'Fun' at Dana-Farber

This week's double-header at Dana-Farber was an about face from last week's, with transportation running smoothly and some socializing to be had.

A different driver from a different service took me both ways. He was courteous and on time and even called me when he was getting close. And he came into the driveway! He told me he is from Russia – Siberia – and he has lived in Boston for six years. His Americanized name is C.J., but his real name is Sergei.

I showed him the back way to Boston through Ludlow, and he was taken by the beautiful scenery. He remarked on the farms with cows and the lush trees, not the kind of scenery he saw in Serbia or Boston. Sometimes we take it for granted, and it's good to see it through new eyes.

The photopheresis was uneventful. I had dozed in the car (a luxury to be a passenger and not fighting to stay awake), so I wasn't sure if I would sleep, but I dozed some in the chair and also read the paper and watched the penultimate episode of The Unbreakable Kimmy Schmidt, which made me laugh out loud.

The cab taking me to Margaret's was on time too, and although I was not pleased that my pickup time the next morning was 5:50 a.m. for a 7 a.m. appointment less than half an hour away, I was glad that I got to spend a little time in Dana-Farber's beautiful Stoneman Healing Garden.

The rest of the day was nearly a social event.

I saw Melissa for a brief exam but mostly to check in. And who should walk in but one of my favorite doctors, Francisco Marty, whose beautiful photos I sometimes share on Facebook. We shared a hug and a laugh after he asked, "How's the internal sunburn going?"

It took me a minute to realize that he was talking about the ECP.

Since I wasn't sure how long I would wait for Melissa, I had left some leeway when scheduling my ride home. I ended up having extra time, so I walked over to The Brigham and went up to my old transplant unit, 6A. It was wonderful to see a couple of nurses and the aide who had bathed me in bed when I could barely sit up.

Going over the bridge from the Yawkey Center to the hospital provided the opportunity for me to pay it back for the many times people had shown me the way.

Two women were who were going to the Brigham were asking for directions, and since I was going that way I said to follow me.

I played tour guide along the way, gesturing to the birds carrying medicinal herbs on The Bridge of Hope and showing them the Emily Dickinson poem Hope is the thing with feathers that served as inspiration for the motif.

They were amazed by it all and said they looked forward to stopping on the way back to take a closer look.  I hope that wherever they were going, I was able to show them something that might make their trip easier just as other people have done for me.

Crossing the Bridge of Hope

The Bridge of Hope

On a day like today when I have appointments at Dana-Farber and at Brigham and Women's, I get a lot of exercise going back and forth over the bridge connecting the two.

So it was today when I had an x-ray and ultrasound in the old Dana Building and a GI consult at the Brigham.

The two appointments brought to mind the fact that five years can seem like a short time and a long time.

Being in the old building brought back memories of my first appointment there, of my bone marrow biopsies there, of the appointment where I learned of my first relapse and of the many hours spent in the close quarters of the waiting room.

I've had tests downstairs in the imaging suite before, but sometimes it just hits me, like it did today when I hopped up on the table, how at one point I had to be wheeled on a stretcher to tests like this and could not possibly have moved over to the table on my own.

The ultrasound technician scanned the lump on my thigh, checked out the results with a doctor and quickly returned to say that the area is merely a calcification, located, perhaps not coincidentally, under the scar from where my crazy dog Charlie attacked me.

Walking over to the Brigham across the Bridge of Hope, I almost always draw the distinction between the present and the past when I was either in a wheelchair or pulling an IV pole. The motif of birds carrying medicinal herbs was inspired by the Emily Dickinson poem, Hope is the Thing With Feathers, making the bridge such a peaceful place.

The GI specialist, Dr. Lo, meanwhile, said my problems probably stem from my Graft vs. Host Disease of the gut, diagnosed in 2009.

Dr. Daniel J. Deangelo with patient

I had totally forgotten about this, and nobody ever mentions it. I thought I only had two areas of GVHD, my liver and my eyes. Dr. Lo said it didn't really matter, because the treatment for all is the same: prednisone.

But there are still some unanswered questions, so he ordered more tests.

On the way out at the valet parking cashier level, one wall is covered with photos of Dana-Farber doctors. I always say, "Hi, Dan," to the photo of my first doctor, Dan DeAngelo. I don't get to see him that often since I have switched to Dr. Alyea, but I am always happy when I do.

So today I took a picture of his picture.