A Northwest Lens On Myeloma: “You Look Great”
“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 speaker's. 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 altogether 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 it.
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, which ebb and flow constantly as I contemplate my future.
When friends and colleagues 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 colleagues who only see me after large gaps of treatment say “You look great,” they’re expressing relief at 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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Mark's Photo For The Month
When the nearly 100-year-old Yoshino cherry trees on the campus of the University of Washington break out in blossoms, it's 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.
Photo copyright © 2018 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 .
Wow, this really struck a chord with me. I get this all the time. It's good to put it all in perspective. But the difference between "remission," and "cure" is big, as all of us with multiple myeloma know. And, even though great strides have been made, most, if not all of us will face relapse, at some point.
I used to correct people when they would say, "you look great," and compliment me on my remission, and remind them that I am not "cured." But you know, most people don't want to hear that. So, now I say "thank you." Not everyone wants to know the details. And you know, they are entitled to that. And I am happy that I look "normal," and can do mostly everything that I want to do.
What a great article, Mark! It really resonated with me! So many people affiliate how one looks with how one feels. For those of us who are in remission, there are the ‘internal’ remnants of multiple myeloma – damaged bones, chronic pain, fatigue, and the never ending anticipation of the next appointment to see if numbers have changed for the worst. Thank you for articulating what so many of us are experiencing each day even when we are “looking great."
Thank you! I really appreciate this article, I also do not want to be identified by the cancer and am thankful that I do look good! But it is hard not to worry about what will come next. It’s good to see this in print and to realize I’m not the only one that feels this way.
My husband was diagnosed with multiple myeloma while Revlimid was still in trial, so he had to take thalidomide before his two autologous stem sell transplants. How he ever managed to work with the drowsiness and fatigue I will never understand. He came home everyday, ate, and went right to sleep. That time period led to eight years in remission!
The hard thing is his compromised immune system. He has spent two different times in the hospital the last three years without being ill until a few minutes before the ambulance had to be called. Last year a urinary tract infection he was not aware he had (not even fever) put him in intensive care with sepsis, pneumonia, and asthma. God blessed us because his internal medicine doctor was in the hospital at night, which is unusual. He was able to call in all the needed specialists and get his oncologist on the phone. We are also blessed they work together so well. Many do not have this with their doctors. He was immediately taken off the Revlimid he had been on, and had the good lab work you speak of for eight months. But, we never know what the next month’s tests will show!
The pain he suffers from the “fixed” spinal fractures give him so much pain, making it hard to walk more than about 10 minutes at a time. The kyphoplasty he had when he was diagnosed almost instantly stopped the pain. He could not get approval for another kyphoplasty and radiologists did a vertebroplasty, which did not help he at all. I’m am ready to throw a temper tantrum to make someone help him relieve the pain. His life would be so much better if he was able to get this relief.
"You look great." That remark has stymied me, as well. Thank you for looking at it from different eyes and sharing what you've seen; it helps me to see that comment AND shape my response, better.
Dear Mark,
Many thanks for your column. I can really identify with many of your experiences and your thoughts. Recently I had a related experience, when meeting a former colleague who I had not seen for a long time. This lady knew nothing of my myeloma diagnosis. When she said,'Hi Marje, you are looking great', I was delighted!
I am very pleased that you actually do feel great despite all that has happened to you.
Very best wishes.
Thanks, Mark, for this column. I can also relate to that. I really like it when people say 'You look great,' even though I think that they do know quite a bit about my medical history and thus are trying to give me encouragement. I try to remember to return the compliment and tell them they look good too.
I love the photo of the cherry trees in blossom. Many years ago Dilip, one of my sisters, and I went to the 'Cherry Blossom Festival' in Vancouver and we took a bus tour of the older areas of the city where the cherry trees gifted from Japan had been planted. I think that possibly many cities on the Pacific Northwest coast were gifted trees in the 1920's.
We are singing a Japanese song in our spring choir concert called 'Hisakata No' (In the Peaceful Light). The translation is:
'In the peaceful light, of the ever-shining sun
In the early days of spring,
Why do the cherry's new blown blossoms
Scatter like restless thoughts?'
Kudos on this great piece! I get that often, "You look great!" While I'm so thankful I do, others don't know the seriousness of this disease and how sneaky it is. And, as always, your picture is wow.
Great column, Mark. Once during my treatment, I read a doctor's report that described me as looking "chronically ill." After that downer, I became much more appreciative of those who tell me I "look great."
Wow. Great article. I get this all the time and never know what to say. Now I do.
Great column, Mark. When my husband, Rick, would receive the comment, “You look great,” his come back line was, “I think cancer has made be better looking; before I was diagnosed with multiple myeloma, no one ever said I looked great”.
I, too, look great. The 20 pound weight gain (thanks dex) has given me a "healthy," robust looking appearance, especially given that I was thin pre-myeloma and skeletal during and months after radiation and induction. So, my appearance is definitely a false indication of my physical and mental health through and through. But like many of us, I am grateful that I am able to function, for the most part, in daily activities, and have made great strides, undergone tremendous hardship, in achieving a modest threshold of physical capability.
Sometimes I’m a bit overwhelmed by your comments and the sharing of your stories. It shouldn’t be a surprise that myeloma patients share so many common experiences we don't hear about from doctors or read about in the literature.
For many of us who respond well to treatment, at least early initial treatments, we bounce back. We look and we act normal and healthy. "You look great" from our co-workers and friends is natural. We patients need to learn to process that in our own mental context. There’s a consensus here to be polite. Accept the compliment, and reward yourself for all the hard work that got you there. There is not the time to contemplate tomorrow. Enjoy this tiny win today and be happy.
Hello, Mark. Thank you for writing this article. I agree that accepting the compliment of "You look great" can be a very helpful way in which to appreciate the day and focus on the present and not on a less certain future. Thank you, too, for the beautiful photograph of the cherry trees.
Another great column, Mark.
My feeling is that “You look great!” means “You look great, for someone with cancer”, which can also mean “You look lousy, but not as bad as I expected.”
In any case, people really just don’t know how to talk to someone with cancer. They mean well, but just don’t know what to say. It’s a difficult problem. Some of us would prefer that they ignore the fact that we have cancer entirely, and talk to us as if we were perfectly healthy. And yet others of us might appreciate our friends showing concern for us as we cope with the very difficult challenge of living with cancer.
In the case of “You look great,” however, I vote to bag that expression entirely. You can always say “So do you!”
Once, the famous male playwright Noel Coward encountered novelist Edna Ferber (back then, eons ago, a notoriously gay woman who dressed in masculine attire) at a party.
“Why, you look almost like a man!” Coward rudely exclaimed.
“So do you!”, was Ferber’s reply.
Well written and your words here speak loudly! I am experiencing some anxiety with answering of THE questions:
"How are you?" I'm fine.
"You do look great." Thanks.
"I'd never know that was a wig". Really? I sure know it's a wig.
People don't know what to say. Heck, I don't know what to say.
Thanks, Mark, for sharing your wisdom.