Sunday, May 15, 2016

Riding in cars, tracking down doctors

When we left off, I was frustrated and annoyed. I had finally secured a dermatology appointment but the car service that was going to take me canceled and I was unsure whether I could even get to Boston. Well the driver who came was one of the more interesting ones in a good sort of way. Proof that it doesn't pay to get worked up because you never know what the outcome will be. Easy to say in hindsight, though.

He had lived in Florida but moved to Springfield at his brother's urging and was sorry he did. He couldn't find work as a heating and cooling technician so that's why he is driving. When we started chatting about how we ended up where we each were, I said I had moved here for a job at an old paper in Holyoke.

"Oh, the Transcript-Telegram," he said. Turns out his brother had been a delivery boy and sent him copies of stories from my old paper. When I said I grew up in Manhattan, he said, "Oh the Flower Garden." That was strange because it is right across the street from our apartment and is a place that my mother loved to paint. You can make connections in some of the most unexpected places.

I told him how nice he was and that I had not had many like him. He said he knows all about some of the drivers and also said the dispatchers and owners can be the worst, not caring how long they make patients wait.

I don't think he realized that he was philosophizing, but when we got close to Boston and he saw that there was traffic along the route, he did some maneuver that I couldn't replicate because he did it so fast. I thought what he said applied to life in general and to anyone in a tight spot, or to me on the way to Dana-Farber, so I tweeted what he said.

On the way back the driver was also interesting – a UMass history graduate who couldn't find a good teaching job and was driving instead. But I think I'll have to report the company, which kept me waiting for two hours. The driver said he had told them that he couldn't get me on time because a truck had caught on fire in the O'Neill Tunnel and traffic was backed up for miles. He even sent them a picture.

They had enough drivers but basically didn't care. They are supposed to call with updates about delays, but they never did. Every time I called, the dispatcher said he would be there in 5 or 10 minutes. My appointment with the dermatologist was only about half an hour, but the day was draining due to all that waiting around.

I had recently noticed that Francisco Marty, the infectious disease doctor who always made me smile no matter how sick I was, had started a Twitter account. So when I walked in the door, I sent this:

I'm , checkup w/Melissa after blood draw & internal sunburn at 3!

The first time he asked me how the internal sunburn was going, I didn't know what that meant, but I came to understand he was referring to the light therapy, or the ECP, that is treating my GVHD of the skin.

Melissa Cochran, moi, & Francisco Marty
When I went up to the eighth floor for my appointment, he was there with a big grin on his face. He held the camera for this selfie. Then I went in for my appointment. Everything was fine except that I pointed out that my hands had gotten swollen again and my skin on my thighs and my stomach was funky again with a dimply appearance and hardening of the skin.

It seems like I wasn't ready to go to every three weeks. So I'm going back to two. I pre-medicated again with oxycodone on Wednesday, but I'm not going to make a habit of it. I'll tell Ellen or take it myself if it starts to hurt at the 4th cycle (out of 6).

On Thursday I woke up with a bad headache. The same thing happened the last time I took it.  I looked it up and this narcotic headache  commonly occurs when people take opiods too frequently. Actually when I took them frequently in the hospital I don't remember getting a headache but now when I hardly ever take them I do.

The spot on my face that I was worrying about turned out to be not much of anything But it is a good thing that I went because the doctor, Stephanie Liu, is the one who originally recommended the ECP. She confirmed that I need to return to every other week. She froze the spot on my face and as usual, zapped away at other spots on my neck and my hands

No comments: