07/06/2024
Wow! I’ve had almost 100 people look into this page in the last 4 months. I truly hope and pray it wasn’t because they or their loved one has been recently diagnosed, but I suppose there wouldn’t be another reason to search out Multiple Myeloma otherwise. 😞
I kept the page up, but haven’t engaged too much. I tried doing a blog/vlog, but it is ultra time consuming, and not really for me.
I will tell you that I am now 8 years post diagnosis and 7 years post SCT and no longer on chemotherapy maintenance since last October! My lightchains are ever so slowly moving up and then down, but always within 2-4 points. Our “worry” number is 10. At that point we will look for another treatment plan.
I think I may have set a record at Mayo for the most rounds of chemo maintenance while maintaining remission. Over 60 rounds!
I am SO happy to have my time and body back to myself. I do not miss the chemo flu that followed the shot of Velcade. Even though I managed to get myself on a system, it wasn’t fun.
I have more good days than bad. My bones still hurt, my shins especially. I still take pain medication daily, specifically Tramadol, but the lowest possible dose. I am still working part-time as a hair stylist. I do 5K walks with my husband for charities I can get behind. I love doing trail hikes (but low impact) and I enjoy a Pilates class once a week.
I’ve said it numerous posts before…. Keep. Moving! It is definitely crucial to good mental health as well as our physical existence.
I’ve taken to counting calories again, but mostly for regularity in eating and digestion. I have it set up to lose approximately a pound/week, but that’s mostly because I can’t eat as much food as would be required for a normal woman my age. Not that I couldn’t stand to lose a good 20lbs, but it’s hard some days to eat regularly throughout the day. I cram my calories into one session, especially on work days. That doesn’t bode well for my intestinal system.
I find it’s the little things that help even me out. Like getting enough sleep, activity, calories, and quiet time. If I keep these things balanced I am pretty darn good! But if even one of them gets out of whack, it takes me almost 2 weeks to fix it.
Repeating my muscle movement weekly keeps my core strong. Without that, I couldn’t work like I do.
I hope if you’re reading this it gives you some hope. I am in my 50’s, and I am definitely tracking to see 60 right now. I was diagnosed at 44yrs of age…it was a shocker. But, I am too stubborn to give it all up. I am thankful that my highly competitive nature makes me look at setbacks like a personal challenge and losing isn’t an option!
I praise my Lord, Jesus, for the Graces and Blessings He has bestowed upon me. Without Him, I would not be where I am today. I truly believe in His way. Whatever His plans for me, they are the only reason I am still here. He gives me the fire to carry this cross and when I can’t, you bet your buttocks He carries it for me!
God bless you all! Hang in there! And please tell me your story!!! I would love to hear from you!
😊❤️🙏🏻🙏🏻🙏🏻
