When dreams come true, it's kind of freaky

On Sunday night I dreamt three things.

1.     I was playing tennis, and my forehand would not go over the net. Someone said I had to get under it more. I tried, and got some, but not all, over.

2.     I bumped into a friend with whom I had had a fallout. He was walking towards the parking lot of The Republican. “Happy New Year!” I said. He looked back and said, “Same to you.”

3.     I had parked my car in the gated lot at work. When I went in to get it, I realized that I needed a key card to get out. I was afraid I would be stuck inside. But I waited a while until a car went out and I followed that driver, and the gate opened and I got out.

On Monday, these things happened.

1.     I was playing tennis, and my forehand kept going into the net. I told my doubles partner that this had happened in my dream, that I got under the ball, and it went over. I tried it. It got a little better.

2.     I went into Starbucks and bumped into the friend I had dreamt about. I told him I dreamt about him. He asked if it was bad. I said that no, I had just wished him Happy New Year. So in real life, I wished him Happy New Year. He wished the same to me.

3.      I parked in the garage in Northampton later that day and went to do some errands. When I got back to my car, I realized that I had lost the ticket. I went to the pay station and pressed the Lost Ticket button. I would have to pay $20.

I canceled the request and wandered around the garage, retracing my steps to try to figure out where the ticket had fallen out of my pocket. No luck. I walked out to see if I could get a new ticket, but it needed the weight of a car. By this time it was pretty late.

A young couple walked into the garage after paying for their “get out of the garage” ticket at the pay station. I asked what they thought would happen if I drove my car out after them. He said that probably the bar would come crashing down on my car. I got an idea. I asked if, for a few bucks, they would drive out and then drive back around to get a ticket and then back out and hand it to me. The guy said, sure. (I hope Dave Molnar isn’t reading this.)

They put their ticket receipt into the machine, drove out and around, got a new ticket and handed it to me. Success! We all smiled. I went to give him the dollar bills I had pulled out of my purse. He said that he wouldn’t take it for a favor. I thanked him and said that it would come back around, and someone would do a favor for him. We went our separate ways, smiles all around.

So….Last night I dreamt that I needed to go on a diet to lose five pounds. Does that mean I need to do it?

I am not overweight but I know the wishful thinking behind the dream. I am not happy with the way that mygraft vs. host disease of the skin has caused my stomach to stick out. It is more than being of a certain age. It has made some of my clothes unwearable and some just plain uncomfortable.  I know it’s a small price to pay, but that doesn’t make me like it any more. It has been described as feeling like there is a band around your stomach. It has to do with the fascia, the layer beneath the skin. Losing weight, alas, isn’t going to do anything for it. That is why I keep getting the ECP, or extracorporeal photopheresis, aka light therapy, aka sunburn of my blood, which has helped soften my skin and keep it from hardening more but alas has not done anything for the popping out thing.

Two years with the light therapy already

First day at ECP, two years ago

The light therapy, the internal sunburn, the blood thing: These are some of the ways I have described the treatment I have been getting at Dana-Farber for the past two years.

It is technically called extracorporeal photopheresis, or ECP, for Graft vs. Host Disease of the skin. When last week Facebook sent a memory from April 28, 2015, I thought it was a good time to look at the then and the now.

It began with a nurse telling me, "We have to get them to stop acting like teenagers."

The post continued,

The "them" is my T cells, and my nurse today at the Kraft Blood Donor Center at Dana-Farber told me this in explaining why it will be my home away from home for two days out of each week for the next three months or longer.

My first visits yesterday and today went well. The only discomfort occurred when the needle didn't quite hit the spot (not fun) and when my arm hurt for the last 10 minutes or so when my white cells were returned to me after being collected during the three-hour process called ECP, or extracorporeal photopheresis.

My blood went through six cycles during which white blood cells (which contain T cells) were collected and then the rest of my blood returned to me. At the end, a bag of white cells is subjected to UV radiation, which changes their DNA so they will stop attacking my skin.

"They're getting a spanking," the nurse said.

The process works for all kinds of Graft vs. Host Disease, and hopefully it will also help my liver and enable me to get off prednisone. Two other people were getting it done at the same time, and several more were scheduled for the next round at 11, and more for 3, which is when I did it yesterday, followed by the 7 a.m. session today. It felt early but it was actually a good time because I slept through most of it.

Clearly I'm not the only one who drives a distance. One couple, for example, comes from New Jersey.

And I'm not alone in getting GVHD of the skin years after my transplant. The nurse said one woman developed it after 12 years.

I had brought my computer and was able to read a little of the New York Times. I have a book but I'm not sure how that will go because I can only use one hand. I'll try it next time leaning the book on a pillow. The nurse said most people use a tablet. I'm still a hold-out on that, though.

Afterwards, I made a beeline to the cafeteria, where they have Starbucks coffee. It's not a great idea to drink too much beforehand, because if you go to the bathroom they have to put a board on your arm to keep it straight.

I texted the photo of me in the bed to Ben, Joe and Katie.

Joe wrote, "Looks comfortable!" and Katie wrote,

"Back at hotel Boston!"

NOTE: Alas, it did not help me get off prednisone. I doubt that it will ever happen. It did soften the skin that was hardening and improve my flexibility to the point that I've gotten one of the best rewards: A compliment from our pro, George, who frequently asks what they're putting in my veins to enable me to get to more balls.

Still, at this point my progress can feel frustratingly slow. I'm keeping at it at least for a while in the hopes that the ripples on my thighs and abdomen (and the feeling that it has a band around it) will diminish somewhat before I stretch out the treatments into more maintenance therapy.

While Nora Ephron felt bad about her neck I have to admit I feel bad about my stomach.

After all I've been through, I should probably get over it.

Not the usual kind of exercise

For two days when I didn't officially exercise, I did a lot of running around.

On Sunday I drove to Fairfield to see Ben, Joe and Nell (Meghan was out). We had a nice little visit where the grownups had bagels and Nell had a bottle and some baby food. Nell seemed to like playing with the string on my sweatshirt.

I took the train to Grand Central and got a new MetroCard because I couldn't find mine. I like to think that I am still a New Yorker and was proud of myself for knowing that I needed a card, unlike Bernie Sanders who thinks you still need tokens, and unlike Hillary Clinton who needed five swipes to get in while I only needed one. I was planning to take the shuttle all the way further east so I wouldn't have to walk the long crosstown blocks  from there (42nd and Lexington) to my Aunt Marge and Bill's (United Nations Plaza), 49th street east of First Avenue.

When I got in and looked at the signs I felt really stupid. The shuttle only runs between Grand Central and Times Square to the west. NOT IN THE OTHER DIRECTION. So not-a-New Yorker.

I had wasted that perfect swipe. I ended up back in the terminal and went out to the street and decided to walk.

I was pulling a suitcase so it wasn't that easy. I'm afraid I looked like an out-of-towner: pieces of the New York Times fluttering in the wind, dragging that suitcase, carrying my laptop and purse, struggling to open the door of a deli to buy flowers and cookies for Marge and Bill, hair flying around my face in the wind.

People stopped to get photographed at Trump World Tower (a residential building not to be confused with Trump Tower on Fifth Avenue). They were all laughing as they did it. I don't know what that meant. I know what I was thinking, as you can see from my thumbs down in the photo.

Up at Marge and Bill's, I showed them photos and videos of Nell and enjoyed the view. Afterwards, I took a cab up to 66th and Third Avenue to get a cappuccino at Starbucks because I thought it was too early to have dinner with my cousin Jeanne. It was the closest one between where I was and 72nd street, where Jeanne, Bruce and Amanda live. I then got a look at a bad side and a good side of New York.

While juggling all my stuff, I pulled open the door of Starbucks. From behind me, a woman going into the store pulled it out further. My hand got stuck in the door and my fingers bent backwards. I looked over my shoulder at the woman and she said, sounding annoyed, "I would have opened the door for you if I knew you had issues." I wasn't sure how to take that but I don't think she was being friendly.

I sat down on a stool at the window. I put my suitcase under the counter and my black Longchamp purse on a shelf that had bags of coffee on it, and then I read part of Sunday's Times. I walked up the six blocks to Jeanne's and went into the building. The doorman called up and as I was walking towards the elevator it suddenly occurred to me that I didn't have my purse.

Naturally, I panicked. I went back to the desk and tried to call Starbucks but got the wrong one. I figured it was best to just go back there. So I got a cab and when I asked the driver to take me there and wait for me and told him what had happened, he said he would take me for free.

If you have to leave your purse somewhere in New York, Starbucks is a good place to do it. It was waiting for me behind the counter. The cab driver, who was standing next to his taxi when I came out of Starbucks showing him my bag, had a big smile on his face. I gave him a $5 tip. At first he didn't seem to know what I was doing. But we both ended up happy.

Today I took a cab from Jeanne's to Grand Central after briefly considering taking a bus or subway but realizing it wasn't going to be easy with all my stuff. There was so much traffic that it was a very expensive cab ride for a short distance. It cost $13-something plus tip, and I thought I could have played tennis for that amount.

Once in Fairfield, I considered taking a cab to Ben and Meghan's to get my car because no one was available to pick me up. But I didn't want to spend any more on cabs, so I walked the approximately 3/4 of a mile. It's a good thing that, thinking I might have time for a run, I had put on my sneakers.

From there I drove home, stopping at Katz's deli in Woodbridge for a corned beef sandwich and a Coke to go. I felt nostalgic about all the times that I stopped there with the kids on our way to and from New York, when it used to be a much smaller place, but the challenge of eating that big sandwich in the car took my mind off it.

And to think that seven years ago, I couldn't even walk.

A day of odd happenings

Yesterday was strange.

It started with my usual routine these days, checking the three spots where I have put nifty black mousetraps that allow me to release the mouse in a bag without looking at it and then place the peanut-butter-laden trap back in its place. The family likes the silverware drawer, the lazy susan, and the area under my sink. Every time I put the silverware back in, I have to take it out and wash it. So it is on my kitchen table. I found the mouse in the drawer.

(This post is in chronological order, not order of importance.)

I did a phone interview for a story I am writing and did some stuff around the house.

Then, I went down to Enfield to get in on a group lesson with George. I am enjoying my clinics in with Michael, but I wanted to check in with George to brush up on my slice. It was just me and one other woman whom I had not met before. George used me as a slicing model! When introducing us, he told the other woman that I had had three bone marrow transplants. Actually, I said, it was four. He said they must be doing something to my blood in the ECP because my strength, flexibility, balance and movement have greatly improved.

After that, I went to Starbucks to buy some coffee to take home and sit down with the newspaper and have a cup to get me back home. I started talking to people, left, and forgot my coffee.

Back home, I decided to go to a yoga class at 7:15 at Serenity Yoga because I am not going to be able to make my usual Saturday morning class. While waiting, I browsed the freelance writing jobs on line, found one that I liked, and applied to it. Then I went to yoga. I was the only one there, so I had a private lesson in which the lovely teacher, a sub, gave me excellent new tips on keeping my balance, such as finding four spots in my feet and pressing them firmly into the ground. She also gave me a wedge for my hands. It helped with the arthritis in my left hand that is a problem when doing down dog.

At home, now around 8:30, I steamed broccoli and cooked a little ravioli and checked my email. I had gotten a response to my job application. The editor sent a three-page press release and asked me to rewrite it in 300 words, with a focus on the message that the employer wanted to convey, and return it within 24 hours.

It reminded me of being back in Jon Klarfeld's journalism class at Boston University in which he gave us the chronological information on a fire story, with the lede buried (something about a person in a bathtub), and we needed to rewrite it in order of importance, and if we failed, be greatly mocked. I say this with affection because it toughened me up and he did it with a sense of humor.

I violated my rule of not writing before bed and stayed up until 11:30 rewriting the press release. I tossed and turned and woke up tangled in my quilt and sheets. This always happens, but in this case I thought I needed to get the job done quickly.

Today, I had planned to go to the Northampton Y for a yoga class. But I have go back to Longmeadow to get my coffee, so I signed up for the round robin in Enfield. I thought of canceling because I am bleary-eyed. But I already said I would go and that is what I want to do. Hopefully I will be able to see the ball.

Zapped

I was scheduled for two appointments in Boston yesterday, but one was canceled at the last minute, so I took advantage of my free time to have lunch with my friend Margaret and do some retail therapy with Diane.

It's too bad that the dentist canceled, because I was interested in hearing what he thought about a problem that I didn't even know had a name: burning tongue syndrome.

I did get to see my dermatologist for our now-routine session of zapping and chatting. It's a good thing I like her so much. She identified a spot on my wrist that will need to be removed surgically. She had thought that a past biopsy itself would take care of the little squamous cell, but it is still sticking around. She also biopsied a spot on my neck. Same old, same old. After Dr. Lin and the nurse had left the room, I noticed that my hair at the nape of my neck was caught under the bandaid. I went to find Bernarda, Dr. Lin's scheduler, who put on some gloves, and, tsk-tsking about the sloppy job, had to cut a little of my hair away.

By the time I was finished with lunch and shopping it was already getting dark. It might have been wise to spend the night, but I got it into my head to go home, so I stopped at Starbucks for a super-strong coffee on the way out. The barista told me that their Blonde Roast actually has more caffeine than the darker roast although it has a lighter taste. I got it with a shot of espresso; when he called out "One Red Eye," I didn't know what he meant, but he said that's it's name. (Two shots is apparently called a black eye.)

I had only eaten half of my lunch due to my normally slow eating habit combined with not having a full set of teeth. I realized I was hungry, so I bought a sandwich for the ride home. Add eating while driving to the list of driver distractions. I needed to go only one exit on 95 North to get to the Mass Pike, but by the time I realized what I was doing I had gone maybe five. So I turned around and of course immediately got stuck in traffic with those commuting home after a day at work along Route 128.

Despite strong winds and snow squalls, I arrived home safe and sound. I am glad I will not be driving much in the near future. I thought I might have trouble going to sleep after all that caffeine, but I drifted right off. However, I paid the price by waking up every hour.

Flight to Spain in the balance

If the customer service at Iberia is any reflection of the management at the troubled Spanish airline, I can see why the carrier has so many problems.

I spent about an hour on the phone with the airline today, getting disconnected three times. I have been calling every day and checking the website to find out if there is an update on my flight Dec. 17 to Spain. The flight is still confirmed although a strike is planned for Dec. 14 and Dec. 17-21 to protest cutbacks at the airline.

You can understand why they can't change flights that aren't canceled, but still, it's frustrating that they have no information on when they would notify passengers. They said they would make other arrangements, but I can just see the chaos of all these people trying to rebook with limited notice. I guess that is the point.

So....I decided to buy some peace of mind by changing my flight to Dec. 16. The cost is pretty wild, and there is always the possibility that they won't strike, but I don't want to take the chance. And there is a lot to say about limiting stress, for anyone, of course, but especially for someone like me operating with a compromised immune system.

In the meantime I'll watch my expenditures to see if I can make up some of the difference. I could start by skipping Starbucks, but I'm not sure how that would work out.

Katie safely in Seville

Katie left last night for her semester in Spain, where she will study at the university in Seville and stay with a family there.

I can't believe that after about a year of talking about it and planning, the time actually came for her to lug her (overweight) suitcase into Joe's car en route to Logan Airport. (The overage cost $60!) It will be a great experience for her, but I will miss my little sidekick.

I'm going to join her in Seville at the end of her semester and travel with her for about 10 days. I'm looking forward to it.

She e-mailed today that she was safe and sound and that she liked her host, who had set her up nicely.

Meanwhile, I played tennis today and was much better than last week. However, Donna, who knows me very well, looked at me in the middle of the second set and said I looked tired and it was really OK to stop. Chip and Donna's friend Kathleen echoed her.

Rational voice: You should stop because when you get tired is when you injure yourself.

Bad-advice voice: You haven't even played two whole sets, of course you have to finish!

Never mind that the first set was good and filled with long points (Chip and I won 6-4) or that the second set was turning into a long one too (Donna and Kathleen won 6-4). And never mind that the sun was beating down on us.

Chip and I drove to Starbucks after, planning to get a coffee, but I suddenly felt queasy. So we went and got me a Coke, Chip got coffee, and we sat down on the patio outside Starbucks to have our drinks. I felt better pretty quickly and was well enough to eat a frozen a frozen yogurt that Chip offered to buy.

This afternoon I was going to walk Maddie but thought better of it and lay down on the couch to watch a little tennis...and promptly fell asleep. I was happy to be invited, avec dog, to Deb's house for pre-dinner dessert and coffee for us and a big biscuit plus play date for Maddie.

More fun in Boston

I am enjoying a brief hiatus at home before returning to Boston tomorrow for three days of appointments.

"Enjoying" might be too strong. After the surgery under my eye on Wednesday I am not allowed to exercise for a week, and so I am a little out of sorts. Still, I am glad to be home.

It is a good thing I have a place to stay in Boston. I hope Diane and Margaret (and their spouses) don't get tired of me.

I have five appointments, and although I couldn't have gotten all of them into one day, I was hoping for two. No such luck. Oh well, I could be "stuck" in a worse place than Boston. Maybe in my free time I'll go to the Museum of Fine Arts or walk (with a tiny bit of jogging) along the Charles River. And of course I can always go read at a Starbucks.

Tomorrow I have my regular check up at Dana-Farber, followed by an appointment with the head and neck surgeon (aka the tongue doctor) to check on my tongue, or should I say the remaining part of my tongue. I'm also going to see my social worker.

On Tuesday I have an appointment at Mass. Eye and Ear to see a specialist in graft vs. host of the eye. Dr. Alyea is sending me to him because he thinks some of my eye problems might involve GVHD. I have heard that this doctor is a big big shot who has absolutely no bedside manner. I am a little worried that he's going to yell at me. (I didn't do it! It's not my fault!)

Finally, on Wednesday, I return to the repair shop to have my stitches taken out and the wad of cotton removed from under my eye. I am definitely looking forward to that visit.

Close encounters of varying kinds

The graduate, Lily, center, with Diane, to her right, and

aunts, Suzanne, left, and at right, Mel and me.

I had a wonderful though rainy weekend in St. Paul, Minneapolis, for my niece Lily's graduation from Macalester College.

Lily is Diane and David's daughter and the same age as Joe, who graduates in two weeks from Bates. So there is a whole lot of celebrating going on this month, alongside musings about where all the time went.

It is so nice when family gathers for happy occassions. I sat near Lily and her friend at dinner one night and got a chance to talk to them about their interesting plans as geography majors. We saw some of the sights in the Twin Cities and ate a lot of good food (it seemed like we were always planning our next meal!) Found some good coffee places, too.

I also met some very nice people whom I'll never see again...strangers coming together for brief connections.

The first "encounter" was on my flight from Hartford. I used to like flying, then I got afraid of flying, and now I think I'm OK again, not that I do it very much.

During my scared days, just a little bit of Ativan helped. I had brought some with me this past weekend just in case, but I didn't take it in the airport. As I sat on the plane waiting for takeoff, I thought maybe I should reconsider. (It doesn't work right away, but including a layover in Philadelphia, it was a five-hour trip.)

I called a friend who has a similar problem.

"Take it," she said.

A woman sitting across the aisle had heard my question, and she leaned over towards me and said, "Don't take it. Just breathe. You can do it."

The man in front of me turned around and gave me a thumbs up in agreement with the woman across the aisle.

The woman next to me, who told me later that she is a medical librarian at Yale, said maybe I should take it but that if I didn't and I got nervous, she would hold my hand.

I joked that maybe I should ask the whole plane.

I didn't take it. My new friends asked me a couple of times if I was OK. The librarian and I chatted a lot It was a smooth flight, and indeed I was OK.

I had another brief friendship Saturday morning at the hotel, where a free breakfast is included. The coffee, no surprise, was pretty bad. I drank a cup and then was sorry I had.

I asked a woman at the front desk if a Starbucks was nearby, and learned that there is one, but not in walking distance. The woman said I could wait for the van driver to return from an airport run and then he would take me there.

The driver was a man who looked to be in his late 20s or early 30s. He told me that he is from Ethiopa but doesn't mind the winters in Minnesota. He just bundles up and then looks forward to spring and summer, which are beautiful.

He works part-time at the hotel; his main job is as a collector for the phone company. "I'm the bad guy," he laughed. He is also pursuing a college degree in fine arts from the University of Minnesota.

When we pulled up in front of Starbucks, he said, "Tell them Amby says hello."

I did, and the two young women behind the counter smiled and said to say hi back. I was all set to go with my capuccino, but they said to wait a minute, they had one more drink.

It was Amby's usual, a skim vanilla latte (or something like that).

He broke into a big smile when I gave it to him.

"I am blessed, blessed, blessed," he said.

I feel blessed by the major events this weekend and by the anticipated ones in the coming weeks and by the small ones too.

Searching for coffee and bagels

What's a Jewish person to do on Christmas when you don't live in a city? What if you want a good cup of coffee? Barry and I decided to investigate.

Except for the handful of Chinese and Japanese restaurants, everything was closed in normally-busy Northampton. Then we came to Starbucks, bearing a big banner, Open on Christmas Day. Success! It was shortly before 1:30 p.m. I got my cappuccino and lemon pound cake and even found a copy of The New York Times, which hadn't been delivered that morning. I was happier still.

Barry got his coffee and we found a table where we settled down for a good chat about this and that. Shortly before 2, an employee announced that the store was closing soon. We hadn't noticed that it was only open until 2. Our happiness was short-lived.

Determined, we headed for Amherst, where we found the Black Sheep deli open. Got more coffee (OK, and a strawberry peach cobbler that I decreed healthful enough to count for lunch) and found a table. It was about 2:20. We then realized that the cafe was closing at 3.

We had enough time to sit and laugh and to finish our conversation from before. Next year, the coffee search begins earlier.

Ben, Joe and Katie returned from Jim's mid-afternoon, and we had our Chinese food that night.

Diane and her family had planned to come yesterday for our delayed Hanukkah celebration, but snow began to fall by noon and continued through the day, so we postponed until next Sunday. I had a fridge full of dinner food, including two chickens, but nothing for lunch. Deb and Charlotte headed over, saying they would bring bagels.

Thus began another search, this one for a store that wasn't sold out of bagels. They tried two bakeries with no luck. At their third stop, Whole Foods, they found one bagel and assorted muffins. I put out some fruit plus cheese, crackers and salami and sliced vegetables. Next year, we stock up on bagels ahead of time. Either that or move to New York.

We had good strong coffee and a nice visit at the kitchen table while the kids hung out in the den. Ben left around 1 as the snow began to thicken. Our company left, and I walked the dog as the wind whipped up snow that stung my face. I was glad to get back inside the warm house. I baked a chicken, and then we stayed up late watching a movie...and eating the dessert I had planned to serve.

We haven't had a decent Nor'easter in a long time. It was good to feel snowed in and hear the gusting wind outside while we sat inside, cozy on the couch.

Tennis nut cracks

My visit to Dana-Farber Monday was great.

Dr. Alyea came in talking about tennis, so I knew I was OK. He said he was very pleased with my counts and said that my liver and kidney functions were better, and my potassium and sodium were normal. He dropped my prednisone from 10 mgs. a day to 7.5. The numbers:

WBC: 6.0 (normal = 3.8-9.2)

Hematocrit: 28.8, up from 25 three weeks ago (normal=34.8-43.6)

Platelets: 93 (normal=155-410)

When you look at the normal range, except for the white count I obviously have a ways to go. But I am going in the right direction, which is good. My platelets were up 3 from the last visit. Yippee! I'll take whatever I can get. As a bonus, that number of platelets enables me to get my teeth filled. Sigh.

I headed straight home (OK, I stopped at Starbucks), to catch the U.S. Open men's final, which had been rained out the day before. After some trouble finding the right channel, I saw Rafael Nadal beat Novak Djokovic 6-4, 5-7, 6-4, 6-4.

I had been running around for nearly a week, spending several days with Katie and getting to see Ben. Then I was back home, where it was just me and the dog. I stalled. I wasn't happy. I told myself that I don't have to be happy. I can just sit with the feelings and breathe, and over time I'll get used to it.

Or I can take a tennis lesson, which I did yesterday morning with George, sharing the two hours with a woman named Susan. I always get worse after watching the pros. I notice how their feet are always moving, and how thoroughly they follow through. Not kidding myself that I can be like them, I still try to take something away from watching them. Then I start to think about it too much, which of course is counterproductive.

Sue ran all over the court, like I used to do. I am still trying to get from three steps to four. When it was time to pick up balls, she bounced around. I used my racquet as a cane as I bent over.

George said she is a runner whose tennis game came later.

"Sue is a work-in-progress," he said.

"I guess that makes me a stalled work looking for a jump start," I said. "But we're all works-in-progress, aren't we?"

George agreed that he was too.

I know that, but I when my strokes were off yesterday, I was discouraged. I know what to do, but my body just can't do it. (Hey, sometimes we all say that, even in perfect health.)

George and I hit against Sue, and I asked if he thought I was able to take a turn by myself. "Maybe next time," he said.

It reminded me of when I was lying in my hospital bed, unable to walk, and I looked out into the corridor and watched a patient plod up and down. I asked my nurse if she thought I could do that, and she said, "Sometime soon."

I walked again. I can run and play tennis again.

I told Diane I was upset about my tennis game.

"What, you want to be Rafael Nadal?" she asked.

Diane reminded me that a little more than a year ago, I was being wheeled out of the hospital after nearly dying. "This is what you hoped for, to be complaining about your tennis game," she said.

It's so true. I could use some lessons in patience.

Silly me

I played almost-real doubles today with Donna, Korby and Deb.

Real in the sense that we kept score and I served (a puffball, but it went in) and moved around more and hit better. "Almost" in the sense that they coached me, tried not to cream me with the ball and sometimes hit me easy put-aways at the net. They seemed to sense the right balance. They didn't baby me so much that I was insulted (they did want to win their points, after all), but when opposite me, they didn't play so hard that I was humiliated. It was all done in good humor. I felt great.

I was pretty tired at the end, but a Starbucks got me home. Joe was making dinner and Katie was cleaning her room. I went up to my bedroom, still carrying my coffee, and called Ben. Joe called up that it was almost time for me to come down and cut and cook the broccoli. (The vegetables were my job.)

We had a combination of local farm-stand broccoli and store-bought. Katie did a taste-test. She said there was no question that the local broccoli was fresher and tastier. We should make a commercial for the "buy local" campaign.

Anyway, I wanted to keep talking to Ben. I also wanted to hold on to my coffee. So since I was in the process of changing from my tennis shoes to my sneakers, I threw the sneakers downstairs.

Joe rightfully panicked, thinking I had fallen. "Mom," he shouted, "how many times have we talked about not throwing your sneakers down the stairs?"

I apologized and said I was fine...and then, breaking my "stuff in one hand only" rule, I prepared to head downstairs with my coffee in one hand and the phone in the other. I slipped on the wood floor and fell. The precious few sips of coffee flew onto the off-white rug, and there I was, on hands and knees, still talking to Ben.

"Hold on a minute, I just fell and I need to get up," I said to Ben. We kept talking while I maneuvered myself to standing: something I am still working on.

It made me think of stories we heard as kids about the incorrigible Robbie Cohen, a family legend who broke his arm because he jumped over a fence while refusing to let go of his ice cream cone.

I went downstairs and joked about it to Katie and Joe. I said it didn't really count as fall number three because it was so harmless. Joe said it did count because I could have toppled down the stairs.

He's right. Reminder to self: Just because you feel better, don't think you can multi-task like you used to. Put the damn coffee down or finish it upstairs. Don't talk on the phone while doing other things. Remember your limits.

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.

Lost and found on the way to the beach

On Sunday, the first day of fall, (and Day+103) I finally got to the beach. I never went last summer, because of my relapse. I didn’t go this summer, because I was still in the early recovery phase after my third transplant.

Since I had a clinic appointment in Boston on Monday, I planned to go to the beach just north of the city with Katryn, a good friend from my Vassar College days. She lives in Portland, Maine; we decided that Plum Island, Mass., (next to Newburyport), was about equidistant for both of us. We’d picnic on the beach and take a walk, and then I would spend the night in Newton, at Diane’s, so I’d only be about half an hour away from Dana-Farber, as opposed to my usual two hours.

One thing I do very well is get lost. Which is, of course, what I did on my way to meet Katryn. In my defense, I have to say that Google Maps sent me via some unmarked streets. When I got off the highway I found myself in Salisbury (Mass.), trying to get directions. I can go inside places now if I wear a mask, but I thought it would be easier to find someone to ask outside. Everyone seemed to be from elsewhere, so I finally went into a convenience store, where a very nice clerk gave me a different set of directions, including, of course, an unmarked road.

Lost again, I pulled up in front of a yard where an older couple stood. When I told them my plight, they said, sympathetically, that it looked like I had been driving around for quite some time. They gave me a new set of directions, but my eyes must have glazed over, because the woman offered to get into her car and drive me to the turn I needed to take. I thanked them profusely, took her up on the offer, and I was on my way. The turn-off to the island was unmarked, so I panicked and thought I was lost again.

I called Katryn, who was already there. “I’m NEVER going to get there,” I said. “Yes, you will,” she said. We stayed on our cell phones until I saw her standing in front of the parking area where we were to meet.

It’s a beautiful beach with a long stretch of shoreline. We walked for a long time, enjoying the breeze and the blue sky and the sun and the boats. We walked with our feet in the cold water, and every now and then a wave snuck up and splashed us.

It was great, and a real adventure for someone like me who for a long time has been nowhere except the hospital and the clinic.

On the drive to Diane’s, I thought about how my little adventure could be a metaphor for times when you're lost. You’re driving along unmarked streets and you feel like you’ll never get anywhere. Then a stranger (I hope I’m not sounding heavy-handed here by possibly even calling her an angel) helps you find your way. And, suddenly, the vista opens up and you arrive at a great spot!

The next day I had my clinic visit. My platelets went up to 148 – almost normal. My WBC was down a little, to 2.7, and my hematocrit was down to 30.9, earning me another shot of Aranesp. I wasn't really concerned about these counts, because they were pretty high for me. And It was not unexpected for my counts to go down, because I am taking Valcyte, an anti-viral which can suppress counts. I'm taking the Valcyte because I tested positive, for the second time, for CMV (cytomegalovirus), which affects people with weakened immune systems.

Before I got the car, I put on my mask and went into the nearby Starbucks to get a coffee for my drive home. It was my second time, and I still got a kick out of it. My counts weren’t normal, but I was doing things that made me feel like a “normal” person.

The long wait was worth it

I always expect to wait in the clinic for a while before my checkup, but today the waiting time was close to a record: two hours. I came, as usual, prepared with today's New York Times, leftover sections from yesterday, the book I am currently reading ("The Story of Edgar Sawtelle") and my little blue notebook, in case I need to jot down a question or a random thought.

I went through the newspaper and was reading the book when I finally got into a room. Sometimes I get caught up in thinking that delay signals bad news for me, and then my heart rate picks up and panic sets in. Today, though, I did a pretty good job of keeping the lid on. Maybe it was because I was so tired. I almost fell asleep in the chair. I did, however, have to resist my impulse to run into the hall, grab anyone with a white coat, and say to them, "Please, just turn on the computer and tell me my counts!"

Today I was scheduled with nurse practitioner Melissa Cochran. Finally, she came in. I knew the delay wasn't her fault; sometimes the whole system just seems to get incredibly backed up. Melissa apologized for the wait and asked me how I was feeling. I said generally pretty good, although I've been having some stomach problems.

She turned on the computer.
Drum roll ...

My white blood count was up to 3.8, in the normal range of 3.8-9.2. I can't remember when my WBC was last in the threes.
Hematocrit was up to 31.1 (normal is 34.8-43.6). Hurray for Aranesp!

Platelets were down a little, from 141 ten days ago to 133 today. (Normal is 155-410.) But 133 sounds good compared to my low of 4 during my last hospital stay.

If the counts are low, I usually toss the printout.
Today, I kept it. After quite a bit of worrying during the past week, I was, naturally, very happy.

Plus, Melissa said I could get a coffee for the drive home. By now it was rush hour in Boston, and I knew that door-to-door the drive would be at least two hours, so I was happy I could get coffee.

For the first time, I walked into a Starbucks and got a coffee.
Now, that felt normal.