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.

Saturday, February 24, 2007

CT Scans

CT Scans. I dreaded them. I was in anguish anticipating dates of impending scans. I don't know how to even describe my feelings on the days I awaited CT scan results; those days were horrible, terrible. Sometimes the unknown, the waiting, was almost worse than the initial diagnosis. A woman I know with breast cancer told me that the ten minutes she waited for the result of her mammogram were the longest in her life. Ten minutes? I waited days for CT scan results. I'd have paid a lot of money to have results in ten minutes. Ten minutes of anguish vs. hours and hour of dread.

My life after chemo and surgery rotated around scheduled CT scans and their results. I lived my life from CT scan to CT scan, afraid to plan my life beyond the next scheduled scan. I felt sometimes like I imagined a prisoner must feel as they came before a judge for sentencing. Would I be paroled and on probation...able to live my life in relative freedom until the next scheduled CT scan? Or would my CT scan sentence me to yet more surgery and more chemotherapy, put me back on that merry-go-round of uncertainty. Or would my CT scan result be a death sentence, would I be put on death row spending what was left of my future anticipating my demise? I suddenly felt sympathy for the convicted criminal, as strange that sounds. We were in the same fraternity.

I know I watched every movement, facial expression and mannerism of the person conducting my scans. Did they look like they'd seen something on the scan, had they flinched? Did a facial expression that wasn't a smile mean they saw something on the scan that was negative, a new tumor? When they weren't overly friendly, did it mean they were keeping a professional distance as they saw something terrible on the monitor? When they smiled and were friendly, were they covering up so I wouldn't know what they had seen? I never paid so much attention to body language as I did to that of the person conducting my scan.

I've passed the 5 year mark and wondered if this means I can get off the CT scan merry-go-round.I've heard from some that we should get CTs yearly for life.I haven't decided if I will do that yet.

Many write me who are stuggling while awaiting scheduled CT scan or awaiting results. I know only too well what a difficult time you are going through. My heart goes out to all of you.

Sunday, February 18, 2007

Loss

At one point I was told the odds of my dying were significantly better than my odds of surviving cancer. As a nurse I'd dealt with death and with dying patients for years. I'd been present with families immediately after a patient's death and saw their grief, they'd lost someone they loved as the dying person slipped into oblivion. The families and loved ones experienced loss.

My prognosis gave me another view, though. I viewed death now from the perspective of one who is dying. There was a terrible sense of impending loss. A dying person contemplates the loss of ALL of the people he or she loves at once. I contemplated losing my children, my husband, my best friend, and my extended family along with the loss my home, my job, my belongings. A total and complete loss of all that I loved and knew. When people lose children or spouses or homes or jobs, our society considers those individual losses extremely stressful and life altering. The dying person faces all of those losses simultaneously. It is overwhelming.

I believe in an afterlife and a Heaven, and that belief offers reassurance. But still, dying is the loss of all that is known for that which is unknown.

Thursday, February 8, 2007

My Very Short Life

I thank Nancy for her comment to my previous post, she verbalized perfectly what I've felt ever since my diagnosis...."What will I now do with the rest of my short life?".

I no longer assume a long life or plan for retirement or old age. I don't make long term commitments easily anymore. I am obsessed with purpose. If I am here surviving what many haven't, I must be here for a reason. I feel a need to live a life that makes a difference in some profound way, I must make my time count. At the same time I feel too unsure of a future to commit to a direction sometimes. It's a sort of Catch 22.

My priorities changed too. I find that is true with many cancer survivors. We see the world differently. One woman I know has been diagnosed with a very aggressive cancer. Though she is currently in remission, her life goal now is to live long enough for her two year old daughter to remember her mother. We think like that now.

Sometimes I wonder if there will ever come a time when I can feel safe and comfortable in the present again. If I will ever feel okay about wasting time, if I will ever not feel anxious about making future commitments.

I know now that I used to take a lot for granted.

Sunday, February 4, 2007

Control

Being a cancer patient and assuming that identity impacts your thinking in all ways. I'd always been somewhat of a control freak, and I suddenly realized my sense of being control was and always had been an illusion. All of my assumptions about my future had been based on the fact that I would indeed have a future. It seemed that had been a false assumption. My future was not something I controlled, as it turned out.

Immediately on assuming the cancer patient role, I gave control of my life to the cancer. My thoughts and activities were suddenly dictated by the disease. Cancer dictated that I would be in a doctor's office almost every week, cancer dictated that 4 hours of one day a week would be devoted to chemotherapy, cancer dictated that I would be at a hospital pre-registering for lab work (after the wait at preregistration) and having labs drawn (after the wait in the lab) almost weekly. Cancer made the rules, cancer made my schedule, cancer determined my options, cancer determined our budget and my choices, cancer often controlled my thoughts.

I started living one day at a time. I no longer put my faith in tomorrow or next week or next year. They say that is the way we should all live, but in reality,it is a difficult way to live. We live in a very future-oriented culture. I no longer had the ability to make an appoint for dental cleaning 6 months down the road. I could no longer comprehend planning for a future. I couldn't contemplate my kid's graduations, continuing my own education, furthering my career or planning for my retirement. I lived one day at a time, that was all I felt I could control.