Thursday, August 1, 2013

To Diabetes Mecca and Back Again, Part 1

It's been nearly a week since my trip to Boston but it's taken this long to process.

All in all, it was a good trip.  I learned a lot, had some good experiences, met some interesting people.

A few weeks ago, Dr. Faustman's office notified  me that I could schedule an appointment to donate blood for her Phase II Clinical Trial of the TB vaccine.  When I told my brother, his wife kindly offered to set up a meeting with Peng Yi.  My husband helped me make train reservations; I got a room at the inn across the street from Faustman's lab.

When I visited my endo, she asked, "Why would you want to do such a thing?"  I explained who Dr. Faustman is and my hopes of being included in the clinical trial and maybe no longer being diabetic.  As the day approached for me to leave, I thought about her question.  After some bad experiences with incompetent phlebotomists six years ago, blood draws make me anxious.  Some days, I avoid leaving the house.  Worrying whether I have everything I need (glucometer, insulin, test strips, glucose tablets, juice box, raisins), worrying about bottoming out just as I walk out the door, or halfway through my errands.  But if that Spanish astronaut can go to the space station, I told myself I could make it to Boston. I kept telling myself it would be worth the anxiety.

Sometimes when things don't meet our expectations, it's because they are both better and worse than we imagined.  This trip was a mixture of both.

2pm Monday, I left the house, walked most of the way to the bus stop, only to see the FedEx truck with my CGM sensors aboard head for my house.  Not wanting them to sit out in the heat, I walked back home, took them inside, and headed back to the bus stop.  The bus let me off outside the art museum.  I walked several blocks to the Union, only to be told that the bus would pick me up somewhere outside the art museum.

By the time I was finally aboard the train, I was missing my husband.  No one else would get the Chekovian Seagull humor of the Slovakian teenager, dressed in black, reading 11,0002 Ways to Be Miserable and wonder if her name is Masha, or hear W C Fields saying "Philadelphia will do" as my Parisienne seatmate studiously underlines the sites of Philadelphia in her guidebook.  It's going to be a long time until Friday.

Twenty-six hours later, around midnight, I arrive at the inn.  One working toilet, one working sink (not in the same bathroom) for two cars of people and one of them catches fire, causing further delay.  More shocking than the electrical fire was the apathy of passengers and crew.  I went to the sleepers, figuring the crewman would come to kick me out and I could tell him our car was filling with smoke.  "It happens."

Faustman's lab is in a glass and steel building with a waterfall below a glass ceiling.  Dr. Faustman was not in that day.  I asked the person taking down my information and the one drawing my blood what they wanted people to know about diabetes.  "There are two kinds."  My heart sank.  I came all this way for that?  That's like hearing the newest model car will have 4 wheels.

People were very helpful on my trip over to Harvard.  The phlebotomist wrote out which shuttle and subway train to take; the girls on the shuttle pointed me toward the Red Line Station.  So far so good.  Day two and I'm not lost yet.

Spoke too soon.  The people at Harvard may be brilliant but their directions to Divinity consist of waving over this way.  I suppose that's to distinguish between back that way.

Tune in tomorrow for the continuing story.

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