[Salamandah]

Mom diagnosed in 2004, still fighting

by Salamandah on Tue May 20, 2014 2:59 pm

Hi all, My mom was diagnosed as smoldering myeloma in 2004 after a knee replacement. It was a confusing time. Six months after her diagnosis, our business almost went under and things were just very hard. By 2006, my brothers and I had found that UAMS was near where we lived and that it was the best around for multiple myeloma.

Everything went smoothly for a couple of years. The first time I remember my mom mentioning any kind of pain at all was on vacation. Her ribs on her right side hurt but we didn't think anything of it. Later that week, her brother died of a heart attack. Later that same year (within a couple of months) we had more stressful things to deal with. For one, I found out I was pregnant. My mom also learned that she had gone from smoldering into full fledged cancer and that she would need a stem cell transplant.

In September of 2008, she moved to AR and underwent the first SCT. She collected 60 million stem cells on her first go! She came home and was able to be in the delivery room for the birth of her first (and still only) grandchild. When he was 2 months old, she went back to AR for her second SCT.

Anyway, ups and downs along the way. She doesn't tolerate meds very well. Almost any side effect listed, she will have. My son has grown up going to take his grandma to the hospital. He is 5 now and enjoys going because he gets to go to the hotel. I am a single mom, trying my best to hold our business together, take care of my child and be both parents to him, and take care of my mom.

Last year, 4 vertebrae collapsed and she had the cement thing done. Right now, things are very hard for her emotionally. She is afraid to do anything because she doesn't want to hurt herself. She is angry with herself because she "can't" do anything. It is taking a toll on all of us.

I don't really know what to do.

[kore]

Re: Mom diagnosed in 2004, still fighting

by kore on Mon May 26, 2014 10:25 pm

Dear Amanda,

It's a very difficult disease with so many ups and downs for the person with myeloma and the care partner (as you articulated so well). It sounds like, with everything on your plate, you're handling it all really well (though it probably doesn't feel that way!).

One of the hardest things I had to learn as a care partner for my mom was to ask other people for help in accomplishing everything that had to get done just to keep life from going off the rails. What you're doing is really, really tough so if there is anyone that can help lessen your load -- enlist them!

Also, take care of yourself (even if that means just 15 minutes of quiet a day for yourself) and be kind to yourself (you're doing the toughest job on earth).

Best wishes,
Kore