Mohr’s Myeloma Musings: Using Common Sense After A Stem Cell Transplant
In many of my previous columns, I have stipulated that I am very fortunate with what I have experienced so far with multiple myeloma.
My condition is far less serious than that of most of the other Beacon columnists and probably the vast majority of my readers. Every form of treatment I have received so far – radiation, induction therapy, and autologous stem cell transplantation – has been successful. Modern medicine had done its part for me.
Unfortunately, I have come to the conclusion that I have not done my part to build on those successes, particularly the success of the stem cell transplant. In fact, I have learned some tough lessons since November. During that time, I have suffered bouts of bronchitis and pneumonia, an allergic reaction (seborrheic dermatitis) to my pneumonia medication, and, lately, a nasty respiratory syncytial virus (RSV) infection.
Hindsight is almost always 20/20. Looking back, all of the above illnesses probably could have been avoided had I taken a more common sense approach to the fact that my immune system is compromised as a result of the stem cell transplant.
My first misstep was to rush back to work five days after being discharged from the hospital.
I misinterpreted the energy and adrenaline that I felt after coming home as a sign that I could resume all the activities and duties I had practiced pre-transplant. And while it initially felt great to be back in the thick of things, it only took me about a month to realize that I was not yet back to full strength, both physically and emotionally. I ignored those signs and pressed forward, immersed in the start of the new school year, new initiatives, and the challenges that come with being a school superintendent.
A far bigger mistake on my part was to not change my work habits. I naively thought I could continue to put in 16- to 18-hour workdays, with my day often starting at 4:00 a.m. checking roads and ending at 10:00 p.m. after attending board of education meetings, concerts, games, and other school activities.
Young children are known for being walking germ factories. Part of my daily routine is to visit our elementary school building. I visit classrooms, mingle with our students in the halls, and often eat lunch with them. It is probably safe to assume I come into direct contact with thousands of young children on a weekly basis.
Risky behavior for someone with a compromised immune system? Without question. But there is more.
My wife and I attended the Big 10 championship football game in Indianapolis in early December, the NCAA football semifinal game in New Orleans two weeks later, and the national championship game on January 12. Overall, I spent approximately 14 hours in the confined space of motor coach buses and airplanes. My wife begged me to wear a mask on the bus and planes.
I was too vain to do so.
Lack of common sense on my part has no doubt played a part in my going through a two-month period of ill health unlike any I have experienced before.
What can be learned from my lack of common sense as it relates to the immune system and life after a stem cell transplant?
First, never lose sight of the fact that it may take a great deal of time – in some cases between one and two years – for the immune system to recover after a stem cell transplant.
Second, don’t let your guard down and become complacent about protecting your compromised immune system. The fact that I felt so good shortly after my transplant created a false sense of security that led me to ignore the most basic precautions.
Don’t rush back to work after being sick. Make sure you are fully recovered. Adjust your work schedule as needed. Delegate duties to others if you are in a position to do so. Take time off when needed. Take precautions when exposing yourself to high-risk situations, such as large crowds.
My wife and I vowed that we would play as hard as we worked after I was diagnosed with multiple myeloma. We are committed to making memories with what time we have left together. Although watching the Buckeyes record upset wins over Wisconsin, Alabama, and then Oregon on their way to an improbable national championship was thrilling and created memories that will stay with us for quite some time, crisscrossing the country in motor coaches and airplanes probably had as much to do with my poor health as any one factor.
Transplant patients often claim a new birthday to celebrate the fact that they have been given a new life. There is no doubt I feel like I have a new lease on life after my successful transplant in June.
The privilege of that new lease on life brings with it responsibilities that include, at the bare minimum, using common sense when dealing with life after a stem cell transplant.
Hopefully, the lessons I have learned and described for you will prevent others from learning the hard way.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Great column and good advice. Hindsight is always 20-20!
Ron
Steve,
I, too, am a big Buckeye fan, but I live in Dallas, so going to the national championship game did not require all of the travel you experienced. The sickness will pass, but the memories will last forever! This was such an improbable season for them!
Your wife's advice about putting a mask on probably would have helped but not likely stopped the infections. I definitely would cut back on the long days and, even though you feel the need to, don't attend every after school function.
Ron
Good thoughts. Even now I'm very carefull 49 months after second SCT. Always be cognizant of other people around who may have something contagious. Keep active, keep moving, stay strong!
Yes, but wow, you're living your life to the max, and there's something to be said for that! None of us knows how many days are left. Like they say, balance – you can still knock'em dead, mask and all. The mask can say "up yours" – if you don't like it, tough, I'm just living my life the best I know how and I am going to do what I need to do to get the job done, whatever it takes, period!
Hi Steve, Hope you recover from these infections soon! I think that working with lots of children would mean that you would encounter lots of infections too. I am sure you will be glad to get your childhood vaccinations again. Were you able to start up with those at six months, or do you have to wait a year? I have read about both scenarios on the Beacon.
I don't know of course if this would be feasible for you, but if you could cut back on the long hours at work, you would have more time to rest and also to exercise, which might help your immune system.
Maybe one's immune system is never quite as strong as before the myeloma occurred, but one's blood counts do indicate the strength of one's WBC, platelets, neutrophils, which are an indication of that. Best wishes to you and your family!
Ron - The great thing about attending those three Buckeye victories is that multiple myeloma rarely entered into our conversations, quite the opposite from our normal life. One will never know what led to these illnesses, but the bottom line is that we stem cell transplant patients have to take a more cautious approach to life.
Gilbert - I like your advice of staying active, but we can't interpret staying active as working 16-hour days on end, which has been my mistake.
Daryl - Three years ago, my oncologist gave me the prognosis of 8–10 years. I won't get drawn into the debate of how accurate these prognoses are, but, regardless of how long I have left, I plan on taking advantage of opportunities for "making memories", a term I much prefer over "Bucket List."
Nancy - I have had some vaccinations. Your advice is good stuff and what I intend to follow from this point on.
Kathy - Good luck with your transplant. Despite what I have dealt with over the last two months, I have no reservations about having the transplant. If you can, take you time going back to work. I was nowhere near as strong as I thought I was. I too believe a great attitude + great medicine / medical team + good judgment is a sound formula for living with this disease. Moving forward, I plan on focusing more heavily on that last factor.
Enjoyed your post. Similar to you, I am relatively young and living my life as though the cancer is part of my life, but it will not control my life. I will be having my SCT in the next 6 to 8 weeks and was planning on a trip prior and going back to work ASAP. After reading your column, I will rethink that decision. I was diagnosed in August at Stage 3B. My serum beta-2 microglobulin was greater than 6 and today it is 0.1
While I believe the medicine was a big part of my recovery so far, I also think my attitude of NOT accepting this diagnosis as a death sentence played a factor. In my mind, I have another 25 to 30 years.
Your article has taught me that, while a great attitude is important, I should also use good judgment and not forget the importance of protecting my immune system. Thanks again.
First time I've responded to one of your columns; however, I love reading every one of them. Your "musings" this month definitely resonated with me. I was diagnosed with multiple myeloma in February 2014 after retiring from a large urban unified school district in southern California (18 years as a teacher and 10 years as a principal). Almost immediately, I began working as an educational consultant for low-performing districts in Louisiana. Headaches and fatigue were my travel partners as I flew across country, dealt with time changes, and long hours working with superintendents, teachers, and spending hours in classrooms, K-12. Routine lab tests revealed low white cell counts and a rise in protein. Just weeks into 2014, I was sent to a hematologist for further testing, and I learned I had multiple myeloma -- a cancer that was foreign to me.
My oncologist told me to delay resigning from my consultant work. However, physically, I did not have the energy required to meet the demands of this exciting work. The long hours in a confined airplane cabin caused me back pain and extreme fatigue. It was with a heavy heart that I made the phone call to inform the university of my condition and the need to take a leave. Like you, Steve, my passion is working with children, teachers, principals, and all others who seek to ensure that every child receives the best education possible.
Now, I struggle with finding my "purpose." While protecting my immune system has become a priority, the negative consequences are emotionally trying. Yes, I have been extremely fortunate in avoiding even the common cold; however, the challenge for me is finding a way to support others without jeopardizing my health. We have a local women's prison, and I attempted to work as a volunteer with inmates. The prison called upon learning of my multiple myeloma and quite simply informed me that the inmates carried all kinds of serious germs. Hence, I was "turned down."
Your insight is spot-on, and my suggestion is that, while you decide to make changes, or not, in your current lifestyle, I urge you to think about what you might do following your retirement. We are people-oriented, and that isn't exactly what the doctor ordered following a cancer that attacks our immune systems.
Keep up the great work, Steve! And, keep all of us posted on your new insights as we travel this road together.
Steve, thanks for another great column! We are big college football fans in our household, so I understand cheering on the Buckeyes victory! Believe me, though, your story is one that I'll be sharing with my husband if we have to choose between our beloved Texas A&M Aggies and the road to wellness.
Get better soon, and kudos to your wife. She sounds like a smart lady!
Patty - Thanks for sharing your story. I am seriously considering retiring at the end of 2015, but I am struggling with what to do after retiring. Based on my experiences of the last two months, I will definitely pick something that is not fraught with so many potentially risky environments for a transplant patient. Good luck in your battle with myeloma!
Tabitha - I hope to have more opportunities to see the Buckeyes compete for national championships, but will definitely think twice about seeing every postseason game. My wife is one smart lady and has been a selfless caregiver.
Steve - Thank you, thank you, thank you for your life-saving lessons learned. My husband just completed Cycle 8 of his initial chemotherapy and, like you, he has not been plagued with many adverse side effects. However, we let our guard down at Thanksgiving this past November going out to dinner, visiting with family, and feeling invincible. Shortly thereafter, he came down with pneumonia that required hospitalization. In retrospect, we should have been more careful and have learned our lesson from that experience. At the end of January, he will start his maintenance chemotherapy and we have vowed to be cautious with our outings, getting too close to others – especially children – and he will wear a mask when the situation warrants it.
Unlike you, my husband has delayed his stem cell transplant. In October, he underwent stem cell collection and those stem cells are being stored for future use. He was given Neupogen for six days and that experience produced some side effects like peripheral neuropathy, blood clots, and gout that he had not experienced before. As a consequence, he did not feel well and that may have contributed to getting sick a few weeks later.
Again, thank you for your contributions to the Beacon. We look forward to reading your column and learning how to live with multiple myeloma.
Steve,
My wife and I have read yours, and others, columns with a fair degree of wonderment. Even on the best of days over the last 2+ years, my energy levels have been about one quarter what they had been previously.
My doctors kept assuring me that my experience was not uncommon. Admittedly, I was under the eight ball from the start. I was admitted to the hospital in December of 2011. Two weeks later, I was diagnosed with a massive systemic infection, advanced MM with 12% healthy blood cells. None of my doctors expected me to live.
When I was released from the hospital, movement was excruciating. I weighed less than 126 lbs (57 kg) (I'm 6'1" / 1.85 m) and only moved from the sofa (which had become my new "home") to go to the bathroom. Taking a shower was a life-threatening ordeal. My wife did everything for me!
On my first RVD treatment, I threw up in the doctor's office and envisioned throttling the pharmacist who was intent on going over those drug and treatment brochures that I was certain had been produced by grade school children, all while I was in excruciating pain, vomiting, and feverish.
Despite my dire initial warnings and challenges, I responded miraculously well to the RVD and subsequent ASCT. Today I am cancer-related drug free. My CBC is within, or very near, normal. Yes, I still have the pesky "shadow" on the chromosome 17p gene, and yes, I can't even envision the kind of schedules many of you describe.
My world today is composed of TV, reading, surfing the Web and responding to emails (Myeloma Beacon being a common resource) -- every time I think I understand MM, I read a new post that illustrates how painfully little I actually do understand.
I have had to learn to limit my activities and exposure to others. Despite the fear that constantly lies in wait to overwhelm me, I am filled with gratitude to be alive, to be able to love and interact with my amazing wife, conversations with friends and family and, on occasion, to be an inspiration to others.
In my mind I plan on living at least another 10 years. I went from death's door to a 2 year life expectancy. Then, 1 year into that prognosis, it went to possibly 3 years. My doctors tell me that I have defied all their expectations and am doing dramatically better that any previous 17p they have ever treated -- especially given where I began.
Any of you who might be hoping for my secret to success are bound to be disappointed. I don't know. I do know I work hard to be grateful. I know my wife is a godsend and my family and friends have all been wonderful support. I know that I want to continue living and make plans with that in mind. At the same time, I'm realistic. I'm doing all I can to make things easier for my wife should my plans not unfold exactly as I've envisioned.
Best of Luck to all
And thanks for sharing!
Daniel and Sandy
Patty - You use the terms "let our guard down" and "feeling invincible", which are probably natural reactions to successful treatment experiences. Regardless of what type of treatment we go through with this disease, our immune systems are compromised and we have to keep that in mind, as your husband and I learned the hard way. I'm sorry to hear that the stem cell harvesting did not go well and hope that, if you proceed with the transplant, it goes well.
Daniel - WOW - what an unbelievable success story, thank you for sharing it. It is stories like yours that keep me optimistic of the future in living with this disease, no matter how difficult things may become. I too believe that gratitude is an important trait to live by.
Aloha Steve,
Excellent article!
This kind of experience sharing is exactly why I read the Beacon. We all need fewer statistical analysis and more examples of those who have gone before us. I will use your experience to help keep my own aspirations in check after I do the ASCT.
I too often forget that I am not invincible.
Aloha & Carpe Diem!
Tom
Steve - I'm almost 10 years out from my transplant, and I STILL worry about all of the things you just talked about! I've learned that I have to give all due respect to my multiple myeloma, even on days that I feel great! I know that she (MM) can take all of that away from me in a heart beat! Warrior on!
Hi Steve,
Thank you for your article. My partner is currently in hospital at Day 3 post transplant, so I am madly reading and re-reading trying to figure out what to expect and probably just generally looking for reassurance. So thanks for taking the time to share your experiences and advice. Be well.
Hi Steve, I'm 9 months post asct, and I thought I was bulletproof now. I live in central Texas and have sheep to look after. Sunday, I found out they were getting out, so I had to walk the perimeter of my 2 acre pasture, then fix the break. I got scratched up by the mesquite, but thought nothing of it. Tuesday, I had to visit my VA, which required another long walk. Due to arthritis, my knees are shot and I walk with a cane.
By Tuesday night, the scratches started hurting and got real hot. Itch cream helped and I started taking dapsone for the infection. That stopped it, now I feel like I broke a rib, and can't figure out why.
When I was told what I have, he said 2 to 7 years to go. I don't like folks telling me what to do, so I'm not going to die until I'm ready. I will start taking things easier, though.
Tom - I agree completely with your comments on The a Beacon. It is a daily source of information and inspiration to me.
Deb - I like your use of the term "due respect". That, combined with an acceptance of our "new normal," allows us to lead as normal a life as possible as we deal with an incurable disease.
H - I hope your partner's recovery goes well. Just remember he is in a marathon and not a sprint.
Bob - When first diagnosed nearly 3 years ago, I was told data suggested I would live 8 years. I don't agonize over that possible timeline and just hope to live as normal a life as the disease will allow, focusing on making memories with my family.
Thank you, Steve, for the article.
They advised me not to come near any child younger then 14 years during my first year after transplant, but I started traveling a half year after my ASCT, though I really tried to avoid small kids. For me, it felt as a necessity because all my family and lifelong friends are living in the Netherlands, as do my two oldest sons. My tactic is to plan not only the trip, but also a health setback during and after traveling.
For example, I am now 23 months after transplant. Last week, I traveled to San Francisco to visit my youngest, who studies at the San Francisco Art Institute. I went by plane with my husband and we rented a car special for me to save some energy. I still walked quit a bit along the beach and in the redwoods. It was a beautiful five-day trip. The results are that I slept 2 complete days after coming home in Wisconsin, and I also got some minor infections and an upset liver. Give me another week and I will be back on my new normal, 5 real active hours per day.
I am a farmer but, until this moment, still not able to be around my animals -- my lungs won't tolerate it even after 23 months post autologous stem cell transplant. So, yes, I do take chances, but I calculate the risks and the extra time to recover. I am very careful with my lungs. Looking back, my lungs and my GI tract took the biggest blow from the transplant. In the past 23 months, I made 5 big travels and went to an opera and a ballet. It all took a toll on me, but I have no regrets. I don't even take travel or cancellation insurance. My regular health insurance covers abroad, too, as long as procedures are not more expensive as in the US. I had to fly back twice while I was totally sick, but with some extra pills I managed.
I think it is a personal matter how much and what activities you can handle or you are willing to pay a setback for. Good luck to all in finding your own way in dealing and handling your new lifestyle.
Steve, your article was perfectly timed for us. My husband is about to start preparing for stem cell harvesting. He is a 'typical' male who tends to downplay things; I am somewhat of an over-cautious individual who takes things to the 'nth' degree. I have been telling him over and over again that he needs to be sensible about his activities post-transplant - given that it will be successful. He is Assistant Principal at a high school and is taking sick leave for about half of this year. My job will be to convince him he cannot expect to rock back at work after that and take up where he left off. He will need to be extra careful because of all the 'bugs' floating around a school environment. I will get him to read your article because I just know it will sink in, as it's penned by someone who is in his situation. Bless you, Steve.
Christel - Sounds like you have a sound approach to dealing with your situation - far more sound than mine has been! I agree with you that it is a personal matter and each individual has to determine what he/she can handle and then live your live to the fullest based on that. Sounds like you are living a full life!
Glynis - I think you are wise in being cautious to the "nth" degree. My wife is similar and I wish I had listened to her - after 38 years of marriage I should have known better! Knowing the demands on an assistant principal and all that your husband will be exposed to environmentally, he would be wise to take his time coming back and then controlling how much he is exposed to, and, most importantly, rest when rest is needed. I wish him and you well for his upcoming stem cell transplant!
Folks - My thoughts for those of you planning for life after a stem cell transplant:
I am three years on from my Ssem cell transplant in the UK, where it is now practice to do them as the first line treatment if the patient's constitution is up to it. I was a reasonably fit 66 at the time and a busy consultant in the construction industry. I asked the oncologist when I would be able to get back to work full time. He said that it would be very unlikely that I would be able to do a job that required full time attendance, but there was no reason why part time would not be possible. Didn't believe him, but he was right!
A stem cell transplant is fairly brutal. The main point to remember is that you lose your imumnity and the effect of all your lifetime inoculations. For me, the re-inoculation programme lasted 18 months. Don't plan to rush into contact situations in that period, or whatever the period specified for you is. (I was doing work from home after three months.) I re-started international holidays and cruising after completion of the re-inoculation programme.
Fortunately for me, I am currently free of the disease, and it has taken almost three years for gradual adjustment of the maintenance program for all blood counts to come up to normal, even so I have a mild antibiotic prophylactic for ear/nose/throat.
I feel that it has aged me over 5 years in three. I have so far had no major problems and am not limited in what I can do, so there is no reason not to hope for many years of good quality life after a transplant. Good luck to you all.
Steve,
Great column, as always. I spent 16 days in the hospital for my stem cell transplant, felt good after I got home, but took extra time (4 weeks) before I went back to work. My immune system still isn't 100 percent. Colds last longer, especially after the trip to New Orleans for the Sugar Bowl. Just now getting over it. Don't have a issue with the all the shots to prevent flu, pneumonia, and whatever else they give me -- just need one for the common cold.
Anyway, stay positive. Hopefully winter is on the downhill slide.
Great column. I wish I had known this back when I had my stem cell transplant. Like you, I overdid, because I was SO HAPPY and felt SO GOOD (or so I thought). I paid for it too.
Ugh. I'm 43 and just got my stage 1 diagnosis. I'm an avid runner and I have 3 kids. I'm worried things that made my life special might be gone. Will I be able to run after a transplant?
Kenny - if your experiences match mine, the things that make your life special can still remain special. You might have to make some adjustments in regards to intensity level and when you start doing things after your transplant, but I am doing everything (and more) that I did before the transplant. My advice - take it slow! Good luck!
Thank you, Steven for your article. The experiences in your article will hopefully save me from a lot of headaches and other problems. I intend to make a list of these potential medical problems before my own transplant so that I may put forth an effort to avoid them. But being a school superintendent suggests leadership. I can see why you rushed back to work. You are a leader with responsibility. I would have done the same thing, but not now, thanks to your article.
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