Mohr’s Myeloma Musings: My Three R's
When most people see the phrase “The Three R's,” they automatically think of Reading, 'Riting (writing), and 'Rithmetic (arithmetic), the foundations of a basic skills-oriented education. Or, for those who are environmentally conscious, the association might be Reduce, Reuse, and Recycle.
At this stage in my life, my Three R's consist of Retirement, Remission, and Revlimid.
One might ask, what does retirement have to do with living with multiple myeloma?
For me, everything.
It was multiple myeloma that led me to retire at the end of last year at the young age of 59. I did so despite the fact that I still enjoyed my job as a school superintendent. I had recovered completely from my autologous stem cell transplant in June of 2014. Apart from suffering the usual side effects (neuropathy, fatigue, diarrhea) of my Revlimid (lenalidomide) maintenance regimen, which have been made manageable by medication, I felt as good physically as I had felt since my diagnosis in April 2012.
What couldn't be managed by prescription was the sense that I was slipping cognitively. The fog of chemotherapy was real, and I had little faith things would improve given that, for years to come, I would be on the very drug that had caused this decline.
I also was approaching the midpoint of the eight-year prognosis for living with this disease, which I was given at the time of my diagnosis. Simply put, if that survival estimate was accurate, I didn't want to spend the last four years of the time I had left working in one of the most demanding and stressful jobs in education.
That concern seemed to gain credibility recently when I learned of the unfortunate passing of fellow Beacon columnist Pat Killingsworth. Pat is the third columnist who has succumbed to multiple myeloma since I first began sharing my experiences with Beacon readers two years ago. The fact that the three of them survived on average just over seven years after diagnosis makes me wonder if I should add a fourth R – Resignation – to my Three R's.
Adding that fourth R would not mean that I have given up, or that I have a fatalistic sense of my future with multiple myeloma. Rather, it would indicate a recognition of the harsh reality that relapse is inevitable, regardless of how successful previous procedures and treatment regimens may have been.
I have been retired from my job as a school superintendent for more than a month now. While I greatly enjoy doing what I want to do when I want to do it, there are some challenges that I was unaware of.
The challenge of staying occupied has been offset by taking on part-time employment. I am now working with an organization committed to developing education and economic partnerships within our county.
Changing health insurance coverage has been more challenging. It took several phone calls and conversations to determine that Revlimid is covered by my new carrier. Revlimid is only dispensed through specialty pharmacies, and my new carrier did not work with the specialty pharmacy that I have been dealing with for the last three years. Fortunately, this too was resolved after numerous phone calls, and I was able to refill my Revlimid prescription without disrupting my treatment regimen.
The relief of being able to continue my maintenance regimen without disruption was quickly offset by the fact that the deductible for my new insurance plan is double than that of my previous plan.
It is generally accepted that stress can have a negative impact on one's health, either magnifying current symptoms or accelerating a condition. If such is the case, then I can be optimistic that my state of remission will continue. The day I walked out of my office for the last time, I felt the proverbial weight lifted off my shoulders. Family and friends all comment that I look better, appear more relaxed, and – from my family's standpoint – am far more enjoyable to be with. My new part-time position is stress free and allows me to continue working with many of the people I enjoyed working with for the last 20 years.
As many on Revlimid can attest, one of the most common side effects of the drug is diarrhea. Before retirement, I barely avoided numerous embarrassing incidents related to diarrhea at work. While the drug Welchol (colesevelam) has for the most part eliminated this condition, it has not done so completely. However, the fact that I now have complete control of where I need to be eliminates the stress that this condition caused.
During my time on Revlimid, I have found that the side effect of fatigue is not constant, but rather that it comes in a sudden, unexpected wave. Now I am able to walk away from whatever I am doing, rest in any manner I choose, and return to what I was doing when I feel up to it.
Like fatigue, neuropathy, another side effect of Revlimid, has not been a constant condition that I have experienced. It comes and goes, varying from barely noticeable to moderately uncomfortable. I was prescribed Cymbalta (duloxetine) to treat this, but found that it was slow acting and affected me emotionally in ways I was not comfortable with. Long, hot whirlpool baths have been my best remedy to deal with neuropathy, and being on a retirement schedule (really a non-schedule) enables me to soak the neuropathy away when needed.
In short, retirement has made the disease more manageable for me. Whether it has had any impact on my condition may be too early to determine. A good indicator may come at my next three-month checkup in early March. The results of those blood tests will determine if the faint-to-moderate sign of a monoclonal protein in my last blood test is no cause for concern, as my doctor indicated, or if I'll have to add yet another R to my Three R's – Relapse.
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 .
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- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Northern Lights: My First Six Weeks On Darzalex, Revlimid, And Dexamethasone
- Myeloma On The High Plains: My Eyes Have Been Opened
Hi Steve,
I sure hope that your next checkup goes very well for you. I, too, am now in retirement mode (retirement happened for me right after diagnosis in 2013) and find that now I've got time to "take time." Just being able to do regular, daily exercise (walking, light weights, balance exercises),is great. Keeping that stress down, both physical and mental, is key, I agree. And it definitely helps me to manage being on Velcade maintenance (since June 2014). Thank you so much for your column.
I was reading your column while driving home from a skiing trip when, bam, you hit me with the fourth R. I didn't see that coming even though it is our reality.
Keep on smiling
Sylvia - I think your phrase "having time to take time" is a great one and plays a big part in reducing mental and even physical stress. I, embarrassingly, am a fair weather exerciser and need to get on a regular exercise regimen now that I don't have the excuse of being too busy. I appreciate your comments.
Craig - I think one could write several columns on just two R's – Relapse and Resignation – which are the reality of living with this disease. I have often wondered which is a bigger blow, the initial diagnosis or relapse? Until I experience relapse, I will follow your advice and keep on smiling.
Hi Steve, from another Steve,
I retired before my diagnosis in late 2008. I was fortunate to have my plans already in place and a loving wife (and caregiver) to share them with when I started treatment. I agree with your comment on cognitive deterioration and I've talked with other chemo patients who say the same. And I've experience the long-term effects (3 years) of Revlimid, Velcade, and dex. It seems to me, if you can swing it, it's best to accomplish those things on your "bucket list" while physically and mentally able. Kudos to you for taking the retirement plunge.
If you don't (and anyone else reading this) already know, the LLS offers financial aid to multiple myeloma patients up to $10,000/year for many expenses related directly to multiple myeloma (like medications), including health insurance premiums. I believe you have to have an income lower than five times the poverty level, but in retirement this is often the case.
Thanks for your column and may you have a long and pleasant retirement! Steve
Steve,
I was also diagnosed with multiple myeloma at age 59, but that was 7.5 years ago. I also became semi-retired. As a self-employed adoption social worker, I have the ability to set my own schedule. My wife and I bought a camper van and have spent winters in the south, kayaking, biking, and beaching. My remission after my ASCT lasted 4 years, and when I began to relapse, my oncologist put me on the Revlimid / dex regimen. He also told me then that there were new drugs in the pipeline, and I shouldn't worry about the 8 year timeframe.
He was right. I just started on Ninlaro being added to the Revlimid and dex, and in the first cycle, improvements in my "numbers" " were significant.
We all have multiple myeloma, but we also have different bodies. I refuse to believe that I have a predetermined "expiration date."
I swim a half-mile nearly every day, enjoy my family and friends - and plan for tomorrow. Life is too short to live any other way!
Sending you lots of positive thoughts for your March visit! No more R's needed, and definitely not of the "Relapsed" variety!
Steve,
I could relate to so much of what you wrote. I was diagnosed 4 years ago and relapsed a year and a half ago. I took a leave of absence at that time and felt I could not go back and qualified for disability. I stopped working at the age of 61. It has been such a relief without the stress of my job and it makes it so much easier to deal with the side effects, including fatigue, GI issues, and the cognitive issues. I have been stable on maintenance Velcade and dex and pray the remission continues. I am not at all bored and still have lots of projects that I plan to tackle. I recently got an exercise bike, as I needed to do something, and this has been working out well for me. I hope to start walking once the weather gets better here in New England. I wish I could find a way to not always be thinking and worrying when the next relapse will occur and in what form as I am now nonsecretory. Enjoy your retirement and think of it as a time to Relax, Refresh, and Renew!
Diane
Steve - A big factor in retiring was to be able to do so while still in good enough health to enjoy it. I know that many question the validity of chemo brain, and in the time leading up to retirement I was questioning myself as to whether I was overreacting. My part time job requires a lot of desk work / paper work, but nothing of the complexity of the work involved when I was a school superintendent. Even now I find it difficult at times to focus and complete projects without taking a break. Your point about the LLS and other similar programs is a great one for all to be aware of. Celgene contacted me to make me aware of financial assistance that was available for Revlimid, as did my new specialty pharmacy. While I won't ever qualify for such assistance, I find it admirable that both groups made such an effort to inform me of that possible assistance.
Bev - Your description of your experiences gives one hope for defeating those established time frames of survival. My wife will retire in December and our travel plans are to attend an Ohio State game in every Big 10 stadium and visit every presidential library. That should keep us busy for a few years.
Tabitha - I appreciate your words of support.
Diane - When you find a way to not think about this disease, please let me know! Worse than the side effects of treatments is the fact that thinking about the disease occupies far too much of my thinking. I like your 3 R's better than mine.
Hallo Steve,
I have been taking Revlimid for 6 years, with side effects you describe. Most don't affect my normal day-to-day living, with the exception of diarrhoea that until about 6 months ago was the bane of my life. I came across a reference to Questran (cholestyramine) and, after consultation with my doctor, started taking 1 sachet a day. The effect has been almost magical. Emergency rushes to the w.c. no longer happen. My doctor says that it is an old medicine, largely used before the arrival of statins. After my experience he now recommends it to other patients.
Annette
Annette - The experience and degree of our "gastrointestinal issues" sound very similar, the only difference being you have been on it about twice as long as I have. My condition had gotten so bad that it was influencing and restricting my daily activities. At my last check up, my doctor prescribed Welchol (colesevelam), a drug used for lowering "bad" cholesterol, indicating that there has been some success for Revlimid users in controlling diarrhea. It has worked remarkably well for me and I have had very few instances of diarrhea since then.
Hi Steve - I'm glad to hear that the Welchol is working for you. The Beacon published an article on Revlimid-related diarrhea and bile acid sequestrants:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect" (Oct 14, 2014).
Anyone who is suffering severe diarrhea while taking Revlimid should ask their doctor about this potential solution.
Hi Steve,
Once again, your writing spoke to me in a very personal way. Like others, multiple myeloma pushed my retirement earlier than I wanted from my position as a full time professor of nursing. I loved my job with a passion.
I now view my multiple myeloma as my part time job with forays into being full time. I think it's too early for resignation, since there are 3 promising new drugs being used. I have started with one of them, and will write about this in my next column.
I also am exploring other ways to find purpose and self-fulfillment. I enjoy my writing. You have a gift of writing, keep sharing with us.
Maureen
Holt - I'm sure that readers here will appreciate you sharing the Beacon article on Revlimid-related diarrhea and bile acid sequestrants. I wish that I had remembered the information from this article. It might have saved me from a number of what were some near-embarrassing situations.
Maureen - I hope that readers don't interpret my use of the the term resignation as a sense of giving up, but rather an acceptance of the fact that relapse is, at the present time, a reality of living with this disease. I appreciate your kind comments and enjoy your columns and look forward to your writing on the new treatment you've started.
Hi Steve, Please remember that statistics do not govern how long we can survive with this disease. Everyone is a unique patient, and it isn't a good idea to draw direct parallels between us, in my opinion. Of course we mourn those who are gone, though, and it makes us realize what an awful disease multiple myeloma can be.
I think that you are wise to slow down and become semi-retired, and take the time to do what you may have put off during your busy career as a school superintendent. Even though my husband is still working full time, my working schedule is less onerous, and we both take the time to travel, enjoy our family, and get enough exercise. He likes to run half marathons, and I try to keep fit too. I also enjoy my creative activities, such as the choir singing and working on fibre arts. My volunteer work is rewarding. Thus, I feel that I am already living my dream life, even if I am taking meds for multiple myeloma! At my age, which is retirement age, I feel comfortable with my lifestyle.
Hi Steve,
Thanks for another excellent column! Much of my experience with myeloma mirrors yours. I retired almost 2 years ago, about 14 months into my myeloma treatment journey. Just like you, I enjoyed my job but wanted to make sure I had time to focus on some other things that were/are important to me. And the uncertainty of how much time I have left due to myeloma weighed strongly in my decision.
Also like you, I had a mentally demanding job and noticed my mental performance declining a bit due to chemo brain and/or age (hard to know how much was caused by each of them). None of my co-workers or managers ever said anything to indicate that they noticed any difference in my performance, but I did; I wasn't keeping up with the standard I'd set for myself. I sort of thought of it like a professional athlete whose skills were starting to diminish. I didn't want to be the athlete who continued playing well past his/her prime.
So I made the decision, and I've been happy with it.
I wish you many happy years of retirement, remission, and rejuvenation!
Mike
Steve, finding each our own way in dealing with multiple myeloma is key. At my own request, I stopped last week taking Revlimid. Both my oncologists, one close by and one specialized in multiple myeloma, agreed with me. So now after in total 3.5 years of taking chemo's and 1 transplant I will give my body a chance to handle it on its own. I really want to have quality of life and I will see what this choice will bring me. I will be under surveillance from both my oncologists, they are curious too in how I will do. I am in remission but monoclonal bands are still present. Stay safe and thank you all for picking up your columns again after our sad loss. Take care.
Nancy - I agree that statistics do not govern how long we survive with this disease. I have used them as one source of information in helping me make decisions on how I want to live the rest of my life with this disease. The most important thing is to be comfortable with the decisions you make and, like you, I feel good about where I am at in life now, and with the decisions I have made in dealing with disease.
Mike - You are spot on in describing our experiences/situation. I like your comparison to pro athletes who hang around too long. I knew that my work product wasn't at the standard that I expected of myself, even though, like you, no one else had commented that it had deteriorated. It is a lot easier to walk away on your own terms rather than waiting until that decision is out of your control. I really appreciate your perspective and comments on The Beacon.
Christel - Good for you in charting the course YOU want to pursue in regards to your treatment. I admire your courage and wish you all the best in your new Revlimid-free life!
Steve,
Thanks for your column. It was very informative. I am new to the Beacon. I was diagnosed with MGUS in 2012 and just two weeks ago started my first treatment with Revlimid and dex. Still not too sure about what to expect. I have not had any obvious symptoms, but my blood counts have been getting lower and lower and my IgA level is getting higher and higher. So here I go.
I will be following you closely since you have a gift for explaining complicated situations. I wish you the best as we continue this journey.
Hi Ron - You have found an unbelievable source of information in The Beacon. Everything I have learned about multiple myeloma has come almost exclusively from my doctor and medical team and The Beacon. The beauty of The Beacon is that you can access information 24/7. When I first started writing for The Beacon just over 2 years ago, my initial purpose was to give a newly diagnosed patient's perspective. You might gain something from looking at my previous columns to give you an idea of what another newly diagnosed / treated patient experienced. Better yet, read the columns by Pat Killingsworth, who sadly passed just recently. Pat wrote far more elequently than I could dream of, and his knowledge of the disease was immense. I recently spent an entire afternoon reading his Beacon columns from first to last and only wish that I would have done so when I was first diagnosed.
Good luck with your treatment regimen. I had very little trouble with Revlimid during my induction phase. The dex was another story, as I had to have the dosage reduced. Once that happened, things were pretty much manageable.
Wow Steve - you hit that one out of the ballpark!
I am amazed with each Beacon article I read as I feel that we learn something new each time. The explanation of your three R's hit me like a splash of cold water on the face. My husband's situation is very similar to yours. What I did not realize was the prognosis for multiple myeloma - no one has ever really shared that with us. When we arrived at MD Anderson in July 2014, they told my husband that he could have died within six months without treatment. Your reflection on several of the Beacon contributors passing at the seven year mark was quite sobering. On the other hand, there are those who have beat the odds - gives us hope.
I think you were wise to retire - we had just retired a little more than a year before my husband's diagnosis. Thank God we did! In the past 20 months, we have spent 9-10 months away from home at the cancer center, as well as monthly visits in between extended stays. Eliminating the stress of work (jobs we loved), commuting to work, and work-related travel has enabled us to focus entirely on his care and well being.
We like your current three R's and hope you don't have to revise your current definition for a very, very long time.
Hi Steve,
Thank you for a great article.
Wow, you nailed the side effects of Revlimid / multiple myeloma. I too retired when the chemo fog became too much. Also the restroom issue was becoming a problem for me also. I drove to home appointments and prayed nothing unscheduled would happen.
I gave up doing a lot of things because of diarrhea. I needed to know if or where the closest restroom was for anything I was going to do. My doctor recommended Imodium. It helped me a lot. But I know what works for one person doesn't always work for another.
Thanks again for the great article and good luck on your March tests!
Dot
PattyB - I know that I am not the most objective observer when it comes to The Beacon, but I doubt that there is a better source of information for those affected by multiple myeloma. I read all parts of it on a daily basis and learn something new or get a new perspective on living with the disease after every reading. As many on this site have noted, the prognosis predictions must be taken with caution, because the disease is so heterogeneous. One of the doctors at my cancer center recently said that as soon as prognosis numbers are revised, they are outdated due to the new treatments that are now being approved and are on the horizon. After hearing that, maybe we could add another R to the equation - Relax.
Dottie K - I too had tried Imodium but it took me to the other extreme - an uncomfortable constipation. Praying for no gastrointestinal emergencies and scouting where the nearest restroom was were strategies I also used to deal with this issue. Fortunately, Welchol has eliminated this issue in my life.
Hi Steve,
Your column caught my eye this time with the three 'R's'. At the beginning of 2015, I was hoping for two R's all year – Running and Remission! After coming off a string of running injuries, as well as chemo and SCT, I just wanted a crack at another marathon. And of course continued remission. 2015 was magic for me, I did get my wish for running all year (4 marathons) and I've stayed in remission. I guess my third R is Realization of my dream to run Boston again. I'm training for it now.
The best of luck to you, may your health be the best it can be!
Kim T - Running four marathons in a year for a perfectly healthy person is an impressive accomplishment as far as I'm concerned. To be able to do so with this disease speaks volumes to your toughness, both physically and mentally. Good luck in your preparation for running Boston again and staying in remission.
Steve, your column made me think about when am I going to relapse? I didn't realize that eight years was the average time before relapse. I am at present suffering with pneumonia, this is the third bout of respiratory illness for me since November. It's been four years since my stem cell transplant, and I am not on any therapy, such as Revlimid. My oncologist feels that I should wait until I relapse. So many decisions and different treatments with different protocols. I am living in Canada, and from what I am reading, most oncologists in the States put their patients on Revlimid post stem cell transplant.
I too had to retire early, because of working in a hospital for the last thirty years, that I loved, mainly because of my compromised immune system. I am happy to be retired now, but it was hard at first to have a forced retirement because of my health. I loved being in the health field. You sound like you have made the right decision and I wish you the very best.
Diana - 8 years was the number I was given when first diagnosed as the average life expectancy after diagnosis, not time to relapse. And, as I noted in my response to PattyB, that number is probably outdated and has been extended due to new treatments that have been introduced recently and are on the horizon. If I can make it 4 years without relapse since my ASCT like you, I will be ecstatic. I have also suffered from numerous respiratory illnesses since being diagnosed and am interested to see if being retired and not coming into contact with hundreds of kids and teachers on a daily basis will reduce such illnesses. I sense that it will.