Tuesday, July 30, 2013

Home sweet home

I'm home sweet home as of yesterday and had a wonderful night of unbroken sleep.

Joe sprung me yesterday afternoon, and we got home on time for him to buy and cook chicken on the grill. I retired to the couch, which will be a good place for me in the next couple of weeks. But I can't get stuck there and need to find a balance of moving around and staying still.

It's difficult to be without a nurse to bring in the pain meds and tell the proper spacing. I didn't have it quite right today and ended up with an hour when I needed to take Dilaudid, the pain reliever which is working better this time than Oxycodone. I wanted to try the lower end of the recommended dosage range so as not to be quite so spaced out, but I really needed the whole six milligrams along with two  Extra Strength Tylenol. During the hour gap when I was under-medicated, my pain was nine on a scale of one to 10. (I never say 10  because I can't even go there.) I should put up little stickies: Keep ahead of the pain! It happens relatively quickly and before I know it, it hurts just to breathe, with a piercing pain occurring just from the incision catching my T-shirt when I inhale. That leads to short quick breaths, and that creates more pain, etc. Well by the end of the day I was doing a better job with scheduling.

On a day like today, it was hard to feel totally bad. The weather was perfect, a gift after the horrible weather this summer.

This morning I took a little walk on the arm of my neighbor, Susan, and later repeated the same thing with Barry, who came over and brought the best comfort food, macaroni and cheese. Meryl came over and brought some good "comfort fruit," cherries.

Back at the hospital, I had gotten a new roommate, an old woman who came in late at night with the usual turning on of lights and parade of hospital personnel asking her this and that. I thought, "here we go again" when she knocked on the door repeatedly while I was in our shared bathroom and later kept calling "Nurse, nurse" because she was disoriented and didn't understand about pressing the call button.

Her daughter had brought her in after she fell and broke her hip. She cried softly on and off throughout the night.

The next day, when lunchtime approached and no one had visited, I found her sitting in the semi-dark, eating lunch. I asked her how she was, and she said bored. I opened the curtain dividing the beds so that she could at least look out at something. (I had the window view.) She told me her name is Anne and she has two little granddaughters. I showed her how to work the TV (a nurse couldn't have told her that? or maybe she forgot) and she seemed pleased. When we both complained about the hospital coffee, I shared my little secret with her: Nurse Bill made the best coffee of all the nurses on the floor. Later when he made a pot at my request, I told him Anne would like some also. All was well in coffee-dom.

After that, when I went out to do my two laps around the nurses' station, she smiled and clapped at my first time around and gave me a little fist pump after the second. I wanted to say goodbye when I left later that day, but she was at physical therapy. I hope she'll be OK.

In talking to Bill about the problem of shared hospital rooms and the increasing numbers of hospitals offering private rooms, I thought this would make a good topic for my Newsmax blog. Sure enough, when I did a Google search, I found many stories like this one headlined, "Why Shared Hospital Rooms are Becoming Obsolete."

Sunday, July 28, 2013

Surgery, A; sleeping conditions, F

I started to write early this morning but stopped when I saw that I had three typos in three words. In other words, I couldn't find the keys. But after I got my pain medication and coffee from the nurses, I began to perk up.

Yes, Mark, I can get good coffee even though I am not on my usual floor of the hospital, although Starbucks it's not. Also, I can't drink my Coke because I have had abdominal surgery. So, there you have it, first things first.

The surgery Thursday went well.  Dr. Steele saw me afterwards and said he got everything. Then I went to a room on the 12th floor. My roommate, who had the same kind of surgery,  has MS. Overnight on Thursday, the light went on on her side, which I can easily see from mine. People rushed in and out. In the morning, when I went to take a walk with my nurse (a short distance around the nurses' station with, my walker, which I done before) I passed out after a few steps. I don't remember this, but he said that I wasn't responding to his questions, so he pushed a chair under me. I quickly came to, and he walked me back to me room. My blood pressure was quite low. It returned to normal after I got some fluids.

Friday night was even worse. I think she was having trouble because I could hear a whooshing sound like she was inhaling on something. The lights went on for about two hours this time. I turned on my TV but that didn't help. I felt bad for her, but it was an untenable situation for me. I called our shared nurse over and started to cry. I said I needed to heal too, and I wasn't going to be able to do it this way. She said she would try to get me a private room, which I did not want because I did not want to pay the extra bill. My roommate needed the private room, and her insurance should pay for it because it is medically necessary. In any case, a patient like me, just a day after abdominal surgery shouldn't have to figure this out. I said to just wheel me onto the sixth floor for the night (or onto any other floor, for all I cared). The commotion finally subsided and I got a little sleep.

Katie came over at lunch after I had repeatedly spilled my water while falling asleep. She told me to just give up and take a nap, but I wanted see her. She put her hand out to catch mine several times. At one point I swept my arms out in front of me and told her I was doing downward facing dog on the beach. Finally I gave up and took a nap, waking around 4. I called Emily and told her I had slept until Saturday. She convinced me that it was really Friday. Diane then called twice and couldn't make any sense of what I was saying, so she called the nurses' station got filled her in.

Today is better, but when I asked for my morning meds and my nurse asked me to rate my pain on a scale of 1 to 10, I said it was a 9. I ate breakfast, talked on the phone, wrote this and walked down the hall with Margaret, hands free. The pain comes back quickly. It is already a 7.

Time to call for the nurse again.

Tuesday, July 23, 2013

From here to there and back again

Life lately has consisted of memorable occasions alternating with hospitalizations: Ben and Meghan's wedding in April followed by pneumonia in May, and now Jessica and Dan's wedding on Sunday to be followed by surgery for removal of my kidney lesion on Thursday.

Well, at least I made it to the weddings, and they make good fuel for getting through being in the hospital.

Jessica is my high school friend Emily's daughter. It was really important for me to recover from the pneumonia on time to get there. My high school friends and I share all our big occasions. It was a chance for us to be together and to share Jessica's joyful celebration with her and with Emily's other friends and relatives whom we have come to know over the years.

Having flown to Pittsburgh on Friday, I returned to Hartford yesterday and proceeded to drive to Boston for my pre-op appointment.

I was so tired from the busy weekend that I stopped in a rest area to take a nap. When I awoke with a jolt, I thought I was still on the airplane.

After waiting more than an hour for my pre-op appointment, I was passed from person to person. First, a researcher from Dana-Farber asked permission to take some extra blood one time only and to study any tissue left after the pathology department took what they needed. Forms were produced for me to sign. Next a researcher from Brigham and Women's asked the same thing, apologizing for the fact that the two entities had not coordinated their efforts. I said I would get him a good place in line if he got me some action in the pre-op schedule.

The nurse appeared and took me in. We went over my medication list and requirements for preparing for surgery, including, very importantly, not applying any hair product like gel because the alcohol content in it might make my hair catch on fire. I'm glad I found that out.

I had gotten my labs taken from my right arm, and now a phlebotomist appeared with a tray full of tubes. One was for typing my blood and the rest were for research. So then I got stuck in my left arm. (I already know that my blood type is B, which is Denise's and not my old type, O Positive. Hum Twilight Zone music here.)

 I was drained. I drove to Diane and David's, had an early dinner and went to bed, then drove back home today and will go back tomorrow. I'll sleep in Newton again and then return to the hospital bright and early at 5:30 a.m. Surgery is at 7:30. I'll welcome the chance to take a nap.

Thursday, July 18, 2013

What, me worry?

In thumbing through the pages of the daily calendar of Jewish humor that Ben and Meg gave me for Hanukkah, I have fine-tuned my own motto:

"I have to keep worrying, or else something bad might happen."

Most of us Jews have this seed of anxiety embedded in us after centuries of persecution, of always having to look over our shoulder. But still, we can try to re-engineer ourselves to see the glass half full, and that is what I am attempting with another bump in the road coming up. So let's try:

"Why worry when there's nothing you can do about it?"

It's not as funny as the other way, but it is more reasonable.

So, this seems to be my pattern: Get knocked down, get up, get knocked down, get up, etc.

I have regained my strength after my bout of pneumonia. I am more stable in yoga and doing much better at tennis, earning compliments from the tennis ladies for tossing the ball higher on my serve, running after more balls and hitting them with conviction.

I am squeezing in as much tennis as possible before the surgery on my kidney in a week, hoping that I won't lose too much of the progress, but still, worrying.

I am not really concerned about the outcome of the surgery, but rather not looking forward to having to suffer through pain afterwards, again. I know that since I've made it through fine before, I can do it again.

Repeat surgeries for this and that are in some ways like repeat Caesareans. The first was a total shock to my system. I didn't believe it when they said each successive one was easier, but in fact the next two were.

Meanwhile, we crazy tennis ladies have been playing in the heat. I think we're smart enough to stop if we don't feel well, but once we got going on Tuesday it was fun. Also, we are remembering to hydrate.

Tuesday, July 16, 2013

Fun in the (hot) sun at tennis trip to Newport

Ben and I flank the statue of tennis legend Fred Perry.
Ben and I had our usual good time in Newport at the Hall of Fame Tennis Championships on Sunday, but I only know the winner because I read about it.

It was so hot up in the stands that I began to fee a little light-headed, even after we each had the traditional delicious frozen lemonade. I said I really had to leave, and inching our way down the steps actually provided the best view. You can only move on the changeover, and we could only make it a few rows at a time because other people were doing the same thing. As we got closer, you could really hear the sound of the ball hitting the racquet. It's something you don't get on TV.

View from the restaurant.
We saw about a set and a half as Nicolas Mahut defeated Lleyton Hewitt 5-7, 7-5, 6-3 on the grass courts. The part we saw plus just being there was definitely enough to make the trip worthwhile. We had lunch at a restaurant with a view of the harbor, got serenaded by musicians playing lively music at the entrance to the grounds and afterwards walked down to the harbor and enjoyed the view.

You see some of the most beautiful views just driving there. Somehow I thought we could also do the Cliff Walk, but we'll have to save that for another day.

Like mother, like son, Ben lead us past a few coffee places until we got to Starbucks. I usually prefer hot coffee, but the iced coffee on that day really hit the spot. I wanted to jump into the water, but that wouldn't have been a good idea.
Musicians serenade visitors to the Tennis Hall of Fame Championships.
Down at the harbor.

Tuesday, July 9, 2013

A stick in the arm

I got a blood test locally yesterday because Dr. Alyea wanted to see in between appointments how my liver is doing with the reduced dose of 4 mgs. of prednisone a day.

I held out my arms to the phlebotomist. "You poor thing," she said. "You've been stuck a lot."

Ha. That is the understatement of the year.

I said it was from leukemia.

"Are you still getting treatment?" she asked.

I get this question often. I like it because it's so easy to answer: No!

Then I told her I am just about 4 1/2 years out. (Note: I still can't figure out how to make real fractions on Microsoft word. All the answers in a google search are too complicated for me. Anyone who has an easy answer, please leave it in a comment.)

And then I told her five years is the magic number. Sometimes I say "six months to go" with confidence. Sometimes, like yesterday, I need to say something like "if I make it," as though to ward off evil spirits like knocking wood. (Jews don't knock on wood because we don't believe in evil spirits, but I can't help myself.)

Anyway...The phlebotomist said, "You'll make it."

So. Amen.

Saturday, July 6, 2013

A week in the heat

Katie came home from Boston Thursday to find me in the garden pulling weeds. I was bent over, dripping sweat, scratching bug bites.

"You look miserable," she said. "Go in and take a shower and I'll finish up." I guess I needed her to come from Boston to state the obvious. At this point I'm not any good at gardening. I trample flowers, and once I even fell on them.

As everyone in these parts knows, the rain was good for the flowers – and weeds. And now the heat just saps your energy. I think I am going to have to break down and call the young woman who weeded for me in the beginning of the season. She did a god job, but I don't feel like spending the money, especially in light of the humongous college tuition bill I have to pay." Really?" You might ask. "You'll splurge on a Broadway show but you won't make life a little easier by paying a small amount for help in the garden?" (Joe is not a candidate because he has been busy mowing the hayfield that was the lawn and also working and umping to earn extra money.)

I once read a newspaper story saying that if you tallied up the amount you spent on buying coffee over the course of a year, you would see that it's a large amount, and therefore you shouldn't do it.

"Really?" my friend Chip said as we got a coffee at one of our favorite spots. "We can't even buy ourselves a cup of coffee?"

Also, I won't turn on the downstairs air-conditioning until I am really really hot. This is partially because of environmental reasons and partly because of the electric bill. I do, however, turn it on in my room, where Maddie and I sleep comfortably. The other day Joe came down to find me lying on the couch, reading a little but mostly dozing off and staring at the ceiling. He went and turned the AC on. Meanwhile, my friend Carolyn, Chip's wife, motivated me to get up by inviting me to drink iced tea on their porch.

Yesterday I was glued to the longest semi-final in Wimbledon history, between Juan Martin del Potro and Novac Djokovic, which Djokovic won in a nail-biter.  Then I wisely packed up my computer and went down to the air-conditioned Thirsty Mind, where I had a cup of coffee and focused on writing my next blog post for Newsmax Health.

Next it was down to Longmeadow to play doubles on the clay courts. At 6 p.m., it was still 91 degrees, but we got a court in the shade, so it wasn't that bad. I am playing pretty well. I hit a searing (for me!) backhand, and my friend Deb asked, "Where did that come from?"

"From watching Wimbledon," I said.

Watching the top players reminds you of things that are valuable not only in tennis but also in life.

Eye on the ball. Follow through. Keep moving your feet.

Tuesday, July 2, 2013

The sun shines on the Shakespeare line

Hamish Linklater and Jesse Tyler Ferguson in "The Comedy of Errors"
The weather has been terrible around here, with tennis rained out every day last week.

So it was with some concern about whether the show would go on that I headed to New York Friday for our fourth annual trip to Shakespeare in the Park, presented outdoors at the Delacorte Theater. Katie said that even if it rained, she would sit on the line awaiting the free tickets in the hopes that it would clear up by the 8:30 p.m. curtain. But we were pleasantly surprised. It was sunny all day Saturday, although it was miserably hot, especially when we walked on the baked pavement.

Katie and me on the Shakespeare line
Having stayed over Friday night with my cousin Jeanne, we decided we had better get up earlier than usual because it was a Saturday and also the last weekend of "The Comedy of Errors." So we got up at 6:15 a.m. I had bought muffins the day before, but we didn't even stop for coffee. Carrying two chairs plus our supplies, we got to the line at 7 a.m., about an hour earlier than usual. Even at that early hour, we were about three-quarters of the way back. After we got settled, I asked the first person on line what time he had gotten there. He said he was at the park entrance at 10 p.m. and spent the night waiting to enter at 6 a.m. Craaaaaazy.

Walking up and down the line, you see people playing games on tray tables, people who actually brought an inflatable mattress, and of course people with folding chairs and blankets. A scattering of dogs actually sat quietly on a blanket. Mine would not do that!

Staffers patrol the line on the alert for people who break the cardinal rule: No leaving the park. They see everything. A woman behind us did leave the park, and when she returned, a staffer told her she could not get a ticket. Luckily for her, everyone gets two tickets, and her friend got one for her.

Since the café did not open on time at 8 for coffee, a couple of us got permission to search for coffee outside of the park. On my way back to tell Katie I was leaving, I passed a group of people drinking Starbucks coffee from a box. When I asked them where they got it, they offered me a cup. Who said New Yorkers aren't friendly?

Our five hours went by quickly. With about 15 minutes to go until they gave out the tickets at noon, the call came to pack up. As the line started to move, we couldn't close one of the chairs, and a gap opened up in front of us. "Leave them behind! Leave them behind!" came a voice from the front of the line. We grabbed the open chair and closed the gap. Phew!

Oh, you might wonder, how was the play?

At 90 intermissionless minutes, this early Shakespeare work about mistaken identities was fast and fun. Chaos ensues when two pairs of separated twins end up in the same place. The play is set in upstate New York in the 1940s, with the Duke becoming a mobster speaking in Brooklynese and the other characters following suit, leading to Shakespeare like most of us have never seen or heard before.

Unlike in most productions, each set of twins is played by one actor racing on and off the stage, with Hamish Linklater playing Antipholus of Syracuse and Antipholus of Ephesus, and Jesse Tyler Ferguson playing the servant to each man.

Ferguson has frequently performed at Shakepeare in the Park, but I only started paying close attention to him since becoming a fan of "Modern Family," in which he plays Mitchell. It's fun to see an actor you know from TV metamorphose into something entirely different.

I'd do it all over again to see the next show, a musical version of "Love's Labours Lost" playing July 23 through Aug. 18. Alas, I might not have recovered from my July 25 surgery by then, but we will see.