My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, May 27, 2008

Safety

I was talking to a friend recently. Her son was diagnosed with leukemia over a year ago. He was just beginning first grade when he was diagnosed. He finished treatment and did well, but he will have to repeat first grade. He only attended classes for a few weeks last year as he was so involved with chemo, testing, doctor appointments and all of the traveling that entailed. She said the doctors now feel he is done with cancer forever, though they will continue to follow him.

So the crisis is over. Kind of. She said the first symptom her son had before she knew he had cancer was drenching night sweats. So she checks him at night to make sure he is dry. A lot. She wonders if there is any genetic component. Will her other children also develop leukemia? She watches them closely for the same early signs. Will her family's world come crashing down again?

They aren't safe anymore. A vicious enemy snuck into their home and into their lives once when they weren't looking. Will it come again? Or will a new and different unexpected enemy announce it's presence later?

One of the greatest insults of a cancer diagnosis is that we never quite feel safe again. We are always waiting for the other shoe to drop. Are we safe to move forward? Are we safe to plan a future? We don't want to be caught unawares again, so we are hypervigilant. We long for enough time to pass that we might feel the same sense of safety we did before cancer, but it is a long time coming. For a long time after my diagnosis I could not even say the word's "next year". I almost felt as if I'd jinx myself if I tried to plan that far into the future.

In the past 5 years was the landmark. If you made it 5 years you were considered "cured". You could leave the world of cancer and move on. Now, though, the medical community has replaced the word "cured" with "long term remission". There are enough survivors now that they've learned cancer can recur even after 5 years. When I first heard that shortly after my own diagnosis I was so disappointed, even angry. I know of another woman who read that we were all considered long-term remission vs. cured in a magazine while waiting in an oncology office.....she threw the magazine across the room. Would we never be allowed to feel safe again?

It's what makes cancer tougher than many other enemies. We never know when it's over, we never know when it's okay to feel safe again. We can't get past the crisis and declare it over. Seven years later I still am tested for cancer recurrence.

The trick is to learn to move forward in spite of the fear, in spite of knowing we may never really feel safe again. Someone told me that moving forward in spite of fear was the definition of courage. I looked up the definition: "also known as bravery, will and fortitude, courage is the ability to confront fear, pain, risk/danger, uncertainty, or intimidation."

All of us who have battled cancer and who move on to the next day are courageous. We need to acknowledge that in ourselves and celebrate our courage.

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