Alyson

I received my official diagnosis of Myelofibrosis in November of 2008 at the Mayo Clinic, Rochester. What a confusing time – I did not know anything about this disease and everything I was told or read was so scary. My doctor laid it on the line telling me they did not have a treatment or plan and even told me my median life expectancy was 6 years! There were options – but I had to pick – no one to just tell me here is what we are going to do to make you better. I’m a breast cancer survivor and so I kept falling back to when I was diagnosed with breast cancer – there was a plan of action – here is what you have, and this is what we are going to do. I’m a list person; I like to have a plan. There was no perfect plan.

So, I made my choice and started on a Clinical trial in February of 2009. I drove from Kansas City to Rochester, MN every 28 days for my standard blood check and to pick up my trial drugs. The support of family and friends was amazing. Each cycle different friends and family took the wheel to make my trek more than just a 6 hour drive to the doctor to see if my body was making the blood it needed. Somehow they made my trips fun and took away some of my anxiousness. This month marks year three of being on the trial. The medicine continues to work. I’ve been through dosage revisions and side effects, but all in all, my counts are good. No, not perfect but good. I now just go every 3rd cycle so less frequent trips but I still find that I am anxious each trip, wondering if I am still making blood. Is it still working? What if it stops? The unknown is now a part of my life and who I am.

And so, I continue to learn. I’ve learned more about how the body makes blood and what blood counts mean, learned that the support of good friends and family is so very important, learned the doctors just don’t know – so don’t listen if they tell you the worst, learned to listen to my body, learned stress is really bad for me and exercise truly does make me feel better (especially when I feel terrible), learned I know my body better than anyone so it is OK to question, doubt or debate when it involves my treatment, learned there are so many resources and people out there to help me understand what is going on with MF, learned communicating with others who have MPN does make a difference – they understand in a way no one else can! I’ve learned I’m on a journey, not the road I chose but still will be an eventful amazing adventure!

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