Beyond Blue: Barbara’s MPN Story

Beyond Blue: Barbara’s MPN Story


I have a dream
I’m underwater just swimming around and then somehow I’ll get sort of caught
or trapped and then my inner voice says you forgot you can breathe underwater
and I think that’s right I can breathe underwater it’s like flying I was first diagnosed with polycythemia
vera I was 32 years old and just living my life but I just was so fatigued and
tired all the time and I kept going back to the doctor and saying there’s
something not right there’s just something not right my symptoms in the
beginning were just like this really – bone crushing fatigue and getting super
itchy in a hot shower and I couldn’t eat a full meal because I just got full so
quickly so the doctor sent me to a specialist and I pulled up to a building
that’s who Cancer Center and I thought what and I met with the doctor and he
said yes you have this blood cancer or polycythemia vera and it was utter shock the doctor said to me
your grandmother was in her 70s when she got leukemia and she died and your
father was in his 50s when he got leukemia and he died you’re in your 30s
you do the math and there was a moment where I thought oh my god I’m going to
die from this and then there was something inside me that said that is
not going to be your story I have my story and every NPN patient
has their story my polycythemia vera turned into
myelofibrosis and i needed a bone-marrow transplant there’s just so many things that I have
to be careful of because of their risk of bacteria I can’t go in a public
swimming pool I can’t swim in the ocean which is huge there are bacteria in the
water that could overwhelm my immune system
I could easily end up in the intensive care unit and it could be
life-threatening water is like the air I breathe it soothes my soul in a way that
nothing else can what I really want to do is get back in the water the manatees
are coming to Florida I understand that I can’t put my life at risk but I’ve
been waiting waiting waiting sometimes I’ll just run water over my
hands just to feel it on my skin you want a blanket my best friend Val
continues to be my main support system she makes sure that I take my medication
and stay hydrated yes I literally would not be here without her when I was first
diagnosed with polycythemia vera it was really hard to be diagnosed with
something that nobody knows anything about it’s like having an invisible 80
pound weight that you carry around on your back every day and people can’t see
it and they look at you and they’re like well you look fine they don’t get it
so it really is about your friends and your family and your caregivers who do
get it when I was in the transplant unit I was
so sick and so depleted that I was lying there and I thought I could just let go
right now my friend was there with me and I said to her I can’t do this
and she said another month and you’re gonna feel stronger and I thought oh god
a month oh my god I can’t what and she said a day just a day that says you
you’re not listening to me I can’t do this and she said re an hour just do one
more hour in just five minutes just do five more minutes it hope I don’t I
can’t I don’t think I don’t think I have five more minutes in me I can’t fight
for five more minutes and she said then just do one more breath and I said okay
one breath at a time if I could go back in time and talk to
the woman that I was when I was first diagnosed with polycythemia vera I would
say count your moments this disease doesn’t define you and this disease is
not gonna stop you so hold on keep breathing because you can do this one
breath at a time one more breath