Myeloma, Party of Two: Dichotomy
It’s one of the greatest opening lines ever penned. From his novel A Tale of Two Cities, Charles Dickens tells us, “It was the best of times, it was the worst of times …” Set in London and Paris during the French Revolution, Dickens uses the differences between the two cities to paint contrasting portraits of life in extraordinary times.
Through his characters’ experiences of fortune and misfortune, good and evil, life and death, destruction and resurrection, the reader comes to understand the world through dichotomy, or by seemingly opposite things. Through this contrast, the reader senses both the fragility of life as well as the immense gifts it offers.
I see dichotomy in the world today as well. Even as I write this column, I’ve experienced the moving dichotomy of life this week.
My husband Daniel and I celebrated our 12th wedding anniversary. We enjoyed a music-filled, candlelit dinner date. Later that weekend we spent Father’s Day with family, and we shared encouraging news from the ASCO 2016 multiple myeloma abstracts recently posted on the Beacon. That night Cleveland fans welcomed home the city's first national sports championship in more than 50 years. It was the best of times.
It was also the worst of times. That week a shooter pledging alliance to extremists killed 49 people and wounded 53 others in an Orlando night club. Many young people died in the prime of their lives. Many multiple myeloma patients died as well. According to U.S. National Cancer Institute statistics, an estimated 12,650 people will die from multiple myeloma or myeloma-related complications in 2016. This means 34 people on average died from myeloma that day as well, leaving behind families and friends to grieve their loss. And if that weren’t bad enough, I personally know good friends struggling under the strain of lost jobs and failing marriages.
How surreal that so many life-affirming and life-destructing events could occur within the span of a few days? When you consider the way life can change so suddenly and without warning, why aren’t we all walking around with a deeper sense of it all? A deeper sense of something –anything – be it gravitas, thankfulness, anger, or the like. Yet many people in our midst seem to be oblivious to the best of times and the worst of times around them.
I suppose that the emphasis you place on these stories, and which of these events impacts you the most, is ultimately what shapes your world view.
I would imagine that multiple myeloma patients and their families wrestle with life’s dichotomies more than most. And it is something about our lives that consistently puzzles others.
The question I am asked the most often is, how do you live with the knowledge that Daniel may be one doctor's appointment away from chemotherapy or a stem cell transplant? Or, from the bolder, how do you handle knowing that he won’t likely stay in remission? What is it like to live on borrowed time? How do you cope with living with such uncertainty?
In response, I give them well-rehearsed answers that I can now say without fear of my voice breaking, but on the inside I wonder if they’re blind to the dichotomy in their own lives.
Perhaps they choose to turn away from the perils of air travel or the dangers of their morning commute. (Believe me, living in the 4th most populated U.S. city, this is no small feat!) Maybe these same folks feel safe in movie theaters or consider themselves far removed from their family history of heart problems or diabetes.
Or it could be that the worst of times is too unbearable for them to consider.
When Daniel was diagnosed in 2012 with smoldering myeloma, we began to live with an awareness that these were the best of times and the worst of times were yet to be. We could not escape what was staring us in the face. We could not be oblivious.
Therefore, we examined ourselves and our lives. It became unfathomable for us not to have appreciation for today and hope for tomorrow. We couldn’t escape from the knowledge that Daniel has a cancer multiplying inside him. We couldn’t ignore the impact that multiple myeloma has on patients and families, because we see it every two to three months when we visit his specialist at the cancer center. Of course we’ve been changed. How could we not?
What we can do is focus on the goodness that life has to offer. We are surrounded by beauty, and it seems a crime against nature to not enjoy it. Literature, music; a cool, summer day; sharing a laugh over dinner – are these not the moments in life to be treasured? Are these not the best of times?
Reveling in the good does not mean I hide from the bad. It doesn’t mean that I don’t feel, acknowledge, or even dread ‘the worse’ yet to come. But I will not let it darken the memories of what was and is good. If anything, the dark times only make the light ones seem brighter. Nor does it take away from my thankfulness that I am here, and we do not walk this road alone.
In truth, we do not have the blessing of ignorance. None of us do. The road before us contains many peaks and valleys, and therein lies the dichotomy of life. But it also offers a gift in return: awareness of its value.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Lovely piece, Tabitha. I have a best of time observation for you: your husband was diagnosed early! This is great. Most of us myelomiacs were diagnosed with broken bones or failed kidneys, meaning we'd had full blown myeloma for many years, undiagnosed.
Bless you, and I pray he will not progress. But if he does, each passing year is bringing us more medicine and more hope!
Julia
I really enjoyed this column, Tabitha. There is so much sad, distracting news in the world today, but we still have to try to focus on what is important in our own lives. Since for us that is myeloma, we try to be mindful and do what we can to help others, while still recognizing our own limitations.
Tabitha, what a wonderful column. Thank you for pointing out an important lesson for all of us to practice each and every day. I also was first diagnosed with MGUS and progressed to smoldering about 18 months later and then to active myeloma about 10 months after that. I was very fortunate to have a primary care doctor who was totally on the ball and caught the protein abnormality during an annual physical. Catching it early and monitoring it frequently is going to be beneficial to your husband Daniel. I pray he remains in smoldering status. Again, thanks for a well written column.
Thank you, Julia, Nancy, and Cheryl for your comments and well-wishes. If there is one thing that we as a myeloma community understand, it's definitely the need to focus! I'm so thankful to have the resources and relationships we need to help us focus on the things that matter the most for us. Best of health to you all!
Amazing article as always. Wonderful reminder. Life is precious. Each and every day we are blessed to be able to share that day/week with those we love and enjoy life's precious moments. After all, that is living.
I have enjoyed all of your column's Tabitha, and this one especially. I too was diagnosed with MGUS after visiting my dermatologist regarding a persistent rash. He sent me for blood work, thinking of an autoimmune disease, and discovered the spike in my M protein. He sent me to see a hematologist, who diagnosed me with MGUS. This was 2009, and I had no symptoms at this time. My hematologist said that I could possibly have had this for years. So just had to come yearly for blood work. 2010 I was fine, then 2011 smoldering, and then in November 2011 my M protein spiked, so in November I started treatment. I had my transplant May 2012. I am in complete remission, and have been on no treatment for four years, so I am feeling very thankful to be diagnosed early. I do hope that your husband will do well. I wish him the best of health.
Thanks, Tabitha, for such an inspiring article. I have been reminded of Dicken's opening monologue many times while reading other inspiring words here since being diagnosed in October 2015. I just returned from my 100-day checkup since undergoing my transplant. Attitude and faith are everything in dealing with this disease. While so far I have achieved a good partial remission, I consider myself very fortunate to be in the early stages at a time when there are so many treatment options and more on the horizon, especially immunotherapy. I wish you and your husband continued success with your journey.