that are going change the life we live. We hope the best things will be in our way of life. Your column is touching the heart of many myeloma patients. Science and real life are different. We all go through different phases of treatment and it reflects the way we have to live with the disease. Hope and optimism is the only answer for better living. The image you have included with your column reminds us everyday we have better way of life to live.
Thank you all for the kind remarks. I always hope my writing and photos strike a chord with other patients.
Kailash - We may express things differently, but I agree that optimism is ultimately the best approach to moving forward.
Sylvia - I hadn't thought about science and clouds when I selected this month's photo, but that is a great analogy.
Doris - I'm with you when someone mentions how "brave" I am. I don't feel that way. Really, what choice do we have?
Mark, thanks for the column and the lovely photo of a beautiful sunset! I know that we are not 'statistics' and have to live in hope that we will do well with our health challenges. The intellect can steer us in directions of doing the best we can to live in a healthy way! Sometimes it is just good to take in the myeloma news and research in small 'bytes' so that we don't get overwhelmed with it all, too.
Mark: You make very good point about how intellect and hope are on a contiuum and not mutually exclusive. I think for all cancer patients, particularly multiple myeloma patients, hope propels you forward while your intellect helps you navigate treatment options. I do believe patients have more control than most realize. As you mentioned, there are many treatment options for myeloma patients. When one line of therapy does not work well or has adverse side effects, you can ask about other options. We have requested different treatement regimens several times during the past three and half years in an effort to balance quality of life and effective treatment of the myeloma. This is where intellect and knowledge play important roles. Planning next year’s vacation is where hope factors in.
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