bio_margo-sorgman_180x243_aMy name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  I came to our first appointment with a single-spaced narrative and set of questions about red blood cell production.  He leaned forward and told me the study of MPNs was his life’s work and that he would take good care of me.  And as I walked home, I knew I was going to live a full life.

I keep up to date, like many of you.  I am learning how to navigate those “firsts” after diagnosis.  When I went for my flu shot, I updated the form to include PV. It felt strange at first.  But the more I explained PV, the more of an authority I became.  I know I will approach my diagnosis with energy and a determination to take charge.

Of course, there are some changes.  But many of the changes are improvements.  I pay more attention to my body.  When I get tired, I can decide whether to rest or keep going.  When I am feeling fatigued after standing in one place for a bit of time, I now shuffle my feet to alleviate that fatigue.  Another positive outcome from my PV diagnosis is to think about how I spend my time.  I am getting better at selecting activities that come my way.  When I go for my blood tests and periodic phlebotomies as a result of my HCT level, I am surrounded by others with cancers so much more serious than mine.  And I leave feeling a bit guilty about my good fortune to have a superb doctor, a robust field of MPN research, and a great family and friends network.

PV has not robbed me of the joy of loving others, watching a beautiful sunset, and being mesmerized by our Maestro Muti as he conducts the Chicago Symphony Orchestra.  I take classes, volunteer actively and love to write.  There is much insight when I see my hopes and tensions on the page.  Soren Kierkegaard reminds me that “life can only be understood backwards: but it must be lived forwards.”  I agree.

After diagnosis, what changes have you found to actually be improvements? Tell me in the comments section.

Margo