Twice now, I have found myself almost in tears. I say almost because mostly I hold them back to be strong for my family. I am hesitant to write about this as my family will be following along, and for me it shows a vulnerability that I am not used to sharing. Though, I am committed to this journal and felt that I should make an entry.
The first since my diagnosis, was late at night earlier this week, everyone was asleep and I was still awake. I was watching "Wedding Crashers" with Owen Wilson of all things. The movie is absolutely hilarious but towards the end when the father is talking to the daughter while attempting to pick out a floral arrangement there was a soft point, and my mind started running away with itself, even though my Doc says that I should expect a long life as I am young and my MPN was caught early. I started thinking, am I going to have these types of moments with my daughter, am I going to be there when it's time to walk her down the aisle? Even though nobody was awake, I held back the tears and told myself to man up.
The second time was tonight, we live in the country and as it gets cooler we start spending our weekend evenings by the fire, we generally will cook hot dogs and later roast marshmallows, and tonight was the first fire of this season. I got the fire lit, my daughter played outside with the dogs and danced while Alicia tended to the chickens. We broke the hotdogs out then ate while the radio was playing in the background. After eating we played fetch with the dogs until daylight faded and we were all just sitting by the fire. In my mind I knew the quietness was dangerous, no activity and nothing to really distract my brain from wandering too far off track. With only the light of the fire now, my daughter who is 11 was sitting on her mother's lap when I heard "you should go sit with your daddy". Maybe Alicia knew, maybe she saw something that gave me away. As rough as it may sound generally after a few minutes I ask her to get up as it does get a little uncomfortable, and I was expecting to do just that. However this time, once she sat down it was different. Sure I made jokes about her boney behind but this time I didn't want to let go, I just wanted to hold her. We joked and played for a few minutes then stared into the fire as one generally does. I held her and I could feel the tears welling up from thoughts running through my head again. I just held her closer and tried to keep myself in that moment instead of drifting to what could be I focused on the now.
I know I still have a lot to learn about this disease, I know that chances are I will live a mostly normal life. That doesn't stop my brain from wandering to what I call the horror zone from time to time. I know it will occur again and I guess I just need to remember to focus on the finer things in life and the moment I am in at that time.
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.