Last updated: August 2023
I had three of these. My bones were fine. Some newly diagnosed patients have a bone fracture at diagnosis. Other newly diagnosed patients, like me, have severe kidney damage.
Stabilizing my kidneys
My first kidney doctor wanted me to start dialysis based on my labs, but I just couldn’t mentally do it and I knew I wasn’t symptomatic for kidney failure. Without dialysis, my kidneys hung on, I switched kidney doctors and as we stabilized my disease, my damaged kidneys even healed some.
They will never be 100% but they’re functioning, and I have managed to avoid dialysis (knock on wood). I watch them closely, meeting quarterly with my nephrologist.
Were my bones off the hook
All these years I’ve assumed that with stable disease, my bones were off the hook. I understood that the long-term use of the steroid dexamethasone would impact my bone density. Every couple of years, we do a DEXA bone density test. I have osteopenia.
But I get a regular shot of a bone density drug called Xgeva. It’s kidney friendly.
There is another, more familiar bone density drug called Zometa. I never could get Zometa though, given it’s processed through the kidneys. My DEXA studies show that Xgeva is clearly helping my bone density.
Cracks in by vertrebrae
However, long story short, my bones have been impacted by myeloma. Currently, I have two fractured pedicles, the “wings” that are attached to the vertebrae. Mine aren’t attached and it’s causing movement of my vertebrae, leading to pain. I’ve gotten 4 different opinions and each doctor points out that my fractures and weak bones are largely due to my myeloma.
The damage to my bones is clearly visible in imaging we’ve done. When I first heard this, I was shocked and bummed. It felt like a game changer.
All this time, I was (over) confident that with my kidneys and myeloma in good shape, I could happily lead a normal life and simply do my thing. This news about my bones feels different. I’m not gonna lie; it’s a real bummer. This feels like I need to really make some adjustments to how I do things and how I plan.
Opting for surgery
After lots of debate and four different consultations, I’ve opted for surgery. Because of my weak bones, the success of surgery is not guaranteed. I’ve debated two different surgeons at two different hospitals. I prefer one doctor, but I prefer the hospital that he’s not at. One hospital is where I was diagnosed and has bad memories for me. The other hospital has a great reputation and post surgery rehabilitation program.
Questioning my decisions
As I was writing this, I got a call from the office of the neurosurgeon I prefer but wasn’t going with. They wanted to know if I was ready to schedule surgery. I froze. I couldn’t say no. Even though I knew my decision, I couldn’t say it. I told them I’d call them back (after I composed myself).
I hung up the phone questioning my decision, wondering if I needed to readdress my pros and cons list. Over the dozen years since my diagnosis, I have assembled a great team of doctors and specialists. I don’t think I’d be alive or doing as well as I am without these doctors. So having to say no to a doctor I really like is tough. But I’m confident I’ve made a good decision...I think.
I know the doctor said to do what feels right for me and he‘s ok if I go in a different direction. But I still plan to send him an email letting him know what I am doing. It might not be necessary, but it will make me feel better.
I think in general I struggle with making decisions. Be it buying a pair of shoes, a car, or choosing a doctor, I waffle and go back and forth. I drive myself nuts. But I am trying to trust my gut, knowing I smartly considered things. I'm sticking with my choice for back surgery. Now I wait for a surgery date. And that’s another thing I’m not good at…waiting.
What blood cancer were you diagnosed with?