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.