Wednesday, June 30, 2010

Up stairs, down stairs

Monday started out perfectly. I went down to Longmeadow and hit some balls on a clay court with Donna. Donna was very patient. I can hit them, if you count miss-hits, but I can't move more than a step from each spot. She mostly hit them to me and we managed some decent rallies. It felt good just to hit with her.

Things went down, and thankfully back up, after that.

Dr. Alyea called that evening at 10:30 after I had gotten my blood tested locally after tennis.

He said the lab just called him about some results.

I sat down at the bottom of the stairs, panic setting in. What kind of news does a doctor deliver at 10:30 at night?

But he quickly got to the point. My glucose was very high – 400 – (normal is 65-105) and my potassium was high too, at 6 (normal is 3.5-5). He wanted me to have blood drawn the next day. The plan was for me to call Melissa in the morning to have the paperwork sent over.

Whew. I didn't realize until later that 400 was dangerously high, so I went to bed relieved.

Yesterday morning, Melissa said they actually wanted me to come in; that way if there was still a problem, they could fix it. "Could I get the blood test today and come in tomorrow?" I asked. "We'd rather you come in today," she said.


Katie had my car with her at work (she's a camp counselor), and Joe needed his car to get to his baseball game. If it was an emergency, he would have bowed out of the game to take me, but it wasn't. We couldn't go pick up my car for me to drive, because then Katie would have been stranded.

So Joe drove me to Boston around 1, came back for his game, then turned around and got me around 10 p.m. It's an hour-and-a-half each way, not too bad once you get used to it, but kind of much to do twice in one day. Then there was the issue of me getting stranded there until around 10 p.m.

My counts weren't bad. Thanks to a dose of Kayexalate (ranks up there with Mepron when it comes to foul-tasting medicine) my potassium went down to 4.9. My glucose went down to 223 (I don't know why), still high but much better. Sodium is still low, at 125 (normal is 135-145), but blood pressure was high.

I don't know what to make of this. Melissa said much is probably drug-related. I bought a blood-pressure monitor, which I'm supposed to use once a day. Also went back on Glipizin, a pill that lowers sugar levels. I guess I'm temporarily diabetic, but the pill should get me back to normal. My diet probably doesn't have a lot to do with it, but I should lower my intake of carbs, which I eat too much of anyway. Not sure what to do about the blood pressure. They already raised my dose of bp medication, and nobody wants to raise it again.

I was done around 4, which left about six hours to kill. Diane was at the Cape. Margaret was at the Cape. Wave of self-pity. EVERYONE is at the Cape. Talked to Ben. Paraphrase: "It's a beautiful day and you're in one of the greatest cities in the world. Just go out and wander around!"

Up I got. Adventure time. Took the T to the Prudential Center. Climbed a lot of stairs. Found the Cheesecake Factory on the first level and got a table outside. Ate salmon and salad and read Lucy Grealy's "Anatomy of a Face." It was a good spot to watch passers-by as the sun cast its afternoon glow on the busy street.

Next stop: the train station at the Hynes Convention Center, where all of the multiple green lines converge. My plan was to go to Diane's and wait for Joe there. I like to consider myself a New Yorker, and my city instincts would probably come back to me if I moved, but now I am a hobbled country bumpkin with memory problems. Had to remember Riverside D (the line she's on) and Eliot (her stop). Repeated it several times.

Walked quite a ways on Massachusetts Avenue. Saw the Hynes stop. Also saw people eating ice cream. Turned the corner onto Newbury Street and found shop selling homemade ice cream. Diet starts tomorrow. Ordered chocolate chip cone. Perfect. Rich and creamy, it dripped down my hand. Transferred to cup and went outside, part of a crowd doing the same thing.

Joe called and said he was about half-way back to Boston. Found Riverside line. More stairs. Took train to Eliot, where Joe met me in the parking lot.

Home around 11:30.

This morning watched some Wimbledon, mostly Nadal-Soderling.

Fell asleep sitting up.

Friday, June 25, 2010

The magic of tennis

John Isner Thursday at Wimbledon after defeating Nicolas
Mahut in a record-breaking, 11-hour, five-minute match.
The score in the fifth set was 70-68.

When Dr. Alyea walks into the exam room and asks if I've been watching the tennis, I usually relax, because I figure if he had dire news to deliver, he wouldn't enter asking about tennis. Of course I never know if he's seen my numbers yet or not, unless he enters with a print-out.

It's magical thinking, rather than anything based in fact. I'm sure other people have their own versions: If he rubs his nose twice, if he wears the blue tie, if I wear the same earrings, etc. This of course extends beyond doctor appointments.

In any case, it helps calm my nerves if we talk about tennis while he's pulling up my numbers on the computer. Tennis usually comes up during a Grand Slam tournament, and sure enough, on Monday, Day One of Wimbledon, he came into the exam room and asked, "You watching any tennis?"

I felt like a bad tennis fan when I answered that I don't usually watch the early rounds.

But for once I did watch the first round. Joe was out and called me Wednesday to tell me that there was a long match going on at Wimbledon, with the fifth-set score around 32-32. I went to turn the TV on and took several minutes to find the station. I sometimes have trouble with our newfangled system with all the wires and options. It was a challenge finding ESPN-U, and I despaired that by the time I found it, the match would be over. Ha.

I did find it, and I ended up watching until the match was called due to darkness at 59-59. (It had also been called for darkness on Tuesday.) Joe came in, and we watched together in the den. Ben called to make sure we were watching. My friend Mary came over, and I practically threw her on the couch and told her we were watching TV. Mary, along with the two of us and people all over the world, got hooked.

The match resumed again Thursday at 10:30 a.m. and lasted another hour and five minutes when Isner finally won at 70-68.

Wimbledon has no fifth-set tie-breaker, so players must win by two games. It never has, and likely never will, last this long.

It was amazing to watch this historic event. I'm glad I popped into a first-round match.

As for the exhausted John Isner, he lost swiftly yesterday to Dutchman Thiemo De Bakker, 6-0, 6-3, 6-2.

Maybe watching all that good tennis made my counts go up.

Tuesday, June 22, 2010

Produce reports

I felt particularly paranoid about Monday's visit to Boston, probably because my red count had dropped and also because I felt so pokey.

Rational mind knows all the right things to say by now. Paranoid mind thinks the end is near.

The day started out with a comedy of errors. I have been trying for months to see a dermatologist that I have booked, and then unbooked, for various reasons, such as getting caught at Dana Farber for a transfusion and not being able to get to the dermatologist on time.

Monday I was sure all would go well with my 10:15 a.m. appointment, which was a recheck on several weird spots on my face. When I originally had them checked maybe six months ago, the doctor said they were OK. She gave me some cream, but the spots never entirely went away.

The dermatologist is at 850 Boylston Street, right on my way to Dana Farber. I saw 950, then I was in the 700s and going down. I was also in traffic. So I looped back and tried again. Couldn't find 850. Looped again but this time I stopped to call.

It was 10:30. The woman who answered the phone said it's very hard to find because it's tucked back off the street and looks more like the hotel that it used to be than the office building it is now.

By the way, she said, as we were talking someone went into the computer and canceled the appointment. For 15 minutes? When a doctor never takes you on time? Yup, that's their policy. I rescheduled for two weeks.

When I told Dr. Alyea, he sounded surprised. He had never heard of anyone being canceled for 15 minutes. He also wondered if they were actually going to take me on time and guessed that they might keep me for more than 15 minutes. At this point, will I go up to the desk and point it out?

Psssst. Leave earlier! Allow for getting lost! Allow for traffic!

I know, but for me and some other people who've discussed this pattern, a skewed sense of time makes me think I can do more in a period of time than I actually can do. I get a little behind schedule, then I lose my focus and circle around and around looking for things I "need," such as book, water, snack etc.

In any case, I headed down to Dana Farber. I have to admit it was nice to be early for a change.

Generally Alyea said he was pleased with my counts. My white count was stable at a little over 8, and my red count went up to a whopping 26. He said my platelets were up a little too. He didn't tell me the number and I never got around to asking him, mainly because I was enjoying the relief of my reprieve from (imagined) relapse.

I went down to 20 mg. of prednisone, and he said our biggest challenge ahead is balancing this decrease with the need to keep my liver in line. I told him I felt a little strange, and he said that can be a side-effect of getting off prednisone. My body has used it so long as a crutch that now I have to deal with withdrawal symptoms.

Finally, the salt. He doubled my blood-pressure medicine, because my BP was pretty high. But unlike most people with high blood-pressure who are told to decrease salt, I have to increase salt intake because my sodium has been low. They really wanted me to get into the normal range, so they prescribed salty snacks and two salt tabs a day. I read on the bottle that you can take five, so I increased it to three a day. Which is when my ankles and feet started swelling up.

The three brought the sodium exactly to the lowest end of normal, 135, but due to the swelling, the kidney doctor said to go back down to two. Which I did, wondering how that was going to work. Monday the sodium was back down again, to 127. Dr. Alyea said to go back to three. Huh? Joe came up with a good idea: alternate two and three every other day. So we'll see.

I felt like celebrating with a Reuben sandwich. Where do these cravings come from?

Anyway, Diane told me of a good deli in Waban, a little town which is also where I get my Starbucks. So I parked at Starbucks, climbed up a little hill to another street, and came upon Barry's, a little Jewish deli. I went in and got my Reuben. It was good but not great, a little two greasy and not enough corned beef. But it did the trick.

I went back across the street for coffee for the road, and I was done. Sort of. The food I eat on clinic day is important. So at the other end, a degree of satisfaction depends on what I find when I stop at Randall's, a built-up farm stand with a bakery, deli and other upscale items.

Strawberries are in their brief local season. I picked up a basket and, like a crazy lady, stood inhaling their fragrance. I also got short cakes and whipped cream. The strawberries are so good, you tend to buy too many of them, but they don't last long. I've tried freezing them, but they never come out well, although they're OK for sticking in the blender.

The blueberries, coming now from New Jersey, are excellent – plump and flavorful – maybe even better than the strawberries.

Peaches are coming from closer than they were – Georgia, I think – but they're never really good until they come from New Jersey in about a month and then from our area after that. The peaches were a disappointment. I took a bite out of one, then another, and they were all mealy. What are you supposed to do? Return a bag full of mealy peaches with one bite out of each? I threw them away.

Finally, there's the cherry problem. I really like cherries, and when we got a batch from the USA (California) a few weeks ago, I was happy. But they were $7.99 a pound. They went down to $4.99, and then a dollar lower. That was low enough to get a small bag. Good, but not great yet. Monday they were back up a dollar. No more cherries for me until the price is more reasonable.

That's OK. I went home and made strawberry shortcake with blueberries. Diane had brought me a similar red, white and blue concoction one July 4 when I was in the hospital. They're such cheerful little things. And since the whipped cream keeps getting absorbed, you can keep reapplying it.

Good stuff.

Thursday, June 17, 2010

(Dog) Progress Report

Poor baby still has to wear the E-collar

She's allowed to have it off now, but she goes after her incision and, the latest thing, her paws, where she has a yeast infection. She also has a yeast infection in her ears, something she gets on and off and which was maybe brought on by having her ears inside the collar so much. By the way, she looks fat in this photo, but it's because of the way she's lying. She actually is at her "ideal weight," 62 pounds. (Just wanted to straighten that out in case anyone is judging her.)

I took her to the vet a week ago because when I tried to walk her without the collar, she was crazed. She turned around and around and couldn't stop scratching and gnawing at her paws. The doctor diagnosed the yeast infection and gave her drops and a wash for the ears. She also prescribed Benadryl for itch. And they gave her an oatmeal bath. She said the infection in her paws would heal if she wasn't licking them. So we were to put the collar back on if she couldn't keep away.

She looks so pathetic, I want to get it off. So far within a few minutes she's licking her feet or or her incision. Today was better. She went a couple of hours before she gave in and I had to put the collar back on.

I'll probably call to see if there's anything more to do about the paws. The incision looks great.

Yesterday I checked my Visa balance and it was over $4,000. My bill is never that high, and I figured it was fraud. I called and spoke to a customer service rep who said the big bills were from the local auto repair shop (forgot about those tires and alignment) and from a veterinary hospital.

Oh! The dog. Right. I said this out loud and we had a nice brief chat. I told her the dog was hit by a car, hence, the high vet bill which I had maybe tried to forget. She said she hoped the dog was OK, I told her yes, and she wished me luck.

The first installation, when she stayed overnight and had surgery, was $1,500. I figured I had done pretty well. But she went back many times, often leaving with medicine. Each time was between $60 to $80, though this last visit was $100.

I would have done it anyway, and although among some people it is not PC to even mention the price, I have to say the total amount spent (I don't have an exact amount) was incredibly high, especially for someone out of work.

I always have a dog, except for the necessary gap when I recover from losing one. I never got pet insurance, and I don't think I will now.

All that said, I am very happy to have this one, lying next to me on her bed, breathing softly.

Saturday, June 12, 2010

Balancing act

Fix one thing, another goes out of whack. That is often my experience.

I went to Boston Wednesday instead of the usual Monday so I could meet with a kidney specialist, Dr. Humphries. When I first saw the note that I was scheduled to see a nephrologist, I was taken aback due to misunderstanding the word. I thought it meant someone who studied dead people. "I think I'm still alive," I thought. Then I remembered that this was someone for kidneys and that a necrologist was for dead people. Geez.

Barry drove me in because I felt kind of shaky. My hematocrit had gone down to 24, meaning I would need a transfusion if the number didn't pick up on its own.

First I saw the kidney doctor, who was very pleasant. My ankles have been swelling, and he said that's because I'm taking in too much salt. My sodium has been quite low, so I was doing what I thought was best for bringing it up: salty snacks, salt on food and salt tablets. Melissa had said I could take two a day, and then I read the bottle and it said up to five a day. So I added a third.

That finally brought my sodium to the lowest end of normal, but apparently it was too much. I don't change my meds without asking, but I thought a salt tablet didn't count. Apparently wrong. Now I'm off salty snacks and the extra tab. I hope my sodium stays up there. My potassium, which had gone too high, finally got down to the high end of normal. I am supposed to take a sandpapery powder in water, Kayexalate, to bring it down.

He said my kidneys looked normal now but they were badly scarred from the kidney failure.

He said he'd be in touch with Melissa and Dr. Alyea and that he'd see me in four months. ("Four months!" I thought. "He expects me to be alive in four months. Cool!" Kind of depressing thought process, but understandable. I hope with time this sort of thinking abates.)

Meanwhile Melissa said my hematocrit came back up by itself to 27. My white count was stable at around 8, but my platelets had fallen from over 100 back to 59. That really worries me. But Melissa said she had talked to Dr. Alyea and he said not to worry. They've bounced back and forth before. Okaaaay then, I will try not to worry if he says not to.

Physical therapy has been going very well. My therapist said on Thursday that I was doing some balancing exercises that I couldn't have done when I came in. I like it when they bring out the toys: balls, hurdles, bouncebacks etc.

I'm supposed to do something at home every day, but going out of the house gives you more motivation. Also for some reason I feel stronger there. Often at home I get stuck when I try to get out of a chair, but at least I do get out, and I manage most days to do my mile and a half or more walk, alas, without a dog for now.

Thursday, June 10, 2010

Graduation day brightens up

Caps off at the South Hadley High School graduation.

Katie gets her diploma.
Ben, Katie and Joe after graduation.

Sunday, graduation day, dawned rainy and cool. It wasn't too long before the ceremony outdoors at Mt. Holyoke College's amphitheater was moved inside to the high school gym. Enthusiasm inside the house was dampened, and there were a couple of clashes.

We sprung into action. Joe's graduation was inside too, and they gave every graduate two tickets. Jim and I were the only ones who got to go. This time, at least, they didn't have tickets; they just asked graduates to bring as few people as possible.

We were five: Joe, Ben, Diane, Jim and me. Jane and Jim went in separately. Other than it being really hot, the ceremony was nice. Katie and her friends sang a few songs as transitions, and Katie spoke a few introductory words. The speakers went along at a good clip, something they might have not done outside.

Afterwards, we had a small number of people here for hamburgers, hot dogs and a variety of salads that Margaret made. Margaret, who had stayed behind, set a beautiful table.

Katie and her friend Betty sang a couple of songs with Betty on guitar. They sounded clear and beautiful. The women were in the kitchen clustered around the singers, while the guys were outside at the patio table. (How'd that happen? Like the men retiring for a cigar and the women having ladylike conversation in olden times.) The men drifted closer to hear better. Everyone beamed.

Planter adds dimension

People were not exactly holding their breath waiting for this photo, but several wanted to see the new planter in my backyard. Here it is.

I've never had many planters, but I realized that even one adds a new dimension to the yard. It extends the garden without you having to do anything but plop the planter down. (And of course plant it, or buy it.) I'm really enjoying this one. From where I usually sit at the kitchen table, it's right outside the sliding glass door that leads to the back. I think it's very sweet.

Thursday, June 3, 2010

Time to celebrate

It's all graduation, (mostly) all the time.

We've also got Maddie needing a lot of TLC and many trips to the vet, but she is healing very well, so first things first:

Katie's graduation from South Hadley High School is this Sunday, June 6. A stream of activities includes parties and school events. One of my jobs is to figure out where I am invited. Yes to the scholarship award program at the high school yesterday. Yes to the baccalaureate program tomorrow. No to the senior banquet after the baccalaureate. No to some parties, yes to others.

I'm not sure what to expect from the baccalaureate. I didn't go to Ben or Joe's. I guess it's a big celebration. A slide show of the seniors then and now is planned, with music to cry by.

Katie and two friends, Connie and Rachel, shared a party at Rachel's house this past Sunday, the three families participating in planning and splitting the cost. Katie's dad helped too. It turned out very well. Katie's friend Connie baked an incredible cake made of four pieces, each one forming a digit in the number 2010. Each piece was its own cake; I believe they were lemon, chocolate mint chip, strawberry shortcake and peanut butter.

After graduation this Sunday we'll have a small party attended by Diane and David and and a few friends who are like extended family. Joe is already here, and Ben will come from New York.

It's all very exciting!

This has led to a rare urge to clean. I swept up a lot of pine needles off the little deck where the grill is and in front near the steps. I wanted to get them into the cart to dump them in the woods, and also pull out some weeds where I was sweeping, but I made myself stop to let Joe or Katie get closer to the dirty work, as per doctors' orders.

Inspired by gardeners Ann and Susan, I want to buy some more flowers for my planters, but it might not get done before the weekend. I walked to the farmers' market on the town common and splurged on a planter put together by a local woman. From her garden, she chose lobelia, impatiens and a green butterfly-shaped plant whose name I forget.

Way too early for me, Katie leaves Aug. 22 for orientation at Brandeis University.

On the dog side, Maddie is healing remarkably well. She has to wear what most people call a lampshade around her head, because as soon as it's off, she goes right for her stitches. We take it off when we walk her (not very far) or feed her. She has to go back to the vet every few days. Usually we do it in twos, but the last time I did it by myself when we realized I could get her in and out of the car alone. The bandage has come off and gone back on, depending on how the stitches look. It was on, but last time the vet took it off so the area could get some air. We return tomorrow.

We could be going closer, to our regular vet, but we decided to stay with the emergency hospital – Veterinary Emergency & Specialty Hospital – in South Deerfield, Mass. – just to finish the job with the same people. It's about 20 minutes away, but the more we go, the easier it seems. Also we've all been so impressed by the veterinarians there.