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.

Back in Boston for a day

My time between Dana-Farber appointments is now a big two months, but I'm actually in Boston more than that when you take into account seeing my various doctors.

 I have an appointment tomorrow with the surgeon who did the repair under my eye after the Mohs procedure in which another specialist removed a squamous cell carcinoma. I usually try to combine appointments into one or two days, but it wasn't possible to connect this one with anything.

I was just in Boston a couple of weeks ago, and here I am again. I am at Diane and David's spending the night because that's easier than driving both ways in one day, except that it poured when I drove here this afternoon.

My eye looks fine. There was a bubble of skin on the spot for a while, but it has flattened out. I thought maybe I should just take a picture and send it in rather than taking myself in. For some reason I don't think that would go over too well. I'll probably have a wait in the doctor's office tomorrow, and then she'll look at it for about two seconds. Maybe she'll tell me she doesn't need to see me anymore.

That's OK. I like coming to Newton. The conversation and the food are excellent. Tomorrow I'll see a little bit of Boston and drink in that city feel (like traffic), and then I'll head back to the hills.

Day after surgery

The hernia repair surgery yesterday went well.

The area is quite painful, so I am back on oxycodone every four hours. I'll probably stay at Diane and David's in Newton through Friday so that Katie can drive me home after class. Then she'll take the bus back to school. Tomorrow I have an appointment with the doctor who did the repair under my eye.

They want you to walk, so yesterday and today I took Diane's arm and went for a walk. It's so balmy here, it was nice to be outside. My legs are a little wobbly, but only mishap was when a fire alarm box jumped out from its spot on a building and hit me on the head as I turned to look at a book Diane had just bought. After a quick examination showed that I was OK, we switched sides so that I'd be away from the buildings.

Back at the house, I had received an e-mail saying the year-end tennis ratings are out. I'd been predicting that as soon as I returned to team tennis, my rating would drop from 3.5 to 3.0. (How's that for confidence?) But since I've won one and lost one, I knew I'd probably stay.

And there it was when I wrote in my USTA number: 3.5.

That made me happy.

On the road again

I've been on the road since early Sunday, when Jim, Katie and I drove to Bates (in Lewiston, Maine) to watch Joe play in a hockey game against Keene State.

It poured all day and night. The game was at 3 p.m.; we had planned to meet Joe for lunch, but we got there late, so we didn't see him. After the game, we saw him for about 15 minutes before hitting the road and driving back for about three and a half hours.

It was worth it, though. For good reasons, until this season I had missed all of his college hockey career. This hockey mom thing is like riding a bike. You might fall off, but once you get back on, you remember right away. Ah, those freezing cold rinks, the slightly pungent warm rooms, the blankets shared with other hockey moms to keep your rear end warm on the cold bleacher, and, of course, the excitement of getting into the game.

Joe plays goalie, and it is always extra-exciting to watch him make great saves and scary to watch the offensive players crowd around him (as in, "Stay away from my baby!").

Bates beat Keene State 5-4 in overtime. Yay!

We had gone in separate cars to Brandeis, where we picked up Katie and drove to Maine in my car. On the way back, we stopped at Brandeis, they got in Jim's car and drove back home (Katie is done with the semester) and I drove about 15 minutes to Newton, where I spent the night at Diane and David's.

Yesterday I had my check-up at Dana-Farber. My best news is that my hematocrit, at 36, is finally normal. My platelets, however, dropped to 59, which explains the bad bruising I got after my dental surgery. Melissa said this is because my liver enzymes are still elevated. I might need to increase the prednisone; she is going to consult with Dr. Alyea and let me know. I still need two teeth pulled, but I have to put it off for now. So sad.

Last night I stayed at Margaret and Nick's, also nearby in Needham. Another friend of hers was there too, and we had a delicious festive dinner. Their teenage son, Natty, wanted to go do something about 9:30. To prove that we were spontaneous, we went out into the cold and drove to one of the only open stores, TJ Max. Along the way, we admired the holiday lights. Needham has a blue and white theme, and there is one huge especially beautiful blue tree.

My ankle weights don't fasten right, so I made the exciting purchase of new pair.

Natty wanted to look around more; the photo below is of Mary, Margaret and me resting on a bench.

This morning I went to a good yoga class with Diane, followed by coffee.

I had an afternoon appointment with a dermatologist who used liquid nitrogen to freeze between six to eight (I lost count) precancerous spots. This was not fun.

The yoga instructor had said to drink plenty of water; I was going to ask if drinking strong coffee counted.

I am trying to save money, and I am afraid I spend too much on coffee. Still, my face burned. I needed to stay awake for the hour-and-a-half drive home in the dark. Two good reasons to splurge.

So I stopped at Starbucks and headed home.

Out and about, from witches to water

"Fried dough. Welcome to Salem."

That is one of the first signs that caught my eye as I struggled through the crowded streets of Salem, Mass. on a warm sunny day Saturday.

The city is home to the Salem Witch Museum, which contains exhibits about the tragic events of 1692, when more than 150 women – and men – were imprisoned on charges of witchcraft. Fourteen women and five men were hung.

I visited the museum ages ago when it stood in a relatively quiet city. I don't know when this happened, but the place has turned into a zoo. Banners advertise ghost tours, seances, haunted this and haunted that. I nearly bumped into a walking Frankenstein.

I ended up there because I was meeting my friend Katryn from Vassar. Our birthdays, which are in August, are just two days apart, and we try to get together every year to celebrate. So this was our birthday celebration.

Katryn lives in Portland, Maine. We try to pick a half-way point, and Boston or its environs has often been our meeting place.

Katryn said she wanted to see the Chinese house at the Peabody Essex Museum, located in Salem. I wasn't exactly sure what she meant, but I thought, hey, a Chinese house in the middle of Salem sounds interesting to me.

As soon as she saw the commotion, she apologized to me, but I didn't really care, because it made for an interesting visit, and I had nothing pressing on my time.

The museum is an oasis in the middle of this crazy place. It is so odd to walk up to its doors and find an actual regular art museum there. As it turned out, the house, called Yin Yu Tang, is an actual structure, built in China 200 years ago and then taken apart bit by bit and moved to Salem.

It is connected to the museum, and when you enter it, it is like entering a different world. We took a self-guided tour that was extremely informative.

Anyway, after Salem we spent about an hour walking in beautiful Marblehead, about 10 minutes away and home to beautiful harbor views and narrow lanes. The photo shows us in a little park above the water.

From there we headed back south, spending the night at Diane and David's house and then meeting our friend Alice, also from Vassar, for brunch in Newton.Katryn and I have done a lot of things together. When we both lived in Boston, we celebrated our birthdays on a "booze cruise" around the harbor. Once we rode out bikes around Nova Scotia.

Later we were room-mates in Northampton. We lived in a funky apartment with no cabinet doors; the kitchen was perfect for the sprouts we grew in the window. We had some, ahem, interesting parties there.

We've also visited at each other's homes. I have one of those adorable/embarrassing photos of our naked baby children in the bathtub together. Always a good thing to hold over your kids' heads in case you need to blackmail them. (Only kidding.)

We happened to plan this trip kind of last-minute, which is sometimes easier than making plans that often end up being broken. It was so easy to do, we both said we should do it more. I hope we do. It's good to get out and about. But maybe we'll leave out Salem.

Downhill uphill

Thursday I woke to find dog poop and vomit all over the dining room rug and even streaked across the wood floor. Joe and I cleaned it up. The rug is already ruined because Maddie chewed the edges, but it was usable; now it will need some heavy-duty cleaning.

I had to head to Dana-Farber, so Joe took Maddie to the vet. She got a shot and pills to slow her digestive system, and she came home with easier-to-digest dog food. She never got a diagnosis, because her stool sample showed no sign of worms and she checked out normal for everything else. Maybe she ate something. She seems fine now.

I knew I'd be late for my appointment, but I was even later than I thought. The traffic on Route 9 into Boston was bumper-to-bumper, and the "Boston drivers" seemed to be out in full force. I called Melissa to say I'd be late. By the time I got there, I was exhausted.

My hematocrit had fallen to 25.7, which seemed odd to me because I felt so energetic a couple of days earlier walking around Newport with Ben, and I still felt OK. White count was normal at 9.1 and pokey platelets were 72. (Better than single digits, but I keep wondering what happened to 100?)

My blood pressure was way high, and my sodium, at 124, was still low. (Normal = 135-145.)

Glucose was lower (164) but still high (normal is 65-105), and liver function was slightly elevated again. They put me back on Glipizide to lower the glucose, increased my bp medicine, Atenelol, from 50 mgs. a day to 75, and increased my salt tabs from two to three a day.

Arrrrrggggghhhhhh! Too much to keep track of. I've been demoted from going every other week to going weekly, so I have another appointment Thursday.

It was far from a terrible visit, but still frustrating.

Things went uphill from there, luckily. I had a lovely "al fresco" dinner at my friend Margaret and her husband Nick's house, where we had delicious crusty salmon on the grill. From Needham, Margaret drove me to Diane's in nearby Newton. I left my car at Margaret's, necessitating a car swap the next day, but Margaret said I looked too tired to drive. It's nice to be looked after.

I spent the night in Newton, and the next day, Diane drove her son, Sam, and me to the house they just bought on Cape Cod. It's in Wellfleet on what they call the Outer Cape. David caught up with us later.

There was a celebratory air, since it was my first visit to the house. The plan called for me to stay until tonight, drive back with them to Newton, then drive home. It was a longish driving day – two hours to Newton and an hour-and-a-half to South Hadley – but there was very little traffic, and it worked out perfectly. The house was beautiful, and we managed a good sampling of our Wellfleet favorites: pond, bay, ocean, town and ice cream, as well as walking alongside the beautiful marshes and enjoying dinner in and dinner out.

More on the Wellfleet weekend tomorrow.

Big problems, 'little' problems

Me (left) and Diane after her birthday party at her house.

The news was even more dreary than usual today, topped by developments in the devastating earthquake in already-struggling Haiti. I was going to write a post topped by a little story from Monday's Boston visit. It felt so insignificant that I put it off and thought about it some more.

There is so much trouble in the world that I think sometimes we rank our problems against it and come out realizing we don't have it so badly. Yet that doesn't mean our problems are not real.

Sometimes people start telling me about a problem, often medical, and then they cut themselves short and say, "Well, I shouldn't be complaining to you." I always say that I don't lay claim to all the suffering, that everyone has a right to voice his or her own problem, and they should please tell me what's going on. Maybe I can offer some help.

I guess if you have a life-threatening disease, even though that doesn't shake the world, it's intense enough to talk about.

There. Now I feel better. So here's my little story:

My clinic visit was good Monday, so I got another pass and need only return in two weeks. Everything was about the same, with my platelets actually going up a little, to 68.

On the way home I wanted to see if I could find some "real" bagels and a Starbucks. So I called Diane. We both dismissed the chain, Finaigle a Bagel. Who gives a name like that to a store that has real Jewish bagels? "You want something that doesn't taste like it's been puffed up with air, right?" Diane asked. She said there was a store called Rosenfelds kind of tucked under some buildings in Newton Centre.

"Is this going to be another story called 'Ronni gets lost?'" I asked. "It doesn't have to be," Diane said. I don't know why but I have trouble in Newton. Last time I called her about going to that Starbucks I had ended up approaching it the wrong way, and we had no idea how I got so turned around.

My instructions were to park the car in Newton at Beacon and Centre and then get out, go into Starbucks, and ask someone to point me to the bagel shop. "You know what I'm saying," Diane said. Then she repeated it: park, Starbucks, bagel shop. I laughed at being told multiple times, like I wouldn't "get" it if I only heard it once. Sad thing is, that's true.

OK. Park, go into Starbucks, ask, see the bagel place diagonally across the street. Head out. In my black boots, carefully cross icy snowbank. Notice streak of white across the afternoon sky and notice that others carefully walking are doing the same balancing act that I am. Arms out, windmill style.

Arrive at Rosenfeld's. It's closed! A young woman peers inside the door. Closed Monday and Tuesday, she says, her face falling. I mumble shared disappointment. Back to Starbucks for coffee to go. (The coffee is excellent, by the way.) Share disappointment with "barista." He agrees it's not a good schedule.

Continue down Centre Street and get on the Mass Pike West with no trouble.

So?

It felt really normal. One minute I'm at the Dana-Farber Cancer Institute, a patient, and the next I'm a pedestrian clambering over a snowbank and talking about bagels. (I bought bagels in Western Massachusetts, so it all worked out).

I saw a lot of the Pike Sunday and Monday. Diane had a birthday party Sunday afternoon in Newton, and I went to that. I know a lot of the people who were there and had a good time catching up with them. The food was good, and the company was good. More problematic was that I decided to drive back home at 7:30 p.m. (one-and-a-half hours) and then come back for my clinic appointment the next morning. People told me it was a bad plan. It probably was, but it seemed easiest. When I got back home around 9, envisioning a pleasant couple of hours, I was confronted by the same messy dining room table I had left behind, filled with financial aid documents that I needed to fill out, plus other problems.

Unrested, the next morning I headed back to the clinic. Oh well, at least I got a good report, had lunch with Margaret (combining something fun with a clinic visit is always a good idea), did NOT get lost and got a good cup of coffee, although, alas, no bagels.