No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were: any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.

I am not sure how many people died of Adenoid Cystic Carcinoma in 2013 - I know of 13, but I am sure there were more. I have ACC, but I had a quiet year in 2013 - scans in April and then again in October showed no evidence of progressive disease, but I have no idea what 2014 will hold.  This cancer is unpredictable, described in the medical literature as relatively indolent but relentless. Very few people are diagnosed with ACC - only about 1200 a year.  It is on the list of the NIH Office of Rare Disease Research, which makes it an orphan disease. Most people have never heard of the ORDR.  I know I had not.

Lisa, an Australian fashion model, died last January in her early 20's.  She lived only a few years after her diagnosis. Alicia, a single mom from Chicago who raised tens of thousands of dollars for ACC research in her lifetime, died at 41, 22 years after her first diagnosis.  Doug Millet, a brilliant businessman whose obituary received half a page in Business Week died at 49, just 17 months after his diagnosis.  Marina, a lovely Swiss woman and former CEO was 53. Just last spring she was celebrating the tenth anniversary of her diagnosis.  Doug from Georgia, a devoted husband and father,  lived about two years after his diagnosis at age 59. Kathy  died at 48, 23 months after her diagnosis in 2011. Amir, a successful engineer from Iran and Massachusetts was 52; his two daughters are still in high school. John was 39, diagnosed 15 years earlier at the age of 24 before either of his two young sons was born. Kellie died yesterday at 37 leaving two young sons, both born since her diagnosis in 2000

I attended an annual support meeting for East Coast survivors last month.  With 22 survivors present we set a world record for the most ACC patients in one room.  I wonder if Guiness would be interested in publishing that?  This was my second meeting since my diagnosis not quite two years ago. There is something about gathering with others who share a similar life threatening illness that feels quite spiritual.  I never would have guessed how deeply connected I would feel with others in the room, most of whom I have never met.  Some I have corresponded with through an online support group. I recognized their names before their faces. I knew the histology and location of their tumors before I knew their hair color or height.  I knew intimate details about their surgeries without realizing they taught at Ivy League schools or had exhibited  art work at MOMA.  We all sat together in a church hall, atheists and believers, PhD's and laborers,  politicians and social workers with a single powerful common denominator.  That sounds grim, and a lot of tears were shed, but our shared experiences brought plenty of laughter and a feeling of almost cameraderie.  I felt like I was with my family, my tribe, my church.   Fellow sufferers share a deep commonality that makes outward differences seem trivial by comparison. Having just met, we knew each other well

What was said that day?  We were each asked to introduce ourselves, to say why we were there - as if it were not obvious - and to say what our greatest hope was. A chemistry professor  diagnosed four years ago said this was the first time she had attended the meeting because it took her that long to show her face.  Another quiet woman joked that she came because this was the cool cancer group - as if we were somehow the elite of the oncology world because of our rare diagnosis. A husband said his greatest hope was to sit on the porch in a rocking chair next to his wife when they were both old.  A woman teared up as she told us sang at her daughter's wedding this year, twenty two years after first learning she had ACC.  She added that she came to the meetings every year because she would never forget how desperately alone and terrified she felt when she was first diagnosed.  The rest of us are fascinated by her case since we all want to still be here in 22 years.   

Over lunch we traded stories, compared treatment options and choices, evaluated doctors and hospitals, talked about how we coped with a cancer that is so uncommon most doctors have never heard of it, that is so unpredictable that statistics are meaningless. One couple recounted how they had found a research lab that sold them forty mice on which to grow the husband's particular tumor.  Since no chemotherapy agent has been found that works for more than 30% of ACC patients who take i,t patients have their own tumors mapped to try to find which gene mutations they possess.  While Matt was in the OR having his metastatic lung tumors biopsied, the unfortunate mice were readied at the lab.  A friend carried the tissue samples across New York City to the lab in an insulated lunch box so the mice could be infected while the tissue was fresh.  It's a great story so far.  We all wish it would have a happy ending but we know it's not a fairy tale.

The meeting broke up around 3.  Most people there were planning to attend a fundraising gala that evening to support research for a cure.  We attended last year when the adolescent band hired to entertain the crowd sang "Only the Good Die Young."  I'm sure they had no idea what they were saying.  We had to get home that evening so we skipped the party this year. On the way home I attempted to parse my feelings about the day.  Although the gathering showcased the thing that keeps me awake at night, it also left me feeling comforted and warmed.  I felt less alone with my secret than I often do.  I felt compassion for others who face the same threat I do, most of them cheerfully and bravely.  I was reminded that my own private struggle is not as solitary as I imagine it to be, that I am not an island but part of a continent.