Friday, February 28, 2014


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.

Monday, February 24, 2014

Bloody day in Boston

Nothing can set your heart to racing quite like someone reading a blood test result and saying, "Oh no, that's not good."

This happened to me today when I got my finger pricked to measure my hemoglobin before getting a therapeutic phlebotomy. It needed to be 12 (which is normal). The reading said 10.4. I told the phlebotomist that it was strange, because last month it was normal range.

"A lot can happen in a month," she said.

I said this was making me nervous. She told me not to worry, she would get a nurse to try the test again, on the other hand. "We transplant patients are a nervous lot," I said, by way of explanation.

Five-year "cure" notwithstanding, it doesn't take much to shake your confidence.

When she left the room, I noticed drops of blood falling from my bandaged finger. Drip drip drip, onto the floor, onto her desk and onto my newspaper. Great, I thought, my platelets must be low too.

I went out to find the nurse, who came in, applied pressure to the bleeding finger and tried the other hand. She asked if I was wearing lotion, and when I said yes, she scrubbed extra hard because she said sometimes the residue throws off the test. This time it read 11.6, which was close enough.

So I got comfortable in the chair and turned my head when the phlebotomist put the large needle into a vein. I could feel pain from her pushing it around and knew from experience that this was not good. The needle had gone under the vein, not into it.

She asked if I had had enough, but I had come this far and I wasn't going to quit. I was happy that she asked another phlebotomist to try it because he got the needle in on his first try in the other arm. The rest of the procedure went smoothly, lasting only six minutes to fill a unit of blood.

I went from there to my appointment with Melissa, who was running two hours late due to rebooking of appointments that were canceled during the last two snowstorms. I rested my head against the wall and fell asleep.

The aide who finally took me in said I didn't look so good and offered to carry my bag. Poor Melissa was all flushed and looked even worse than I did. She said they had triple-booked her and she just couldn't keep up. I told her she could feel free to push me on through, but she just isn't like that and took her time with me like she usually does.

My counts were all fine. And I was glad to hear that my liver numbers had improved while on the lower dose of prednisone. Melissa said that maybe next  time I could go down to 2 mgs. a day.

It ended up being a four-bandage day: One on each middle finger and one in the crook of each elbow.

By then it was almost 5 p.m. It might have made sense to spend the night. But I wanted to get home to go to my tutoring job tomorrow. Even though it's a volunteer job, I don't like to skip unless it is for something like when I was taking oxycodone for my toothache.

So I caffeinated and powered on through. On Thursday, I get to do the whole thing again, though thankfully just for the dermatologist and the dentist, who won't be taking any blood.

Sunday, February 23, 2014

To New York and back

Amanda, Katie and me after seeing "Pippin"
I threw my running things in my suitcase for my trip with Katie to New York on Wednesday, thinking that being near the Central Park Reservoir might inspire me to start running again.

But the streets were still a mess from the latest storm, and it turns out I did enough running around to get all the exercise I needed and then some.

On Wednesday night we saw the amazing revival of "Pippin" on Broadway. Thursday we went to Brooklyn to have lunch with my niece, Lily. It was so nice out that we got ice cream and strolled back to Manhattan over the
Brooklyn Bridge, with views of the Manhattan skyline and, to the left, the Statue of Liberty. During all those years growing up in New York I never took that walk. We provincial Manhattanites took notice of  Brooklyn only from a distance. Now, of course, Brooklyn is a happening place.

Thursday night we had Chinese food with Marge (95) and Bill at their apartment near the United Nations, with spectacular views of the East River. Friday we went down to Times Square to our cousin Serena's office at and did a little shopping in Macys. This all involved a lot of going up and down subway stairs, which wasn't too bad except for the last couple of steps on each trip, which required every ounce strength that I had left. With help from Katie's outstretched hand, I successfully navigated an obstacle course of puddles and ice patches.

Finally, on Saturday morning I had breakfast with our friend Harriet from Atlantic Beach.

Ben and Webster
These visits always bring up the question of where is home. Obviously my home is here in South Hadley, but when I am in New York I feel like I am returning home. It is not the same without my parents, but I love seeing my friends and relatives and feeling like I fit right back in (although I could do without being crammed into the subway). I guess that home can be more than one place.

On Saturday, I stopped in Fairfield to see Ben and Meghan's puppy, Webster, who is part German shepherd and part Labrador retriever. I brought him Maddie's favorite snack, Snausages, and a little pull toy. What an adorable baby!

I was tired enough this morning that before writing this, I put my head down on the kitchen table and fell asleep.

Tonight, tennis, and tomorrow, the rescheduled trip for a checkup at Dana-Farber.

Tuesday, February 18, 2014

Travel time

It takes a ridiculous amount of time to juggle doctors' appointments, as anyone who sees a lot of specialists knows. Sometimes I think I should just move to Boston to eliminate all the time I spend on the Mass Pike…and on the phone trying to make it all work.

In rescheduling yet another appointment canceled due to snow, I couldn't get it back-to-back with two other appointments already scheduled. So I am going to see Melissa for my checkup on Monday Feb. 24, then go home and go back again to see the dermatologist, Dr. Lin, and the dentist, Dr. Treister, on that Thursday.

The good thing is that I can get my labs drawn when I do the therapeutic phlebotomy before my checkup. I will already have an IV in, so I won't have to be stuck twice to get my labs. We must be thankful for small gifts.

On a more fun note, Katie and I are going to New York tomorrow to see "Pippin" on Broadway and to visit friends and relatives. I will leave my car in Fairfield and take the train to New York, so on the way back I can see Webster, my grand puppy. Can't wait!

I have something to write today. It isn't so bad out, so Katie and I are going to walk Maddie. I already spent some time trying to chop ice on the front walkway so the mail can be delivered. I remembered buying "pet friendly" ice melt and actually found it in the garage and sprinkled some on the ice.

It is about 1 p.m., and if I start packing now, I should be done by midnight. My daughter, who is just the opposite, says I have BPD, or Bad Packing Disorder, and I'm afraid that she is right.

Monday, February 17, 2014

A different kind of exercise

I went jogging today.

Well, not real jogging. Water jogging, actually.

One reason I joined the Y was to use the pool, but I haven't gotten over there to swim yet. With Katie here, I had the motivation to go. First we had lunch in Northampton at Green Bean and then did some errands. Every time I go in that place I get blueberry pancakes, and today was no exception even though it was lunch. Katie ate something healthy, but the waiter told me not to worry, there were antioxidants in the blueberries.

We had packed our stuff and went straight to the Y. I haven't been swimming in ages, and it went OK. I was only able to do a couple of laps freestyle, but I mixed in breast stroke and using a floatie around my waist to jog in the water. I even was able to get out of the pool, which was probably the hardest thing I did.

Tomorrow is supposed to be the makeup Dana-Farber appointment for the one I missed due to last Thursday's snowstorm. With a 90 percent chance of snow, I doubt I'll get there tomorrow either.

Sunday, February 16, 2014

Memories of my father

It's hard to believe.

I can just hear my father saying those words, appropriate to many occasions.

It's hard to believe that my father has been gone since Feb. 16, 2002.

As I lit a candle for him this morning, the tears just flowed down my face.

Katie is home for vacation, and Joe is home, but nobody is awake, so it's just me and my memories.

 I did talk to David, another early riser, who said he and Diane had just been talking about my father as they do all the time.

They had been talking about how all of our parents missed so many good things, but they missed a lot of the bad, too.

My father missed all of my illness, which is a blessing, because it would have been horrible for him to see his little girl suffer so much.

Of course it was hard for my mother, too, but she missed the relapses and lived to see me well.

The top photo is at one of his favorite places, the grill at Atlantic Beach.

It was at the tennis court down the street that he loved to tell me, "Serve 'em up!"

The photo at bottom was taken in 1936.

Friday, February 14, 2014

On pins and needles

I tried a little experiment a couple of days ago to see if I could go down from four Neurontin a day to two.

 I've done this before, with permission, because I never tinker with anything on my own. I wanted to see if the neuropathy in my feet might be getting better on its own. Also then I would only need to take 14 pills in the morning instead of 15. Big difference, right? I guess that psychologically there is a benefit to taking less medicine, however small the decrease.

Well, it didn't work last time, and it didn't work this time either. Last night I was upstairs, just about to get into bed, when I got an attack of pins and needles in my feet. I thought I might just ignore it, but I know that the last time I did that, the pins and needles quickly turned into sharp knives.

Maddie was all "tucked in" in her bed in my room when I headed for the door to go downstairs where the pills are. She jumped up, thinking (I guess) that there was going to be some late-night action. I told her to stay, went downstairs, found the pill and popped it. The pins and needles diminished pretty quickly. So much for that experiment.

Thursday, February 13, 2014

Another snow day

I was supposed to go to Boston today for a checkup and a leisurely session of therapeutic phlebotomy, but the snow put the kibosh on that.

It doesn't matter that much if I reschedule. My last appointment was only a month ago; we scheduled this one close to check on how my liver enzymes are doing with the prednisone dose decreased half a milligram down from 3 mgs. a day. It was such a small decrease that I'm sure the test can wait. Also I feel good and am not worried about anything. (!!!!)

Some friends who know me well warned me yesterday not to go slipping and sliding in the snow. Why they think I might be reckless I have no idea.

The Olympics have drawn me in. I enjoyed today's tour of the Kremlin, with its display cases of fabulous diamonds and Fabergé eggs and its grand architecture. Last night I was dazzled by the pairs figure skating. It's hard to see them fall, but it reminds you that while their skating looks effortless, it takes an amazing amount of work. Seen from the vantage point of someone who can barely balance on one foot, it is doubly amazing.

Today: Crock pot pot roast, writing, reading, laundry, looking out the wind. Maybe practicing balancing on one foot. Maybe standing up and sitting down in a chair. Maybe my exercise routine in my room. Maybe just lying on the couch.

Tuesday, February 11, 2014

It's dangerous out there

I started the day by dropping my phone in a parking lot and then stepping on it when my foot slipped on the ice.

Later, the paper bag containing the fruit that I had bought at Atkins slit open, sending raspberries flying while the plastic quart of milk rolled under the car. I got on my hands and knees to collect the raspberries and coax the milk out from under. This may have been comeuppance for once again forgetting to put the reusable bags back in the car after taking the groceries out.

I doubt that better weather will make me less of a butterfingers, but at least I won't have to deal with bad conditions on the ground when me and my things fly here and there.

The first parking lot was at the Literacy Project, where I once again enjoyed my morning as a tutor. I had the less advanced group today. We practiced "echo reading" of a short story, where I read a line and they repeated it. I fashioned my own lesson, writing words on the board that contain the "sh" sound as opposed to the "ch" sound and other things that went over well as long as they could read my bad handwriting. We sang a couple of impromptu lines of songs, such as a couple using the word shine. (I'm sorry to say a little Raffi music came out of me, as in Mr. Sun, Sun, Mr. Golden Sun, please shine down on me.) When we did chin, somebody did the little pig saying, "Not by the hair of my chinny chin chin." Hey, it might as well be fun.

It was getting colder as it got later in the afternoon and harder to get motivated about walking Maddie. I got so bundled up that I could just hear Randy crying, "I can't put my arms down!"

In other developments, it had gotten warm enough mid-day yesterday for me to hack away pieces of ice with a shovel so that I could toss them away from the front path. Joe has been working hard and is gone all day so that when he gets home it's too cold to attack the ice. I figured I better do it myself. Did I mention that I slipped and fell the other day when bringing a bag of groceries into the house? It was quite a graceful fall, more like a crumpling down onto my knees, and I picked myself up with no problem.

Sometimes I think I would do better if I just walked around on a moving tennis court. I've been told I am playing very well, and indeed, I do feel sure-footed. More than one person has said that given my erratic walking style they don't understand how I can play tennis. I guess it's in my genes. After all, well into his 80s, my father held a cane for balance with one hand while using his racquet to slice and dice. My hero.

Saturday, February 8, 2014

Adventures on a snowy path

Never let a Labrador retriever off the leash under a window at college dining.

That's what I learned today. After yoga, I would have been happy to call it quits, but I thought I would be a good dog person and walk Maddie. The beginning of the path around of the upper lake was plowed, so I was encouraged to go around that lake instead of the paved lower one. Soon enough, the plowed part stopped, though, giving way to a narrow tamped down path. It was good exercise for me, and Maddie loved romping in the show.

She was good until we came up to the end of the path and she went up a little hill to have a snack under the window. It was a long snack. She wouldn't come down, so, yelling at her all the while, I started to climb up the hill…and fell into the snow.

It was a good thing I was wearing my long down coat. I just kind of sat there, with the dog not paying any attention to me. It took me a few minutes to figure out how to straighten myself out. I ain't as nimble as I used to be. When she finally decided to come, I put her on the leash and slid down the hill.
For the rest of the walk, snow melted in my boots.

Well at least we'll both sleep well tonight.

Wednesday, February 5, 2014

Snow day

For my very own New Year, I finally got around to giving up the cavernous Planet Fitness, where I hardly ever went, and switching to the Holyoke Y, where I hope to go more often to take advantage of the classes that are part of the membership fee. I'll probably swim also, but I have to wait for my lips to clear up because I think at this point the water would sting them.

I am having some luck with the steroid ointment that my dermatologist gave me, so there is some progress.

I was going to go to yoga tonight at the Y, but my exercise is consisting of walking from window to window watching the snow fall. I might do a little yoga or stretching on my own, but then again I might just make coffee, read and catch up on things.

Everyone is very friendly and helpful at the Y. The problem is the shortage of machines; there is ONE upright stationary bike, so I will have to go at off times to use it. Some of my Mount Holyoke friends take kick-boxing, and some of my book club friends do spinning, but at this point I would probably kill myself doing either of those.

Yesterday I had an interesting experience on the teaching front, meanwhile. The classroom teacher at the Literacy Project was outt, so I had to conduct the lesson instead of doing my usual small-group or one-on-one tutoring. It was kind of stressful but I made it through, gathering my wits afterwards with a scone and coffee at the Haymarket.

Sunday, February 2, 2014

Party Time

Katie, me, Meghan, Ben and Joe at Mulino's
My children took me out to a special birthday dinner last night, complete with a candle in my molten chocolate cake brought over by a waitress singing "Happy birthday."

Little did she know that it was really my fifth birthday, or my re-birthday, which actually fell on Jan. 31 – five years after my last bone marrow transplant.

Five years is the point at which transplant recipients are no more likely to get leukemia than the general population, and at which we can even dare to use the word "cure."

It doesn't seem so long ago that I wasn't sure I would live five days, let alone five years. I have so many things to be grateful for, and all of it thanks to my donor, Denise, who saved my life when I thought I was at the end of the line.

Definitely a day to celebrate!