Hi Terry,
I’m retired LEO also with smoldering multiple myeloma. I intentionally retired at 55 as we were allowed to go then (who wants an old cop?). We have our unique set of problems, don’t we? But if you’ve been married 45 years, kudos to you! I know who the strong one is in the family!
But MGUS and the progression/fear of progression is not for the faint of heart. ❤️ I’m certain I had undiagnosed MGUS the last five years of my career, I was tired a lot, more than the adrenaline dump fatigue. I truly believe it adds to the struggle, we have abnormal paraproteins filling up our bone marrow, contributing to peripheral neuropathy, and generally stealing our oomph. My MM specialist who ordered my bmb which confirmed I had SMM, not MGUS as the hematologist guessed, said fatigue is common with those who have SMM. I believe it contributes to MGUS fatigue as well altho there’s not proof of this scientifically, just empirically. I’m also a RN, so I’ve done a lot of reading of medical studies, as I’ve learned a lot from groups like this.
I don’t know what to tell you. We are strange, stubborn creatures, us LEOs. Do take care of yourself, if you have spare energy then feed him nutritiously, exercise with him, encourage him to lean on his faith or practice meditation, or similar. Go to his medical appointments so you know what the doctor really said. We underplay everything, as you know. We deny until the last breath in many cases but some of us learn it’s good to get the specific labs done religiously, so we can at least control any progression by catching it early and getting an early jump on treatment.
All the best to you, St Terry!
Amber,
You mentioned peripheral neuropathy related with SMM. An tiredness.
I will mention these to oncologist, I kept wondering ‘ why’ these two things are happening
Tuesday when I talk with her I will ask her about these two symptoms.
She wants to start light chemo soon to slow down my numbers from increasing.
Appreciate you sharing what you have learned in a clear and understandable way
Thank you