Journal: April 2002
I fretted over the next four days, finally resolving to ask for the biopsy to be done the day before we left for our holiday.  That way I would have the results as soon as I returned.  On Monday I was prepared to relay my decision as well as to ask a few more questions.  When I brought this up, I was told that Ray was on a skiing vacation.  And when I tried to make an appointment for the week before our own departure, I discovered that he had no openings.  The front office staff said that they might ask him when he returned if he wanted to work me in. But I pouted and acquiesced to accept the next available appointment, April 8.

Marie brought me on the last day, Monday, March 11.  Tish would meet us later for a celebration lunch.  My sister, Barbarann, accompanied Tish to the clinic in late morning.  My mother had had a hip replacement the week previously and was convalescing in a rehab hospital a few blocks from the cancer clinic.  By the time they arrived, Donna told Tish that I was not myself, having been upset that my doctor was not available to me.  I had my share of grouchy or depressed days when I could not or would not muster my usual deliberate good cheer.  The nurses read my moods.

I knew that the next month would be a long one.  I worried that I would have difficulty enjoying my holiday.  By the following Monday, however, I seemed to be adjusting to the uncertainty of my condition.  I told the people in the lab that I would not be back for a while. Everyone wished me well.  My hemoglobin was still down at 8.4 so I received a Procrit injection.  I had the nurse remind Ray that we would be away on holiday for the next two Mondays.  And even though my white cells were at their lowest point ever – 0.9 – Ray decided that I did not need Neupogen this time.  This would leave me, departing on holiday, very vulnerable for infection.  The first sign of infection, even a fever, would send me to the emergency department of the nearest hospital.  This communication took place with a nurse as intermediary.  And this communication, like all communication taking place through a third party, seemed less than satisfying.

I left the office with two syringes and two vials of Procrit.  The nurses expressed hopes that I would find my ten days at Tybee Island to be a relaxing respite from the rigors of cancer treatment. Donna hugged me as I left and gave me her home phone number in case I ever needed anything (writing her number, as nurses are want to do, on the closest thing at hand, the ever present alcohol wipe package).

What will I do now?  Treatment was deeply woven into the fabric of these last three months.  I was partially defined by my status as an active cancer patient.  Who would I be without the need for trice weekly clinic visits?  Not a nurse.  Not a patient.  A normal person?  (What is a normal person?  For me the answer is simple – a normal person is one without disease.)  So not a normal person.  I still have leukemia.  I am aware of that fact every hour of every day.  So where is a person with leukemia who is not in active treatment and who does not know the status of his disease?  I am in limbo.  And it is something that I need to deal with though it seems at this point to be harder than being a patient.  Limbo.

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