A Girl-Warrior in the World of CLL

The Girl Warrior Begins

Seven months. Not long in a cosmic sense. Long enough emotionally to have unearthed some truths. About myself. Long enough to have learned a little about this disease.

In my early reading, I came across the question of whether to tell anyone about the diagnosis. Some said never tell your employer. Clearly, others disclosed to family and friends, only. I thought about this issue for a bit and made several decisions.

First, I would tell my employer and those co-workers to whom I share personal stories. I decided that I would tell three or four friends in my social circle. I told my daughter and siblings. These were good decisions as the out pouring of love and care and concern has been quite wonderful. I understand why in some work environments, one would chose to remain silent in fear that others may not think one up to the task. My work environment is a small private school for students with physical and developmental disabilities. The executive director has created a warm and loving environment not only for students but for staff as well. I have not regretted this decision.

Telling my daughter was perhaps the most difficult of all. Amy and I are all that is left of my original nuclear family: my son Jonathan died when Amy was six and my husband died when she was only twelve. I knew the words 'cancer' or 'leukemia' would be difficult to hear and process.

I chose not tell my mother. My family has experienced a lot of illness, particularly cancer. My brother had testicular cancer in his thirties and prostate cancer in his fifties; one sister had a soft tissue sarcoma (intestinal) and just last year another sister had something called a schwanoma. I just could not tell my mother! If the CLL is indeed 'indolent' I may not need treatment for a number of years so I reasoned that perhaps she just needn't know.

My mother is worrier. She never stops worrying about us even though we now range from 44 to 46, 50 to 52, and 60 to 62, we are still her children. I wanted to spare her the angst of knowing and not understanding and not being able to 'do' anything.

But during this winter when B-symptoms appeared with some frequency and I was learning to accept the diagnosis -- to say it to myself: "this is my life, now" "this is not going away" "I have cancer". And I realized that withholding important information from someone you love changes the nature of the relationship.

Clearly the withholding didn't come into focus as a problem until I was able to know (in my bones) and assimilate the 'word' and its meaning to me and my life. Once I moved into that realm of understanding, the disconnect between my mother and I became very uncomfortable for me.

And so a new decision is made. Larry and I will visit my mother this weekend and during our time together, I will disclose my new reality as a "Girl Warrior" in the CLL World. My sister, Susan and her husband Rich, will be with us and this is comforting.