I was diagnosed in April 2012 at the age of 58, after experiencing back pain, weight loss, tachycardia and exhaustion due to low hemoglobin . After a few months of Velcade and cortisone I was able to go swimming at my beloved pool again. The day I went back I realized that my life had changed for good, it was not resuming the previous life like it happens when you recover from most diseases.
In Dec 2012 I did an ASCT, which gave me all sort of problems with stomach and intestine. I spent Christmas day as part of the 19 days stay in hospital. Horrible experience. My roommate received the same drug, Melphalan, and just had a little nausea and nothing else. It is true that we respond in different ways, I could not believe the contrast! When I came out I looked at myself in the mirror: I was extremely thin, with no muscles and no hair, and I said to myself that what I wanted was normal weight, my hair and some muscles.
It happened, a few months after the transplant I looked and behaved as if I was the healthiest person on earth.
With the disease in remission I now lead a normal life, but on the psychological side it is really tough! It annoys me when some people who know about me say” Well, nobody knows how long they will live” “Right”, I think “But you can easily chase the though away and you can hope to live 100 years, I cannot”. I am busy all day but I find that I also have to fight my fear, which is tiring, and maybe that is why I sleep something like 10 hours a day, which never happened before.
Reading your articles and comments makes me feel less lonely. My American husband and my 20 yrs old daughter are supportive, yet only those who are ill understand what being ill means. Ciao for now!
