Friday, May 29, 2015

Pain in the arm

Sloane Stephens defeated Heather Watson at the French Open
I got settled in to watch the French Open on my computer during photopheresis yesterday, but I was unable to concentrate due to the pain where the needle had entered my arm.

My nurse for the day said it was OK to use the same arm as the day before, therefore we did my left arm again so I could have the right one free. Maybe that was a problem.

She put a warm pack on it but still the pain continued. She told me the blood was flowing nicely and she didn't want to change it.

After two Tylenols failed to help, I asked for an oxycodone. Although it is on my med list, a minor hullaballoo ensued. My nurse said I could just take it when I got home, which obviously would not solve the problem of pain that threatened to last three hours.

I tried with my free hand to email my social worker so she could come over and explain to them that although I use it sparingly, oxycodone is preferred for me over Tylenol and Advil in certain circumstances. This hardly ever happens, but tears started to roll down my face. Finally the physician's assistant got me five milligrams. By this time it was near the end of the procedure, so it had just begun to kick in when my time was up.

At least I laughed out loud when watching the latest "The Daily Show" episode.

Afterwards, a different nurse came over and said the needle must have hit a nerve. She added that it really should have been moved.

Well, today I am off to New York for  a weekend with friends from Friends. We are going to take a walking tour of Harlem, walk across the Brooklyn Bridge, have dinner at one of our standbys, Deux Amis, and also at Don't Tell Mama, followed by cabaret in the bar.

I hope to leave thoughts of needles behind.

Thursday, May 28, 2015


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.

Saturday, May 23, 2015

To Boston and back in a day

I couldn't complain about the musical taste of the driver who took me to Boston yesterday because,

1) It wasn't my car
2) He wasn't my kid
3) It would have sounded old-ladyish to ask him to turn the radio down, and,
4) I knew he wouldn't have received it well if I had asked, "Could we listen to NPR instead of to rap?"

But he seemed to understand when I asked if he would change the station when a singer wailed, over and over, "I miss my dog, I miss my dog, I miss my dog!"

I told him I loved my own dog very much and it upset me to hear those words.

Of course I also can't complain because the ride was covered by insurance and I got to doze on the way there and back. It was a one-day excursion to Brigham and Women's Hospital for me to check in with one of my slew of doctors, a gastroenterologist, who I see now and again for follow-ups on my graft vs. host of the digestive tract. I wondered if stomach problems that I have had for the last two weeks were related to a flare-up; he said that it was hard to tell and that it might just be a virus that is taking its time. If I am not better in a week I will probably be facing another endoscopy. I wonder if it is from stress.

He is one of the rare doctors who runs on time.

As usual, I brought enough reading material to last for hours.

When I was called on time, I was careful not to say, as I did at my last visit in a similar circumstance, "I think I might faint!" As you can imagine, the nurse at that time looked at me in alarm. Not a good thing to say in a doctor's office.

I was tired when I got home, even though I had slept in the car. Not a good kind of tired. I put on my running clothes because in the not-to-distant past even a short jog would have perked me up. But then I remembered that I had decided the running gods were telling me to stop because I have been unable to find a new version of the neutral trail-running shoes that are the only ones Ken Holt likes for me.

The peanut gallery and even Dr. Berger, an avid runner who until recently asked me when I was going to run the Saint Patrick's Race again, have said that especially with the graft. vs. host, my body might not be able to handle it any more without injury. Actually Dr. Berger said I probably couldn't run the same distances as before, which is not the same thing as totally stopping. I think I would be happy with just a couple of miles a few times a week, starting with a walk-run instead of just running like last time when I re-injured my toe.

I called the Northampton Running Store, where the real runners work, including Northampton's own Nancy Conz, and explained my dilemma, which is that Ken Holt hates most of the shoes that I buy.

She said she knew of his reputation for toughness and added, "Ken Holt needs to come into the store to see what we have."

What they have sounds promising, so tomorrow I might just go up there to take a look. Perks me up to think about it.

Wednesday, May 20, 2015

'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.

Monday, May 18, 2015

Restless night

I did what I said I wouldn't do – work before bed – and I didn't do what I had said I would do – take an Ativan around 7 p.m. or so.

I did sleep this time but I woke up at that 4-a.m.-ish hour when it's too early to get up but you can't get back to sleep. The craziest dreams ran through my head all night.

It's easy to know where some of our dreams originate. In one part of my dream, my parents and Diane were in the front hallway and my father looked great, his face filled out and glowing with health. (My kids got a kick out of my mother meeting us in the hallway and saying, "Come inside," because we were already inside. Might be a New York thing.)

But anyway, then my father started to say nonsensical things. My mother, Diane and I looked at each other and knew we had the same concern: What if he was getting Alzheimer's?

I had read The Last Day of Her Life, the New York Times Magazine's cover story about a woman who decided to take her life after learning that she had Alzheimer's. If you read it you will think about it for a long time.

On the positive side, I got a call last night from the driver who is scheduled to pick me up today and take me to Dana-Farber. I asked him if he was the bozo who drove off without me last time (no, I didn't really say that, but I did ask if he was the same), and he said no. I told him what had happened and he said he would be sure to call me if there was a problem.

But first, off to probably the last indoor tennis clinic of the year!

Sunday, May 17, 2015

Some like it loud

The sounds of a newsroom on deadline had me from the start, with reporters at the old T-T writing furiously on manual typewriters, ripping actual paper out and crumpling it up, the alarm sounding when an important story came in over the wires.

Although computers had replaced typewriters by the time I got to The Republican, the newsroom could still get noisy. Someone gave me a sign from Wimbledon that read Quiet, Please, and if reporters and editors talked loudly around me when I was doing a phone interview, I would hold up it up. It was a lot of fun and although I still have nightmares about work – no chair, no computer, no light – I miss the camaraderie.

So I felt comfortable yesterday when I went to the Thirsty Mind to write. It is reunion weekend at Mount Holyoke, and as more people came in, the noise level rose to a din. Rather than distracting me, it formed a cocoon around me and allowed me to write.

I often do fine sitting at the kitchen looking out at the garden, but too many distractions compete for my attention at home. Still haven't cut down the dead stalks from winter! Laundry needs to be put away, the kitchen cleaned up, bills paid, and biggest distraction of all, the stack of papers pertaining to my travel arrangements is in my line of sight.

I could clear the decks and put it all away, but still I would know it is there. Get out of the house, get away from it all.

Everything on my end is in order for my trip to Boston tomorrow. I will be waiting at the end of my driveway. I wonder if I will have the same driver who left without either coming into my driveway or calling me from the foot of the driveway last time. I think I won't ask; it might make my blood pressure rise.

The drivers you get through The Ride within the Boston area will take you on errands.  When I drive myself I have been stopping at a supermarket near Margaret's to bring watermelon and blueberries. I am now the watermelon lady. I don't like to arrive empty-handed.

 It's great to have friends who make you feel at home. Margaret has dubbed the guest room where I sleep my own room. Natty brings my bag up. Nick offers me a drink. We talk about politics and other interesting topics and then it's early to bed so I can be picked up at 6:15 (I hope) to return for the second round of pheresis.

Friday, May 15, 2015

Brain teasers

Due to long hold times for getting through to an operator with The Ride, I used the automated system to set up my "mini-rides" next week from Dana-Farber (450 Brookline Ave.), to Margaret's (945 South St. in Needham), not to be confused with the longer ride from South Hadley,  the troublemaker last time.

At first I was told that 945 South St. was an invalid address. So I tried again and got a message saying you cannot go to and from the same place.

I pressed zero and walked around with the phone on speaker while waiting to get a real person who didn't think two different addresses were the same. As often happens when you are on hold for a while, I was surprised when someone answered.

I asked to be picked up at 6:30 p.m. Monday at Dana-Farber after my photopheresis, driven to Margaret's, and then picked up at Margaret's at 6:15 a.m. to get back to Dana-Farber for the second round starting at 7.

"We can't schedule a ride before 7," the woman said.

I replied that it had been done last week, although then canceled because I had my own car.

"The earliest we can get you there is 7:15," she said.

She reconsidered, then put me on hole and came back with a different answer.

They could schedule me to be there at 7.

Question: "What time would they pick me up?"

Answer: "We can't tell you that because we can't schedule before 7. The driver will call you the night before to let you know the time."

This does not breed confidence.

However, I was happy to get through immediately to a real person when I called to confirm Monday's ride from South Hadley to Boston and book others. She was super nice and scheduled them through the first week of July. She then had to go for the day, but she said that she would call me back on Monday to finish up so that I would not have to be on hold forever.

Her name is Ramona. I need to follow up and put in a good word for her. Nobody has offered anything like that before.

I have stories to write, and I will get them done, but all of this scheduling is gobbling up chunks of time and energy.

This extends to figuring out when and where to see doctors, too. For example, I have gotten bounced around when trying to schedule an appointment with Dr. Liu, the dermatologist who is overseeing the ECP. She works out of three offices; one person tells me to call another person who tells me to call another person who asks me why I am calling.

I have had success in contacting my main dermatologist (yes, I have two) through email.

I just wrote her and Melissa asking for Dr. Liu's email so I can hopefully avoid all these phone calls.

The last line of that email was: Stress level rising.