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.

Wednesday, May 13, 2015

River view, recovery mode

Connecticut River view from Canoe Club
George's "air-conditioned" court by the river
It was great to be outside playing tennis on the clay courts at the Holyoke Canoe Club from 9 a.m. to noon, with a view of the river, as opposed to having a needle in my arm from  8 to 10 and 11 to 2 at Dana-Farber, albeit with a nice view of Boston.

The conditions were tricky, with the wind whipping up clouds of clay. I could hear my father's voice: "You can't complain. Tennis is an outside sport."

As usual, George's Wednesday clinic was fun, with something always to learn and good partners and opponents.

Still, I did not have my usual joie-de-tennis. I am drained after working so hard to stay on top of my logistical challenges the past two days.

When I got home last night I expected to crash, but instead, deprived of my daily exercise, I could not settle down. I stayed up past midnight but still woke up at my usual early hour. The short night probably accounts for my flat-lined feeling.

The words of support that people wrote yesterday helped immensely.

Hopefully I can get to sleep earlier tonight.

Tuesday, May 12, 2015

Too good to be true

The following saga could be called a comedy of errors, but so far it has failed to make me laugh, so let's call it a dramedy.

It starts at 11:55 a.m. yesterday when, following Joe's advice to not get distracted after getting home from tennis at 11, I was ready and waiting at the window five minutes before the scheduled arrival of the cab that was to take me to Boston so that I would arrive well before my 3 p.m. pheresis appointment at Dana-Farber.

When the cab had not arrived by 12:15, I called the insurance company that had set it up, but I could not get through. I called Hannah at Dana-Farber to say that in a few minutes I would have to leave. She didn't call back so I knew I would have to drive. I was so frustrated that I started to cry. So I said to myself, "No crying while driving. You are not being shot at or bombed. Nobody died. It is just an inconvenience."

That settled, I got on my way. Hannah, meanwhile, called and said she had learned that the driver had called me in as a no-show at 12:11. Which. Did. Not. Make Sense. Then a suspicion dawned on me. I wondered if he had waited at the foot of the driveway instead of coming down the driveway. The doors of my house face into the driveway. If he had waited down there I would not have seen him. Later I discovered that this was what happened. I guess it was easier for him to drive away than call.

Meanwhile, Hannah said she would cancel the rides I had scheduled through The Ride, which takes people around in the Boston area. A car was to pick me up at Dana-Farber around 6:30 p.m. and take me to Margaret's and then get me in the morning to go back for today's procedure. That message didn't get through, so when I was at Margaret's, a driver called from Dana-Farber asking why I wasn't there to be picked up.

I could only get five out of six cycles of ECP yesterday because the procedure had made me too anemic, hematocrit of 27.8 I think. So this morning I had to get blood at 7 a.m. , followed by the ECP at 11. I arrived at Dana-Farber early to get something to eat, and, finishing breakfast early, I got onto the elevator at the third floor where the dining area is and pressed the button to go up.

A security guard barked at me, "Are you a patient? Are you a patient? You can't go past 3 until 7!"Since the elevator had already gone up to the floor where I was to receive my blood, I stepped out for a minute to ask the receptionist if I could wait for 10 minutes. As the door closed behind me, I could hear the security guard saying something about me to the other people in the elevator. By the way, yes, it was true, but she had only to tell me that, so I rode back down and then rode back up.

Penthouse suite for transfusion at Dana-Farber
While getting the blood, I was buoyed by all the supportive comments on Facebook after I posted a photo of my penthouse view and explained the situation (much more briefly than this!) But when it was done, I lost it, the last straw being the only person at Dana-Farber who had ever talked to me like that. My blood pressure, which they check periodically during procedures, had shot up by the end of the infusion.

I told my nurse, Mary, that the security guard had talked to me like I was a criminal. She called Kathleen Hovath, manager of the patient/family relations program, who asked me to see her when I was done. Mary was so sweet that I was already calmer. Kathleen asked for a description of the person in blue and a description of the incident. She said that should never happen and there would be a meeting of that staff to discuss.

I got to the Kraft Donor Center all pumped full of new blood and ready for more to be taken out at my 11 a.m. procedure: three hours, six cycles.

I'm going to like it there, my new home-away-from home. All of the nurses are so friendly, offering baskets full of sweet or salty snacks and doing everything to make you comfortable.

HOWEVER, I was just dozing off when somebody called my phone and in a loud and at first incomprehensible voice said he was downstairs waiting for me and where was I.

I realized that this was the driver who was originally supposed to pick me up at Dana-Farber and take me back home. So, the people who had forgotten to tell driver #1 to call me from the bottom of my driveway had forgotten to tell driver #2 to cancel the return trip since I had driven myself.

I got home without incident and actually showered and got dressed up to go to New England Public Radio's Arts and Humanities Awards program at the Log Cabin. I had paid $75 because I am a loyal listener and I like to contribute when I can. Plus, I wanted to see many of the people I write about. Also, it was dinner. But it was too late for the ceremony, and although I could have gotten there for a buffet and dancing,  I grabbed a banana and a glass of water, danced over to the couch, and turned on last night's "Daily Show."

Meanwhile Hannah found out that some of the drivers will not come down a driveway. She asked if I was fine with just waiting outside, and I said that of course, as long as I knew. Rain or shine, I'll be down there, hoping that it is not too good to be true.

Sunday, May 10, 2015

Spinning into Mother's Day

When I told George on Thursday that my right arm hurt, he said it was probably due to hitting outside on the clay at the Canoe Club Wednesday; the first time can be hard on your arm because the ball hits the racquet differently.

But then I noticed it was black and blue where the needle had gone in. The needle bothered me on and off during the whole session Tuesday. The nurse said that it was in the right place so she just kept applying heat. But this morning there was a black and blue mark down the side of my forearm. I will have to point this out tomorrow, for what it's worth.

It's nice to have a friend who is in nursing school. Instead of diagnosing each other while walking around the lake based on our hunches – usually saying, don't worry it's probably nothing – I can now get a medically-based opinion from Deborah. She said not to worry, she has seen much worse.

Mother's Day was wonderful. I started off with spinning at the Y, figuring that I would earn the brunch we were planning. It was a hard class, and I was dripping with sweat to the point that there were droplets on my glasses. All the instructors provide different motivations. Maggie said something like,  "Think of your strong body and your strong spirit."

 Back straight, heels down, music blasting, stay with the beat, up and down, up and down. Not my typical taste in music, but I love it for spinning. What a way to clear your head.

Carly, Deborah, and Ben and Webster came over around 11, giving me time to shower and recuperate. Joe made a delicious breakfast bake. We had bagels, coffee cake, fruit and coffee – a meal that would make my mother-of-the-famous brunches proud. I pointed out that only the Nova (usually bought from Petach's on Madison Avenue) was missing. That didn't matter because it probably would not have been popular.

As I threw my biking shoes on the floor in front of the passenger seat in my car after spinning, I noted that it is a veritable athletic locker: tennis racquet, balls, yoga mat, tennis shoes, baseball cap (from Wednesday's outing), and, on top of that, the biking shoes.

It's good that I'm getting a ride tomorrow because I won't have to look at all that. (Actually I don't mind because otherwise I would clean it up.) Most importantly, I won't have to worry about driving through Boston traffic.

Unlike doctors' appointments, ECP at the Kraft donor center runs on time.

The cab or car (or whatever it is) is scheduled to come at noon. That should be plenty of time to get there at 3. First I'm going to Enfield to one of Michael's last point-play clinics of the year. That ends at 10:30, so I am not giving myself much leeway. But if I'm packed and ready to go I should be OK.

Gotta get that exercise in first!

Friday, May 8, 2015

Where does the time go?

Proud Mama.
Earning a master's degree is a major accomplishment, but the graduation is not the same kind of life event as a graduation from high school or college. It's more businesslike, without the fun, the partying and the festivities leading up to it.

This was the way I viewed my own graduation when receiving a master's degree in journalism from Boston University. I even told my parents not to come from New York. I already had one foot out the door, so to speak, having gotten a job at the Holyoke Transcript-Telegram before graduating. It seemed anticlimactic.

When the day of the ceremony arrived, I changed my mind. I called them and
Kindergarten grad.
asked them to come, and they hopped on the shuttle from New York to Boston.

I could see them arriving in the crowd just as I received my diploma. Afterwards, we went out to a lovely lunch at the Copley Plaza. I was glad that they came.

I am so proud of Joe for earning his MBA and Master of Sport Management from UMass. I could see all the hard work he put into it. But I was surprised at how emotional I got the night before.

When looking at that sweet little face in the kindergarten graduation photos I put on Facebook, I got teary-eyed and wondered, like we all do on big occasions, where did the time go.

Wednesday, May 6, 2015


A weight lifted off my shoulders when I found out almost by accident that my health insurance covers transportation to and from medical appointments.

That's right, taxis from South Hadley to Dana-Farber and back. Not only can I start it next week, I could have used it all along. And to get around to Margaret's or Diane's for spending the night, I can use The Ride, an MBTA program costing only $3 per ride.

I wish I had known about this before. It would have saved miles on my car, money spent on gas,  and fatigue and stress while driving.  But, cliche appropriate here: It's not good to look a gift horse in the mouth.

Esther, my nurse on Monday, had heard me talking to a representative from the Leukemia and Lymphoma Society about a patient travel assistance program application that I was trying to fill out with one hand. She said that Dana-Farber had helped other patients resolve transportation issues, and she offered to email Tammy Weitzman, one of the Dana-Farber social workers. Tammy called me immediately and said that a woman named Hannah-who-works-very-quickly would get on it, and sure enough, the next day Hannah called and said she had taken care of it.

I talked to Hannah today to get the phone numbers for making reservations and another for setting up a Ride account and depositing money into it. My pickup in South Hadley is scheduled for noon on Monday. Thankfully I can sit back and let someone else handle the traffic.

By the way, Hannah is Hannah Kitzmiller. She works in Patient and Family Programs and Services.

Four ECP sessions down. Only 20 to go.

It was quiet Monday in the section of the Kraft Blood Donor Center devoted to ECP, but yesterday morning the place was humming with activity. I dozed on and off through it. A nice pathologist who walked around checking on us said you just have to get into the groove of boredom.

The needle in my arm hurt on and off but felt better with a heating pad on it. The challenging part is  hardly moving for three hours.

It took a few minutes for me to straighten up after getting out of the chair.

"Oil me," I said.

Monday, May 4, 2015

Sleepless in South Hadley

The Mount Holyoke clock has chimed five times, the birds chirp louder, and I finally decide to get out of bed after being awake since 3 a.m., trying to get sleepy to no avail through a 10-minute meditation on the free Headspace app on my iPhone, a head-to-toe body scan for relaxation, and telling myself how tired I will be when driving to Dana-Farber if I DON'T GO BACK TO SLEEP which of course only works in the reverse.

 Instead of Maddie waking me up, I wake her up. She comes over to me sleepy eyed, looking like she is wondering, "What are you doing?"

I peek at Twitter. I might as well get a head start on the news of the day. True confessions: I look at dating sites. I get a message from a man who likes my profile. He writes, "Looking for someone that enjoys sports. I am a Bruins fa. Watch the Patriots. If you play golf or are learning that part is great. It is not necessary to be into sports.I if you are great ,if you are not, not a big deal. Conversations is nice,excluding polliyics and religion."

Now this is me: thinking that since I am up so early I can watch Morning Joe from the beginning, and that might not even give me my fill of politics for the day.

 I am not nervous about the trip to Boston and the two days of ECP. It is just the rigmarole.

Also last night I violated my own rule: No writing before bed. Put the computer away and read a book or The New Yorker.

But the muse appeared, as did Trader Joe's Soy Creamey Cherry Chocolate Chip non-dairy frozen dessert, which spoke to me from my freezer. (Cherry Garcia without the dairy! No prob!) This was after 9 p.m. It was not good, especially since I started a story for the Italian-American series but did not finish it. Instead, my mind tried finishing it when it should have been resting.

Last Sunday night I took half an Ativan (5 mgs.) before bed, like I used to do in the old days when I was nervous before appointments. But I took it too late, causing me to oversleep the next morning and be late to tennis and rushing to everything else.

I didn't take it last night, but I think I should until I get this routine down. I just need to take it earlier, maybe even 7 p.m., because it lasts longer than I realize.

I hardly ever use it (my bottle from October 2014 still has pills in it) but this is definitely a good use.

Sunday, May 3, 2015

The day after

Spinning was so much fun yesterday that I signed up to go again this morning.

But as my legs started to stiffen up when I went to a post-event carbohydrate loading meal with Mary and Jerry at Mulino's, I suspected that my body would not cooperate. Then when I woke up in the middle of the night so achy I had to take some Tylenol, I knew it was not to be.

It is like how your calves feel the day after the Saint Patrick's Road Race when you have flown down the downhill near the end, thinking how wonderful it is, only to have your calves complain the next day. An hour of spinning is different from the usual 45 that includes a cool-down period. I thought I stretched enough – and even went to yoga afterwards – but it was not enough.

Oh well, no harm done. I have many other things to do. This includes getting organized for my trip to Dana-Farber tomorrow so that, unlike last week, I am not doing last-minute things that cause me to have to rush and feel all stressed out when I encounter traffic in Boston. Gas up the car today! It should be a no-brainer but last week I didn't do it because I thought I would have more time after tennis than I actually did.

Must get that tennis in before I leave. We tennis nuts have to keep our priorities straight.

Sorry to go on and on about my foot, but I have one more thing to say. I got an X-ray last week. It showed arthritis and a bone spur, which to me doesn't explain why the pain sometimes extends across the top of my foot, but anyway that was the verdict of the orthopedist. Score 1 for Ken Holt (the physical therapist with a Ph.D. in biomechanics) and 0 for the podiatrists who had told me to wear the boot. Ken said it was only making the problem worse and called it an "instrument of torture." The boot gets the boot.

The orthopedist, Dr. K, knows Dr. Holt and agrees with his approach of building up the middle of the orthotic and wearing firm shoes. Since I can only take Tylenol or ibuprofin sparingly, she recommended the topical cream capsaicin, which is the active ingredient in chili peppers.

It helped but caused a strange side effect. The instructions said to wash your hands thoroughly afterwards, which I did. But then at night I had trouble sleeping because the fingers on my left hand that I had used to apply the cream started burning. I washed my hands again. Then in the morning I splashed water in my eyes, and that left eye burned like crazy. My fingers burned throughout the day until I got the brilliant idea of putting the question to google, and as happens when a question has been asked before, filled in the rest of my question, which was, does capsaicin cause your skin to sting?

The answer was yes. I found the remedies on a cooking site because it happens when people cut up chili peppers also. The remedy appears to be putting your fingers in mayo, cottage cheese, yogurt, milk or anything creamy. I put my fingers in a cup of milk and sure enough, the burning went away.

The next time, I applied it with a cotton ball which I held with a tissue. Another example, however minor, of a remedy for one thing causing a problem in another area.

Saturday, May 2, 2015

From the bed to the bike

Julie Chartier and me
Here's a good way to motivate yourself to get moving on a Saturday: Pay $50 for an hour-long a.m. bike ride.

The money was actually a well-spent donation to the Holyoke YMCA though its second annual Cycle-a-Thon. It lasted from 9 to 12:30 and I don't know if anyone rode all that time, but an hour was plenty for me. I had no idea there would be a DJ, a beautiful spread of food and even a T-shirt. I'm glad to support it because the Y has so many good programs and has been a big factor in my regaining my strength.

I felt pokey this week and exchanged emails about it with Melissa, who reassured me that it was normal after two consecutive days of getting your blood sucked out. I rested when I got home Tuesday and then gradually got back into activities, first with yoga, then tennis and after that swimming, which is not as much but feels good when you stop. Activity breeds energy, like a windmill creating  electricity. I have gotten better at knowing when to stop and when to push.

It was strange to go from the blasting music at the Y this morning to the gentle music of yoga afterwards. But I don't like to miss Justine's Saturday morning class at Serenity Yoga. I didn't have much left for Maddie's walk, but we went for a spin, so to speak.

I'm happy to be working with my editor Mimi Rigali again, contributing stories to the Republican's upcoming book on Italian Americans in Western Massachusetts, part of the paper's Our Stories series.

I still have my Mass Confusion tennis towel!
It's interesting how friends cycle through your life, cycling out and often cycling back in.

The nurse told me that sometimes people work during extracorporeal photopheresis. I don't know how they do it with only one hand available.

When exchanging emails with Mimi, I typed without capital letters due to being unable to hit the shift and a character key simultaneously. I wouldn't want to write a whole story like that, but I guess if I was inspired I could do it and tidy up later.

I basically have a three-day week, which is fine because the deadline is a ways away.

After all these years of being away from the newspaper, I still have nightmares about work: no chair, no computer, bad lighting, impossible deadlines, being told I'm not producing enough, all the reporters' desks lined up in a row at the front of the office (with no place to put your stuff) so that the editors could keep an eye on us and we wouldn't goof off.

But last night I had a better dream. I stood outside the paper looking into a room where a small group of employees was singing at a goodbye party for someone who was leaving. I walked in and told (executive editor) Wayne Phaneuf that I missed the camaraderie, which is true. Now in a way I'm working for the paper but without the pressure, sitting at my own table with a chair that is not broken and nobody waiting for me to go to the bathroom so they can steal it away.