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Old Sat Feb 3, 2018, 12:34 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Barb,

Wanting to take a reprieve from a series of bad news, especially when it is unexpected is natural. Give yourself a day or two to reset your mind and body, then come out fighting, ready to beat this disease that has had several years to get to this point. Know that now it is your turn to win. It is only with hardship and difficulty that you forge great strength, the kind that you did not know you had before.

It is definitely important to get your affairs in order, from making sure that your finances are set, to taking care of pets, getting help with your care, etc. The most important piece is to take care of yourself and make sure that you are healthy and ready in all aspects of what is ahead.

From experience, the month in the hospital goes quickly. You are in a cocoon of sorts, with room service, maid service, personal trainers (physical therapy), a series of best friends (rotating nurses and doctors) and then of course your family and friends that choose to come. You become the most popular person you know for that time. It is the time after the hospital that you will want to coordinate as you will probably want more assistance than you currently expect. I know that I would not have been able to get through without the assistance of my father-in-law.

At this risk of this being too long - ask for help, and know that it may have to enter parts of your life that you haven't asked for it before - paying bills, getting rides, cooking meals, cleaning the house, etc. That was the hard part for me, because I have always done those things for myself, so I had to swallow some pride to even accept help when offered. Hopefully you are not as prideful and stubborn as me

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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