Mohr’s Myeloma Musings: Out With The Old, In With The New
I have never been one to make New Year’s resolutions. That may be due to the fact that I am an educator and that my life has centered around the school year, which runs from to August to June. As a result, my goals have usually been based on that calendar.
But, because multiple myeloma pretty much controlled and dominated every part of my life in 2014, I have resolved to do a number of things differently in 2015.
First, I am going to quit being a myeloma hypochondriac. I am approaching my sixtieth birthday, I was a three-sport athlete in high school, and I played college football. I would venture to say that most of the aches and pains I have experienced in the last year were due as much to those factors as any old myeloma-related lesions acting up (or new ones developing).
Having said that, I am resolved to take better care of myself. Two serious bronchial infections, a bout with pneumonia, and allergic reactions to the antibiotics prescribed for treating the pneumonia since my stem cell transplant in June proves that a macho approach of just gutting it out when even the faintest symptoms of a cold appear just won’t work anymore.
My doctor advised me to get in the best shape that I possibly could before my stem cell transplant last year. That is the only time I haven’t followed his advice to the letter, and I paid dearly for it. It was good advice then, and I’m certain it still applies now, so I resolve to exercise regularly.
Perhaps the toughest goal that I've set for myself in the New Year will be to quit being mentally preoccupied with having this disease. I found that, as the disease has progressed, it has increasingly dominated my thoughts. I had hoped for a mental respite after the successful stem cell transplant, but that has not been the case.
My wife and I recently decided at the last moment to travel to Indianapolis for the Big 10 college football championship game between Ohio State and Wisconsin. For the two days we were there, taking in everything involved with the Buckeyes dominating performance, I thought little of multiple myeloma. Finding enjoyable diversions such as this might be a useful strategy in reaching this goal.
I vow to accept compliments about how good I look without muttering under my breath “If only you knew how I really feel.”
I know that statements such as “You look good; you don’t look like you have cancer,” which I heard when I was first diagnosed, had good intentions. However, I never knew how to reply them.
I was at an even bigger loss for words when people told me "You really look good!" within days of my being discharged from the hospital after my stem cell transplant. I was completely bald, had no color, had lost 22 pounds, and I looked good? I must have really looked bad pre-transplant to earn such a compliment, because I thought I looked like a "walker" (zombie) on the TV show “Walking Dead.”
I hope to continue to not be concerned with what caused me to get this disease. In my mind, such thinking is wasted energy — water under the bridge, if you will.
My dad died from hemochromatosis, a rare blood disorder in which the body absorbs too much iron in the blood. Three months ago, my mom was diagnosed with adenoid cystic carcinoma, a rare cancer of the secretory glands. I think it is pretty safe to assume that environmental factors played very little role in my situation. Heredity seems to play a much larger factor.
I have written previously about my need to become more knowledgeable about multiple myeloma. I need to follow through on this resolution in 2015. Exciting things seem to be happening in myeloma research in regard to new treatments. Being armed with such knowledge as I move into the inevitable relapse stage of this disease is essential to my well-being.
I am going to be resolute in maintaining a gracious, thankful attitude. Unlike some, I will never say I am thankful for what I have experienced since being diagnosed with this terrible disease. While I have had many positive experiences, myeloma remains an incurable disease. And, given what one has to go through to enjoy whatever those positive experiences may be that result from being diagnosed with multiple myeloma, they simply are not worth it.
I will be thankful for being blessed with a great oncologist, a great medical team, a great cancer center, and family and friends. I resolve to show my appreciation to all of them whenever possible.
Finally, I resolve to practice what I preach. For decades, I have preached to my students, my players, my staff, my family, and anyone else who would listen that faith, family, and friends are all that really matters. With what time I have left, I need to walk the walk, rather than just talk the talk.
My goal when I first started as a columnist for The Beacon was to give the perspective of a newly diagnosed patient, in the hope that it might help others who were newly diagnosed. I hope that, in some small way during 2014, I have been able to do that.
My perspective will change in 2015. Unfortunately, I am no longer a myeloma “newbie,” but I nevertheless look forward to sharing my perspective in my monthly writings.
I wish everyone a Happy New Year with the hope that 2015 ushers in nothing but good news in the fight against multiple myeloma.
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 .
Hooray ... I am the first to read and comment on a great New Year item.
I am going to be resolute in maintaining a gracious, thankful attitude.
I liked this statement combined with faith, family and friends in the war against myeloma.
Sesha - 58 years - India
Good points and good advice. The mental battle of putting this aside and living now is a tough one at times. The sheer amount of information in this age is a blessing and a curse. Taking some time off from it all is definitely something I plan to do this year.
Steve,
I too agree with you, but it took me 2 more years to get to this point. And reading updates from other patients similar to me, I realize just how fortunate I am to be in "remission". I'm not on any medication except acyclovir, methadone, and vitamins. I don't have a lot of neuropathy or bone pain, but still have back issues and severe arthritis in my hips, so walking is difficult. But other than that, I'm doing really well when others are so sick! I often feel bad that I'm doing as well as I am. Yet this may all change due to some troubling biopsies done on my breast. The tissue report is confusing a cancer specialist, so I will have a larger, surgical biopsy done this week. But it is looking like I may have another cancer! But we caught it early!
So I resolved to enjoy the current health I am enjoying, deal with this new challenge, and be there for others who may need me. And not beat myself up for being well. Because it can all change so quickly!
Steve,
I feel your column is something I could have written for myself. It really hit close to home to me for in regard to what I experienced after my SCT. I too have learned that I cannot tough out infections anymore and need to go to urgent care for anything more than a common cold. If I do not, the infections just seem to linger forever. Not much can be done for viral infections, but often I get antibiotics, and they do work. It seems many other Beacon readers have said the same.
Analyzing every ache and pain to determine if it is myeloma or drug side effects is something I still do. It is easy to blame everything on myeloma or believe it is drug related, and I try to be objective and not be too quick to attribute everything to cancer. And often what does it really matter if it is or is not? I try to keep focused on looking for the most serious signs of myeloma disease and drug side effects and not dwell on every minor discomfort. I look to lab testing as the definitive indicator for where my myeloma is at.
It is hard not to think about myeloma every day when I have to grab a bottle of Revlimid and take a pill every morning, or when I feel the effects of dexamethasone through the week. But I have learned to get on with living my life and it does not sit in the back of my mind and consume my thoughts all day. I hope you will be able to do the same in 2015 and enjoy getting back to your normal self for a while. Best wishes,
Eric
Thanks for the thoughtful article, Steve! And happy birthday for your sixtieth, as it is approaching! In India, the sixtieth year is considered to be very auspicious, since it represents a full cycle of maturity. Even though now, life expectancies are longer than before, I remember celebrating my sixtieth with gratitude also, almost four years ago. I was very thankful to have survived having myeloma!
In regards to aches and pains, I really think that all the bisphosphonate treatments I took (Aredia) have helped me beyond what one would expect. I used to have very sore knees, and had to get physiotherapy and give up jogging, but now they are just fine! While some of my friends are getting knee and hip replacements, I am not. Hopefully it continues on in this vein, and hope the same for you too.
I try not to 'obsess', and, as is the case with Eric, am also back on chemotherapy. So one has to be really 'mindful' of myeloma, taking one's meds, being careful to avoid infections. But one would miss out on a lot of the other, good things in life if one were continually worrying. I have volunteer commitments now in regards to myeloma, which I find to be interesting, but not everyone would have the time to take that up, I am sure.
Best wishes for the upcoming year.
Hey Steve,
Here's to you CRUSHING myeloma the way Ohio State ABSOLUTELY CRUSHED Wisconsin!!
Thanks for the article.
Best,
Steve
Southwestern Ohio
Sesha - Thank you for your kind comments. It is amazing that in today's world those of us with the same afflictions from all over the world can share our thoughts and experience almost instantly.
Mark - Your point about the volume of information available being a blessing and a curse is so spot on. Having The Beacon, which is without question one of the biggest blessing we have, makes it tough for me not to be preoccupied with mm, because I read it every day -- often several times a day. It does not matter what I read -- columns, blogs, the forum -- I relate everything I read to my own experiences.
Mary - Our current situations are very similar. The only myeloma medication I am on now is acyclovir. Best of luck with your new "challenge". I cannot agree more that we need to enjoy life now due to the fact that it can change so quickly.
Eric - I always enjoy reading your responses to my and other columns, as I always seem to gain something from them. Thank you!
Nancy - I will have to look into your advice on aches and pains as I have noticed since my stem cell transplant that I have a lot of knee pain in both knees when going up and down stairs. Thanks for the advice.
Steve - How about that semi final win?!?! I was there and can say that mm did not cross my mind from 8:30 - 12:30.
Hi Steve
Thank you for your article dated January 5, 2015. All we can do is live our lives to the fullest! ESPN sports analyst Stuart Scott passed Sunday, although not of multiple myeloma, but cancer none the less. He did not let his diagnosis get in the way of him living. We can not let the diagnosis of multiple myeloma control our every thought, no "pity parties" for us.
I learned early on to just say "thank you" when people would say you look good. I thought the same way as you, "if you only knew", or "my insides don't match my outside."
I am a big football fan and went to the Cowboys vs. Redskins game at FedEx Field. Some could not believe it. I was tired because of a cold and knew I would not make it the whole game. I called my husband at halftime to come get me. For the time I was there, I had so much fun, my mind completely focused on the game. I take the motto, "Live, Love and Laugh" to heart and look forward to doing things that I enjoy.
God bless you and your family,
Amelia White
Multiple Myeloma Survivor
Hi Steve,
Thanks for your column and I concur with all you say. Myeloma is a dreadful, debilitating and psychologicallydemanding cancer.
I had an appalling time during my first treatment CTD [cyclophosphamide, thalidomide, and dexamethasone].
I had to stop dex after 3 cycles and could not tolerate the full dose of thalidomide due to peripheral neuropathy, tremors, and bowel upset and had to take sertraline (Zoloft) (150 mg) daily, and still am, which helped to keep me on an even keel. Due to all these issues, it was decided not to have an ASCT. I plateaued at a paraprotein of around 13 g/L [1.3 g/dL], and it was felt my husband and I needed a break from treatment and we agreed to it and I was off treatment for 16 months. I was physically below par and I found it trying to get through the day and I was avoiding company, etc. I was not myself at all. Slowly I got stronger and was greatly improved prior to commencing Velcade. It was a much better experience and I have completed 5 cycles and possibly one more.
I have had a good partial response; paraprotein at 12 g/L [1.2 g/dL] and FLC down to 55.
So familiar ... My wife has MM, I know about the abundance of information, one's mind set, and health concerns. etc. Being an Oregon fan, I can't let the Ohio State comments pass ... just don't get your hopes up too much!!
Elizabeth, I have had a similar response such as you in my fight against multiple myeloma. The first 2 weeks, they had me on Velcade, Revlimid, and dexamethesone, and I about died. They took me in ambulance and I had a near-death experience. Too much chemo for my little body.
Then I told my oncologist that I wanted quality of life. The next following 6 months I now only get a shot of the Velcade chemo and am now almost in remission, as my protein number went from 5150 to 40. The power of prayer! The doctors are amazed. My organs are perfect, just prior bone damage to watch out for. I already had 2 fractures. Doing wonderful now. Doctor wants me to be on Velcade for 4 months yet for sure. Then hoping it will stay away years instead of just months. Velcade is pretty tolerable, don't even get nauseated.
Be an advocate for your care. I am so happy. God has given me a miracle just to be here yet. Life -- it's a gift whether on earth or in heaven. God's peace to all of you in 2015, my fellow myeloma patients!
Amelia - Stuart Scott is definitely a profile in courage and a wonderful example for all to follow regardless of what life threatening disease one has. Embracing whatever task we are involved in doesn't allow mm to creep into our thoughts.
Elizabeth - While my reaction to induction therapy was not as severe as yours, one of the reasons I decided to have the stem cell transplant was the chance that I could be off those drugs for an extended period of time, or, at the least, at a much lower dose. To borrow a cliche, being "drug free" for 8 months has been wonderful.
Daryl - Being a coach for 29 years taught me never to make predictions or get too cocky. Let's just say that I am cautiously optimistic! This Buckeye wishes your wife well.
Pammy Jo - Sorry to hear that you experience with treatment has been so rough, but I am glad that things have turned for the better. This disease is so individualistic in how each person responds to it that we have to be advocates for our care.
Steve,
Best of luck on your resolutions! I just wanted to note that your father's condition was neither a blood disease nor rare. Hereditary hemochromatosis is the most common genetic disorder affecting people of Northern European descent and these same genes are also linked to increased risk for multiple myeloma. In America, 1 in 8 or 10 carry one gene variant, and 1 in 200 have both genes affected. In Ireland, the frequency is roughly double what it is in America. Since it is not a blood disorder, people who are otherwise healthy can protect themselves from many symptoms by donating blood.
I hope you continue to improve your health and get back to your athletic conditioning!
Rick
Rick - Thank you for the feedback regarding hemochromatosis. I should have been more precise, and my statement might better have read "a rarely diagnosed condition (at least that is what his doctors told us 18 years ago) where the body absorbs too much iron, but which, in my dad, ironically manifested itself in blood that was too rich in iron."
It is interesting that you say "people who are otherwise healthy can protect themselves from many symptoms by donating blood," as me and my siblings, as potential carriers, were all advised not to give blood.
I have been reading all these posts and am just amazed at the wonderful people giving hope.
I am so petrified as recently this November they have diagnosed me with temporal arteritis, found due to headaches I was having the prior 6 weeks. With further blood tests, they have now found an elevated monoclonal protein count and also osteopania, which is now requiring consultation with the MM specialist. I have just completed the blood and urine work and additional skeletel xrays that go with it. I have my meeting / consult with the doctor scheduled, and am told he will decide on that day if I need the bone marrow aspiration. Appointment is scheduled for January 14, 2015, next Wednesday.
I cannot stop thinking about this terrible disease and, if I have it, how I will manage. I am 56 with two girls, 19 and 22, and a husband. I know I will have family support since I also have my parents alive and brother and sister. But I am trying so hard to hold it together for this week waiting.
Thanks -- just wanted to reach out to you all.
Cheryl, I'm reminded of the Doris Day song," Que Sera Sera, whatever will be, will be". Worry is counterproductive, look to the future, keep fighting. Learn to accept and deal with all the aches and pains that come with our disease. I'm glad you have a support team; lean on them when necessary. And look for the good, ignore the bad.
Hi Steven,
18 years ago would have been 1996. In 2001, the National Institute of Health declared blood from people with the genes for hereditary hemochromatosis as safe for donation to the general blood supply. It is actually encouraged, since our ranks could prevent there ever being a shortage. However, the Red Cross still does not accept us (except in Portland, OR). The FDA provides a list of the smaller centers that will accept our blood.
Unfortunately, you are all too correct that it is a rarely diagnosed condition. It is so important for people with cancers, arthritis, or diabetes to be aware of it, since it impacts those three so directly. With cancers, these genes have been shown to protect the cancer cells (by increasing their cholesterol and protecting them from cell death), in addition to the high iron stores potentially being a cause of cancer themselves.
My dad died of hemochromatosis as well in 2000. But no one told me anything about it and I was not diagnosed myself until 2004. It should also be noted that carriers can also overload iron, which is presumed to be due to the impact of other gene variants that were not tested.
Thank you for the opportunity to discuss this. I feel that it is important that the myeloma community is aware that these genes increase the likelihood of having myeloma along with many other forms of cancer.
Rick
Cheryl,
You might ask your doctor for a prescription for something like Ativan, a mild sedative, to help you relax through this difficult time of waiting. Many oncologists will prescribe it, particularly for anxiety in general and in particular as sedation for a BMB.
Keep us posted and all the best!
Steve
Cheryl - Our two situations are very similar. I was 56 years old at diagnosis. My two children were 17 and 21 when I was diagnosed. Like you, and most diagnosed with this disease, the diagnosis came as a complete surprise. I feel fortunate that I was diagnosed with mm when my kids were young adults, rather than children or adolescents, as they have the maturity to understand the situation. I drew great strength from how they handled everything. I can't imagine what it would be like knowing you have an incurable disease with young children.
You are in such a great situation with having a strong support group. Take advantage of them. Don't agonize over the bone marrow biopsy (bone marrow aspiration). I know there are horror stories out there on bone marrow biopsies, but I have had 3 of them and I have had far worse pain at dental visits. The waiting is the worst part and I have no advice on how to deal with that. I think once you have a treatment plan in place that your whole attitude and perspective will change. Bob McDonald offers great advice. Good luck!
Rick - I have learned more from you on this disease than I did from my dad's doctors. I had no idea that it and mm could be linked. Thank you! This is just further evidence of what a wonderful site the Myeloma Beacon is!
Steve - Great article, as always. Yes, winter is here, and for me it's time for colds. For me, I have been lucky so far. It's Vicks and NyQuil, takes about 2 weeks and I start getting better, but as time passes it redevelops. I will be glad for spring and summer.
Don't know if you have seen it yet, but the new cancer hospital is wonderful. My wife and I volunteered during the open houses.
Jack - Thank you. I told my wife that this will give us an excuse to move to a warm weather location when we retire. I was at The James for my 6 month check up within days after they moved into the new facility. It is something else. What is most impressive to me, though, is what I call the "culture of care" that is so evident in everyone you deal with there. I wondered if that would change when they moved to the new facility. Not surprisingly, it had not.
Just shows how important the "MM Family" becomes – Mr. Mohr, you were the first person I thought of with the outcome of the game last night. Congrats to the Ohio State Buckeyes and their fans.
I became aware of your column just recently and have read all your postings with great interest. My husband was diagnosed in September. He has just finished 4 cycles of Velcade / Cytoxan / dex and yesterday started all the pre-op testing for his ASCT, which will likely take place in early March.
There are so many questions I could ask, but one point I noticed that stuck with me in particular I'm going to inquire about. You mentioned that you and your wife had made the decision that there were 3 or 4 days that you didn't want her at the hospital. How did you pick which ones?
We live in Eastern Canada and are 75 miles from the hospital Bill will be at. I'm concerned about being that far away for a period of time, but can understand not being present at the lowest point (I think).
Nadine - It certainly was a great night for the Buckeye nation last night. My wife and I were at the game, an unbelievable experience!
Regarding your question ... As I recall, we picked a day early in the process, before things got too intense, and then pretty much played it by ear. More importantly, there were many days where she didn't stay the entire day and she was able to go home, sleep in her own bed, check on the kids, and get some work done in the office.
Good luck to your husband. I hope his experience and results with the transplant are as good as what mine have been.
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