Maybe you have never heard about myelofibrosis. Maybe you don`t like reading about difficult stuff and about rare complicated diseases (I never did, either). Maybe you always hoped THIS never could happen to you or to your relative (…and it did, like to my husband). There is lots of maybes…but if you think you or your family are safe (because you always eat healthy and organic food, exercise, do not smoke and never did drugs, and blah blah), unfortunately, you actually never know…this is a story of our family. We are at the beginning of our journey. There is lots of fear, lots of hope, lots of tears and lots of praying…each day is different…some days are easier, some are not…but I decided to write this blog for those who are looking for some kind of connection with other families struck with this disease…to cope with it, to try understand it, to know, that you are NOT alone…
When I first heard the word “myelofibrosis”, frankly, I had NO idea what that meant. The doctor explained that he found some scarring in the bone marrow of my husband but I had no idea how serious it was. I have always been brilliant in biology and chemistry at my school but that was a long time ago – so, as many times before, I went online to seek some definition. We were devastated and desperate when we read it was an uncurable and deadly disease. No matter which web-site we checked, it was saying the same: you will die! We thought that was it. End of the world, end of everything. We have a little son who, thank God, doesn`t understand (yet) what`s going on. We thought we have no chance for cure or survival. And YET – it looks there is some hope. So, I decided to start this blog to share my experience as a wife, a mother, a caregiver and a human being coping with this disease of my beloved relative, my husband, my eternal love, my everything. I decided not to give ANY chance to this terrible disease and I decided to fight till I drop for my husband, for my family, and for our future.
And so, I`ll describe here step by step, what has happened to us and what currently is happening. If you would like to join me and leave any comments, suggestions or anything, please do. I`ll get back to you as soon as I can.
I would like to mention one thing. I believe in God. No, I am not actively practicing my religion, and I only go to church when I feel to go (maybe it sounds hypocritical to you, but this is how I feel it). I believe in God, I believe in destiny, and in karma, I believe in the balance of good and bad in our lives and in cosmos. I know this disease didn`t come out of nowhere and probably we did something wrong in our lives that started this disease. Also, as one of my relative who is deeply religious said, “for every person, there is a book where his/her destiny is written down” and I understand there are limits to what I personally can do for my husband because only God can decide what the outcome would be. BUT! With all the means, cosmic, prayers, anything, I will fight for my husband and I hope my love will help him to recover and we`ll continue living and enjoying our lives. I am not afraid of any limitations, side-effects, difficulties, prognosis. And I encourage YOU, in case you also fight this disease, to be as positive as you can, about what happens next.
With love,
Esther
