Mohr’s Myeloma Musings: Defined By Multiple Myeloma
Since retiring from my job as a school superintendent nearly six months ago, I have made a concerted effort to not allow what time I have left in life to be preoccupied with the fact that I have multiple myeloma. In other words, I try not be defined by the disease.
Little did I realize how difficult that would be.
Because my life would be less structured with much more free time during retirement, I was concerned that the challenges of living with multiple myeloma would dominate my thinking even more than they did when I was working.
Being on a maintenance therapy is the first obstacle to not being preoccupied with the disease. My day starts with … treating multiple myeloma. (Or, as my doctor describes it, keeping my myeloma sleeping.) I take one pill of Revlimid (lenalidomide) each morning, followed by two tablets of Welchol (colesevelam) to control diarrhea, two tablets of the antiviral acyclovir, one tablet of aspirin to prevent blood clots, and two potassium capsules.
Ingesting one pill to control the multiple myeloma and seven pills to offset the side effects of that treatment is a daily reminder of being a multiple myeloma patient.
It is only since I have retired that I have noticed the amount of advertising that is directed at treating cancer. In one day, I noted four different cancer centers advertising on a national cable television station. Although multiple myeloma is never specifically mentioned in these ads, one tends to view advertisements from one’s own life experiences. So every time one of those ads appears, it is a reminder of being a multiple myeloma patient.
Far more numerous on the airwaves than cancer center ads are ads for specific drugs, some of which could be used for the treatment of multiple myeloma or for the side effects of myeloma-related drugs. Again, a daily reminder of being afflicted with multiple myeloma.
There are even reminders where you wouldn’t really expect them, such as the national news.
A case in point: President Obama recently appointed Vice President Biden to lead the federal government's “Cancer Moonshot,” and the Vice President will soon host a summit related to the initiative. As with advertising, one views news reports from personal experiences. So when updates about this initiative are reported, I automatically think about how it may impact my personal situation as a multiple myeloma patient.
While constant reminders of our disease make it difficult for us to avoid defining ourselves in terms of the disease, we also face the challenge that many people we know define us in terms of multiple myeloma.
I hadn’t realized this until a recent social event, where I learned that, despite my best efforts over the last four years, multiple myeloma has defined me in the eyes of others.
Several weeks ago, the board of education of the school district I retired from held a dinner to honor me and the board president who retired from the board at the same time that I did as superintendent.
Prior to the arrival of the meals that evening, we engaged in a reflective exercise. A basket was passed around that had slips of paper listing different events, activities, and initiatives that had occurred during my tenure as superintendent. Each person took one slip of paper and read its content. I was expected to comment on what was written on the piece of paper.
It was enjoyable reminiscing on the events of my time as superintendent. I had no trouble quickly commenting briefly on such things as successful levy campaigns, contract negotiations, hirings, and the like.
As we moved around the table for the second round of comments, I was thrown off guard when the former board president reached into the basket, pulled a piece of paper from it, and read "multiple myeloma."
It seemed as if a thousand thoughts went through my mind upon hearing those two words. Just two weeks earlier, I had given the graduation speech to the class of 2016, telling the graduates not to allow circumstances to define them. Thus, I didn't want to appear hypocritical and allow my comments to suggest that multiple myeloma had defined me. At the same time, I was amongst friends, and here was an opportunity to share with them how difficult the dark days of treatment had been, which I had always tried to downplay whenever they expressed their concern. But, I didn't want to elicit sympathy from a group who had been so supportive during those tougher periods of treatment, or make excuses for any of my failures.
During the awkward silence that took place while I contemplated my response, I sensed that everyone seemed more interested in this response than any other that I had given. I wanted to make sure that my response related to how multiple myeloma had impacted my work as superintendent and not bore those in attendance with personal challenges I have encountered that had nothing to do with being a superintendent.
My eventual response was that the disease had cheated me out of an opportunity to complete some of the initiatives I had begun. Because of multiple myeloma, I had retired three years earlier than I initially had planned, at a juncture where some of what I had considered my most important initiatives needed my leadership. Furthermore, treatment and its side effects had sapped me of the energy necessary to push some initiatives to completion that were started years ago when I was first diagnosed.
To be more concise, multiple myeloma had cheated me of time.
Since retiring, I have started training with a national leadership company with the hope of becoming a certified speaker and trainer with that company, which will enable me to start an educational consulting business. In one of the training sessions, a statement about time was made that in my opinion applies to living with multiple myeloma: Time can't be added, stopped, or speeded up; it can only be managed.
Managing time while working and living with multiple myeloma is a challenge – sometimes too much of a challenge – to overcome. Such was the case for me.
Hopefully, during this new phase of my life, I will do a better job of managing time so that multiple myeloma isn't defining me or cheating me of something than can never be recovered.
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 .
Hi Steve,
I've read your columns with interest but have not responded til now. I was 59 when diagnosed with multiple myeloma in 2008. I was the founding director of a small adoption agency and had no prior plans to retire. After a stem cell transplant in early 2009, I resumed seeing a few clients and resumed administrative responsibilities in May of that year.
So, this September will be the 8-year anniversary of my "new life." (I'm twice as far down this road as you!)
I work part time, set my own schedule, and continue to bike, swim, kayak, and take a daily one-hour walk. It was difficult at first to admit that I needed a bit more "down time," but my supportive friends and family helped me get over that quickly: "If you don't rest before we go kayaking tomorrow,you can't kayak with us!" (Did I mention how important humor has been to my life with multiple myeloma these past 8 years?!)
I look forward to reading your future columns for many years!
Hello,
As I read your article, I can't help wonder if there is a family connection? Mohr is not a common last name, it is my grandmother's maiden name. I wonder this for the reason that my father was diagnosed with Stage 3 multiple myeloma in 2009. Up until 2009 when he was diagnosed, to our knowledge no one in our family but a distant aunt had any form of cancer. So I guess I'm just wondering how much of a degree of heredity there is to it.
I hope your years ahead will be comfortable, memorable, and long. Thank you for writing these articles!
Bev - You story is certainly inspiring to me. When I was diagnosed 8 years ago, I was told that the prognosis at that time was 8 years, which I am sure has been changed since then. Survival time numbers really don't concern me anymore because there are plenty of examples of those (you being one) who have outlived such data. Having the ability to decide when my down time will be has done wonders for my health. In many ways, I am in better health since my early 30s. Humor certainly does have a positive impact on things. My family and I will regularly have a good laugh on some of the more entertaining episodes associated with our dealing with multiple myeloma.
Angela - The Mohr name is not very common. As far as heredity goes as a factor in getting cancer, I am certainly not equipped from a technical or medical standpoint to comment on that. Having said that, as far as my family goes, both of my grandparents on the Mohr side died of cancer, my dad died of hemochromatosis (a blood disorder), my mom died of cancer, my niece was stricken with a rare cancer, and my nephew is currently dealing with pancreatic cancer. It would be hard to argue that heredity hasn't been a factor in the Mohr family.
Thanks Steve for your column, and I hope that you continue to write for a long time, since you have so much to share with us all! It is really not possible to ignore the fact of having multiple myeloma when one is taking chemotherapy, since taking a medication such as Revlimid is a daily reminder of that. However, it sounds like you are living a full life, doing a lot of what you like to do.
I remember reading articles about a decade ago about cancer and cancer-related issues. I did not relate to that directly, but now I can understand that a lot better. Having learned a lot about this disease and also cancer in general, has been informative. So I have taken up new interests even as previous ones are left behind. I feel fortunate that I do have enough spare time to exercise and relax also.
Thank you, Steve, for another great column. I try to live in the moment as well, and there's a part of me that cringes everytime my husband and I hear ads for cancer research centers or stories about patients battling cancer. I imagine that being out on the spot in that way in front of all your former colleagues must have been very tough.
It's true that myeloma takes more than it gives, and often in ways that we can't be prepared for. I pray that researchers will soon find new therapies that put patients in permanent remission. Until then, we might all do well to turn off the TV.
Best wishes to you and your family!
Hi Steve,
Thanks for another excellent, heartfelt column. I completely agree with your main point about not letting your multiple myeloma define you. That is so important! But, as you said, there are reminders all over the place.
But there's something else you said - "Multiple myeloma has cheated me out of time" - that I might quibble with you about. Yes, it did cause you to retire earlier than you had planned, and you can't do the things in your job that you'd expected to do in your last few years of work. No question, that stinks.
But, technically speaking, myeloma has not cheated you out of time itself yet. You still have 24 hours in each day. You might put those 24 hours to use differently now than you did before, but for the most part, it's your choice what you do with them. And, from what you said, you're putting them to good use.
I guess my point is that there's no sense in looking backward and regretting what might have been. Instead, we all need to look ahead and make the most of the time we have now.
One benefit of your retirement is that it has given you more time to write your Beacon columns. And that's a benefit for all of us who read them each month.
(This is partly a pep talk to myself because I'm in a very similar situation to you, having retired a bit earlier than I had planned from a job that meant a lot to me, because of the effects of multiple myeloma and its treatment.)
Best wishes to you.
Mike
Mike - As usual, you make excellent points and add clarification to the points that I made. If I were to answer that question again, I would re-phrase it to say that multiple myeloma has cheated me of an opportunity to complete the job or to bring to a conclusion those things that meant a lot to me professionally. Having said that, I am very much looking forward, professionally and personally, and don't fear the future – regardless of what the disease may throw at me. Thanks so much for your sharing your insight. I always get something from your comments.
Hi Steve,
Another good column. I guess I'm fairly lucky. I'm still working, but I'm able to work from home. One good thing I found was I was involved in a program at the YMCA for people with cancer that helps with getting your strength and flexibility back, but you meet others who have cancer also. It was great because everyone got to work out, but some nights we would just sit and talk, someone may have had a bad day due to their cancer, and we would sit and talk about our own bad days. The group became very close.
Steve,
Thanks for your kind words. I get a lot from your columns!
Jack,
I'd just like to second your comment about the YMCA program. It sounds the same as one that I participated in at my YMCA. If I recall correctly, it was 8 weeks long, where we met for an hour 3 times per week. Each day of the week we did different types of exercises.
Like you, I enjoyed the interactions with the other members of the group and found that to be just as valuable as the exercises themselves.
The program was free, and you don't need to be a YMCA member to participate.
Mike
Thanks for the topic, which coincidentally, I had just been considering "I won't let multiple myeloma define me" immediately before I opened your article. Ironically, while I mouthed the words, my brain had to concede at the number of countless daily reminders of cancer in our everyday lives. You have counted the many ways, yet we can also recognize the times when we hear of others, friends, family, acquaintances newly diagnosed or enduring treatment, announcements of celebrities succumbing to the disease resonating on the nightly news. I am reminded when I take my daily dose of Revlimid, get an attack of nausea, tire easily, and a host of real or imagined symptoms and side effects of the disease and treatment.
I was privileged to have 24 months of remission after transplant and am pain free with the exception of age related bodily failure. Yes, I, too, am treated "differently" in deference to my recent relapse. I still work out 4 times a week, stay active in my community and church although retired, and plan for a month-long vacation in the near future (thanks to oral chemotherapy). While I get irritated by folks near to me who want me to be careful, I understand their motivations.
While I choose to share what I call "multiple myeloma lessons" with anyone who inquires, my intention is to help people understand my initial accidental diagnosis and to recognize the sometimes subtle symptoms, especially for those over 60, that can save or extend their lives. Relapse did not come as a surprise and I am quite content to accept a repeat of treatment that was not as severe as my breast cancer treatment 10 years ago. So, while I am not multiple myeloma, perhaps I can be a beacon to shed light on the disease and provide some positive views on cancer survival to those facing cancer and for those who love them.
Nancy - The saying "Every dark cloud has a silver lining" is so applicable to many of the situations we deal with. We are given new opportunities to pursue and though we might feel cheated of those things we have to give up, we just have to be willing to recognize new opportunities to enjoy what time we have left.
Tabitha - I don't know if it is just me, the fact that I watch more TV now, the TV shows I watch (political talk shows, Discovery, History, National Geographic, etc.), or whether there actually is increased TV advertising related to cancer, but I didn't notice it until I retired. Thank goodness for remote control - I usually just change the channel now.
Jack - I have never gotten involved in any type of support group (there are none in my area that I am aware of). but it seems as if everyone who has greatly benefits from them.
Sandye - I think staying active, whether it be physically or mentally, seems to be a common attribute of those who have have enjoyed a long remission. You certainly are a special person to have battled two forms of cancer and have such a positive outlook on life. I hope you have a great vacation!
Thanks Steve, when I see the thunderclouds and even tornado funnels reported on the news now, for July weather, I can relate to the saying about silver linings! Now I am in a different lifestyle than I was 7 years ago, due to having the treatments for myeloma, and am always trying to learn as much as I can about this situation. But I am still enjoying life and am very grateful for that!
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