He had lost 40 pounds since I first met him. He seemed small on the couch. There were slowly healing scabs on his scalp from shaving the post-chemo stubble as it re-grew. I realized that though I may have read about the disease process in books, the disease looked different after knowing him for a year. Unbidden, unwanted, his disease had worked itself into the fabric of his life. Texts taught me about how the amyloid deposited itself in the tissue of his bowel, pathology slides glowed green where the glomeruli of his kidneys were filled with it. But the literature gave me no insight into what a 38-year-old, previously healthy man, father, photographer, waiter, brother and son, would go through in the year after he found out that he had primary amyloidosis. A possible bone marrow transplant with a 20% chance of dying. If he lived, he would probably be on dialysis for the rest of his life.
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