Mohr’s Myeloma Musings: Fight Back, Remember, Celebrate
On the day this June that marked the one-year anniversary of my autologous stem cell transplant, Relay For Life, the fundraiser for the American Cancer Society, held a local event on our school campus. This is the fourth year that the event has been held on the campus of the school district for which I am superintendent. I made a point of checking in with the organizers daily in the days leading up to the event to make sure that they had everything they needed to stage another successful relay.
As I observed all of the energy and enthusiasm that went into the setup for this event, I was struck with a sense of hope that I previously haven’t felt in living with multiple myeloma.
While taking in all of the informational and motivational posters and signs as I walked the track one last time before the opening ceremonies, one poster struck me as particularly relevant to our experience of living with multiple myeloma. It read “Celebrate, Remember, Fight Back.”
Despite serving as an honorary co-chairperson of our local event three years ago, together with my wife who had just been diagnosed with melanoma at the time, I was unaware when I first saw this sign that it is the motto of Relay For Life. According to their website, Relay For Life “Celebrates” the lives of people who have battled cancer, “Remembers” loved ones lost, and “Fights Back” against the disease.
My three-and-a-half-year experience with multiple myeloma leads me to believe that reversing the terms of this simple four-word motto to “Fight Back, Remember, Celebrate” makes it more relevant to those of us with multiple myeloma.
Multiple myeloma sufferers are in a perpetual state of fighting back against their disease. Being told one has cancer is, in and of itself, a traumatic experience. Being informed that we have a form of cancer that is incurable adds immeasurably to that trauma. Even when treatment has yielded successful results, which I have fortunately experienced, remission is rarely categorized as complete, and relapse is inevitable. Add to that the side effects of various treatments, and that perpetual state of fighting the disease becomes a daily effort.
But fight back we must, buoyed by the hope that a new treatment regimen will buy us more time or that someone will suddenly discover a cure.
While Relay For Life says that we should “Remember" so that we might "honor those who have fought or are fighting cancer,” I prefer to use it as a regular reminder to give me hope for the future.
We need to remember that we are not fighting back on our own. As myeloma patients, we tend to focus on the treatment side of dealing with multiple myeloma. That had been my outlook until I recently perused the websites of the major cancer research centers worldwide and read the curriculum vitae of the doctors involved with multiple myeloma at these institutions.
I had no idea of the amount of work they do in peer-reviewed research writing, clinical trials, fund raising, and public and professional educational initiatives. It is because of this that I feel confident that a cure will be found in my lifetime. Having said that, I can’t help but recognize what a formidable foe multiple myeloma is if such a concerted effort of highly motivated specialists has yet to find a cure.
One thing that I try to remember is that "incurable" does not mean "terminal," at least not in the sense that death is imminent. By imminent, I mean days, weeks, or months. I know that this is easy for me to say, as I am not classified as having high-risk myeloma. Every treatment I have undergone has been effective. I feel better now than I have at any previous time since being diagnosed in 2012. I am suffering only from the side effects of maintenance therapy – moderate neuropathy, diarrhea, and occasional fatigue.
But we also have to remember, regardless of our individual conditions, that multiple myeloma is a time robber. As I reflect back on the last three years since my diagnosis, I feel I lost years – years when I should have been enjoying my son's final years of varsity sports, guiding my daughter through her career exploration as she finished college, capitalizing on my years of experience on the job to undertake important initiatives that had been planned, and enjoying more time with my wife as we became “empty nesters.”
Instead, everything during that time period was focused on treating the disease and getting to a sense of normalcy. That normalcy has been reached, even though it is a new normal, where time is robbed on a daily basis dealing with the side effects of maintenance therapy and the anxiety that goes with the regular checkups.
I try to remember that we are just one doctor, one experiment, one changed procedure away from a cure for multiple myeloma.
My pastor’s recent sermon reinforced that thought as he shared his experience dealing with his son’s diagnosis of a cancer that no one his son's age had ever survived. After his son went through several unsuccessful treatment regimens, my pastor received an unexpected phone call from a doctor who felt that he had devised a new surgical procedure that would prove effective, and he wanted to perform that procedure on my pastor's son. This occurred over 18 years ago, and the son is now cancer free and a practicing nuclear medicine technologist.
I try to remember that not every ache and pain is myeloma related or an indicator that new lesions have developed. Because multiple myeloma strikes most of us near or well past the age of 60, most of the aches and pains that we worry about are simply the effects of growing old.
While the idea of celebrating any aspect of living with an incurable disease may seem odd or overly optimistic, regardless of how serious the condition is, there is always something to celebrate. It might involve celebrating the smallest of accomplishments related to the disease and its treatment, such as a week-long respite from diarrhea, or that ultimate goal of achieving a stringent complete response. Those things worth celebrating will obviously be dictated by our individual conditions, but I have found that celebrating success, no matter how small it might be, makes for a much happier existence and provides a sense of victory over the disease.
Roxanne Emmerich, a celebrated motivational speaker, stated that we should "celebrate success at every stage. Celebrate it all. Everything that goes right ... celebrate, celebrate, celebrate!"
We would all do well to follow such advice.
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 .
I have high risk myeloma and was recently told by my oncologist that I could live decades, but this disease could also go south on me (my words). This disease might be incurable, but thank you for pointing out that does not equal terminal. That is a marker that is often misused in discussing our situation, and pertains mainly to the very end of life.
Steve,
Another great article, you hit the nail on the head. We have a disease, that is in most cases can be managed. You have to feel good about most everything now – walking, running (if able), riding a bike, cutting the lawn, spending time with loved ones. It was important before, but more so now.
Thanks for a great column. And the encouragement.
Thank you, Steve, for encouragement and a celebratory way of looking at multiple myeloma.
Each day I do try to find small lovely things to be joyful over and yet there is that cloud that hangs over me. Now at a crossroad of another treatment, I guess I can be happy that there is a new pill. Suzanne
dx Oct. 2008, ASCT July 2009 considering another one...yikes!
ELS - I think you are spot on in your outlook. I don't think I have ever used the word terminal when describing the disease to others, preferring to use incurable. As you state, there is a huge difference.
Jack - While I will never be thankful for having this incurable disease, I do know that I have a whole new perspective on things, being far more appreciative of things I used to take for granted. For example, I just got off the golf course after playing with my son. I was horrible but it was a beautiful day, we were virtually the only ones on the course and it was the best time I've had all week. I can't even remember my score, much less care about it.
Heather - I appreciate your kind words!
Suzanne - Like ELS, you keep things in perspective with our "new normal" with the realization that things can "go south" or there is "that cloud" hanging over us. I think the key is keeping a healthy balance. You are a far stronger person than I to consider having a second ASCT. Good luck!
Thanks so much Steve. This is very encouraging in that I'm where you are. Most I run across can always point to someone who has passed on. I was elated to get out again and use the weed eater and do something as simple as take a shower without a problem. These are celebrating moments because they are no longer taken for granted. I've learned to manage side effects since an allergic reaction. I requested to take the suspect med every other day which my onc agreed to as well as carry water and regurd med in my purse for reflux and something for diarreah. i use them rarely, with no more incidents of allergic reaction. By the way. What was the new procedure and the Drs. contact info who worked on your Pastor's son?
Thanks again.
Patricia - You make a point about the flexibility of adjusting our medications that that is, I think, far too often overlooked. I know that my doctor has adjusted my doses and frequency several times to adjust to the side effects I experienced. I will have to do some checking into the information your requested regarding my pastor's son. I do know that the cancer was not multiple myeloma.
Steve,
You mentioned diarrhea several times. If it is the result of your maintenance treatment, have you tired colestipol, which I discussed in one of my columns?
Thanks, Steve, for this upbeat but honest column. I really feel good for the first time 2 years and 4 months post transplant. Some minor side affects are in place, but, as you said, it is a new normal. The only thing I really am still affected by is crowds. As soon as I am for some reason in a crowd, I will be sick the next day. My numbers are good even with maintenance Revlimid 3 weeks 5 mg per day and 1 week off. My bloodwork this week didn't show any monoclonals. So I am really celebrating. Wish you all a long survival. Maybe I am cured, who knows.
Andrew - I have not used colestipol during maintenance therapy. Over-the-counter meds have proven effective – almost too much so, such that I go to the other extreme. My diarrhea is so sporadic and unpredictable that I pretty much just grin and bear it and use the over-the-counter meds only when traveling.
Christel - At the risk of appearing overly optimistic, our new normal is, in and of itself, reason to celebrate, in spite of the side effects of maintenance therapy and the knowledge that relapse is inevitable. I find it fascinating how different the responses are to returning to a semblance of normalcy for successful ASCTs. Thank you for your kind comments!
Steve,
Thanks so much for your article and positive message. I like: "fight back, remember, celebrate" a lot. Thanks for your perspective.
Wow! What a realistically upbeat column Mr. Mohr! And some great encouraging comments too. Mr. Mohr we love your columns, which give us the much needed hope and encouragement. Do keep writing.
Sylvia and Upasana - I appreciate your kind comments. My experience with this disease has been an easy one compared to so many others. I just hope that I can keep up that positive outlook when the inevitable relapse and tougher times come.
Thank you for such an upbeat outlook on this disease. I needed this pep read.
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