As I wrote last month ^[1], in early June I went to the Mayo Clinic in Rochester, Minne­sota, at the suggestion of my on­col­o­gist to get a second opinion on my cancer.

There are many ways to tell the same story.

This is one way. I have relapsed. The myeloma is pro­gress­ing at the same in­ex­orable glacial pace that has marked it for the last decade. I have stopped tak­ing Revlimid ^[2] (lena­lido­mide) and will begin Kyprolis ^[3] (car­filz­o­mib) at some un­de­ter­mined date.

There are many ways to tell the same story.

This is one way. There is a large carillon there. A carillon is an instrument consisting of at least 23 large, tuned bronze bells, fixed to beams. The bells sound when struck by clappers, which are attached by wires to the clavier, consisting of a pedal board (think of a pipe organ) and large oak keys called batons. The car­il­lon­neur plays the foot pedals and batons, striking the batons forcefully with his fists. The current car­il­lon­neur once had a six-month layoff while the carillon was being repaired. During that time, his playing calluses soft­ened. When he was finally able to play again, he looked down at the batons and saw blood on them from where his hands had broken open.

There are many ways to tell the same story.

This is one way. I have had amyloids present in the last two bone marrow biopsies, one in early 2014 and one this month. Until I sat down with the myeloma specialist, I had never heard the term “amyloid” and did not know what the ramifications of that term were. Now I know.

There are many ways to tell the same story.

This is one way. In America in the late 19th and early 20th century, many hospitals, usually private, were started by subscriptions (pledges) of the local citizens, and then grew only when someone died and left a hefty bequest. In my town, that is exactly what happened. What did it take for two brothers during their life­times to create a non-profit clinic in a small county seat in Minnesota in the same era when writer Sinclair Lewis, a Minnesotan and the first American to win the Nobel Prize for literature, was savaging small towns for their closed-mindedness and lack of vision?

There are many ways to tell the same story.

This is one way. The myeloma specialist said that cancer is like an army and one needs a large army to conquer a country. My army is small. But amyloids are like chemical warfare, he said. Very small amounts can do great harm. When amyloids leave the bone marrow and travel to soft organs, they are chemical weapons. Mine appear to still be mostly contained in the marrow.

There are many ways to tell the same story.

This is one way. There is a large atrium there and there is a grand piano in the atrium. Anyone with any skill level may play, and it is typical to pass through and hear someone playing something – ragtime, show tunes, something. On Thursday, a young man was playing Beethoven’s Pathétique Piano Sonata No. 8 from mem­ory and everyone stopped to listen.

There are many ways to tell the same story.

This is one way. The myeloma progression and the amyloid factor are not of immediate concern. Of im­me­di­ate concern is my alkaline phosphatase level, which is abnormally high. The myeloma specialist wants that checked out this month in Ohio by a gastroenterologist. He thinks it is not myeloma related and not a ma­lig­nan­cy, but rather an independent liver disease. When I tell him my youngest brother was diagnosed ten years ago with primary biliary cirrhosis, an auto-immune disorder, he raises his eyebrows and nods.

There are many ways to tell the same story.

This is one way. In 2010, performance artist Marina Abramovic had a retrospective of her work at the Mu­se­um of Modern Art in New York. For three months, she was the installation, sitting at a small table. Mu­se­um visitors would sit in the seat opposite her, she would lift her head, make eye contact, and then stare at the person silently for one minute. Two decades earlier, she had collaborated and had an intense re­la­tion­ship with another performance artist, Ulay, but they had parted in 1988 and not seen one another since. When she lifted her head in 2010 and saw Ulay sitting in the public seat, her eyes filled with tears.

There are many ways to tell the same story.

This is one way. I see the gastro­enter­ol­o­gist on June 22. I see my local oncologist on June 30.

There are many ways to tell the same story.

This is one way. This consult reminded me forcefully that life is short and that I am in a very, very small mi­nor­i­ty (“rare,” said the myeloma specialist) of longtime survivors. I am on a branch that is getting thinner and shakier with each passing month. When I talk about what I learned with those I love, my voice breaks. When I shared the week with my friend Margo, my eyes filled with tears. Margo put her arm around me and her eyes filled with tears too.

There are many ways to tell the same story.