Lets start this by saying that I am close but not real close with my family. What I mean is that I love my family dearly but I dont communicate with them very often. This includes my parents, siblings, aunts, uncles, cousins, everything. Maybe I should do better at that and I am going to try.
I basically told all who would be interested through the first post on my website about my MPN. To me writing is easier than explaining, then having to deal with the emotional aftermath. Maybe its the chicken way out but right now emotion doesnt help very much. My mother found out through my website, obviously she was not pleased with that method, but later she understood. Then she passed the information along to aunts, uncles and cousins. They are all being very supportive and understanding of my methods. I sent an email out to all of them after I got some forwards from my mother with replies from them.
I have reached out to most of my siblings through social media, as its really the only way I have to get in touch. I have only gotten to talk to one of my brothers and my sister so far. Was the basic: how you doing, good you, i'm good, "WAIT you have cancer" kind of conversation. After explaining a little more they calmed down and we talked about what was going on in our lives.
I still have a few more siblings and my father to tell. I have not talked to any of them since Christmas 2016. I am working up the courage to call dad as he doesnt really play on the internet much that I know of. My mother in-law doesnt even know to my knowledge, unless Alicia has spilled the beans. I think so far this is the hardest part, explaining repeatedly while still learning myself and well being a chicken. :)
I will update after everyone is in the know.
Other MPN Resources.
Denial, Anger. Bargaining, Sadness and Acceptance, My stages of grief realized.
Found this NCCN Guideline for MPNs today. I think it is a pretty good resource.
Today marked my monthly visit with oncology, Today we start a new journey in this fight.
ASU, Mayo Clinic and University of TX are looking for MPN Patients to participate in a new study using yoga
Welcome to the new MPN Journal site.