Boston: Retrospective on my Trip to Diabetes Mecca.

When we say things didn't meet our expectations, it may be that they were better or it may be that they were worse than we had anticipated.  My trip to Boston did both.

I had expected to be able to ask Dr. Faustman about her research and to shake hands and say thank you to Peng Yi.  I was disappointed in her staff's grasp of diabetes and overwhelmed by not only what Peng Yi tried to teach me but also all the things he hopes to learn.  Faustman's lab may not be Mecca, but Boston held many happy surprises, Peng Yi being but one of them.

My brother met me at the Stem Cell Institute and took his wife and I out to lunch on the quad.  As I tested and injected, I noticed that at last he is comfortable with what I do. Sticking myself with sharp pointy objects is just part of who I am.  On the entire trip, in restaurants, sandwiched among strangers on the train, no one commented or flinched or judged.  I didn't feel like I needed to hide or explain.

After lunch, my brother drove me to the Joslin Center.  I wandered around.  The CDE coordinator talked to me about the programs.  An entire building of people who get it.  A station to download meters and CGMs.  Upper floors of research labs (I hope Peng Yi is happy there).  The front of the building is decorated with a bas relief mural of the history of diabetic care, from ancient civilizations ending, not with Banting and Best, but with  Minot, who cured pernicious anemia, and was able to do so because he became diabetic and received insulin, leading him to realize the answer was to replace what was missing, either through diet or supplements,  We are more than placid recipients of care.  By surviving, thriving, we are able to create a better world.  Scientists like Minot, astronauts, teachers, physicians, dancers, musicians, actors....

We are a part of this world.  Not freaks.  Not gluttonous, lazy sinners to be scorned or shunned.  Not one of them, but one of us.

In Boston's South Station, I bought coffee and a croissant while waiting for my train home.  Au Bon Pain had a touch screen mounted off to the side of the register.  A plain croissant had 29 grams carbohydrate, the chocolate 57 grams.  I had the chocolate, tested, injected 6 units of insulin and delighted in the moment.

If this is how the world evolves, for all of us with diabetes, with test strips, meters and insulin, we can go anywhere and be just who we are.

Awestruck by Science

                                                                      Peng Yi

After wandering around campus in more or less the right direction, I finally found #7 Divinity Street, Harvard Stem Cell Institute. Up 4 flights of stairs to the 3rd floor, Celia told me Peng Yi was eager to speak to me.

I had expected a handshake, a quick howdoyoudo.  Instead, we were off in search of a conference room with a white board for drawing diagrams.

Wait!  Miles of walking and all those stairs burnt up my makeshift breakfast.  I pull out my meter.  56.  I explain to Peng Yi that without glucose tablets none of his explanation will make sense to me. He patiently begins.  Green notes fill the board, which I copy onto my notebook, striving for that right balance of listening and taking notes.  How it all works.  What goes wrong.  What he saw and pieced together.

Earlier I had been frustrated by Faustman's staff overly simple reply.  Now I struggle for glimpses, glimmers of understanding.

 The body can make do with 50% of its beta cells, but when the number drops to 10%, it can't keep up.  Type 2 is a signalling problem.  Insulin resistance initially causes a proliferation of beta cells, but then the number drops to fewer and fewer of the original number.  Peng Yi induced insulin resistance.  The microarray showed that the cells were producing more of this hormone, betatrophin, that increased the beta cells.  [This last part my biochemist daughter keeps explaining to me.]

So we come to the real reason for the conference: what Peng Yi wanted me to tell the world.

This is not the dreamed-of end-of-the-bad-times moment-of-truth.  What Peng Yi discovered, what all truthful, honest and intelligent scientists discover, is how complex the endocrine system is.  He found an undiscovered piece of the puzzle and also a clue to how many missing pieces there are.  He now knows several more questions he needs to find answers to:  How does one purify this protein (echoes of Collip and Banting)?  Why do the betacells stop proliferating and die off?  Would it be disastrous for them to keep proliferating?  What other hormones/proteins are waiting to be discovered?  What's going on in the other pancreatic cells, beyond alpha and beta?

My mind is still aswirl from my meeting with Peng Yi.

The rest of the world wants to look at diabetes as if it were a preschool puzzle.  Put the square peg in the square hole and the round peg in the round.  And maybe for some, that's all they believe is necessary.  All they can handle.  At the play reading I was told not to expect the audience to understand or even be interested. "Math and science cause my eyes to glaze over."  I certainly struggled during that conference, between the detailed knowledge and recovering hypoglycemia.  Maybe my daughter can explain microarrays again.  Because the more pieces of the puzzle we can understand, the more we share which parts we've discovered, the better our chances at dealing with this thing that is becoming an increasingly bigger part of all of our lives.

Searching for Divinity

As I searched for Divinity Street, the meanderings of the paths resonated with the meanderings of my mind.  I'm an English teacher.  Analogies abound.  The paths echo my journey with diabetes.

My brother says the streets of Boston follow the meanderings of drunken cows.  Getting from the Red Station to Divinity Street, Harvard seems to have merely paved the wandering paths created by students straggling from one building to another.  Unlike the U of I's quad, whose paths form squares and triangles, Harvard's paths seem like a toddler's scribbling.  Two paths run parallel then veer off in slightly different directions. Illinois city streets and county roads are laid out on a grid.  Negotiating them is done with algebraic simplicity. To get from A to B, you go up so far and over so far. No wonder all the directions people gave me consisted of vaguely waving over that way.

When first diagnosed, I approached diabetes as a Midwesterner.  It's not a new disease.  Millenia old.  They gave me I:C ratios and correction factors and I thought I should be able to get this easily. Do this. Do that. But LADA doesn't behave linearly, logically.  My carefully constructed equations don't work out as neatly as I calculated.  I miscalculate.  Too high.  Too low.  I thought if I just studied hard enough, knew enough, I could figure out the answer.  So I read, I studied, I plowed through research papers, attended lectures and watched videos of conferences.

And then I met the staff at Faustman's lab. Nice, helpful people.  The phlebotomist was particularly skillful. But I expected a deeper understanding of diabetes. I'm used to hearing the same old, same old. The people sitting beside me on the bus and train I don't expect to get it.  But the people working in the labs, in the hospitals and clinics, with my insurance, the journalists: that's their job, what they are paid to do.  And time after time, they are the least informed, the least curious, the most mired in the past.  It's frustrating.

And I am realizing that the street I was heading for isn't Divinity either.  I turn around and look for someone new to ask.  Harvard campus is really big.

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.