Tuesday, June 30, 2009

Things that make sense

"Finally, something that makes sense!"

That was Joe talking earlier today while getting ready to cook two hot dogs on the grill. He was talking about packaging of hot dog rolls: They now come in packs of six, which makes sense because
hot dogs come in sixes. The rolls used to come eight to a package, which, he explained to me, meant that you had to cook 24 of each to make it all even out.

I love the idea of finding something that makes sense. Sometimes I still get stuck trying to figure out the "why me?" question. Why are people playing tennis, going to plays, eating dinner out, traveling, going to work and generally doing "normal" things and why did I get hit with a serious disease that keeps me from doing those things? If you go there, then of course you have to ask why are so many people worse off than I am – starving, abused, dying in senseless wars, dying from diseases and in general beaten down by any one of life's many misfortunes.

The reason things happen, or don't, is of course fodder for long philosophical discussions. There really aren't any clear answers.

So sometimes we have to find small things that make sense, like hot dog rolls that match up with hot dog packages.

Yesterday, after I had gotten nine vials of blood drawn in the Dana-Farber clinic, the technician asked the usual question: "Do you want coflex or a bandaid?" I chose the coflex, a self-adhesive wrap that comes in many bright colors. She carefully studied the rolls on the countertop and picked a beautiful purple.

"This matches your scarf," she said with a smile.

That made sense. Purple to match purple. I walked away smiling. I guess it doesn't take much.

As for the rest of my visit, the final results of my endoscopy came back. (Nurse practitioner) Melissa said it looked mostly normal, but there was evidence that I might have some mild Graft Versus Host Disease (GVHD). This is not always a bad thing when it's a mild case, but if it's super-serious, it can make you very sick or kill you. She said it could explain my stomach problems and nausea. Anyway, they don't want to give me steroids, the treatment if it gets serious, so they'll just watch it for now.

Platelets were 7, not great but not as bad as last week when they were 3. I was surprised that my hematocrit was down to 22, because I felt OK. White count was up to 5.2.

I got two bags of platelets and two bags of blood, basically closing the place down at 7:30. My driver Joe had to leave earlier, so my brother-in-law, David, kindly drove me back to Western Massachusetts.

I got home late, but at least I got to sleep in my own bed.
Now that's also something that makes sense.

Tuesday, June 23, 2009

Calm and not-so-calm

Walking down the path to the Quabbin was easy; walking up was harder.

Last week my friend Barry and I took a took a drive (with dog) to the Quabbin Reservoir. Located in Belchertown (Mass.), it's not far, but it's like another world. It's peaceful as can be, with beautiful views of water and hills. People love to fish there; bird-lovers go there a lot too. As for me, it's always good to get out of the neighborhood, and we had a good little walk there with Maddie. But it has a strange story that carries with it a slightly eerie feeling. Most people in Massachusetts probably know all about it. It occured to me that people from other states might not. I didn't when I moved here.

The official website gives some of the basic information:

Quabbin Reservoir is one of the largest man-made public water supplies in the United States. Created in the 1930s by the construction of two huge earthen dams, the reservoir is fed by the three branches of the Swift River, and seasonally by the Ware River. Quabbin's water covers 39 square miles, is 18 miles long and has 181 miles of shoreline. When full, Quabbin holds 412 billion gallons of water.

In order to flood the vast area of the Swift River Valley in the 1930s, the entire population of four towns had to be relocated. Hundreds of homes, businesses, a state highway, a railroad line, and 34 cemeteries were also moved or dismantled. Over 6,000 graves were relocated from the Valley to Quabbin Park cemetery.

But this is impersonal and doesn't include much of what people around here know, starting with the names of the four towns: Dana, Prescott, Enfield and Greenwich. The reservoir was created mainly to get water to Boston, and many of the locals were not too happy about being told to leave their homes and let them be knocked down. But they weren't given a choice, and the flooding started in 1939.

One interesting website shows photos of each town the way it used to be. There are also a lot of books on the creation of the reservoir, including a children's book, "Letting Swift River Go," by Jane Yolen, an author who lives in the area. I remember reading it to one of my boys years ago, and when we were finished, he said, "Don't ever read me this book again."

Anyway, it makes for a good outing. The water doesn't cover the whole area, so you can see remnants of stone walls, cellar holes and other things. We stopped for muffins and coffee in nearby Amherst on the way back, making the day complete.

I'm still working on carrying my serenity with me when I go into the clinic. I knew on Monday that my platelets would be low, because the petechiae were popping up on my face. After I saw my counts, I went into a tailspin, imagining my death, my funeral, the works. My platelets were down to 3. They haven't been that low for ages. Actually the rest looked fine: My hematocrit was 27, low enough to be tired but high enough for me to get around without being winded. My white count was still normal at 4.9, but I wasn't happy that it seems to be going down a little: The time before it was 5.2 and before that in the high 5s.

Melissa found me in the infusion room and said not to worry. She said she had talked to Dr. Alyea and he thought there was a reason for the low platelet count. When it was consistently lower, I had been taking a drug called Amicar to help with clotting. When the count was higher, I went off the medication. He said to go back on it because it may have been helping me hold on to the platelets for a longer time.

Melissa also said the white count was fine. She said I could return in a week instead of going twice this week. So I will try to keep my mind off of it. Thanks everyone for your suggestions and support on my last post when I also wrote about being fixated on my counts.

Saturday, June 20, 2009

Full house

It was almost like hearing the pitter-patter of  little feet.

All three kids were home on Thursday. Ben came up from New Jersey for a day and a dinner, and it was great having all three home at once. The talk was constant and interesting, touching on baseball (of course), politics, college (where Katie should go) and life in general.

We had a feast for dinner. Ben cooked some "burgers" and "dogs" on the grill, Joe made some baked chicken wings, baked chicken legs and potatoes, and Katie made salad. Then we sat down and toasted to family and to health and ate the good food.

Ben left early Friday morning, so it was a short visit, but a good one. We had spent a lot of time Thursday just sitting around the kitchen table, wading through a stack of newspapers, talking and drinking coffee. I actually saw him a little on Wednesday night too: Joe drove me to Boston for my clinic visit, but he couldn't stay because he had a baseball game.

Ben happened to have Red Sox tickets, so I took a cab to Diane's and he picked me up after the game. We got home around 1 and then talked to Joe a little. The late night compounded my getting-up problem, but I didn't have much to do the next day, so I didn't really mind.

As for my clinic visit Wednesday, my platelets were back down at 8. My hematocrit was down to 23 – I knew it was low because I had been huffing and puffing on my walk – but my white count was steady at 5.2.

I got two bags of platelets and two bags of blood, clocking in seven-and-a-half hours. The Benadryl, which I always get with Tylenol before a transfusion, really knocked me out this time, even though they check your temperature and blood pressure every 15 minutes. I just kept opening my eyes and konking out.

You get addicted to your counts and are never happy when they are low. I keep thinking there's something bad lurking behind these low counts, but Melissa came into the infusion room and said Dr. Alyea had seen the numbers and wasn't concerned.

I need to go with that, but it's hard to let it all go when I still have clinic visits every five days or so. Today, during my usual drawn-out effort to get out of bed, I found myself studying the small black and blue mark and the Petechiae (tiny red dots that signal low platelet count) around my knee. Were these from before the last transfusion or after it? Were my platelets plummeting?

No way to know until Monday. So, I tell myself for the umpteenth time, try not to think about it. Enjoy the kids. It's easy to do. I love those kids!

Monday, June 15, 2009

Stepping forward and (mentally) stepping back

Friday's endoscopy went off without a hitch. I asked to be really knocked out, so knock me out they did. Joe brought me and drove me home; I slept in the car on the way back and then, back home, crawled into bed and slept for hours, waking up well into the night to stumble downstairs and eat some of the granola Margaret had made me.

My platelets were 21 – good  but not high enough for a procedure. So I had to get a bag of platelets. Margaret came and sat with me and brought me the jar of granola. It was actually from my recipe when I did such things as make granola and grow sprouts in a jar. Margaret also brought the recipe, which I had long ago lost. Who knows, maybe I'll make some someday.

The early report from the endoscopy showed everything was normal. The full report, with biopsy results, will be available later this week.

I've been getting out and about more. It's really hard to get going. As I wrote before, sometimes I stay in bed for a long time, so that I'm taking my morning pills at noon and my noon pills in the afternoon. As soon as I put my legs on the floor, I often climb back into bed. My legs are so stiff, and I feel a little light-headed and nauseous, and I think I just can't do it. So sometimes I lie there for hours while a voice says, "Get up, get up, get up!"

Once I get going, I'm mostly fine, and I often stay up as late as 12:30. This could explain my late sleeping routine. hat is the cycle I have gotten into.

I managed to get going to drive with my friend Barry to the Montague Book Mill, which promotes itself as "Books You Don't Need in a Place You Can't Find." It sells used books in an old gristmill, and sits next to the Sawmill River, which you can hear while you wander through the over-stuffed rooms. I didn't see anything for myself, but I bought two books from Katie's summer reading list, for about half the price in a regular bookstore.

We drank coffee from the adjoining cafe and drank it at a table along the river. It was very peaceful. The drive there is beautiful, and we stopped for strawberries and biscuits. A nice outing.

On Sunday – after much prodding of myself to get out of bed – I put on nice earrings  and going-out-of-the-house clothes and went to Meryl and Danny's for brunch. I enjoyed talking to them and to the other friends they had over. Danny's cooking is always great, and the two blueberry pancakes and the eggs (and Meryl's fruit salad) went down easily. I probably ate more than I would have at home.

In the afternoon, I went to see Ellen and Mike's beautiful new house, and then took a walk around the lake with Mike and their two daughters (in a stoller), Maeve, 2, and Mairead, an infant whose exact age I can't remember. Maddie stole an empty container out of the back of the stroller and ran around with it, but eventually she dropped it and there was no more misbehaving.

I even had leftover energy to do some yoga, stretching and strength exercises when I got home. I put down my mat and felt pretty good going through a series. Then I lay down, closed my eyes, and tried to go through some affirmations. I have misplaced the CD where you get led through it, and it's not as easy doing it on your own. Instead, I kind of drifted off, and negative thoughts churned through my head. I imagined Dr. Alyea telling me I had relapsed again and there was nothing else to do. I pictured my friends crowding around my death-bed. I yanked myself out of it and kind of grumbled, "What's the point of doing all this good stuff when the nightmarish thoughts push through?"

"You are pretty melodramatic," I said to myself. Also I guess I still have to come to terms with the thought that the dark and light side will always be there. So when the dark side pushes through, accept it and try not to get caught in in for very long. When the bright side emerges, enjoy it.

Wednesday, June 10, 2009

Seduced by local strawberries

                                         Joe, top, and Ben used to enjoy
                                                    strawberry picking.
I broke a rule this week. I have been very good at following my dietary restrictions, but I just had to have one forbidden fruit. At 100 days I was allowed to reintroduce almost all kinds of fruit, except for strawberries because they're hard to clean. Now it's local strawberry season, and I couldn't resist. They are so much better than winter strawberries, which are often anemic-looking and have very little taste. The locals are bright red and juicy and they smell and taste great...like summer, even though it's still spring.

I used to take the kids strawberry picking. Joe is now 19 and Ben 23, and they wouldn't think of going now. Back then we went to a nearby farm where you jumped on a wagon and the driver took you to the best fields for picking. Sometimes the kids couldn't help but sample a few. OK, it was hot, and we didn't last long, but we sure picked a lot of strawberries ...probably too many. Then the boys dropped out and Katie came with me. Now we buy them from the farmstands. In addition to having one of the best tastes ever, local strawberries bring back memories.

So I treated myself on the way back from the clinic Monday. I washed them and washed them and peered closely. They looked clean to me. We had them with biscuits and whipped cream and with waffles and maple syrup and just plain.

I was feeling a little guilty, though. I thought of Blanche DuBois saying, "I shall die of eating an unwashed grape out on the ocean."

We'll see. I will try not to gorge on them. Other fruit is tasting pretty good too. It's one of the things that go down easily.

Meanwhile, my platelets were back up to 21 at Monday's visit. Dr. Alyea was very pleased. I didn't really need a transfusion, but there were two bags waiting that were going to expire, so they gave them to me.

I am scheduled for my endoscopy on Friday. I have to go in earlier and get platelets. I have done some catastrophizing about what they will find, but I'm trying to live by the wise words that one woman said to another in the waiting room the other day.

The first woman said she was nervous about her test results.

The second woman said, "I try not to jump to any conclusions about my tests. You never know what they're going to say, so you might as well give up trying to figure it out beforehand."                                   

Friday, June 5, 2009

Of minor mishaps and mental lapses

If you're easily grossed out, maybe you should skip this post. I thought of not writing it, but with one day's worth of hindsight I think it's kind of funny, so here goes.

Yesterday Joe drove me to my clinic appointment. I put on a pair of nice black pants, a purple T-shirt, purple sweater and black jacket. I ate my breakfast of cereal and blueberries and then, in case I threw up, grabbed the blue bag in which the newspaper had been delivered. I've continued to vomit on and off, some days not at all and sometimes twice a day.

We were about halfway there, and on time, when I felt that I might be sick. I tried to stop it by taking deep breaths, but there was no way. I grabbed the bag and lost my breakfast in it. But I hadn't realized the bag had a couple of little holes in it. I didn't know what to do. It was coming out of the holes and going all over my clothes and onto the car. Luckily, Joe had a better bag in the back seat; he reached back and got it. So I got bag number 1 into bag number 2, and at least that was the end of the leaking.

I tried to mop up with napkins, but the car fared better than I did. Since we pass Diane's on the way to the clinic, I called to see if she could lend me some clothes. Of course she said yes. In my shrunken state I'm quite a bit smaller than she is, but I found a pair of pants that I could wear if I rolled the waistband over a few times. I found a shirt too.

I didn't match anymore – gold pants, white shirt and purple sweater. But I had learned a lesson: Always check a bag for holes before throwing up in it.

The clinic visit didn't exactly put a smile on my face. My platelets, which had climbed into the teens and twenties, were back down at 8. I was disappointed, because if they stay higher I can decrease visits to once a week, and I was also a little spooked. Could it be a sign of relapse? (Melissa said no, everything looked fine, and platelets can bounce around.)

I knew my hematocrit would be low, and at 25 it was. My white count was stable at 5.8, although it went down from 7.1, where it was a few weeks ago. It always makes me nervous when that particular number goes down at all, but both Melissa and Dr. Alyea assured me that it is fine where it is. Meanwhile, Dr. Alyea said I should have an endoscopy to try to figure out the cause of the nausea and vomiting, so that is in the works.

I went on to get two bags of platelets and two bags of blood, closing the place down after 7 p.m. Diane had said she'd drive me home, and I felt bad that it got so late, but she didn't seem to mind. 

The patient next to me in the infusion room was getting chemo for lymphoma. I couldn't see him, because the curtain between us was pulled, but I could hear him telling his story, loudly, to his nurse. He said he had had a tumor on his pancreas that was causing him to lose weight and have weakness in his legs. (I'm not sure how this works, but this is what he said.)

I immediately got "hijacked." "When they do the endoscopy, will they discover that pancreatic cancer his been causing my similar symptoms"? I asked myself. 

I told myself that I have been tested so much that such a thing would have been discovered. Then I talked to Emily on the phone. "He was probably eating and losing weight. You are not eating much and you are throwing up." Oh. I wanted to pull the curtain back and ask him, "Hey, were you eating when this happened?"

Then I talked to Jeanne. "Haven't you had enough problems without picking more up from other people? You don't have pancreatic cancer." Oh, right.

Today I did the more sensible thing, which is, instead of just asking around, I talked to my nurse. We were on the phone talking about scheduling the endoscopy, and I told her my thought pattern and asked if she thought I might have pancreatic or some other cancer.

No, she said. She told me what I had told myself, that I have been tested and scanned and nothing like that has shown up. 

It's hard when you're in that infusion room next to someone who talks loudly about his or her symptoms. Next time maybe I should bring an iPod. 

Tuesday, June 2, 2009

How do you spell 'Can't get off the couch'?


Its heavy hand pressed me down on my couch this afternoon. I had my cell phone in one hand and the house phone in the other hand, waiting for the world to somehow rouse me. I had given Katie the newspaper I was reading because it contained a story of interest to us. We had been talking about whether dogs always wag their tails involuntarily or if sometimes they can will themselves to "smile" by wagging. Today's New York Times had a related story headlined, "In that Tucked Tail, Real Pangs of Regret?" It was the opposite emotion, but it raised a similar question about how much control animals have over the signs they give. Katie took the paper into the kitchen, and I thought about getting up to take a walk.

But I couldn't get motivated. I called Katie, who was just one room away, but she didn't hear me. Then I sunk pretty low: I called her on her cell phone. She didn't pick up, but soon after she came back in.

"I have a bad case of inertia," I said. "Hey, that's a good SAT word. I-N-E-R-T-I-A." I then gave her a definition, using my current state as an example.

I guess I had good reason. Yesterday Joe drove me to my clinic appointment, where the bright spot was that my platelets were 21 -- out of the teens. My hematocrit, however, had dropped to 27. I told Melissa I could feel that it was dropping. She said not to worry, that it was OK and I'd probably get blood in the next visit or two. Meanwhile I'm in that limbo where I feel more tired, but my hematocrit is not low enough for a transfusion (they transfuse at 25 to 24).

I slept at Diane's last night because Joe had to leave to get back for his job as an umpire. My friend Chip picked me up Newton this morning and drove me home. I guess the back-and-forth probably added to my fatigue.

I did end up getting the platelets yesterday. My nurse in the transfusion room couldn't get the IV in. She poked me twice, each time jiggling the needle for what seemed like ages while trying to catch a vein. I started getting queasy and considered asking her to get another nurse, but she called for help on her own. The other nurse came and got the IV right in.

Nurse number 1 said, "Sorry, I haven't missed an IV all day." Then, speaking of Nurse number 2, who had left, she said, "I'll have to buy her a Starbucks." I almost said, "How about buying ME a Starbucks?" But I didn't see the point. She said she thought I was dehydrated, making my veins flat instead of plump. This earned me a liter of fluids and another hour at the clinic.

Anyway, today I did finally get up and do the mile around the lake. I was walking so slowly that during the time the dog was on the leash, I felt bad for her. I let her off when we met up with a friendly golden retriever who shared his tennis ball and ran in and out of the water with Maddie. So she got her exercise and I got mine, although mine was a bit of a struggle.