Mohr’s Myeloma Musings: A Life-Changing Decision
Life is full of choices and decisions. For those of us afflicted with multiple myeloma, we are forced to make decisions that, prior to our diagnosis, we never imagined we would have to make. Is a second opinion necessary? Do I watch and wait or start treatment immediately? Undergo a stem cell transplant or even a tandem transplant? Pursue maintenance therapy or go treatment-free until relapse?
Unfortunately, these decisions are guided by the necessity of treating an incurable disease. They really have nothing to do with the important parts of our life, such as work and family. Everything is focused on beating the myeloma, extending our life span, and, hopefully, living as normal a life as possible.
Because multiple myeloma tends to be more common among those 65 years of age and older, how the disease impacts one's career may not be a factor to consider for many who have multiple myeloma, as they already have retired or are nearing retirement. But for those of us diagnosed in our fifties (or younger), our prognosis, how the disease affects our work, and how we feel about our work are issues we have to confront at some point.
As I have written in previous columns, every treatment regimen that I have been through – radiation, induction therapy, an autologous stem cell transplant, and maintenance therapy – has been successful. My latest three-month check-up confirmed that. Fifteen months after having an autologous stem cell transplant, I feel better than I have felt since my diagnosis three and a half years ago.
Despite that and the fact that I still love my job as a school superintendent, I have decided to retire at the end of the calendar year.
It is because I feel so good now that I chose to end my 37-year career as an educator. The reality is that this is the best I will feel physically, mentally, and emotionally. Relapse is inevitable, and with relapse will almost certainly come a more aggressive form of treatment. Relapse may be years, even as much as a decade, away, but the memories of how I felt during induction therapy and after the stem cell transplant are still with me, and I remember all too well how difficult I found my job during that time.
What also factored heavily in my decision to retire is the fact that I have had one bout of pneumonia and three rather serious upper respiratory infections since the stem cell transplant in June of 2014. The fact that I consider it an important part of my job to be in contact with our students – especially our elementary students, who some might say are germ factories – probably explains my susceptibility to these infections. However, I refuse to administer our district solely from behind my desk.
In addition, my ability to focus, recall facts, participate in any prolonged complicated discussion, as well as other cognitive skills important in the performance of my job have decreased noticeably. It therefore is best I step aside before any mistakes made as a result of such declining skills negatively impact the students I serve.
When I was diagnosed three and a half years ago at age of 56, the prognosis was seven to eight years. I am sure that the number has improved since then. Regardless of whether it is seven, eight, nine, or ten years, if I am a normal piece of statistical data, I probably won’t make it to the average life expectancy of 76 years. For 37 plus years I’ve “talked the talk” of the importance of faith, family, and friends. It’s now time for me to “walk the walk.” Retiring from my profession will enable me to do that.
Some might say that I have given in to multiple myeloma and allowed it to take even more control of my life than it already has. I like to think of myself as a proactive person. I want to plot my own future and not allow the circumstances of this disease to dictate my decisions.
I tempted fate once two years ago when I started coaching basketball again. Three months later, my myeloma numbers spiked. I had to begin treatment and, after one year, I stepped away from coaching again. Multiple myeloma robbed me of one of my passions in my life. I don’t want to let it do so again.
In spite of my fears of the unknown and the uncertainty of so many things, I look forward to the future. I feel optimistic that my doctor and the new advances in treatment will provide me with a life beyond my 37 years in education that is equally fulfilling and enjoyable.
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 .
Good thoughts, Steve. My work is done from a private office, sitting at a computer. Were I in regular close contact with others (particularly children), I'd probably make the same decision you have.
A few months ago I was asked to serve as an interim supervisor for what will probably be a year. I accepted the responsibility, but have decided not to apply for the position permanently. I know the on-going stress would weaken my system, and that's something I don't need.
We do sometimes have to swallow our pride and ambition and make the choice to protect ourselves for the long haul.
Thank you, Steve, for writing this genuine, heartfelt article. This hit close to home as I was diagnosed in 2011, STC in 2012; like you have been doing well on maintenance (fingers crossed for my 3 month checkup next week). In January my husband, who works at a university in NC, talked about if he waited 5 more years to retire at 66- it would be an unknown where I will be in this MM journey. So we made the decision for him to retire 2 weeks ago prior to the beginning of the academic year; we have put our house on the market; and to move to Charleston, DC where both of our daughters' families (grandchildren❤️) live.
I had gone back to work as a realtor after I recovered from STC, but like you have found I am not as sharp or have as much energy as before. This is a bit scary because it was sooner than we had previously planned; both of us really enjoyed our jobs. But in my heart I believe this is the right decision, so we get to enjoy each other, our family, life. Good luck to you as you began a new part of your life journey.
Steve,
I know you made the right decision.
I'm right there with you on recognizing my physical and mental condition and uncertain future having similar disease status. Although I'm slightly younger than you without a pension plan - I realize I don't need near the materialistic 'junk' I thought made my life better.
Unfortunately it took myeloma to teach me that - I'd be a fool if I didn't learn that lesson. I strive to teach others myeloma's lesson.
Thanks
Steve, good for you to take the initiative in determining how long you will work. While I do not have the option of retiring (I just turned 40 this spring), I can tell that I have more emphasis on family and church than I did prior to my diagnosis 2 years ago. I totally understand your decision to try and spend some quality time away from work before Myeloma demands a majority of your waking effort again.
Congrats, and I wish you the best in your upcoming retirement!
I made the same decision for similar reasons although I continue to work part time. No loss of cognitive skills but I need to do those other things that I love while I still can. I actually thought about that point this morning as I cruised down the road on a beautiful summer-like day. Not sure how many more of those I have but I am determined to enjoy as many of them as I can.
Asking the questions of 'What is important' and 'What do I really want to be spending my time on' becomes important when we are faced with the unending uncertainty of our disease and its treatments.
For me, I am planning to simplify my life - living more modestly, traveling more, and study new areas of interest.
RT
Steve,
Thank you for writing: "The reality is this is the best I will feel physically, mentally and emotionally. Relapse is inevitable." I am 77 years old, five years post SCT with no need immediately for treatment. I told my physician at Mayo this week I can't remember when I felt healthier. When I was younger I took good health as normal and paid it little attention and was unaware of how blessed I was. I can't imagine feeling better than I do now, but intellectually, I know there is trouble on my horizon - how far in the future I don't know. Your powerful words helped me get out of my head into the reality of my situation. For now, I will rejoice in how good I feel and keep living fully in my healthy now, yet knowing there will be change sometime. When it comes, I am confident I will be ready for a new situation. Thanks for your strong spiritual medicine.
Allen Nohre
Good move Steve!
I retired at 53 in good health after 31 years as a professional engineer. That was in 2003. I was diagnosed with MM in 2010, so I am so grateful my wife and I, used those years to pursue our passion for volunteer work, life simplification and our love of gardening. Since the diagnosis and treatment (no SCT), we still pursue our volunteer work and love of gardening, but at a slower pace. I don't think I could have handled FT work after the MM at 62. Enjoy your retirement while you feel good. Most people wait too long to retire and they don't get to really enjoy their years they looked forward to.
One myth we need to overcome is the amount of resources we need to support retirement. Living a simpler, less complicated life is so good and you will be amazed at how much less you need to live that life.
Pusser - you mentioned stress in your comments which is something I failed to do in my column and have always downplayed how it affects one's health. I realize now with a weakened immune system what an impact it can have on ones physical being.
Carol - our situation is more alike than you know! My wife is retiring at the end of October. I just hope that after 38 years of marriage we don't discover that we aren't compatible!
Craig - I don't have any second thoughts since making the decision and know it's the right thing to do. So many have helped me since being diagnosed that I want to pay them back in some small way and hopefully pay forward in some way.
Jay - thanks for your words of support. It sometimes takes a setback like we have experienced with this disease to remind us of what is important.
Andrew - although I will be retiring from education December 31, I have been able to secure some part time work after that in an education related area. Maybe it is partly due to getting old, but as you mention the simple joy in driving down the road on a nice day, I can relate to that as I seem to be much more aware of simple things like that now.
Radiant Tiger - we have a like mind. I am really looking forward to a more simple life. I think that being confronted with ones mortality naturally leads to that.
Allen - you motivate me and inspire me. A transplant at age 72 and no current need for treatment - Wow! I appreciate your kind words.
Great decision Steve. I truly appreciate you sharing your thought process.
Eric - thanks for the sound advice. So much is made of how much you need to to have put away for retirement that I think it scares many into working far longer than they have to. I think Radiant Tigers advice of a simpler life, which you also allude to, is an answer to that.
Matt - I hope that someone in a similar situation benefits from me sharing my thinking an what led me to doing this.
Steve,
I made the same decision to retire after my treatment for Myeloma which affected my memory and the disease itself made me prone to infections. Though money is tight, my life has become much more manageable and my mind has become more peaceful and balanced. I was diagnosed at 55 and have had an ASCT. My treatment never reached above a partial response but in October it will be 5 years since diagnosis and over 4 years post ASCT and I feel wonderful and my numbers on still fairly stable.
Congratulations on your decision and rest easy. You are not alone.
Becky
You are definitely taking the right decision Steve! While I wish you to have the longest remission one has ever seen for ‘ long remission’, the truth is that we do not know when it ends. I was beginning to hope in 4-5 years vacation, and I relapsed after 30 months, in line with the statistics. Until two months ago I felt great, swimming 3 times a week, no pain anywhere. Now I have a painful inflammation of the nerves of my hands, an indirect consequence of the relapse, I am weak, hemoglobin plummeting, lost 5kiloes and I am almost house bound. I hope that the new cures will make me feel better soon, and luckily there are no serious damage at the moment, just some lithic lesions that Zometa is helping to fix.
As you said, you do well because of the risk of infections. And because of getting to enjoy those aspects of life which are engulfed in daily work otherwise.
Finally, you will still have a part time role, and that is excellent! I think that many men identify with their professional roles, more so than many women, and when they retire some feel a bit lost without it, but in your case, you will still deal with the issues which have been keeping you, so you will truly have the best of both worlds!
All is left to be considered, at this point, is a pleasant trip to Italy! Hahaha!
Steve,
A tough decision and one that I am sure you agonized over for a long time. My decision is a bit easier, as it is being dictated to me by financial necessity. I am 63 and my wife is two years younger. She also has health issues and does not work. Thus my plan is to work until she becomes eligible for Medicare which is just before my 67th birthday. The costs of private health insurance, large deductibles on a fixed income would decimate us financially. I don't intend to be bankrupt in my retirement years. Thus I will work and save until then. So far so good but relapse is always in the back of my mind. Cancer is cruel in multiple ways.
Ron
Hi, Steve!
All the best in your new retirement life. Not an easy decision at all to leave education - such a worthwhile career. I was a teacher (loved it a lot!) until my 2013 diagnosis. Had a sct in 2014, in cr now and on maintenance velcade & feeling great). Being a volunteer, doing new activities (art, tai chi, music), and being with my husband, family and friends are helping me so much to enjoy life as it is now.
Thanks for your thoughtful columns and sharing of what's going on for you. You help others (like me) a lot. Wishing you a good day where you are.
Aloha Steve,
Congratulations! I understand how hard it can be to make such a dramatic change in your life. You are to be commended for choosing your lifestyle instead of letting the MM choose for you.
If working is what you truly love then keep going; if it isn't then stop. I think most of us are more afraid of the change than we are in love with our jobs. Maybe you can take a less responsible part-time position that will allow you some limited interaction with the kids? Maybe you could try pure volunteer work with kids that will help you fill your passion.
Whatever floats your boat, seize the day and enjoy your health!
Aloha
Tom
Lattecat - I am glad that you have had such a good response to treatment and I would take such results in a heartbeat. I'm looking forward to reaching that peaceful and balanced peace of mind as you have.
Annamaria - It is because of what has happened to you that I decided to retire now rather than later. When that inevitable relapse comes I want to be able to devote all of my effort to dealing with that rather than worrying about both my relapse and work. If my wife has her way, some day we will make that trip to Italy. I hope that a treatment can be found to improve your condition.
Ron - I appreciate your comments and have always respected your perspective when you comment on columns. While I feel the need to keep busy post retirement with some form of employment, the increased costs of health insurance in my retirement system's health plan (quadrupling of deductibles, premiums, and out of pocket expenses) makes it a necessity. I hope your good health continues and that the time till you and and your wife get to that Medicare eligible age, which my wife and I also have in sight, passes quickly and uneventfully for you.
Sylvia - Teaching certainly is a rewarding career and even though I I have spent the last 18 years in administration, the thing I will miss the most is the kids. Thank you for the compliment on my columns.
Thomas - The part time position I will be involved with will fortunately allow me to work with educators and kids. I have always admired your "seize the day" mentality that comes through in your writings and it is such a great message for those of us with mm.
People have quoted me the old saying "No one on their deathbed has regretted not spending more time at work" when I have wondered aloud about whether to continue working or take extended time off/retire as I recovered from my recent auto SCT.
I'm in the position of having used up all the currently available treatments (in Australia)including two auto SCTs so my next relapse will be a challenge given my lack of response to currently available drugs. Prognosis is not that good (worst case scenario 1 to 2 years) so while I have a reasonable level of fitness & health now (even with some compression fractures in my back)I'm using it to do things I have on my "bucket list" including some travel. It has helped that I'm within striking distance of retirement age and accumulated leave will take me to that date. I notice stress levels have greatly reduced given that, like the old Chinese curse, work is going through "interesting times".
Michael - I admire you for going through two transplants, I'm not sure I could go through a second one and have often wondered how I would handle confronting that decision to do so. I find it interesting that there is such a difference between the drugs that are available in different countries, especially countries of similar standards of living. Although I do not have a bucket list, the one thing I would like to do is visit Australia, where I lived for 7 years in the late 1960s and early 70s. I hope your good level of fitness and health lasts for years.
This was a great column about a hard decision.
I had to make a similar decision--whether to renew my law license or move it to inactive status--soon after my second SCT. I agonized over it for several days, then tossed and turned the night before the deadline. At about 2 a.m., tears streaming down my face, I realized I was not up to practicing law and may never again be up to it. Once I made the decision, I slept like a log. In the 10 years since then, I have never regretted the decision. I made a career in a related arena and life has been gone. I did finally reactivate my license, but only because of a work-related project, not to reenter the fray.
Follow the path that is right for you.
Hi Steve and all,
I was diagnosed in 2013 (July). ASCT in Feb., 2014 and began maintenance after that... After 39+ years of work in human services and in academia, I retired Aug. 16 of this year. Headed to Turkey for a three week tour August 23 (an amazing and safe place, filled with history and beauty and hospitality). And we booked a three week African safari for next summer! A couple of consulting jobs are keeping me busy right now, but I look forward to my "new life" and new adventures. I'm 63, and I feel good, although a bit of fatigue kicks in at times..
As Steve notes, there is life after MM diagnosis, and the initial shock subsides. It takes a while to get a sense of equilibrium - at least it did for me. I too may not reach the median lifespan (76 or so years for males, I believe), but I'll enjoy what I have remaining - and will do so with the people I love and people I will serve in new ways... And I'll work to be kinder to myself and those around me.....
Thanks, Steve, for offering your story as a springboard for thinking about my own!
Richard
Hi Steve, It seems that circumstances have pushed you into an early retirement, but maybe there are other activities or part time jobs that you would enjoy also. I would just caution about taking on too much all at once! Retired people are some of the busiest people I know. I still work part time for my husband, as a book keeper, but have a lot of other activities also. I really have to pace myself, because of the slow down caused by my chemotherapy, my family involvements, interests and volunteering! September is such a busy month that way. I think that you probably miss the start up of classes, and the students would miss you also! Hopefully new projects will soon be forthcoming though.
April - This really wasn't a decision I agonized I over, even though I still really enjoy my job. In fact, it is one I felt myself increasingly gravitating towards since my stem cell transplant last June due to the mm and side effects of treatment, I just wasn't able to perform like I expected. My biggest fear was what was going to fill the void. Fortunately, I have been able to find part time employment that I think will be challenging and fulfilling. I hope, like you, that retiring at such a young age isn't a decision I look back at and regret. Time will tell.
Richard - You certainly are proof that there is life after diagnosis. Good for you!
Nancy - Thanks for the words of advice. I just have to make sure that I don't turn this part time position into full time work. I'm sure my better half will not allow that to happen!
Congratulations on retiring! maybe you could think about getting back into coaching at some level once you are no longer working full time. Best of luck!
I miss coaching basketball and football. I coached for ten years. But I think you're making a wise decision; those kids are carriers! One reason I've been able to stay so healthy, despite being on continual therapy (and worse) for over eight years, is we don't have kids. I like 'em. Miss teaching and later real estate. But writing from home does have benefits. In your future?
Heather - As passionate as I am about coaching, I just don't want to take the chance of starting something I can't finish. My daughter is coaching varsity cross country at the school I work at now and even though she forgets that as superintendent I'm her boss and not her assistant coach, I am taking a great deal of joy in watching her coach.
Pat - It is interesting that we have both coached the same sports. I initially wanted to be a head football coach but gravitated to basketball. As for kids being germ carriers, I was healthy all summer long but within a week of school starting this year I was clobbered with an upper respiratory infection that has lingered for over two months now. At my last check up my doctor took me off Revlimid for two weeks to clear it up. Writing for the Beacon is one of the most enjoyable things I do, but I've got a long way to go before expanding beyond that as I need an entire month just to get one column completed. Your writing and sharing your experiences inspires me - thank you and please keep it up!
Steve, I stumbled upon this column by accident. I knew many things about you, but I didn't know you were a writer. I'm impressed. You have made a difference in many lives, and now you will continue to do that with your writing. What your illness and George's Parkinson's have taught us is that the time we have is now. Blessings to you and your beautiful family.
Steve,
Congrats to you, I know you made the best decision for you and your family. I'm sure you will enjoy retirement. Sounds like you will still be as busy as you want to be.
Wishing you all the best,
Sherry