“You look great,” isn’t normally a compliment or greeting that causes the receiver pause. For me, however, it creates mixed feelings and those mixed feelings can change depending on the person and the situation when the greeting is offered.
I realize how I react to what is said to me is my issue, not the speakers’. Often, they really mean to say that I look “normal” and unharmed by my cancer and treatments. They are witnessing no outwardly changes in my appearance or behavior, which they take to mean the threat of the disease is passed, even if the word “cure” never comes up. They are expressing happiness for me.
I too am very happy that my current treatments are working and that I’m able to work and engage in most of my daily activities. I’m happy that people who see me regularly think that I “look great,” but sometimes I wish they knew the reality of multiple myeloma. I wish they understood the subconscious, daily struggles we patients endure knowing this is an incurable cancer.
What these people likely don’t know is that multiple myeloma is always present, even if at a given moment lab results suggest the disease is dormant. As patients, we are always aware of the threat of relapse and we are likely experiencing side effects of treatment, compromised immunity, and other life-long impacts. Some patients suffer even more significant issues like required dialysis, disability from bone fractures, or severe neuropathy.
My friends are being polite and, thankfully in my case, honest. They know I have a serious illness. They know I was away being treated for a significant time, and now I’m back and I look as well as I did before. There aren’t any obvious signs that I’m dealing with cancer. I don’t expect them to withhold their compliment. I also believe it is inappropriate for me to regularly update them on the actual progress of my treatments or the subtle challenges I’m dealing with daily. (Not to mention I would become the person everyone would avoid since those conversations become tedious if that’s what happens every time you see me.)
Still, it feels strange to have people who are close to me believe the threat has passed and that I must keep much of the truth to myself and politely accept the compliment.
As I was writing this column and thinking about this issue, I had the opportunity to be among several family and work colleagues who I don’t see on a regular basis. In fact, it had been many months since I had seen any of them. Many of these people told me on multiple occasions, “You look great,” and I realized I had a different reaction this time.
Instead of feeling like they might be dismissing the disease as something that had passed, I felt they were acknowledging how well I’ve recovered from the disease. Perhaps they had an expectation that I would have lost weight, or my hair, or I’d look sickly, or there would be some other objective signs of illness. In this context, I felt my friends may have been surprised, or at least relieved, that I look well in spite of the multiple myeloma.
I honestly don’t know what the underlying meaning of these speakers’ statements was, but my own reaction was different than when I hear the same words from people I see every day.
The people I see infrequently have some knowledge of the seriousness of the disease. I’ve probably shared with them some of my treatment plans, especially when I left work all together for nearly a whole summer to undergo an autologous stem cell transplant. The risks and difficulty of that type of procedure are known, and sometimes even overblown by people not very familiar with the treatment.
When there are large gaps of time as I am moving through significant phases of treatment and later see these remote family and colleagues, there is time for them to imagine I am “stuck” at that serious phase of treatment and not moving forward.
In reality, with each challenge, I successfully move through rough points only to emerge at the end with the multiple myeloma posing a lesser immediate threat and my body and life substantially back to where they were pre-diagnosis. Honestly, the biggest lingering effect of my multiple myeloma today is the mental challenges that ebb and flow constantly as I contemplate my future.
When friends and colleges see me only after the big challenges have gone by, when I’m stronger and able to function nearly as well as I did pre-diagnosis, their compliments act as huge reminders to me of what I’ve accomplished.
It’s easy, maybe natural, for patients to feel shocked at diagnosis to hear the very general and dire prognosis of multiple myeloma; to be told the odds of success we might encounter with the many treatments available to us; to learn about some of the serious side effects or non-correctable damage to our body we might suffer over time. But as soon as a first treatment works, and the cancer numbers start to recede, we are able to push some of the negative thoughts to the background. We can begin to enjoy feeling healthier, to believe we can move forward. We can begin to hope the future is a little more indefinite than it seemed during those first meetings with our doctors.
When friends and colleges who only see me after large gaps of treatment say “you look great,” they’re expressing relief of seeing me healthy. However, it should also remind me that I have worked hard, my doctors have made their best recommendations, and I weathered some tough times. While there will be more challenges ahead, I’ve successfully maneuvered those in the past and I will again.
When the people I see every day say, “you look great,” they’re actually relieving me from one of my greatest fears in sharing my diagnosis. I didn’t want to become “cancer guy” with people making special accommodations or worse, whispering behind my back. The fact that we don’t really talk about my cancer and ongoing treatments and instead they say, “you look great” and move to the most pressing project of the day is fantastic. I’m just Mark, “normal guy,” and we have a deadline to meet.
By the way, I do feel great.
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Photo Credit: (c) 2018 Mark Pouley
The nearly 100 year old Yoshino Cherry blossoms on the campus of the University of Washington are a sure sign that spring has arrived in the Pacific Northwest. I recently had the opportunity to walk the quad with my camera and focus entirely on the beauty of the trees and nature. It is so important to pause and appreciate what I’ve accomplished and the life I’ve been given following all the hard work and treatments.
Lens on Myeloma 