Mohr’s Myeloma Musings: Reflections
During a recent conversation I had with a friend, he unexpectedly asked me what has been the worst part of having multiple myeloma. Fortunately, his cell phone rang before I could answer the question. It saved me from giving an answer to a question I have never given much thought to.
At various times since then, I have reflected on what has been the worst aspect of living with multiple myeloma.
While I consider myself a reflective person, thinking back on past experiences of living with this disease is something I have avoided. My attitude has been to look forward, attempting to live as normal a life as possible.
For the most part, I have been able to do that because every treatment regimen I have undergone so far has been successful. I find it foolhardy to try and think ahead and anticipate what will happen next with this disease and plot a course of action to deal with each possible scenario.
As I pondered my friend's question, though, I wondered if he wanted to know what the worst aspect was physically, mentally, or emotionally.
Physically, this is an easy answer. I have stated several times in previous columns that the physical challenges I have experienced with multiple myeloma pale in comparison to what many suffer from with this disease. This was reinforced after I recently read Tom Brokaw's book, "A Good Life Interrupted," and learned of the debilitating back pain he endured. I have suffered nothing physically that comes close to compare to that.
Having said that, there is nothing that I have been through physically that compares to the first eight days of my autologous stem cell transplant experience in June 2014. I went in with a macho attitude of being able to handle anything that the procedure involved. I brazenly told my doctor beforehand that I would set a record (11 days) for the shortest hospital stay at my cancer center. Looking back, I now know what was behind his smile at my boastful prediction.
On about the fifth day I remember thinking that, if it was time for me to meet my maker, I was fully prepared to go. I was discharged after 16 days, the average stay for a patient undergoing a stem cell transplant.
Complete recovery from the physical effects of the stem cell transplant has been slower than I anticipated. It wasn't until this past May that I no longer had bouts of fatigue, and that the neuropathy subsided to barely being noticeable. I am thankful that I now feel better than I have since being diagnosed three and a half years ago.
While the worst of the physical effects of multiple myeloma are minimal and can be managed, such is not the case mentally and emotionally.
Mentally, my cognitive skills and abilities have not seen the recovery from the fog of chemo brain that I suffered during induction therapy and the stem cell transplant. I’m struggling to recall names and facts, deliver key points in public speaking engagements, focus on details of tasks, and generally concentrate for long periods of time. There is no history of dementia in my family, so I vainly blame it on the 10 mg of Revlimid (lenalidomide) I take daily as part of my maintenance therapy.
Emotionally, since being diagnosed with multiple myeloma, I have become far more concerned about what others think of me. This is a complete change in thinking for me. Through 29 years as a high school basketball coach and six years as a school district superintendent before being diagnosed with myeloma, I developed a pretty thick skin and could not afford to be overly concerned about what others thought of me. During the last three and half years, however, I have often wondered if others see me as less than whole, an invalid, contaminated. These questions of self-worth were reinforced when I learned that some of my staff, with the best of intentions, chose not to come to me as they should have to address issues because of what I was going through early in my treatment.
So, in summary, the answer to my friend’s simple, direct question is easy. For me, the worst part of living with multiple myeloma is the mental aspect, the decline in my cognitive skills.
While reflecting on my past and pondering my future, I need to point out that I’m doing far better now than I did before my diagnosis three and a half years ago. I am hopeful I will become a statistical exception to the prognosis of 8 to 10 years I was given then.
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 .
Such a great article Steve. Our journey through this multiple myeloma challenge sounds so eerily similar. My tandem stem cell transplants, though, went actually very smooth. The worst I had was an aversion to the smell of food from the melphalan. So I lost a lot of weight during both of those procedures.
I am now in CR and on my latest visit 3 weeks ago to my myeloma specialist, he asked me how I have been really feeling. He wanted the truth and not the general answer he hears from most people – doing OK. I told him that I am feeling better now than since I was diagnosed 2 years ago and, if I didn't know that I had this disease, I wouldn't know it. I am back to working full time at a busy pharmacy especially to keep my health insurance for all these bills. Otherwise, like you say, names sometimes take me a little longer to focus in on.
I elected to go on maintenance since my specialist says it gives us the best chance for long-term survival till a cure can be found. And from what my specialist told me, they are getting closer all the time.
Live long.
Randy - Wow, tandem stem cell transplants. You are much tougher than I am. I'm not sure I could do another one, even though, like you, I am now feeling better physically than I have since being diagnosed. I have never discussed the mental/cognitive issues with my doctor before, but will do so at my next 3-month check up in mid September. I hope your good situation continues.
"My attitude has been to look forward, attempting to live as normal a life as possible."
Steve, those words show the right attitude. Looking forward, living each day as normal as possible, and not worrying about the future has gotten me and my caring wife through nearly 5 years since diagnosis. To combat the side effects of Revlimid (25 mg daily for 2+ years), I pursue natural treatments – vitamins, minerals, enzymes, etc – with the help of a naturopathic doctor, who is also an MD. These work well for me, as the only side effect from the Revlimid is itchy skin every one and again. When that happens, I skip a day or two, and things normalize. Oncologist agrees with this process.
Many of the supplements I take can be found on in articles at the Myeloma Beacon.
I hope you have continued success, stay mentally strong, and don't worry about what people think. My father told me years ago to only worry about what people think if they are paying your rent. You can get your thick skin back.
Thank you Steve. I've never spoken to anybody about the thought blocking effects of mm, or the drugs we take to combat this disease. Like you I've been concerned that friends and family might notice and think 'he's slipping!' You're brave to discuss these concerns in a public forum writing with a disarming openness that helps all of us.
Steve,
I know exactly how you feel. One of the best things about myeloma is the mental aspects. The goofy things that I do lighten up the conversations and make friends more comfortable. When friends ask how I am - it's fun to tell them the stupid things that I've done lately, like - sign the front of a birthday card - try to start a motorcycle by pressing the turn signal button - during a tornado warning wondering what the beeps were coming from my digital thermometer - figuring out why insurance was responsible for a bill and drawing a blank for 8 seconds until you remember why - remembering that you had the exact same conversation with the insurance company about 5 months ago - and recalling "A lucky life interrupted' as 'A good life interrupted".
It's entertaining to others, that's something to enjoy
Eric - Thanks for the advice. I have not considered natural treatments, but perhaps I will moving forward. They seem to work well for many others. The only constant physical side effect I have from Revlimid now is itching, which is limited to my face and neck area. Interestingly, there is no rash to be seen where it itches.
Craig - Poor proofreading on my part in regards to the book! The sad thing is that the book is still lying on my bedside stand and I've looked at it every day for the last two weeks. I guess that just goes to show how the struggle is mentally at times. My family does find my mental lapses entertaining. Maybe I need to quit taking myself so seriously and just go with the flow as you do!
Steve,
Don't get me wrong, I am very frustrated during a mental lockup. The other day I spent ten minutes trying to figure out the following quote before asking somebody to help me out. Granted I was locked into thinking sexual, but the quote was "If life gives you melons, you might be dyslexic". My friend told me, you know "when life gives you lemons", yeah I know that but this says, "When life gives you melons". Oh ... I get it now.
I could go on and on.
Great honest article. My memory has been sharper then those who don't suffer from this. Funny, though I always still feel like I'm slipping even though I'm not. LOL. Fatigue I fully understand, especially late afternoon
Frank - Thank you for your kind words. I like the words "thought blocking effects" much better than the terms I use. It seems less permanent and not as serious.
Craig - I too could go on and on. Fortunately, most of the time my family and close friends can fill in the blanks when I struggle with a key word or name. It's when I'm with strangers that there is that awkward silence accompanied by a quizzical look that is embarrassing and frustrating.
Steven - I appreciate your compliment and your ability to take a humorous approach to this!
My joke to my friends and family is that I don't know if the memory lapses are from the Revlimid, or just a "side effect" of being 68 years old. LOL. We ALL want to avoid the aging process, which seems to be inevitable. However, I am believing that the excellent genes passed on by both my grandmother, who passed at almost 90 years, and my Dad, who passed at 95, both very cognitive to the end, will be my "inheritance" – something money can't buy.
Am wondering whether any of you are taking dexamethasone in conjunction with your Revlimid as a maintenance treatment. Even though I am well aware how damaging it can be on the body, I enjoy the "high" of being able to actually think like a 40 year old for several days after my weekly dose. I have learned to utilize those times to do all my book work, and any communication connected with my home-based business.
As for the future, I have set one principal goal, which is the promise to my children that I will not leave "loose ends" for them to have to deal with in the event of my passing. While I fully intend to live another 10 years, I am sorting through all those "stored possessions" Now!, so no one has to go through them later and decide what to do with them. I consider that an act of love toward my family.
I like your attitude Steve. For me staying positive is the best thing and looking at the future in a normal fashion.
I've been in CR since Oct 2010. Dx'd Aug 2009. I'm one of those ppl that lives on narcotic meds because of lots of broken bones. Pain all the time.
None of us are perfect and we never know when the cancer will return, but when they told me 6 months to a year, and that was 6 yrs ago, I feel very lucky that someone beyond has kept me going. I have way to much to do before I head to that next life.
Marsha - I too often wonder if memory lapses are the side effects of Revlimid or approaching 60 years old. I look at it as I have two good excuses now. I am not on dex and thankfully so. I have been an insomniac for most of my adult life and the combination of Revlimid and dex during induction therapy was not pleasant in regards to a consistent sleep pattern. Although I do have to admit, I did enjoy the surge of energy the dex gave me for 36 hours.
Tricia - I am sorry to hear the mm has resulted in you living in constant pain. I have so much admiration for those who deal with mm induced pain and yet still have a positive attitude. To think that you were given 6 months to live and 6 years later your are in CR is encouraging to us all!
Steve
Thank you for such a heartfelt article. What a tough question and one very difficult to answer. I asked my husband the same question and his response was very similar to yours. Like you, the physical effects of the multiple myeloma have not been severe like Tom Brokaw's snd many of the physicsl effects are really side effects from the chemotherapy. My husband said that getting beyond the mental issues is the most difficult. Accepting that his future has changed and not in a way he intended is devastating. We had just retired when we found out that he had multiple myeloma. He thinks that it would be easier to accept getting hit by a car than living with the uncertainty of multiple myeloma.
With all that being said, the support we get from our medical team, our family and the multiple myeloma community has been awesome. We both read the Myeloma Beacon as soon as it arrives in our Inbox. Friends and family members send us information on the latest research and treatment options. We have attended several seminars sponsored by the myeloma community. All of this combines to ease our mental distress and make our myeloma journey palatable.
Steve,
My family says that I am starting to talk like the "Duke," John Wayne. All you Duke fans will understand his slow and deliberate drawl and pauses as he speaks. In his case, more likely part of his acting style. In my case, a pause till my brain can catch up and figure out what I want to say. Lol. This stuff is real but can be funny at times if we don't take it too seriously!
Patty B - You are right, your husband's situation and mine are very similar. Like your husband, one of the things that bothers me most is the potential loss of control of my future, which is dependent entirely on the progression of the disease. What comforts me most is the unbelievable care I get from my medical team and the support of family and friends.
Randy "Duke" Strode - You give great advice, not taking ourselves too seriously. I remember reading the comics as a kid and "Laughter is The Best Medicine" was one of my favorites. We all need to learn to laugh at ourselves in those less physical threatening situations we encounter with this disease.
Nice article Steve. I find the mental part of myeloma has been the toughest challenge. How do I view the future, present, and past are all questions I struggle with.