My diagnosis: First answers

I went to see the doctor who had told me about my diagnosis in the first place two months ago. Again, I had to wait for hours. This time, I was better prepared. I came with an old friend. It was such an absurd situation….I was the only young (and pregnant) person in the waiting room. I was hoping to hear how much time I had left to live.

(What happened before?)

The friend who came with me had been selected carefully. I have known her all my life, we went to primary school together. Her mother had died of cancer and her husband was a doctor. I felt safe with her. We were not only sitting there nervously, holding hands. Sometimes we did, but not all of the time. We were also making macabre jokes. I love to laugh and I had become an expert in macabre humor. (I am a bit reluctant to use this kind of humor in my blog entries though, because I dont want to hurt anyone’s feelings).

I discussed wigs with a bald woman who had come for chemotherapy. She informed me about the pros and cons of various brands. I did not feel bad about the prospect of losing my hair. I wanted to keep my life . Why would I bother about hair if I could live long enough to bring my children up?

And then they called my name. We entered. The doctor sat there with my results. She had not finished searching for their interpretations in Google yet (yes, I am serious!) and asked us to wait a little longer. We did and watched her disbelievingly as she read the Internet results of my specific genetic mutations. She concluded that it was not “so bad”. I might have “up to twenty years to live”. She had only referred to one of the different mutations, though. What about the other one? I was told that it was not “that important”. Then I was handed the results.

“And …what happens now?” I inquired. “We will take another blood sample from you and then you can go home.” My friend intervened: “Is there not therapy at all?” “Sorry, I forgot to mention. No, there is no therapy. When you have chronic lymphocytic leukemia or CLL as we call it, our approach is “watch and wait”. This means we regularly monitor the development of the disease and when we see that you blood results have gotten really bad – maybe in four years from now –  we start chemotherapy. After that, they will be okay for a while – two years or so – and then, when they deteriorate again, you will have the next and last chemotherapy. As soon as your blood results worsen once more after an estimated period of two years you might try a bone marrow transplant. However, this is dangerous. Few people take the risk. And then…. in the end, you know, it is incurable. “We understood what she wanted to say.

Was this the answer I had been waiting for for two months? I could have googled myself. My friend and I were shocked. Not so much by what the doctor had said, but much more by what she had not said. I needed concrete answers – for my family as well as myself. I could not just watch and wait.

The story continues here

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