Mohr’s Myeloma Musings: The Fog Of Myeloma
One of my responsibilities as a school superintendent is to check the roads during inclement weather to determine whether school should be delayed or closed.
During a recent early-morning road check through thick, patchy fog, I couldn't help but think that making decisions about delaying or closing school due to fog is similar to living a life with multiple myeloma.
The arrival of fog is often completely unexpected and, unlike with snow and ice storms, I rarely receive a weather warning about approaching fog.
Similarly, many of us had never heard of myeloma until we received the awful diagnosis. More often than not, we were diagnosed with the disease after being wrongly diagnosed and treated for another illness.
Because foggy mornings are so unpredictable in our area from the end of August to the end of September, I am on edge in the mornings, rising at 4:00 a.m. every day so that I am not surprised later to find dense fog covering the district.
Being on edge is a common state of mind when living with multiple myeloma. The days leading up to a three-month check-up are agonizing. Worse yet are the days after that check-up, when you are waiting for the lab results to be released.
We turn into myeloma hypochondriacs as every backache or sore limb makes us wonder if new bone lesions are developing. A slow recovery from the common cold leads us to think that our immune system has been completely compromised by myeloma.
In the part of north central Ohio where I live, not only are foggy conditions unexpected, but they also are unpredictable once they arrive. The fog comes and goes without any explanation. Conditions appear to be improving, lulling me into a sense of complacency that the fog is lifting. However, in a matter of minutes, the fog can be thicker than it has been all morning. Conventional wisdom says that the rising sun burns away the fog. This is not always so, as the fog often thickens at sunrise.
Living with myeloma causes us to expect the unpredictable. Months, and many times years, of positive results are shattered by a rise in the M-spike. Conventional wisdom would suggest that months of induction therapy followed by a stem cell transplant would put the disease into permanent remission. We all know that is not the case.
Making the decision to delay or close school is solely my decision as superintendent. I made the mistake early in my career as a superintendent to involve others in this process. Their idea of what constituted dangerous road conditions did not match mine, and after several questionable decisions were made, I relieved them of their responsibility. I now make the call alone. After all, it will be my name on the lawsuit if anyone gets injured due to not delaying or closing school.
It is the same with the multitude of decisions we have to make with the treatment of myeloma. Doctors recommend treatments. Family and friends weigh in with their opinions. More opinions are gathered from various sources that show a wide variety of opinions and experiences on the various treatments. But, when all is said and done, the final decision is ours, or it should be, because we assume all of the risks and, hopefully, all of the benefits of the treatments.
Fog can be deadly, as our school district found out more than 20 years ago when foggy conditions led to a traffic fatality involving a school bus. Indecision, or a wrong decision, caused by the unpredictability of fog played a major part in this tragedy.
Regardless of what term we use to describe multiple myeloma – incurable, terminal, or treatable – the cold reality is that multiple myeloma is deadly, and indecision makes it even more so. I learned recently from a friend of mine that his wife, who had multiple myeloma, chose to ignore the disease and died in a few short years, even though she was diagnosed at a relatively young age (in her mid-30s). Indecision, or a wrong decision, hastened her death.
Fog can cloud one's judgment. It is easy to become completely disoriented while driving in fog. More than once, I have become completely lost on roads that I travel every day while checking roads in dense fog.
As I look back at my condition prior to the stem cell transplant, "cloudy" and "disoriented" are two adjectives that best described my condition.
It seems that, once fog clears, the sun appears to shine brighter than normal. I am sure it’s due to the stark contrast to the dreariness associated with the earlier overhanging fog. For me as superintendent, the relief that the dangerous road conditions have passed may also play an important role in why I am always struck by the brightness of the sunshine once the fog has cleared.
Effective treatments provide us myeloma patients with our sunny days, regardless of the kind of remission we achieve. Personally, I am currently enjoying bright, sunny days as I continue to experience pain-free and fatigue-free days since my stem cell transplant in mid-June.
I know that, despite how sunny things are for me right now, it is very likely that foggy days lie ahead. Since that currently is the fate for most of us with this disease, we need to make the most of our sunny days.
Former Notre Dame football coach Lou Holtz used the acronym WIN ("What's Important Now") to guide his players and assistant coaches. By determining and focusing on "What's Important Now," Holtz would say, clarity and purpose are established during times of pressure and challenge.
Nothing is more challenging or pressing than the quality of life and/or life and death decisions we make while living with multiple myeloma.
Since hearing Coach Holtz speak more than a month ago, I have tried to follow his advice.
Determining “What’s Important Now” has certainly made the current sunny days brighter and life much simpler for me.
I hope that I can remember Coach Holtz’s advice when the inevitable relapse occurs.
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 .
WIN - What is important now and quality of life with that concept is wonderful. This is truly a GEM for MM . thanks and good luck
Steve
A quote from Matthew 6:34, helped me greatly during the foggy periods of myeloma diagnosis and treatments. "So do not worry about tomorrow: tomorrow will take care of itself. Each day has enough trouble of its own." Having this attitude allows us to deal with what is important right now. None of us can see the future clearly, never mind take action to solve all the issues that may or may not arise.
Your analogy of myeloma being like a fog that moves in and affects our lives significantly is a good one. The fog eventually clears and sunny periods approach. Thanks for the fine illustration and for the new definition for WIN.
Thanks Steve for a thoughtful column. I also like the acronym 'WIN'. The 'fog' of myeloma is quite real, and I make lists all the time, and then try to prioritize what to do from those. Writing lists helps me to remember what I need to do. I found a good walk would usually help me to sort out what is most important on my endless 'to do ' lists, and also help in thinking about the ongoing issues of myeloma concerns.
Sesha - I'm normally not into acronyms because so many of them lack real substance, but I am a big admirer of Lou Holtz because he is so down to earth and always provides simple, yet substantive, food for thought.
Eric - Can't argue with the Good Book! It is so easy with this disease to be preoccupied with the future. Because the future is so unclear it is so important to enjoy and make the most of those sunny days. I am not advocating a Bucket List, but rather identifying in the short term those things that REALLY make a difference and are a priority in our lives.
Nancy - I am a "list guy" at work but have never been one with my personal/family life. Having said that, my wife and I now sit down every week and plan out those things that are important and meaningful for us to do. Prior to my stem cell transplant, we never did this as we let events (sadly, mostly work related) control us.
This is my first visit to the Myeloma Beacon after searching the web for information on multiple myeloma. My husband was diagnosed with the disease a few months ago and is in the middle of his chemotherapy treatments. You are so correct on several different levels when you compare experiencing fog and living with myeloma. It is through columns like yours and comments from your readers that we will begin to understand what the future has in store for us. We have just recently begun to experience WIN. It is truly a different way of living when everything you do or want to do is predicated on that principle. Thank you for your insight and for my introduction into caring for someone with multiple myeloma.
My husband was just diagnosed with primary amyloidosis. His doctor was explaining this disease to us and I kept hearing multiple myeloma. He said the next step is my husband would have to see a hematologist. Light chain, multiple myeloma, primary, etc. All new to us. I'm not sure yet how this all fits together, but sure I will learn. Am glad to have found this site early.
Patty and Jodie - In my humble, biased opinion, you won't find a better source of information than The Myeloma Beacon. I too found it shortly after I was diagnosed with multiple myeloma, and just about everything I know about the disease comes from The Beacon. I read the columns, the forum, and the news articles daily and always gain something from them.
Best of luck to your husbands in their battle with this disease, and best wishes for strength in your caring for them.
I will be visiting the Beacon often, as I was diagnosed this past week with multiple myeloma. I am fortunate to have a strong support group of family & friends to help me along the way, but I know I have a very tough road ahead of me. Thank you for writing such a great story about the "fog" of myeloma. I believe I'm in the fog right now, with the new diagnosis, getting a second opinion, and the decisions that need to be made for beginning my chemo treatments.
Steve, great article again. You are so right. Once you receive the news of having mm, the fog very heavy at first rolls in, it lifts a little with the positive response to treatment, and lifts more after ASCT, the sun started to become bright a year ago this month when test results showed no myeloma proteins were found, and has been beautiful since my last bone marrow biopsy test results were clear, and it's been bright and sunny ever since.
My wife and I do more together now and trying to reduce as much stress as possible is a plus for people with any type of cancer.
Stay well and positive and may the sun always shine brightly for you for many years.
Cheryl - You are fortunate to have a strong support group of family and friends. For me, the fog seemed particularly thick at the stage you are now at. Dealing with the initial shock of being diagnosed, learning about the disease, and contemplating treatment options made it so. I found my support group grew as I progressed through this journey, which helped clear the fog. So, too, did getting started on a treatment regimen and seeing positive results from that treatment. Best wishes for sunny days soon!
Jack - I am thankful for the 180 degree change in my condition since the ASCT but also mindful of the fact that, with this disease, nothing is to be taken for granted. I am looking forward to a 3 month check up in two weeks and hoping for the same results you have experienced. Like you, I am making the most of this sunny period by making more time for family and friends. I hope the sun continues to shine for you!
I like this "WIN" !! I just completed my first 4 cycles of induction chemo VRD and feel like I am back in the FOG facing the stem cell transplant process. WIN will definitely help me face the One Day at a Time as I go through this. Mine should start in mid October.
Thanks,
Cheryl
Cheryl T - I didn't realize what a fog I was in due to the 7 cycles of Revlimid and dex that I went through until after my stem cell transplant. I hope you have a similar result from your ASCT. It is a tough process, but well worth it as far as I am concerned. Best of luck!
Steve,
Thanks for keeping the kids safe. Your decision also keeps the bus drivers, teachers, and parents safe, too. Be bold in your decisions.
I'm 7 years post auto stem cell transplant. Radiation and chemo in various forms have followed. I'm 61 and still trying to work full time and battle the myeloma. I have good doctors, a faith in God, and a wife who is God's blessing.
Your fog analogy is the best I've ever encountered to describe the battle with the disease. For me, it's never been just a "journey." The battle has been constant. We battle to rise in the morning and to find comfort in sleep. But my wife and friends keep me laughing. Humor is our best weapon against the painful days.
The fog that affects us most, in our personal journey, is the small cloud that covers the road when driving down into the lush and low lying valley. You know the fog will be gone as you ascend the hill again, but first you must find your way through the fog.
On a sunny day, the valley is bright and full of life. When the fog settles in, so does the terror. Slowing down and turning the lights on low lets you see the road ahead ... but only just a little.
It's tough to slow down to a crawl when you want to run, but it makes you appreciate God's wonderful gift of life. Then you reach the end of the fog and start climbing the hill into the sunshine again, mindful there will be fog on the road ahead. But knowing the sunshine is beyond the fog is why we keep going slowly forward.
Thank you for sharing your thoughts and letting me reply. Your thoughtful letter has given comfort and much to contemplate. Thank you.
Norm
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