Driven to distraction, driving towards NY

Grown-up kids at dinner with mysterious object

Been driving a lot because...

On Wednesday I reserved a ride for the trip to Dana-Farber. I got the confirmation call the night before, and then, the day of, a call from the driver, who asked if I wanted a ride at 2.  I said yes.

So I packed up and looked out my driveway, and when at 4:06 there was no driver, I called the number he had used to call me. But I got no answer and no voicemail. I called over and over until about 4:15 and then finally gave up and called the complaint line at MART, which arranges the rides.

I got put on hold and then told that the driver had left, listing me as a no-show.

WHAT?

I said.

"I've been waiting at my door."

The operator said she would file a complaint for me but in the meantime I was on my own.

It was a company (Prevalent Transportation, one of the contractors) that has taken me a zillion times before, and they know to come in the driveway or I can't see them. This happened once before when a driver waited at the foot of the driveway, didn't see me, and left without calling. If they don't see me, they can call! They usually do. The last time this happened, the operator told me they are not obligated to come into the driveway or to call. I imagine the guy just didn't feel like doing his job.

I called my people in pheresis at the Kraft Family Blood Donor Center at Dana-Farber and asked what was the latest I could get there. They said 4:30. A friend said he would drive me but by the time he got to my house I would never make it. So around 2:30 or a little after I jumped into my car and sped off.

I made it exactly at 4:30. They were impressed. I was wired and upset.

My nurse for the day, Marlene, tried twice to thread the needle into my left arm. Twice, it hit a valve and would not go in. I didn't have the help of my oxycodone because I couldn't take it and drive. It was unpleasant but I did some slow breathing.Tina, another nurse who was there, gave it a try on the other arm and went in successfully. They said it would go faster if I tried a double – not exactly the technical term – meaning one in each arm. This is possible with the new machines. I said I wouldn't mind but I would wait for a time when I had my pain meds in case I had a problem.

I started to take a little nap when the procedure was under way, but a doctor came over to talk, so that was that. Mandy is a nice pathology fellow. I showed her some of my medical writing, such as what it's like to live with two sets of DNA, and my most recent, on how treating neuropathy can be a pain. She said I should go on TV to tell my story of the four bone marrow transplants. I said I didn't know how to do that and wasn't sure if I wanted to anyway.

I finished around 7 and got back home around 9, pretty tired. It wasn't the best timing, because the next day I had planned to pop down to New York to see some friends and family and do some of the usual things such as run in the park.

I did it anyway. I parked in New Haven and took the train to Harlem and then went on to my cousin Jeanne's. As you do when in New York, I walked all over the place. Yesterday I did around 17,000 steps.

Some of us had a nice shabbat dinner on Friday. It was extended family, kids and a baby. Time flew. I was compelled to mention this while looking at my high school friend's children and a grandchild. I thought we were just in her room making lists of the boys we liked.

For dessert, I was surprised with a pre-birthday cake. Sweet! (One Donald Trump sentence structure allowed per blog post.)

Yesterday I ran a little more than four miles to and in the park and up to the reservoir. I considered going all the way around, but I looped back on the bridal path instead.  For someone who really isn't running, I figure that isn't too bad. 

There was so much activity that I thought a race was going on, but one of the runners said it was a training run for the New York Marathon.

After leaving the park, I got a bagel and a coffee and sat on the steps of a church on Lexington Avenue about 10 blocks south of 86th and Lex, where my mother's store used to be. Lexington Avenue feels in many ways the same, but the block where my mother's jewelry store used to be has totally changed. It's one big blob instead of small stores such as my mother's and Reggie the dressmaker's.

I was going to leave after my run but headed over to UN Plaza to visit my 98-year-old aunt again. When leaving New York I tend to dilly-dally even more than I do at home. I knew that I would be tired after picking up my car in New Haven but figured I'd caffeinate and get through it.

On the way to the 125th Street/Harlem train station in an Uber, I looked around and realized that I had left my laptop in Jeanne's apartment. We were already at 106th Street and would have to go back to 72nd. I asked the driver if he could turn around, but, of course, it is not so simple in an Uber. I had to send him a text message with the "new" address (the address from which he had just picked me up ) and an explanatory note and then re-enter the final destination. It's all in the app, so there was no such thing as using old-fashioned words to tell him, I later realized. Also, we had a bit of a language barrier. It was cumbersome and made me wish I was in a cab.

At $32, it was a pretty expensive trip. I don't know if a cab would have been better or worse. 

Having missed my originally chosen train, I got on the next one with a few minutes to spare and promptly fell asleep. Once at the train station in New Haven, I went to Notes on my phone to check my parking space number and saw that I must have not hit SAVE: The field was blank. Another fine kettle of fish...

I told the people on the elevator what had happened, and one man said I could get off at the sixth floor and just walk down. I remembered parking pretty quickly on the first floor, so I asked the elevator people what they thought about my starting at the bottom. "You could have lucked out," a nice woman said.

So I rode up with them and then rode back down, got out, and looked around for A-1 or something like that. I clicked the door unlock on my keys. A faint beeping grew quickly louder. 

Mirabile dictu!

I found the car, got in, and arrived back home around 9 with no more mishaps.

Today I was tired but still glad I went.

Cockamamie

The transportation stories get weirder and weirder while the photopheresis gets easier.

So the thing that would seem simpler – getting from one place to another – is more difficult than a complicated medical procedure.

Let's start with my ride from South Hadley to Boston yesterday. They scheduled the pickup at 1. The previous rides were at noon, which made more sense for getting through traffic to Dana-Farber by 3, but it wasn't up to me.

I went to George's clinic at 9: a great way to head into the two days of ECP because it made me tired and happy. I left early at 11:30 and stopped at the store to get a few things. About 12:15 I got a call from the driver saying he was 20 minutes away from my house. When I told him the ride wasn't scheduled until 1, he practically shouted at me: "I want to go to Boston! You mean I have to wait around?" I told him I would move as quickly as possible, and, remembering the first fiasco, I said, "You can't leave without me."

I got home before him, took a shower, and was ready at the originally scheduled time. When I went out to the driveway I saw the car but no driver. The other ones had helped me with my bags, but when I located this one I saw that he was smoking at the edge of my driveway. He didn't budge until I had gotten everything into the car myself. He went the slower way into Boston, through traffic on Route 9, complaining on the phone to someone saying he couldn't believe he had to take someone to Boston at this hour. Lovely.

Lovely, on the other hand, (I can hear Jim as my editor at the T-T making fun of that phrase: "On the other hand, I have five fingers," but it's my blog and I'm gonna use it) is a good word to describe my nurse. She made me as comfortable as could be, situating a pillow on my lap so I could rest my computer and my book on it, and getting me snacks that have become a routine: a package of mini Chips-Ahoy during the first part and Cheesitz and an apple juice towards the end. I thought I would read, but I fell asleep quickly and slept through almost the whole three hours. I told her I was surprised, and she said the machine does that to people.

Now we come to another little fiasco. When I had called The Ride on my way to Boston to confirm my cab ride to Margaret's, the operator said it wasn't scheduled. I was pretty sure I had scheduled it, but in any case I asked if he could put me in for a pickup at Dana-Farber at 6:30. With the same rationale as the last ride I had booked, he asked me what time I needed to be in Needham because he could only work backwards. I said I didn't care, it was just for going to a friend's house. This was unacceptable. I suppose I should have estimated the time it would take to get there, say, 45 minutes, so then he would be able to put me down for a pickup at the correct time. In any case it took a few go-rounds for him to get it. "You mean you want to be in Needham at 6:30?" No, and no, and no.

We finally settled on a pickup time at 6:30, but when I got outside there was no cab. So I called the dispatch number and the same man as before said that I was on standby because it was a same-day reservation. He said he couldn't guarantee a ride and I would have to sit there for an hour and someone might show up or not.

"You have to be kidding me! You didn't tell me that before!" I said. Too bad for me. These rides are often for people who are old or disabled. What if they were just left sitting?

Luckily Joe had put the Uber app on my phone. I put in for a ride, and a nice driver in a spotless Toyota arrived in six minutes. He took my bag and put it in the trunk. There is no meter, and I had no idea how much it would cost. I guessed $30, so I was pleasantly surprised when I got the receipt in my email and it was $24.05. The average cost of a cab ride would have been $45.

As I sat at the kitchen table telling Nick about this experience, I noticed the front page of The Globe had a story saying that Uber and Lyft drivers face $500 fines for driving without a license from the city. This is part of an ongoing battle with taxi cab drivers and cities against the popular ride-hailing services. Well, my ride certainly got me out of a bind.

With one more round to go today, I wonder what adventures await me.