Myeloma On The High Plains: Time Flies

I wrote my first column for The Beacon last summer not really knowing what to expect. At the time, I had two major concerns.
The first concern was that I had never really written much for public consumption, so I was uncertain about my ability to connect with an audience or provide a reasonably interesting take on living with multiple myeloma.
The other concern has been the always present uncertainty as to whether or not I would still be around to write about my experience.
Well, here I am, 11 months later. Wow, time flied. And I must say, what a joy it has been.
I want to use this month’s column to express some quick thoughts about subjects that have been consistently hanging around in my head the past 11 months.
Even after five-plus years of oral myeloma therapy, I still sometimes struggle with swallowing pills, especially the big ones. There is a real sense of accomplishment when I can get through the day without getting a pill stuck in my throat.
In general, the medication “thing” requires a bit of effort. There is ordering refills before I run out. There is the keeping track of what needs to be taken on what day. And, of course, I try to make sure that I have something to eat after I take my pills.
All that having been said, every morning for the last five plus years, I cannot help but thank those whose intelligence, research, and smart work made my myeloma medication possible. They and the medication they developed have kept me alive.
The fatigue and lack of stamina that accompany my multiple myeloma journey make the lounge chair near the TV a very important piece of furniture in our house. Of course, sitting on the chair is the TV remote, so you can understand the importance of the chair. Fatigue is the one side effect that keeps on keeping on. I exercise routinely and work on my strength and stamina as much as I can.
I suppose the lack of a consistent or routine sleep pattern contributes to the fatigue as much as anything. There is, though, a bit of a silver lining on that front. I have learned to enjoy the quiet of the 2:00 a.m. alone time. Looking out the window, or better yet, going outside at 2:00 in the morning because I cannot sleep seems to give me a good perspective on how small I really am.
Worry. Oh boy. I wish I did not worry so much. But we are who we are. I have come to understand that as long as I accept my worry and don't worry so much about worrying so much, I do a lot better.
At first I worried about everything. The saying “it doesn’t matter” seems blatantly false! Everything matters. If a blood result number was slightly different from the previous month’s level, I worried. Nowadays, a slight back pain or new ache still brings concern and worry. An occasional lack of hunger or appetite can lead me to some dark thoughts. Everything seems to matter when you are living with cancer.
Ahh, but what I have learned, or at least suspect, is that everything might matter, but just not all of the time. Living with multiple myeloma is just another part of my journey.
I definitely am “still in school” regarding how best to navigate worry. Man, it’s a load.
My oncologist (Doctor T) is just the best, and not just for the reasons you would think. Yes, his medical wisdom and desire for information provide me with comfort; he is always providing fresh information. However, it is his spiritual presence or awareness that really has given to me a better sense of what “this” is all about.
We have spent countless hours in the examination room visiting about beliefs, ideas, and thoughts pertaining to our lack of control, about what could come next, and about various doctrines and dogmas that may or may not be of value. The bottom line is that turning the discussion away from myself and toward a “bigger picture” kind of plane reduces my self-importance. What a gift.
Getting a “good numbers” lab result is so comforting. It makes me roll down the windows (I am dating myself by using the term “roll down the windows”) and turn up the volume on the CD player in the truck as I drive back from the hospital. When I go in for an appointment to review “my numbers,” I am a “Nervous Nellie” for about a day and a half prior to the meeting. Not knowing the lab results is stressful. I want to cry, and I have teared up when the numbers come back and they are as we would like them to be.
I believe that thoughts about the uncertainty of what comes next if the numbers are lousy are the culprit for this anxiety. I must stop and remind myself to “stay in the now” and remember that I never really know, and never really have known, what comes next regardless of my lab numbers.
And finally, I want to again thank all of you who have responded to my columns over the past 11 months. I have learned through experience that it is blessing to share life with others, which I feel I have experienced through this column. Thank you for this gift. What a deal.
Mark Pajak is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thank you for your articles and sharing your journey! I look forward to your column each time and always feel calmed by it!
Mark, I always enjoy reading your columns. Thank you for sharing your multiple myeloma journey.
Thanks for sharing Mark. Nice column. You're not alone in having anxiety and worry.
Mark, I can emphathize with you about your lab result numbers. I had a stem cell transplant 8 years ago and have been on no myeloma medicine since. Each time I go to my oncologist, I worry some that my numbers have gone up and I may have to resume that life on cancer drugs. I enjoyed your column and look forward to it every month.
Thank you Mark, for sharing about your anxiety with the journey we are on with myeloma. I feel the same as you, before each visit with oncology and my blood counts each month. My faith is very strong, so I do alot of praying.
I hope you are managing with this pandemic and the unprecedented lifestyle associated with Covid-19. I have not been able to see my oncologist at the hospital, here in Canada. I can only have phone call appointments. It has been 8 years since my stem cell transplant, and I have had a good remission time. My anxiety now is that I have relapsed, and my numbers are slowly rising. So many uncertainties as to when I will be starting treatment again. However I am in a biochemical relapse, which is good, at least that is what they they tell me!
Keep safe, and stay strong. I enjoy your columns.
Mark,
So well put about the constant anxiety and "What next?" My doctor calls me "a numbers game." We watch closely and it is terribly concerning when they go up, even on a new treatment. It is a bit comforting to know that a fellow multiple myeloma patient out there like you shares what I feel each day, and how we strive to stay in the now. You are a "young" myeloma patient at only 11 months out. I have been at this since 2008, nonstop. Never a break. Bless you.
Suzanne Gay
Thanks, Mark! When you share your thoughts and experiences, they remind us that while we are all unique, we also share many of the same worries, ailments, side effects, and obsession with lab results. I was really taken with your relationship with your oncologist. It seems you have been blessed. My husband also has a wonderful oncologist, and I think that makes all the difference. To have someone you can trust to tell you the good news as well as the bad news is so very important. We are glad you “are still around” to write your column and keep us informed about your situation and progress.