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Saturday, July 18, 2015


I have had systemic lupus since 1993.  If you don't know what lupus is, please read the following Wikipedia entry, which is very comprehensive.

I have had a long struggle with this illness, which killed my sister Maryanne in 2008.  We dreamed of being old ladies together, of living close to each other and visiting each day.  This did not come to pass.  When she died, I didn't even know she had gone to the hospital, so sad were the circumstances surrounding her life.

She deserved so much better, and I believe she would have lived longer had she known some measure of true happiness in her relationship.  I have never attempted to contact the man she was with. I could not believe the swiftness with which he wanted to purge himself of anything to do with her.  He insisted on keeping her ashes.  When he was going to supposedly disperse them at Point Reyes, he invited only my younger sister and tried to pick up on her when he did so (she didn't go).  Sometimes I ruefully say that the container of her ashes is on his closet shelf, gathering dust.

I have outlived her now by seven years.  In November 2013, I entered into a near-fatal flare of lupus and nearly lost all my kidney function.  I began a course of chemotherapy with Imuran, which once was used to combat leukemia and now is used as an anti-rejection agent in organ transplantation.  It is incredibly toxic. I cried and was terrified to take it; I had been trying to eat healthily and exercise, and suddenly I would begin taking such a toxic substance.  I did not know that everyone who takes chemo in ways large and small goes through this.

I have been on Imuran for a year and eight months.  Yesterday, after many months of blood tests, my rheumatologist told me that my lupus is probably in complete remission and he cut my chemotherapy down by half.  In six months, if all goes well, I have the chance of going off chemo entirely.  This last bout of lupus was the closest I have ever come to dying of the disease.  It has taken a long time for my body to begin to recover and feel really healthy; that will take time.

For now, though , a reprieve: I shall live.  I will not lose my kidneys.  I fought very hard for this day and am proud of myself.  That is the simple outcome of such a fight: I have bought more time, and that is a precious thing to hold.