Cheers! Or Not...
When I was diagnosed with multiple myeloma in 2011 (which, by the way, when I say this, I feel like I’m the old guy telling kids how we did things when I was their age) I was extremely low on hemoglobin. In year one, I had my share of blood transfusions. I think the number is over 20 units over 10 months. At the time, I asked my primary oncologist if I could have an occasional beer and he told me, no, and that alcohol suppresses the bone marrow’s ability to produce red blood cells, white blood cells, and platelets. Although I wasn’t a big drinker, I did like to have a beer now and again. But I cut out all drinking, not wanting to tax my body any more than it already was.
In year two, as we got my myeloma to a stable position and my blood counts were closer to normal, I’d have an occasional beer when with friends or on a special occasion. My wife in her role as caregiver, mentions things to my doctor that I often don’t. She mentioned once to my doc that I had a couple of beers and it’s an understatement to say he was disappointed and lectured me on the pitfalls of alcohol for myeloma patients.
Conversely, my myeloma specialist once held a fundraiser at a local bar in partnership with Shmaltz Brewing and told us that an occasional drink, in moderation, was no problem. (Sadly, Shmaltz Brewing went out of business this year). Additionally, Brian Durie, a well-known myeloma specialist, once wrote an article for the International Myeloma Foundation titled Good News: Alcohol is Not a Bad Thing for Myeloma Patients.
As with everything myeloma, we are dealing with mixed messages. So I kept my beer intake to a minimum for several years, again only having one if it was a special occasion. However, over the past couple of years, things changed. I became refractory to my treatment in late 2016 and I switched to a then-new immunotherapy, Darzalex. My new regimen has been the best treatment I've been on. After over five years on this treatment, I feel the best I've felt since before my diagnosis. The goal is to stay on this program indefinitely moving forward. (Knock on wood.)
Accepting how myeloma has changed my life
The years passed and in the blink of an eye and unconsciously, I began to feel like I’d far exceeded all my hopes for how long I’d survive with myeloma and I, therefore, could do whatever the heck I wanted going forward. The mind is a crazy thing. Then throw in retirement, a pandemic, and being home a lot more and my habits began to change in 2020. I became a rebel without a cause. Sure I continued with my treatment, of course, and exercised as usual. But in many ways, I stopped listening to other people, including my wife and my doctors, in how best to take care of myself.
This translated into an occasional beer being a daily beer or two, and mixed drinks. This change hasn’t impacted my myeloma numbers, reinforcing my "devil-my-care" attitude. But it definitely impacted my already challenged energy level and clear-headedness. Suffice it to say, ten plus years of continuous myeloma treatment takes a toll on one’s physical and mental well-being. Adding regular alcohol to the mix might not be the smartest thing for me. In December 2021, I decided I would quit drinking for a while. I felt like I needed to boost my energy but more importantly, I need to be ok with my disease and how much it has changed my life. I think I was escaping reality and I need to face it head-on and accept how my life went down an unexpected path with my diagnosis.
I'm feeling better
It's been about a month now and I feel pretty good. My energy level is way up, in fact I’m walking and exercising more than usual. My goal is to walk over 100 miles per month. So far in January, I’ve already hit that goal. And I’m feeling more clearheaded and more honest about my relationship with myeloma and how it has impacted everything.
I’m an all-or-nothing type of person. Thus, I’m not sure if this alcohol-free step is permanent or not. But I certainly feel better and will keep it going for a while.
Do you experience brain fog?