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Myeloma On The High Plains: Time Flies

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Published: Aug 29, 2020 1:32 pm

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 .

Photo of Mark Pajak, monthly columnist at The Myeloma Beacon.
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7 Comments »

  • Kari Childs said:

    Thank you for your articles and sharing your journey! I look forward to your column each time and always feel calmed by it!

  • Robert Warren said:

    Mark, I always enjoy reading your columns. Thank you for sharing your multiple myeloma journey.

  • Matt said:

    Thanks for sharing Mark. Nice column. You're not alone in having anxiety and worry.

  • Joyce said:

    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.

  • Diana Barker said:

    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.

  • Suzanne Gay said:

    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

  • Patty Nolan Bodin said:

    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.