Friday, August 12, 2011


In case anybody cares I'm still alive but going through a difficult time.   I haven't been doing any sewing or posting about it.

Friday afternoon update--   Thank you for all your concerns and caring comments.    It's so nice to hear from those who have met me and those who only know me from my sewing.   I just got off the phone with my sister who gave me a pep talk.    Earlier my doctor from Johns Hopkins called and we discussed everything that's going on and how I feel.     He's very optimistic and wants me to feel better about it.

Gail D, you said it best, that the aggressive treatment is knocking the stuff out of me.   Basically the plasmapheresis is removing my blood plasma with all my antibodies.   I'm tired and lackadaisical.    The doctor is encouraged that I am making small progress, able to stand up straight without aid or wobbling for several minutes, able to move/bend my toes and even bend at the knee and come back up without wobbling or falling over.   He said that anything that is forward is good progress, and he wanted me to be excited about that.   As for the numbness in my lower legs and feet - like wearing a very tight sock,  he said that would take longer to heal.     They intended the treatment to be aggressive.     Since the treatment I get tomorrow will be the end of the third week, and he has all my labs, the team will meet early next week to decide how long I keep the catheter in and how many more treatments before I go back to see them on the 30th.     They will probably have the doctors here remove the catheter before I go back.  

He said my recovery is going to take a long time.  I told him I really need to be able to get back to cooking since my husband is such a bad cook, and I don't know how long I can endure the frozen entrees (he just got back from the grocery store with more LOL, but he brought me some chocolate).  So like everything else I've been though since this began, I'll endure the treatments, feel good about these baby steps and be hopeful for what tomorrow brings.   It could be worse so I need to pick myself up and look forward.

Thanks again for your encouragement that makes me feel better.   I really need to get on with some sewing to feel productive again.