The trouble with (some) words

Newton haircut

While taking a little break from blogging (laying low) I did some of these things in a discombobulated way, not in order of occurrence: went to spinning straight from Boston in my street clothes, went to yoga in my tennis clothes, took a fabulous 20-mile bike ride on the Allegheny Rail Trail (part of long weekend in Pittsburgh and Hidden Valley, great friends, great food), naively/insensitively posted on Facebook and tweeted about a complaint I had with a company when I should have sent an email, got slammed, insults flying at me that you would never say to someone's face (fuckwaste of a human being, seriously?), did the wrong things (over engaged, overreacted) when, according to this timely post How to Deal With Twitter Drama, I maybe could have engaged for a little while but then should have walked away as the stress level climbed and I even cried; then, following advice of a son who said to think about why I'm tweeting (to promote myself as a writer and comment on the things that interest me, also, cute dog stuff allowed) — and who suggested going back and deleting all the threads of the conversation — went back and cleaned the slate, took a break, and restarted and rebalanced by sending positive vibes to the universe, complimenting other writers or liking and retweeting good advice and thoughts and Democratic points of view.

Since that might have been the longest sentence I ever wrote, time to start another. Gave the pep talk to another Dana-Farber patient who relapsed after bone marrow transplant (connection through the One-to-One program in which those of us who've been there help out those going through it), and she said she felt a lot better.  I said, as I said to previous patients, that I don't know if I should tell her every crazy thing that happened to me because I don't want her to get it in her mind that the same could happen to her, but that I would tell her if she wanted to know, to point out that I'm fine, going on eight years, and she said yes, please tell, because she needed to hear about a good outcome despite twists and turns. I told her what my nurse Vytas (who I miss so much), always said when he sat on my bed and called me Nervous Nellie: "They'll figure it out."

I sent some reading material, including Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML), in which my Dana-Farber caregivers explain the whole thing from its start in 2003. She asked if she could call and I said of course.

Interspersed with all of this, I managed to go to ECP, get a Newton haircut, go out to dinner with friends and see a great play at The New Century Theater in Northampton, play tennis at the Canoe Club before it rained, walk the dog, and watch Wimbledon, including the tremendous women's final.

Some other thoughts on parsing sentences and phrases: As previously noted, my skin condition backtracked after I extended the time between ECP sessions to three weeks instead of two. I quickly returned to two, but my skin has not bounced back to where it was. I showed Ellen, the PA, how the skin on my abdomen had hardened again (a result of the graft vs. host disease of the skin)  and she said she thought it might be something internal because my skin is OK.

"It's nothing to worry about...for now," she said.

"For now?" I asked. "What does that mean?"

She said it's just something they say.

I repeated this to the two nurses taking care of me and asked, "Does she think I have ovarian cancer?"
They both said to forget about it, it is common for your skin to take a while to soften up after backsliding. One of them said that the PA's modifier was like saying, "Your house is not going to burn down...for now," "That bus is not going to hit you for now," and, adding some more to make me laugh, concluded it was just a case of CYA (Cover Your Ass). Hello healthcare providers: This is not helpful.

Then there were the words the hairdresser told me upon parting, when upon the recommendation of a friend, I got a Newton haircut. I asked what he was going to do, and he said, "Give you the best haircut you ever had." It was a great haircut (twice the price of Western Mass, though), but he said a kind of odd thing, telling me that from looking at me he knew every bone in my body, which is why he can give a good haircut, and at the end of our visit saying, "I sense a lot of fear."

Say WHAT?

These things are the reason that when driving home Thursday and realizing I didn't have time to go home and change for spinning, I went straight to the Y in my street clothes. Luckily I had my biking shoes in the car.

It was so humid that the fitness class was canceled, but while sweating like crazy, I felt my brain calm down.

At night, another strange thing happened.

I heard a crash in the hall outside my room, but, half asleep,  I didn't get up to investigate. I thought maybe a robber was out there and wished Maddie was a barker. Then I decided it was just a house sound and drifted back to sleep.

In the morning, on the wall where an antique mirror in a wood frame used to be, there was only a piece of wood hanging from a wire. I looked all over and couldn't find the mirror. OK, I thought, so someone had come in and stolen the mirror. Then I saw it face down on the other side of the room. As I went to get it, I said, please don't let the mirror be broken, because then I would have worried that I was going to have seven years of bad luck.

Thankfully it was all in one piece so I had one less strange thing to worry about.

A day at the (Washington, D.C.) airport

I met a lot of interesting people yesterday:

These included:

An electricity consultant,
A biologist who works on scientific learning models for elementary schools,
A man, with his wife, who was trying to visit his 93-year-old mother,
A businessman who had just lost $4,000 in billing hours, and
A woman who was mad as hell.

We were stuck for almost seven hours in Dulles Airport in Washington, D.C., where United Airlines flight 3783 was scheduled to take us to Pittsburgh at 12:22 p.m.

I heard upon arriving at the gate at 11 a.m. that the flight was delayed due to mechanical problems on the plane coming from Norfolk. The plane had taken off but turned around. The estimated arrival time kept being pushed back by the hour. About 3:30, the flight was canceled.

We streamed over to customer relations. The next flight out, at 5:30 p.m., was full. We could get on the one after that, at 10:10 p.m., which sounded like a very bad idea, or get the shuttle to the other airport (Reagan) and get a 5:15 on American. Doris, the agent, was punching in the information that would get some of us onto that plane when our flight was reinstated after another plane came from somewhere to get us out of there.

We rushed back to the gate. Now, the plane needed a crew. A nice looking pilot stopped to talk to someone. One of my new friends said maybe he could take us. We talked about how much worse it was for the people who were stranded in airports overnight around Christmas. Still, that didn't make our own little purgatory any less annoying.

You might wonder what I was doing in that airport. I used to be able to take US Air directly from Bradley to Pittsburgh to visit my friend Emily, but after US Air merged with American and Pittsburgh lost its hub, you can't do that anymore. So I flew out of Bradley at 10:15, expecting to make the connection and get to Pittsburgh at 1:50 p.m. Washington seems out of the way, but actually, it is only a 45 minute flight.

There is a certain camaraderie in these situations – up to a point. I did a little chair yoga and some stretching, read my book and the newspaper, and talked to my new friends as we circled around the boarding area. One woman spread out her sweatshirt and fell asleep on the floor. Someone said they should give us a voucher for lunch, but this was not forthcoming.

Luckily I had decided in the morning that rather than spending $20 on bad airport food, I would make a sandwich and bring some snacks. That easy banana bread recipe that I have been making has been great; I make it with a little less sugar, throw it in the freezer, and it's ready to grab and go.

At 5:15, applause rang out when the  announcement came that the plane was ready and had a fresh crew. Meanwhile, passengers for that 5:30 plane were arriving. More chaos ensued when we tired people from the earlier flight and the relaxed newcomers for the 5:30 were told to line up together and walk out the same door to the two planes awaiting us. Someone said, Make sure you get on the right plane! They didn't make it easy.

I walked down the passageway and went to the first door, marked flight 3783. A Delta rep shooed me and the others down to the next door.

Once on the plane, we got a laugh out of that.

They even had the signs were reversed.

The pilot apologized for the "wee delay."

I am always happy to see Emily, my friend since the 7th grade, but I was especially happy yesterday.

More on my mind

Emily and I outside her house in Pittsburgh.

The rest of my stay in Pittsburgh was wonderful. We went to a lecture, ate out, hung around and walked in a large neighborhood park where Emily and her friend tricked me into walking four miles.

Well, they didn't actually trick me, they just forgot to tell me how far we were going, and by the last uphill I was zigzagging across the path. I guess it was good for getting me in shape for my trip to Spain, coming up fast in two weeks.

When I had to show my license in the airport, it was nice to finally have a new one showing me the way I look now as opposed to the one I had for four years showing me in a scarf. I had the picture taken when I had just finished chemotherapy, and although I could have gotten a new picture taken after my hair grew in, I would have had to pay $25 unless I waited four years, and I wasn't vain enough  for that.

Only one person asked me about my license in all that time, and that was a sales clerk who needed to see it when I opened up an account. "What kind of cancer did you have?" she asked.

Huh?

Moving along, my next thing to worry about is the possibility of a strike at Iberia Airlines Dec. 14 and Dec. 17 through Dec. 21 to protest cutbacks at the struggling Spanish airline.

Guess when I'm flying?

Dec. 17.

I have called the airline and been told that if flights are canceled, they will book alternate flights either two days before or two days after. With Katie waiting at the other end and B&B reservations prepaid, two days after is a pretty bad option.

The person I spoke to today said they might have more information on Friday.

Joe pointed out that worrying won't help since there's nothing I can do about it.

I guess that when you're wired for worry, you need to be reminded of these things.

Third birthday

Emily, me and Tami

Today is my third birthday, or re-birthday, three years from the bone marrow transplant (my fourth) that saved my life.

By whatever name, I'm very happy to celebrate it by just having a normal day: writing, walking the dog, playing tennis and even paying bills and going to the store.

Thank you, Denise.

I took a little trip over the weekend to mark the occasion. It wasn't specifically planned as a birthday weekend – and we hardly even mentioned it – but it just seemed like a good time to go.

I flew to Pittsburgh and then drove with Emily to her house in the mountains outside of the city. Her husband, Mike, chef extraordinaire, met us there, and Tami and husband John came from Philadelphia.

We took a couple of nice walks but mainly stayed warm inside by the fire, doing a 1,000-piece jigsaw puzzle, reading, talking and eating. Nancy wasn't able to come, but we talked to her on speaker-phone. (I admit to making a very small contribution to the puzzle, putting a few pieces in here and there but leaving the rest to those with greater powers of concentration.)

On Sunday, I drove with Tami back to her house in Cherry Hill, N.J., and the next day took the train back from Philadelphia to Springfield.

There was a lot of travel time, but I didn't mind, because it gave me a chance to put a dent in the absorbing book I'm reading, Jonathan Franzen's "Freedom."

And so here I go, feeling good and toddling off into my fourth year.

Pittsburgh weekend: Food, fun and friendship

Emily, me and Susan in Hidden Valley, Pa.

I came back late Tuesday from a wonderful long weekend outside of Pittsburgh with my friends from high school (and for life) Emily and Susan and Emily's husband, Mike, a talented cook and great guy extraordinaire.

I flew to Pittsburgh, where Emily picked me up. We then drove about an hour and half to their country house in Hidden Valley; Mike met us there, and Susan drove from Washington.

When you are with people you've known for a long time, so many things are in context. That makes it very comfortable, because you don't have to fill in the blanks. We laughed a lot, ate a lot of Mike's great cooking and, of course, talked a lot. We also watched a couple of movies and ate too many peanut M&M's.

On Saturday, four of us (Susan, me, Emily and a friend of hers) biked about 18 miles round-trip along part of the 141-mile-long Allegheny Rail Trail. The section we were on ran alongside the Casselman River; it was flat enough that we rode in twos and talked along the way while enjoying the scenery.

Rain was forecast for Sunday afternoon, so we got our exercise in during the morning, hiking three miles through the woods. This path had some (admittedly little) hills, so the distance we went was plenty for me.

We watched some of the US Open, and I studied the players swings' in awe, taking note of their
lightening-quick follow-throughs and constantly moving feet.

Back home I have really wanted to play, but my clinic and my doubles game (like some of the Open) was canceled due to rain.

That's OK, because out on the court after watching a championship, I often play worse than before.

"Move your feet!" my inner coach says.

I reply, "They're too heavy. I'm doing the best I can."

And then from my inner coach again, "Don't direct the ball, follow through! You saw how they do it."

Me: "Duh, I know what I should be doing. My arm won't go that fast."

I'm sure I'll end up playing – and watching more of the US Open – this weekend.

It will be fun, as it always is. But I kind of liked sitting on the couch in Hidden Valley, just watching the tennis, eating M&M's and talking to friends with no thoughts of going out to play while I was there.

It's good to get out of the neighborhood

Me, Tami and Nancy at Candlewood Lake last month

Recently I have ventured a little farther from the neighborhood. Not counting my visits to Dana-Farber, I hardly ever go further than a 30-mile radius from my house. I still haven't gone far, but you really get the feeling that you're breaking out even when you're just taking a little trip.

A few weeks ago, I went to New Milford, Conn., for an overnight at the lake house where my friend Tami and her family have been going since I've known her, which dates back to high school. When planning and packing up, I had the great feeling of being a "normal" person packing a bag for somewhere other than the hospital. Emily, another member of our sisterhood, had to stay home in Pittsburgh and work. We talked to her on speaker-phone, so it was almost like she was there.

And by coincidence, Ben was covering a Rutgers football game in Pittsburgh, so he stayed with his "Auntie Em,"
who took him to the movies.

My worries, and my hand sanitizer, went with me. We took a long walk and as we were going up a steep hill, I asked Tami, "Do you feel winded?" (Translation: Am I OK?) Yes, she said.

She added that she feels winded every time she walks up that hill. It's not that I expect to have the same endurance as other people, but rather that I expect to have similar or better endurance to what I had the day or two before. If I feel that I'm more tired than usual, I begin to wonder if I am getting sick in a little or big way.

Of course, no matter how refreshing the change of scene, most everyone takes their regular concerns with them, so in that respect, I was just as normal as anyone else.

We don't see each other that often, but we pick up without missing a beat. I guess that's what happens when you've been friends for 40 years. One day it poured, so we sat inside and talked and ate and ate and talked. The next day it was beautiful, and we walked down the road for a long time. We said hi to two horses in a field who came over to the stone wall to see us.
The horses walked along next to us on their side of the wall. I wanted them to stop so I could take their picture, but they kept moving.
So I jogged ahead to take their photo from a better angle.
"Hey," I said to my friends. "Look at me. I'm jogging!"