Mohr’s Myeloma Musings: Just Livin' The Dream
It is interesting to note the clichés that have become common in our lexicon. Some of those clichés are useful for describing life with multiple myeloma. However, there are clichés that, because I have multiple myeloma, I am not so fond of.
My favorite cliché, which appeared about five years ago, is "It is what it is." A colleague of mine, who heard me use the saying frequently, gave me a plaque with the phrase engraved on it. I kept the plaque on my desk. It helped remind me that in my job as school district superintendent, there were things that, despite my best effort and intentions, just couldn't be explained, fixed, or controlled.
"It is what it is" also accurately describes my feelings on living with multiple myeloma. I can't explain (and I have no desire to explain) what causes the disease and why I was one of the very few who become afflicted with it. The phrase certainly reflects the fact that the disease is incurable, despite all the money, science, and technology devoted to finding a cure. It also accurately describes how I had no gastrointestinal issues during my induction therapy, yet such issues now control my daily life while I am on maintenance therapy with the same drug I had during induction, but at a greatly reduced dose.
Living by this cliché doesn't mean that I have a fatalistic outlook on life – that I have yielded control to things beyond my control. Rather, it's a simple acceptance of things unexplainable and uncontrollable, and a desire to move beyond the uncontrollable and unexplainable to things that are important, can be explained, and can be controlled. After all, our days are numbered. I just don't see the sense in wasting what time we have left on the unexplainable and uncontrollable.
While I can relate to "It is what it is," there is one cliché that stirs my blood in a different way. It's the phrase, "Just livin' the dream." I have told my 20-year-old son that if he ever again responds "Just livin' the dream" when I ask him how he is doing, I will write him out of my will.
Why does this cliché evoke such a visceral response from me? Because most people who respond to the question of how they are doing with "Just livin' the dream" don't mean it. I sense that it is a sarcastic, cynical response – an exclamation that the person's life is anything but a dream, that it's boring, drab, and inconsequential. I just don’t have much sympathy or patience anymore for people who have such an attitude.
This sense I had about the meaning of most of these responses was confirmed one morning at work.
Every time I asked Peter (not his real name) how he was doing, he responded "Just livin' the dream." I became so annoyed at the same response every day as we passed each other that I vowed one day that I would ask him what was so dreamlike about his life.
The next day as Peter approached me on his way to his classroom, I asked him how he was doing. As expected, he flippantly replied, "You know, just livin' the dream."
Before he could quickly move away, I gently grabbed him by the arm and asked: "So Peter, what dream are you living? What is so dreamlike about your life?"
He gave me a startled look, stuttered "Uh, uh, you know." I said, "No, I don't know, tell me, if you're living the dream, I want to be able to tap into that."
He gave me another startled look and with a "It's just a saying" reply, quickly moved on down the hall.
As myeloma patients, life is too short for us to be sarcastic and cynical in our comments about our current condition. What we say, and more importantly, what we mean with the words we utter, influences how others view us. It also shapes our own inner conscious. I don't want to feed the inner thinking that life is a nightmare – as excusable as that may be as a multiple myeloma sufferer.
As Maureen Nuckols so accurately showed in her latest column here at The Beacon, one can still live their dreams despite multiple myeloma. Doing so may be more challenging, but it is still very much "livin' the dream." We may have less time to chase those dreams, we may have to alter some of the dreams, but unless the disease is at its most serious, final stage, there is little we can't do to lead a dream life.
I never told anyone before being diagnosed that I was "Livin the dream," so I certainly won't do so now. But like so many other myeloma patients, I'm going to live the dream until this disease makes it physically impossible to do so.
Steve Mohr 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 .
How funny. I was diagnosed with multiple myeloma in 2012. 6 months of Velcade, transplant, Revlimid, and now Kyprolis. Every time someone says something, or has that look, I smile and say, "It is what it is".
A really nice article, Steve. Got me thinking ... If I was "living the dream," I sure would NOT have multiple myeloma ... lol. That was my first thought. But I am living my life the way it makes me happy. I do the best I can when I feel good, and when I don't I rest. But I am trying very hard to stay cheery and positive with all those I know and love. It's not easy some days, but I won't let it stop me. We can still have a wonderful life between our crazy treatments and days down. I just get back up and move on trying to do all the things I used to think of, or things I would like to see or do. I am not very difficult, just want to love the life I have. Even if it's not the life I always dreamed of, it's really pretty good anyways.
Thank you for your article. I appreciated reading it. Best of luck
I can relate to your experience, Steve. Thank you for sharing your story.
Thanks for sharing your support for us with multiple myeloma. Ive been in smoldering stage since diagnosed 4 to 5 months ago. Had blood work for determining what kind of arthritis I had. Doctors initially said I should start treatment. Got two more opinions, decided to have just blood work done every 3 months. So far so good. Had full MRI and blood work, all ok. Blood still 10 and doing ok except for aching pain controlled by naproxen.
Great article, Steve. You hit the nail right on the head. My wife and I are leaving for a two week road trip after my treatment today. Would like to go for three weeks but we have to be back for another treatment. You know how that goes: It is what it is.
Well said, Steve! My sister is a writer and one of the things I have learned from her is that people use clichés when they really do not have anything of value to say and when they are incapable of truly expressing themselves. As a consequence, I really try to avoid using them. Years ago a neighbor of ours had a license plate that stated, "whatever." We hated that expression and scolded our boys whenever they used it. Of course, today we look back and laugh at those times. As we live with my husband's multiple myeloma, we try to make each day count, and trite expressions do not seem to have a place in this life that we are living. More than ever, we view life as immeasurably precious, and we mourn lives carelessly discarded through illicit drug use, avoidable accidents, and gun violence. We do not have time for negative personalities, trivial complaints, and people who cannot understand our journey with myeloma.
Thanks for a great column and pointing out something that we rarely discuss.
Rosemary - Although not very creative, clichés can be very useful in describing how we feel or quickly bring to end a conversation we really don't want to have. "It is what it is" is one of those.
Michelle - I think your phrase "love the life I have" is a great description of where we need to be. Everyone has a burden to bear, ours just happens to be an incurable disease, but that doesn't preclude us from leading a full life.
Jay - I appreciate your kind comments on the column.
Whudy - I hope your smoldering status continues. I went through a "watch and wait" phase of treatment, which, though I questioned it at times, I look back at longingly because in my case, as is with many, the side effects of treatment have been more challenging to live with than the symptoms of the disease.
Richard - Your situation so accurately illustrates the life we live, which is one controlled by treatments and tests, but one that, for the most part, enables us to lead a near normal life.
PattyB - You did a much better job than I did in expressing some points that I missed in my column. Thank you for your contribution!
Steve, I can't help wondering if what you asked Peter struck a chord with him. Has he responded to your question with a better answer?
IMHO, you shouldn't ask Peter how he is doing if you are going to be judgmental of his response to what is normally a casual social query.
Pam - He did. It became a friendly discussion item for us over several lunches.
Passer - I appreciate your sharing your perception of my column. It is unfortunate that you interpreted me as being judgmental, as that certainly wasn't my intent. My purpose of sharing that experience is to illustrate that clichés, no matter how often they are used, aren't always an accurate reflection of what one actually believes.
How funny. So many (most?) of our expressions, if overused, have the capacity to annoy saints. Though short of sainthood, I'm fairly tolerant of expressions. That said, I have a friend who cannot resist saying, almost like a nervous tic, 'It is what it is.' Well, um, yeah, it's surely that - and annoys me for no substantive reason.
I see it as a space-filler, though if she used it only occasionally, selectively, perhaps I could imbue it with some meaning. Maybe for your co-worker it's nothing more than his own nervous tic, a similar throwaway line, and not meant sarcastically at all
"It is what it is" is true for so many things in life, including this ailment. Thanks for writing. Keep well. Keep walking.
When we think of multiple myeloma as an incurable disease, many people immediately think we are dying soon. Well, my attitude is that there are many diseases that are "incurable". Diabetes is incurable, but must be managed. Myeloma must be managed. If left to have its way with a patient that doesn't take appropriate steps and monitoring, diabetes can and does kill people. So, like you said in your article, we deal the best we can with our situation, follow the advice of our expert clinicians, and live our lives to their fullest and best.
Obviously no one wants multiple myeloma, but I'm a believer that often with hardships come blessings. My wife, Janice was diagnosed on April 14, 2014. Very sick, stage 3, with 95% bone marrow involvement. Treatment with Revlimid, Velcade, and dexamethasone (RVD), a stem cell transplant, and now maintenance. Significant spinal damage. Those are difficult waters to navigate. So much to learn about a disease we do not want to know. But you are right: "it is what it is," and it is important to move on so we can continue to make a positive contribution.
For me, this disease has helped me to understand and accept the nature of living – that regardless of our condition, the clock is running for all of us, and the importance of approaching life with a good attitude. Since diagnosis, there have been abundant opportunities for us to use our situation to help others.
Each day is precious, so while no ones wants multiple myeloma, it does offer us a unique opportunity, to fight the good fight.
Daryl, your comment moves me.
"this disease has helped me to understand and accept the nature of living – that regardless of our condition, the clock is running for all of us" – all of us regardless of us having myeloma or not.
"Each day is precious, so while no ones wants multiple myeloma, it does offer us a unique opportunity, to fight the good fight."
Steve,
Good article. However, your last few have been rather depressing. Yes, everyone who reads this has, or has someone with, multiple myeloma, and yes, "it is what it is".
You can't predict the amount of time anyone has left. All you have to do is read the paper, listen to the traffic report on the radio – people expire everyday by accidents, heart attacks, or other things out of their control.
Yes, I have multiple myeloma also, but I try to look at the positives. I have read articles where people live many years with this. Two sports figures come to mind: Don Baylor and Mel Stottlemyre. They have lived with this for many years, and they still do what they have been doing for a number of years. So yes, it is what it is.
I have multiple myeloma, presently in a controlled state with minor issues of course, but I'm living a dream because I'm alive, I can work, I can enjoy my grandkids, I can watch them grow up, and I can still hope to be a pain to my kids when I'm old.
Wonderful column, Steve! Thank you for emphasizing what a precious a gift of time that we've been given. Even if it isn't long enough, I surely am thankful for every moment I have on this Earth, and the words I use can either affirm that or detract from it. Even though I fall short, I strive to live each day gratefully, and it has made a difference in my life.
Thanks for another fine column, Steve. Great job in using two trite expressions to make some important points about living with mm.
My 87 year old mom tries to use the "It is what it is" expression sometimes, but she gets it a little wrong and says, "What is, is" instead. I like that one too - succinct.
Keep on writing and living, whether it's the dream or not.
Mike
Jill - You are probably right that many expressions are just space fillers and often just responses of habit.
Upasana -I appreciate your words of support and believe that you hit the nail on the head regarding Daryl's excellent comments.
Randy - I have always stayed away from conflating the terms incurable and terminal. If our disease were truly terminal (i.e., death is imminent), we would all probably have passed on by now. We are fortunate that we live at a time when the level of care we can receive from our medical teams has never been better and improving. Thank you for contributing such positive thoughts and comments.
Daryl - I would never suggest that one is better off for having been diagnosed with any disease, but I definitely believe that hardships can also deliver blessings, and my recent experiences support that. I retired because of multiple myeloma, but since then have been able to work to pursue my passion of public speaking and teaching/training. So while I had to give up a job I loved, because of giving up that job I was given another opportunity I never would have had had I not retired. Things usually have a way of working out for the better if we take advantage of the opportunities we are presented with.
Jack - It sounds as if our physical circumstances are similar: a controlled state with minor issues. I don't have grandchildren yet, but I plan on being around when they do come to spoil the heck out of them and then send them home to mom and dad.
Tabitha - You are so right in that our words can either detract from, or affirm, what we are actually experiencing. Simply put, and at the risk of using another cliche, "Words have meaning."
Mike - I like your mom's version better than the original, and as always appreciate your comments!
Hello Steve,
Wow, powerful article this month. Different perspective on a trite saying. Thanks for referencing my words. I am struggling with what the dream is now, altered by the limits of anemia. Once again, well written column that meant something to me personally.
Maureen
I just found the beacon. I had a tumor removed on my spinal cord April 3, 2016. From that day till today, I need a wheelchair to get around. 3 days after operation a physical therapist came to my room with a walker and told me I need to stand. Well, I told him I could try to sit up, but no standing. I did sit up, and then he insisted that I stand up with help of a walker. Well he dropped me! This was horrible.
I was diagnosed with multiple myeloma, did 3 weeks of rehab to get strong, still in a chair, 2 weeks of nursing home rehab (because of insurance), which was terrible, then transfer to hospital for 5 radiation treatments and outpatient chemo. I get Tuesday Cytoxan and Velcade then Friday just Velcade. I have completed 4 cycles and the only side effect is tingling in feet. Still in chair because of some missing feelings in part of my torso and legs.
Been doing outpatient PT several times a week. I love to sweat! The therapists are great and give me many exercises to do during the 1 1/2 hour sessions. Started cycle 5 then PET scan next week.
I have comes a long way since the operation in April. Still have a bit more work to go. They are talking a stem cells transplant back at the hospital that dropped me on floor! I am looking for a different hospital! Just to state it once again, I feel great, always hungry, but not walking. I use a walker in PT, of course, and do many PT exercises on bike leg machines and therapy table.
As for those little phrases you mentioned, people say what people say in their own spiritual journey (the secret). I choose not to and always know that everyone is here for my good, which I am open and receptive.
Thank you Steve,
Ray