Alive and Kicking

Over the years, I've followed a number of blogs by fellow myeloma patients who I can relate to or who have interesting or informational stories to share. Writing is a good way to vent, share, cry or laugh...in a relatively safe place. Also over the years, I've become friends with a number of patients. It's that common thread. But, the sad truth is that myeloma patients still die. It's still incurable. 

I'm still stable and cruising along. Umpteen gajillion years since my diagnosis and half as long on Darzalex and Pomalyst. 

So what happens is, if someone doesn't post or share for a while, we get worried. I have a good friend who I met at Dr Phan's. We'll comment to each other if we're wondering about someone. If we see that someone has finally posted after a while, we'll let each other know. Such a strange phenomena isn't it?

All of the above is to let folks know I'm alive and kicking. My myeloma is in a good place. Why does this regimen work so long for me when it doesn't for others? Hell if I know. Luck of the draw? Some grand design? Nobody knows. We do know that myeloma is such a different disease for everyone. There is no one standard treatment that works for everyone. 

While my disease is stable. A gajillion years of treatment and steroids is playing roughshod on my body. My skin is that of a 100 year old person. Bleeding and bruising non stop. We're gonna do a bone density test soon, to see how I'm doing with osteoporosis. A bad back has pushed me to need to know my bone conditions. How we treat the back depends on my bones.  Steroids have played havoc on my bones, in addition to my emotional state. I've begged to drop steroids completely. I haven't gotten the ok, but we have lowered them.

Lastly, I'm finally changing to FasPro, an injected version of Darzalex.  For years I didn't mind the 5-6 hours, once a month, in the infusion chair for my treatment. It actually was a bit of a relaxing, reprieve from the real world. I no longer can sit still for any long period of time. I get uncomfortable and super antsy. This I chalk up to chemobrain and the impact of so many years of treatment on my body's functions. Not scientific. But when you know, you know.  

And that's all I got. Looking ahead: I can guarantee I'll soon be making my annual Vikings to win the Super Bowl bet. Almost 30 years making this bet. Not a single time winning. And this is about my only guarantee.  Stay well and healthy everyone. 

Last years winner loser: