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Originally Posted by Vera W
Hi Beryl, all in all I am doing well. I have a few minor issues, my rash still pops up from time to time. I am having some mild gut issues and I went back on stomach steroids but less than last time.They are already helping. Still waiting for hair, eyelashes and nails! They are slowly moving like turtles, my magnesium was real low last blood test so I went back on 1000 mg a day. This week it was back to top of the range. Some yeast issues even with all the fungus medicine I take but my tests showed that the Vfend was suppressing something. Eyes are blurry and water a lot they are not sure if it is gvh, my nose runs and lips are dry, I have dry mouth! My stamina is better but I still have to be careful. I have tingling in my feet and numbness but not all the time! I have pinched nerves in my shoulder blade but my Chiropractor is helping me. I get tired but most of the time I feel pretty good, My best friend that lives in San Fransisco Met us at our hotel and we all went out for dinner, we went early and no one was there so we got a back booth, That was my first outing since June! She was a superb assistant caregiver and I ordered her some hand crafted Roman glass earrings from Israel, she loved them.I just have a lot of minor irritating things but nothing major, I was very blessed! Now..How are you?
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Hi Vera,
I'm ok. It's good to hear your update. I'm still on Vidaza- I just started my 5th cycle and got another bone marrow test today too. My energy is good and it's still hard to believe I'm sick. My blasts are down from 13% to 8% and my chromosomal abnormalities have gone from 100% to 80%. I'm seeing an acupuncturist, doing EMDR, drinking fresh organic juices and taking vitamins like a fiend. I'm in training for the BMT. My Doc wants me to do it in the late winter but I'm pushing for early June. My son is getting married mid May and I want to help with the reception etc. I also don't like the idea of being at the mercy of winter weather. I feel very scared of the whole thing. I think I'll make it through but it feels very scary. Is there anything you would do differently? Are you staying near your hospital for 6 months? That's the plan for me.
Thanks for writing- i appreciate it.
Take care,
beryl