Multiple myeloma: "We must accept our new normality and make the best use of the time we have"
Published 14 May 2019 • By Baptiste Eudes
A member of Carenity in Italy, Yerevan, 65, took many months to get a diagnosis because she didn't care about or pay attention to her symptoms at first. She explains how to stay strong when facing an illness.
The first symptoms
I became ill in 2012. I have always been in good health, except for periodontitis (inflammation of the supporting tissues of the dental organ: the gum, cementum, alveolar ligament and alveolar bone, editor's note). Myeloma can be the result of a long-term infection, maybe it was for me.
I got a bad ear infection, followed by a period where I always felt exhausted, constantly out of breath. I didn't understand why, but when you're used to being healthy, you think "but yes, it will pass". Then the back pain began, sometimes even at night, very severe. An orthopaedist told me it was from scoliosis, but I wasn't convinced.
I lost weight for no reason. One day, my hairdresser, who has known me for a long time, even asked me what was wrong with me, she was worried about my appearance. Before she left, she looked at me with a funny look on her face and told me to take care of myself. Her eyes struck me. I decided to resume my research to get a diagnosis. I can say she helped me not to waste any more time!
I went to see a smart young doctor I knew. He prescribed specific blood tests "to rule out the possibility of serious illnesses"... or rather to confirm that it was a serious illness.
The announcement of the diagnosis and the first treatments
As soon as my doctor heard the results, he sent me to the emergency room. A few days later, the hematologist told me the bad news with great tact: he made me believe that I would only have to go for a few treatments regularly and that everything would be fine. He told me that survival was generally ten years, which is not quite true, but it must have seemed nicer to him to say.
Stem cell transplantation is an experience that varies from person to person. For me, it was horrible. For months, the torn walls of my digestive system gave me excruciating pain and prevented me from eating normally. When I got home, I looked in the mirror and said to myself, "I want three things: my hair, my muscles and a little fat on my bones." It took me six months to get everything back.
Support facing the illness
My husband and I are a very close couple and, of course, he was very anxious and suffered with me when I was sick. My daughter has also suffered and continues to worry about me, but as I am doing rather well, she is trying to be optimistic. We all hope that I will live long enough for other treatments, such as CAR-T cells (a new immunotherapy), to cure myeloma.
For my part, I reacted to the shock by annihilating my feelings. Seven years later, that hasn't changed. From the outside, I am the same as before, sociable, optimistic, always ready to laugh. But deep down, I lost the ability to relax. In seven years, I let myself go three or four times, for a few minutes, and it was beautiful, but I can't repeat the experience more often.
I would say that if my first wish is for doctors to find a cure, the second is to be able to relax as before. Even the sessions with an oncology psychologist didn't help me. Nothing is more painful than remembering the past when everything was fine.
By 2015, the disease had infiltrated the stomach as amyloid. At the hospital, I started taking lenalidomide (REVLIMID), which fortunately saved me from cortisone.
Today, I am in remission. Life is not really the same as before, I have to sleep a lot, but otherwise I'm fine, I can even do my twenty laps in the pool two or three times a week.
To all of you, we must never despair, despite the difficulties. I could have died twice in a few months, and yet I'm still here. We can only accept the new normality and make the best use of the time we have.