Monday, May 31, 2010

Who's the mother?

I am one year four months out, and I've been pulling weeds.

So the dirt contains fungi that you inhale, and if you're immune suppressed, it can cause infection with a fungus called Aspergillus that can make you very sick. I've been there. During my first round with leukemia in 2003, I pulled just a few weeds out of the garden and ended up with surgery to remove the fungal ball that settled on my lung.

Planting is an important ritual here. My mother loved her small garden at their beach house. When she couldn't sleep, she'd relax by closing her eyes and planning her garden. Frankly, I don't like it that much, but the weeding sucks you in, and the rest, once you start, can get pretty consuming.

Katie and I went to the greenhouse the other day to pick out our annuals. I have a decent number of perennials, but I always fill in. I was looking at one empty spot and couldn't figure out what was wrong. Then I remembered that there had been a big patch of a tall plant that bloomed in fall, some kind of geranium with small flowers. No trace of it. I figure it either just died, someone pulled it out, or it just didn't feel like blooming this year.

Anyway, I started unloading the plants and placing them. Katie did the whole thing last year when I was too close to transplant. But I figured this year was different, and I wanted to dig in the dirt.

Katie asked, "Did you just decide you were going to do this or did someone say it's OK?" She snatched my garden tools and gloves.

I hemmed and hawed.

"I've gotten out there and pulled weeds. I figured it was OK. "

Katie: "So you've never asked," she said, holding onto the tools.

I called Melissa.

"My daughter and I are having a fight about the garden. She says I shouldn't be in the dirt.

Melissa: "She's absolutly right. If you're in the dirt now, get out! You should stay out of the garden at least until you're off the prednisone."

I'm not even supposed to reach down and pull a weed.

Okaaay, Okaaay.

End of story...for now.

Thursday, May 27, 2010

Midnight musing

The church bells just rang. It's 12:08 a.m.

I always say I'm going to go to bed early. But who wants to go to bed?

Katie is on the back steps playing the ukelele. Joe is in the den watching a movie. It's balmy, such a relief after last night's heat and punishing thunder storm that hit right when I took the dog out.

The dog has stopped whining. I massaged her leg. I picked up my copy of "The Girl With the Dragon Tattoo," which I am having trouble getting into. I want to press ahead until it gets interesting.

Go to bed, go to bed.

One more thing.

I have to have my mug of Ben and Jerry's New York Super Fudge Chunk ice cream. Really decadent. And delicious.

I need to give the dog her pills, wrapped in turkey breast.

I'll aim for getting to bed before 1. Good sleeping weather.


Maddie is healing nicely. They took everything off her leg. It's kind of swollen, so we're supposed to apply a warm compress and massage four times a day. Also she has to keep the "lampshade" on all the time, because she goes right for the leg. They said she should be able to eat and drink with it on, but she just can't reach, so we take it off for a few minutes while she has a meal, and then we put it right back on.

She apparently has no nerve damage, which is terrific.

I think part of the whining stemmed from hating the lampshade, but she seems to have gotten used to it. We had two good nights of real sleep.

I don't know if we're just imagining it, but she seems depressed. The sad face also probably comes from the pain meds, which make her sleepy. And maybe she misses her routine daily walk. We've been catering to her like a little princess.

I went to physical therapy twice this week (for myself). I went on a bike and used a leg press, then did some floor exercises for balance. My ankles are swollen, and Melissa said I could help by drinking a lot and by walking. Yesterday it was close to 100 degrees, and I walked about a mile around the lake with Deb and her dog, Mary Margaret. At the end she went towards her house and I headed for mine. I was almost home and started to feel I might not make it. Just then my friend Gayle drove by and gave me a ride home. I was supposed to go to a graduation but I just couldn't make it. Gayle deposited me at home and warned against going anywhere. I don't think I could have anyway.

I have to be a little smarter. If they say walk every day, they mean to take conditions into consideration. I messed up a planned event by forging ahead thoughtlessly.

My counts are a little screwed up. A week ago my potassium, usually high, was normal. This week it was high again: 6.3 out of a normal range of 3.5-5.0. This can affect your heart, so I went for an EKG, which was normal. I had to stay for a bag of fluids and a double dose of icky powder mixed with water, Kayexalate. My infusion room nurse said that if it didn't go down after this, they wouldn't let me go. Luckily it did go down, to 5.3. I have to take the drug twice a week and look over the (long) list of potassium rich foods to see what I might be missing.

Sodium, as it often is, was low. I'm trying salt tablets now. Mellisa said my other counts were fine and not to worry, but they looked a little peculiar to me. She also pointed out that I've gone up and down before.

WBC was 9.6 , high. (Normal is 3.8-9.2)
Hematocrit was down to 27.5 (normal is 34.8-43.6)
Platelets were 90 (normal is 155-410). Not over 100 like they were recently.

I went down again on the prednisone, from 40 to 30. There's usually some small thing to be happy about.

Saturday, May 22, 2010

Home sweet home

Maddie came home late last night. She has a splint on the left leg, covered by a bandage and the green wrap. The doctor is concerned about how the leg will heal, because there was a lot of ligament damage, which she discovered the night before when she operated. Right now we will have to see how she heals over time. Tomorrow she returns for a bandage change and a look at the wound.

Luckily, she seems to have escaped with this one major injury. That's much much better than the 15 minutes or so when I thought she was dead. Last night was like having a baby, or, for that matter, like having a puppy. No way she was getting up the stairs, so she slept downstairs on her bed. She has pain medicine and a pain patch, but she still must hurt. There were long stretches of quiet, and then outbursts of loud wailing. It was just Katie and me; Joe had gone back to college to get some stuff, and Ben had returned to New York.

So we ran downstairs, took her out once or twice, and got her back in. The first time out she had to be carried; after that she got out herself and walked back. A couple of times she just stood there whining, looking dazed. I looked back at her. I wished she could tell me what she wanted. Eventually I got her settled, went to bed, slept for a good couple of hours and then heard the whining again.

Katie sat outside in the grass for a while today, reading while Maddie slept next to her. Now Joe is in the den watching the Celtics, the dog stretched out next to him. Ben and Jim did so much already.

It's a good team.

Go Maddie go.

Thursday, May 20, 2010

Maddie hit by a car

Maddie got hit by a car, the grill broke, and the porch light fell down and hit Joe's friend on the head.

What a night. First and of course most important, the dog.

Jim, Katie, Ben and I were planning a nice cookout. I was showing Ben some weeds I wanted him to pull out of the garden, and the dog was puttering around with us. She has done this a lot. If she disappears, it's into the woods behind us, and she always comes back. I said casually, "I'm going to get the dog," and at the same time we heard the screech of tires and the sound of a crying dog.

For some reason, she had run across the street one way and then reversed direction quickly. Bill, the guy who hit her, was driving a big old van. He and his wife stayed and helped. He was really sorry, to the point of tears. I saw Maddie lying in the road, motionless. Jim said I should stay away and that it was very bad. I thought she had died. Bill called the ambulance driver, who came and put a tourniquet on her profusely bleeding left leg. They got her in the car to take her to the nearest animal hospital, and I got a look at her. Her eyes were open and alert and she was breathing. Jim drove and Ben rode in the back with her.

The vet called a few hours later with good news. There is no internal bleeding, though that could still develop in the next 24 hours. The major problem seems to be her leg, which is really torn up. But the vet said she would operate tonight, and she thinks she can save the leg. "She's a lucky dog," she said.

She might even come home tomorrow. I'm a little less worried about getting a bad call in the middle of the night, but I'm still pretty anxious.

Joe is back at school in Maine for a few days, so I wasn't going to call him until I had more solid information, though I was thinking about reconsidering after the "lucky dog" conversation. Before I could change my mind, though, the Internet took care of it for me. The phone rang and it was Joe asking if everything was OK at home, and I asked why he was wondering.

Apparently a friend of his had communicated through Facebook that there was an ambulance in front of the house and a dog lying in the road. Good old Facebook. Can't keep anything quiet for a minute. So now he has been brought up to date.

Joe, Ben and Jim and Katie talked me down after I said I felt guilty for the dog getting away and angry with the guy who hit her.

It wasn't anyone's fault, they said. Stuff happens. She never ran into the street before, so why should I think she would now. The driver did the best he could also, and with the dog dashing one way and then the other, it wasn't his fault. When I went out there, Bill was shaking and kept saying to me, "You're angry, aren't you?" I replied, "I'm not angry, I'm upset."

I explained to everyone that I understood it was nobody's fault, but that doesn't keep me from being upset and yes, probably angry.

By this time it was around 9, Ben and Jim had just gotten back, and we decided we might as well eat something. So Jim put our delicacies – hamburgers and hot dogs – on the grill, which promptly konked out. Now things were feeling out of control. Meanwhile, the porch light, which always wobbles when the door opens, said enough of this and fell on Joe's friend, who had stopped by to deliver hockey equipment that he had borrowed.

Ben, a good positive thinker, was overjoyed with the luck we had tonight. He asked if I was too, and I said yes, I was happy and relieved, but at the same time I'm still stressed by what happened.

Anyway, the food went under the broiler and was finally cooked. I put out the fruit salad and salad and potato chips. Most of it got eaten.

I had also bought a sinful dessert: bite-sized brownies to go with vanilla ice cream. Dessert time came around 10:30. The crowd dispersed and only grabbed a brownie, but I couldn't stop thinking about the dessert.

It's comfort food, and I thought it would help me. So I had one serving and, because it tasted so good, I had another. It's way past a reasonable bed time, and here I am stuffing down sugar. I know that's bad, but sometimes you gotta do what you gotta do.

Monday, May 17, 2010

Handwriting analysis 101

Last week Katie and I were luncheon guests of the South Hadley Women's Club. She and her friends Kristin and Emily each won a college scholarship from the club, which recognized them at lunch.

The guest speaker was a handwriting analyst. She also calls herself a spirit medium, paranormal researcher and a psychic. She can get you in touch with the dead either in a solo session or group. At the meeting, she asked everyone to write a few lines and hand it in. I wasn't going to do it, but one of our hostesses insisted. So I wrote something like: "Years of being a journalist have ruined my handwriting." (On the small piece of paper, that was three lines.)

She read some of them publicly, but she didn't get to mine. Now I was intrigued, so I waved her over to our table and asked her to do mine. "I saw this one but I passed it by because I thought it had information you might not want revealed publicly," she said.


She said she thought I was depressed and that something big had blindsided me. She also looked at Katie and said, "You're her main support, aren't you?" I asked how she knew I was depressed, and she said because instead of being in a straight line, my handwriting slanted down.

Yes I'm depressed! Yes something big got to me, namely, leukemia. Yes Katie is a big support!

By now I was hooked, and I asked my friend Claudia (Kristin's mother) if she would share a session with me and some others where I could talk to my mother.

"After graduation," she said. (Graduation is June 6.)

It's a good thing I didn't book it, because now I have calmed down.

Katie and Joe gave me more perspective.

The speaker told the women mostly general things that could be applied to a lot of people. Sometimes she went quickly through a bunch of character traits until she hit one that applied. She said things that were obvious, such as that Katie was a big support. Actually she said Katie was my main support, but it's more spread out than that. Also a lot of people can say they've been blindsided by something big, according to their definition of "big."

As for talking to my mother, I can do that myself without paying someone.

Well, I'll put it aside for now.


Wednesday, May 12, 2010

Balancing on one foot

To balance on one foot, you have to keep your eyes focused on a spot at eye-level in front of you. If you count slowly to 10 or however long you want to stay, and focus only on the spot, you should be fine. As soon as your mind wanders, you can easily lose your balance. You might wonder if you're doing it correctly, or congratulate yourself on doing a good job, or think about what's for dinner or about the problem of the day. And there goes your balance.

This goes for yoga, as in tree pose, and for dance, as in spotting. I'm thinking about it now because it's part of my physical therapy routine for getting back in shape after I lost my balance and fell several weeks ago.

I used to be able to balance on one foot with no problem. Now it is an issue.

It translates into other areas. When I am walking the dog or driving in the car, the chatter often gets more persistent. Should I this, should I that, what if this, what if that...etc. If you stop yourself and find your "spot," which when you're moving is the area just around you, you can quiet the chatter and regain your mental balance. Of course the whole thing will start all over again, and you need to reset again. I noticed I am doing a slightly better job of remembering to make those adjustments.

I am feeling better and can make it around the lake again without any problems. At my clinic visit Monday, my counts were good – platelets were 106, yay! – but my liver function was still elevated, and I had lost 10 pounds again (in two weeks). Dr. Alyea did not think I was dehydrated, though. He raised the prednisone back to 40 mg. a day, said to keep drinking, and told me that if my stomach problems had not resolved by the end of this week, I would need to have a sigmoidoscopy (up the rear) to confirm Graft Versus Host Disease, which has been suspected.

I have felt better the past couple of days and begun eating without getting sick, so I take that as a good sign.

Sunday, May 9, 2010

Confusing reports on cancer causes

It was one of those reports that made you want to crawl under the covers.

On Thursday, The President's Cancer Panel released a report saying the number of cancer cases caused by environmental exposures has been "grossly underestimated." The panel advising the president said that Americans are facing "grievous harm" from chemicals in the air, food and water that have largely gone unregulated and ignored.

The report noted unexplained rising rates of some cancers in children, and it referred to recent studies that have found industrial chemicals in umbilical-cord blood, which supplies nutrients to fetuses. "To a disturbing extent, babies are born 'pre-polluted,' " the panel wrote.

It suggested filtering tap water and storing water in stainless steel or glass to avoid exposure to BPA and other plastics and also avoid microwaving in plastic; buying produce grown without pesticides or chemical fertilizers; buying meat free of antibiotics and added hormones and avoiding processed or well-done meat.

Some of this we already knew. Some of it rules out most of what is in the supermarket. And some goes against what doctors have told me. I'm supposed to have well-done meat, not avoid it.

The next day, the American Cancer Society criticized the government panel for overstating its case, writing online that the report was unbalanced "by its implication that pollution is the major cause of cancer" and had presented an unproven theory, that environmentally cased cases are grossly underestimated, as if it were a fact.

The author of the statement, Dr. Michael Thun, continued that there are much larger causes of cancer, such as smoking, poor nutrition, obesity and lack of exercise, although he agreed with the panel's concerns about people's exposure to so many chemicals.

But, but, but...

Someone like me had none of the risk factors, except, of course, a lifetime of exposure to a range of chemicals. When I asked my local hematologist upon diagnosis how I even got leukemia, he said, frankly, that if I had gotten massive exposure at a place like Love Canal, I could attribute it to environmental factors, but, otherwise, they just don't know.

No sense of course in looking back. But when these reports come out, you have to wonder. And then you wonder if you exposed yourself and kids, how you can stop doing it. Within reason, you can pick and choose and do what's possible. You could get everything organic (for a higher price). It's easier in summer, with the availability of local produce. Still, some things are hard to give up.

You could drive yourself crazy. Or you could do what my father, who lived to a nice old age, preached, "Everything in moderation."

Friday, May 7, 2010

Dog, and sodium, misbehave

Got lab test results from local blood draw Tuesday which showed that my liver was stable but not normal. Still, I got the go-ahead to reduce the prednisone to 30 mg. from 40. Meanwhile my sodium had dropped, necessitating a recheck yesterday.

I ate as many salty snacks as I could tolerate (I wish it was sugar!) and found out today that it was a little better but still low. I later took a salt pill. We'll see. My stomach is a little messed up again, and I woke up this morning shaky, wobbly and dizzy, then perked up when I had some juice and breakfast. Went for a walk with Barry, and he was kind enough to hold the dog. I hadn't totally recovered my strength from this morning, so that was a good idea.

Man's (and women's and children's) best friend is driving me a little crazy. She has still not resolved her house-training problems. She's good for maybe two days in a row, and then she leaves me an overnight nugget. I've stopped feeding her afternoons, and I've given her the run of the house. She could sleep with me, but she likes it downstairs, where she has her bed and her favorite place, the corner of the couch, covered with an afghan.

All happy, she runs up to get me around 7 a.m. and leads me down. If she's done something, she either cowers or acts like nothing is wrong. I have to drag her over and point it out. From time to time she barks at me. But she is a very passive dog, so I just get her on the leash and bring her over. The vet says I should crate her again, but Maddie was actually kind of weird in the crate. They're not supposed to, but she would do her business in there anyway and then inch away from the mess.

Today she wasn't so great on our walk, either. (I'd say she was "bad," but for dogs, that is not a pc word, as in "No Bad Dogs," only "bad" owners. Oy!) We tied her to the leg of one of the lightweight tables, told her to briefly hold our place, and went into the Mount Holyoke library, where there is a Rao's coffee shop tucked inside. While we were getting our stuff, a student came in and said, "Your dog is freaking out." Barry went out and found that Maddie had dragged the table all the way to the door, where she was whining and barking.

Then we went to the Odyssey Bookshop, an independent store that I like to support, and tied her for a minute or two there. I've done this before, and she usually sits and chills. Again, she went crazy.

So Barry sat with her when I got my books – "The Girl with the Dragon Tattoo," by Stieg Larsson; "Truth and Beauty," by Ann Patchett; and "Autobiography of a Face," by Lucy Grealy.

I'm starting with the first, a bestselling mystery and apparently a quick read, which is our book club choice before we break for the summer.

Meanwhile back to the dog...While I was writing this post I decided I needed a Coke, one of my major comfort foods, or drinks. Down the street at Tailgate Picnic, the place we call the deli, I hooked Maddie's leash on the white picket fence and told her sit quietly on the grass while I ran in.

She was just fine.

Maybe she liked the grass.

Or maybe she had been crying for her good friend Barry, and once it was just the dog and me, she didn't need to fuss.

Anyway, now she is curled up, lightly snoring, sleeping and cute on her bed. Maybe all that carrying-on helped wear her out. Katie and Joe are both out – Katie's in a play that I'm seeing tomorrow, and Joe is watching the Bruin's game with friends – so it is nice to have the dog for company.

Sunday, May 2, 2010

Everyone was happy on prom day

Where did the time go? I ask it over and over as one pre-graduation
event follows another. This time it was the senior prom. (In
photo at right, Nate and Katie adjust his boutoniere.)

She and four friends who've known each other since fifth grade have a routine. They go to someone's house for pictures and then take off from there. Posing on the lawn under a red maple tree, they looked beautiful, with smiles all around.

We parents hung around a little after the "kids" left, long enough for someone to snap a photo of us.

Above, from left, there's Tony, Charles, Rose, Meryl and me. One of Katie's friends whispered to her,
"Now it really is the senior prom." Ha.

On the medical front, not much is happening. I got my blood drawn locally today so I can find out if my liver function has improved. If it has, I may be able to go down to 30 mg. of prednisone, from 40.

I'm also going to do some outpatient physical therapy. I have exercises at home, but it's hard
to get motivated to do them. At least I'm walking again without falling down.