Thursday, January 31, 2013

Celebrating a fourth birthday

Dinner at the Frontera Grill in Chicopee
There was a time when I didn't think I'd live for four days, let alone four years, and when, during the first year after transplant, I was pleasantly surprised that a kidney specialist said he'd see me in three months, because that meant he thought I would live that long.

And here I was tonight, having a re-birthday dinner with Joe at a Mexican restaurant, enjoying good conversation and enchiladas, sangria and homemade guacamole, having put in a good day's work writing and looking forward to tennis tomorrow.

Although Dr. DeAngelo had said you could break out the Champagne at two years, I didn't want to tempt fate by acting overly confident, so I had coffee with friends instead.

I've watched the calendar as the four-year anniversary of my transplant approached, but again, superstition came close to keeping me from observing it. I was telling a friend that I wasn't sure what God would think, and she said this wise thing:

"God wants us to celebrate."

What a nice idea, I said, adding with a laugh, "I don't think God cares if I go out to dinner or not."

So off I went, giving thanks to my donor, Denise, on this day as on every day.

Tuesday, January 29, 2013

Birthday celebration in New York

Birthday cupcake
I took a last-minute, whirlwind trip to New York Sunday to visit my aunt Marge as she celebrates her 94th birthday.

I found out Saturday that my cousin Bob and his wife Lynne were driving down from New Hampshire to visit for a couple of hours and then turn back. Bob said he'd pick me up at the hotel in Holyoke right off the exit. So I jumped into the car Sunday morning, met them, and off we went.

It was good to catch up on the drive that took three hours with traffic. Katie asked me on the phone if we were going to do anything else while we were there. No, just visit at their apartment near the United Nations and look out the window at the beautiful view of the East River.

Lynne had picked up decorated cupcakes, one for each day of the week, and we shared one although it was sad to cut through the beautiful icing.

We have a small family, and I like taking advantage of every chance to stay connected. Marge is my mother's sister and the only relative left from that generation. My mother has been gone six years, and I miss her intensely all the time. She and Marge were two peas in a pod. They called each other Bren after the comedy duo Brenda and Cobina. Each would play a role, one saying "Brenda," and the other replying, "What is it, Cobina?" but they forgot who was Brenda and who was Cobina, so they just called each other Bren.

We looked through old photos such as one of the two of them wearing pearls and sitting at a table with two dashing men at the Officer's Club. There were family dogs, such as the legendary Skippy, who – honest, honest, they said – ran away from their new home in New York City all the way back to their home in Mt. Vernon, N.Y., where he was found sitting on the steps.

Lynne and I ran out for a brisk walk to a nearby Starbucks and then turned back. It was the only outside thing we did, but inside it was warm and cozy and just fine.

Saturday, January 26, 2013

Good day sunshine

I love the moment when you first wake up, between dream and day, floating on a cloud. The room is cold and you're warm beneath the quilts, the sun seeping in from under the shades.

Even better, the dog has slept in and sticks her cold nose in your face AFTER 8 a.m. We get up and go downstairs. I love the way they look so funny scrambling down. The dog food has spilled, and I throw it out on the floor. She runs around and gobbles it up, eating in eight seconds instead of four. Very entertaining.

As opposed to yesterday, my feet have not woken me up. I guess that's the sunny way to look at the fact that my neuropathy – technically called chemotherapy induced peripheral neuropathy  – returned after I stopped taking Neurontin. I wanted to see if it had gone away, but alas, within about a week it was back. Yesterday I woke up to sharp pins piercing my feet.

I popped two pills and felt better pretty quickly.

I looked it up and found that the nerve pain is sometimes so severe that patients need to take a break during chemotherapy. The pain can last for days or months or even indefinitely. There isn't a proven treatment. Neurontin, which is used for nerve disorders, takes the edge off. One doctor at Dana-Farber said he thought cocoa butter helped. (It didn't.)

All drugs have side effects, of course, so I really wanted to stop the pills. I read that acupuncture and massage can help, so I might look into that.

Even with the drug, my feet are sometimes not all there.

Using the "N" card, (for neuropathy instead of the "C" card for cancer), could come in handy.

Can't do a yoga pose? I can't feel my feet! (Which is actually often the case, although I don't say it.)

Can't run for the tennis ball? My feet are numb!

I am trying to make a joke out of it, but it's not always that funny. Well at least for now, there is a solution, and I can proceed with my sunny day.

Thursday, January 24, 2013

Countdown to a birthday

God willing and the creeks don't rise, in seven days I will be 4 years old.

In other words, it will be four years from my transplant on Jan. 31, 2009 – my re-birthday.

Maybe my toddler friends and I should get together and celebrate. PJ would have to come from New York and Ann from New Orleans. We could have a food fight or, more appropriately, give thanks to our donors, those generous souls who gave us another chance.

Meanwhile, I spoke too soon when I wrote in my last post that I was all better. I have gotten sick twice then and am now guaging good days and bad days according to whether I throw up or not. I am still waiting for results on the biopsy done during my endoscopy.

One way I can tell I'm not quite right is that I haven't had coffee in two days!

I take Ativan for nausea...and then end up on the couch and in my head. Yesterday I thought I would at least take Maddie for a walk. It is so cold out that we didn't go far, plus she was bad and wouldn't come when called. I turn the heat way down at night, and at least she redeemed herself this morning by sitting close to me on the couch and sharing some of her natural heat while the house warmed up.

I did go to George's tennis clinic last night. We rotated three against one, and I thought I was pretty smart to skip the rotation where I was alone. George kept telling me to move my feet. Always excellent advice and something I am extra aware of after watching the Australian Open. On the other hand I was afraid of jostling my insides. I ran to the bathroom, got sick, and then, truth be told, finished out the clinic.

I might go to restorative yoga tonight. I figure I can't possibly get sick there, when all you do is basically lie around. I was skeptical the one time I did it, but it actually was very restorative.

On another note, I stopped taking Neurontin, which I have been on for a long time to control the neuropathy in my feet. I wanted to see if the tingling and prickly feeling had gone away on its own, but I'm sorry to say it is back. The Neurontin never made it totally go away, but it did dull the symptoms. Now I am waking up to needles in my feet. Melissa said it's optional whether I go back on or not. It's always good to get rid of one more pill and and one more set of side effects, but feeling like you're walking on pins and needles is no fun either. I think I'm going to stick it out a little longer, and if it gets to be too much I'll go back on.

Well, at least the pill is a nice yellow color and adds variety to the colors in my pill box.

Monday, January 21, 2013


This is a short post just to say I'm feeling better although still not quite myself.

I stopped the Exjade and increased my prednisone – 20 mg. for two days, 10 mg. for three days and then the day after tomorrow, back to 5 mg.

It's amazing what a little tinkering can do.

I think I'll try to bring the oil can and go to yoga tonight.

I haven't throw up since Wednesday. Something to be thankful for!

I lost some weight again because I wasn't eating much, but I'm eating more again: a cheeseburger with potato skins, an egg with a bagel and blueberry pancakes. Yum.

Just watched the inauguration. Very inspiring and fun to see the who's who of politics.

Friday, January 18, 2013

Adventures in Boston

I am not talking about the kinds of adventures I had in Europe, but rather about going to Dana-Farber yesterday and to Brigham and Women's hospital today.

There is nothing seriously wrong with me. It's just that I have been haunted by the throwing up sickness for about a week. I called Melissa and she said it did not sound like flu because I have no other symptoms. But I could feel that I was getting dehydrated, and she said to go see her, have some blood work done and get some fluids.

Ativan helps, but I couldn't take it while driving. Joe had an important meeting or he would have taken me. Plus, he knows what it's like for me to throw up in his car...into a plastic bag with a hole in the bottom, no less. I wouldn't have asked anyone else, so I set out yesterday with my plastic bag and some saltines.

I made it in OK and was relieved to see that my labs are fine.

After getting that out of the way, I told Melissa that my reason for coming was really to show her my new Spanish boots. She said that she had noticed them right away, so I was very gratified...although still nauseous.

First in the line of suspects is the Exjade. I didn't take it during my trip and felt just fine. As soon as I took it at home, up it came. I took a break for a couple of days, downed the five pills dissolved in water again, and got sick again. She said to just stop taking it. Free at last!

Since my hematocrit continues to be normal, on my next visit I will schedule a "therapeutic phlebotomy" appointment as another way to get rid of the excess ferritin that accumulated in my liver after multiple blood transfusions.

Dr. Alyea came over while I was in the infusion room and asked if I had watched any of the Australian Open. When he talks tennis I know that I am not making medical history. He was accompanied by another doctor and introduced me as an excellent tennis player. I told him that wouldn't have described me during the past week, and he said we'd get my insides straightened out so I can get back on my game.

He said I should take a booster of increased prednisone for about five days because when you're on a low dose like mine – 5 mgs. a day – your body can forget to produce enough on its own (or something like that) and a booster would help me feel better.

Meanwhile, on to the award for the most annoying nurse of the day:

When she was reviewing my medications before the endoscopy today, she asked why I take the drug Kayexalate. I said I take it because my potassium was high, but with a once-a-week dose it is fine.

"Are you in kidney failure?" she asked. "That's what high potassium means," she said, or something like that.

I told her that I was in kidney failure three-and-a-half years ago but that I am fine now.

She eyed me suspiciously, as though I had no clue whether I was in kidney failure or not.

After the procedure when she was removing my IV, she started in on me again.

"Have you ever seen a nephrologist?" she asked. Since I happen to have seen a nephrologist (a doctor who specializes in kidney care) I knew what that meant, although when I first heard I was seeing one of those, I thought they said I was seeing a necrologist in preparation for my death.

I repeated that my kidneys are FINE.

With that she finished up with my discharge instructions. And wearing the Massachusetts Academy of Ballet sweatpants that I had put on earlier in the morning, I pirouetted out of the hospital.

Wednesday, January 16, 2013

Just another day at the vet

Whenever I entertain thoughts about getting another dog, I need only think of the vet bills and I come to my senses.

I'm not talking a get-hit-by-a-car kind of bill. I'm talking about an annual check-up with two shots and a heart worm test with an ear infection thrown in.

 Maddie has had frequent ear infections, and I could tell she was getting one again by the way she was shaking her head. And then (sorry, this is gross), she needs to have her anal glands expressed once a month. You can tell that is on the agenda by the way she scoots across the floor. Very embarrassing in company. The vet said some dogs are just like that, but I never met one before.

No matter how much they poke or prod her, Maddie loves going to the vet. It's pure entertainment and a chance to get some treats and have her belly rubbed. Today a half an hour passed quickly in the waiting room while she tried to figure out two tiny dogs. One was a Yorky so well wrapped up in blankets that its little head barely popped out.

So, on to the exam. She had her ears cleaned and a smear taken to determine what was wrong. It was a combination of bacteria and yeast, and she will need drops two times a day. Ever give a dog ear drops? It makes them go crazy, and they run around and around rubbing their ear on the ground. (When Misty, our dog before Maddie, saw you coming with an ear dropper she'd run away even if you tried to hide the medicine behind your back.) Maddie just lies down...and then she goes crazy afterwards.

She also needed a refill on her heartworm and flea and tick preventative. And then, ahem, there was the business of the anal glands. The vet said she could teach me how to do it, saving $23 a pop, but she warned me that it's pretty yukky. Next time she's going to show me how it's done, but I have a feeling it's not for me. Maybe Joe?

You should have seen the look on my face when I got the bill: a whopping $405.14.

But she's a good dog, and she keeps my feet warm when we lie on the couch together.

Sunday, January 13, 2013

Where did all the French people go?

I have been lying on the couch watching The Golden Globes, while it seems like I was walking around Paris just a minute ago.

Actually I'm a little under the weather, so on the couch for most of the day is as good a place to be as any. I have also been reading "The Paris Wife," about Hemingway and his first wife, Hadley. When Katie and I were in Paris we stood in front of the apartment building where they lived, and it's so interesting to actually have been right there at a place that I'm reading about.

Katie went back to Brandeis today. I was going to go with her and do the traditional making of the bed, but Joe went instead. I was sorry to miss the trip, but when I have a doctor's appointment in early February I can go check out her new dorm and re-make the bed. (Only kidding about the bed.)

Our two weeks together in Spain and France were the best. What a wonderful opportunity to take a trip like that. I miss her already! But as she pointed out, she's in the same time zone now, and it will  be easy to pick up the phone and call instead of planning to Skype.

Here is a photo that was stuck in my camera when the battery died.

Me and Katie in front of The Louvre

Thursday, January 10, 2013

Fear of fatigue

Ran around for 10 days in Europe and then came back and ran and went to our tennis clinic last night, where I ran around some more.

I have also been doing some intense writing, which can be an energy drain too.

Today I have been dragging. As I sit here with my coat on, one shoe on and one shoe off, the dog is waiting patiently to go out. My plan is to walk her and then run the loop again.

This morning I made decaf by accident and then, thinking my fatigue was due to being caffeine-less, made real coffee. I miss Europe where you can go anywhere and get a cup of coffee made with fresh beans.'s hard to just accept being tired and lie down with a book.

After almost four years, the question still haunts me: Do I have leukemia?

I know that I don't and that you can be tired for other reasons, but still, I wonder if that fear beneath the surface ever goes away.

Anyway, I'm writing this later. Since I went straight to the couch after walking Maddie, I figured that's where I was meant to be. While I was lying there, Katie gave me The Talk, saying basically that staying healthy does not mean exercising every day. I know, it's true: You have to listen to your body.

Monday, January 7, 2013

I remember running

More precisely, I remember how to run.

I haven't run since August and have been working up to the day when I can do it. On Saturday I said, "Maybe tomorrow." Yesterday I didn't think so. After walking Maddie around the lake and doing some other things, I was tired in the afternoon and figured I'd call it a day. I lay down on the couch, covered myself with a cozy blanket and got a bowl full of chips. I figured I'd make a few phone calls and then take a nap.

I called Ben, but he couldn't talk much because he was on the way out the door to go running.

And that was all the motivation I needed. I came out from under the blanket, changed into running clothes, put on my running shoes, and, after a few stretches, was out the door as the sun dropped lower in the sky.

And then I remembered how to run.

I just went once around the paved lake (the path around the bigger, unpaved lake is covered with snow) and then ran back, for a total of a little over a mile. This is nothing compared to what I was doing this time last year while preparing for the St. Patrick's Road Race, but it was a start, and every time I take a break, I have to start from the beginning.

I went up the little hills so slowly that I might have been walking, except that I was using a running gait. I can't say that I got enough exercise to feel good, but I didn't feel bad either.

I told Joe that who knows, maybe I can train for St. Pat's. He said he didn't think that was a good idea. Actually, I think he said something more emphatic. I didn't really think I could, anyway.

Today, alas, I am sore.

Saturday, January 5, 2013

Back in the USA

The trip home was uneventful although long – eight hours in the air and then an arrival, around 2:45 p.m.,  two hours after we left.

Diane picked us up at the Boston airport, and we had considered spending the night, but Katie was full of energy and wanted to get back to see a friend who would only be home for a short while. So she drove back while I dozed. We got home around 7 p.m., or 1 a.m. in the time zone we had left.

It really wasn't so late, but I was exhausted and not feeling well. Keeping my warm coat on, I lay down on the couch and covered myself with a blanket. Maddie climbed up on the couch and kept my feet warm. Joe said I should try to stay up at least until 9, but I kept falling asleep.

I'm always very careful with my pills, but in rushing out of the Paris hotel room, I forgot them there. I had brought enough to get me through the trip and then some extra; at least my pill bottles were at home. I missed a morning dose of pills, including my prednisone. I didn't think that skipping one day of a low dose (5 mg.) would matter, but I think my weird feeling can be partially attributed to skipping the dose.

Back at home, Katie brought me a pill and a glass of water. I went up to bed around 9 and fell fast asleep, waking up at 4 a.m. and thinking that was it, but falling back asleep until around 7. Friday I wasn't with it, but today I feel better.

True confessions: I let my guard down another way on the last day of the trip. It was New Year's Day, and I wanted to get to Notre Dame before the cathedral closed. We had done other things earlier, including going back to the Eiffel Tower and walking along the Seine, admiring the bridges and the scenery. They didn't just build bridges; they created works of art.

It was getting late when we took the Metro to the cathedral. Hearing our train pull in, I ran up the stairs, lost my balance and tripped, flying onto the train and landing on my stomach with my legs partially out the door. I am not making this up, I'm sorry to say. A Frenchman sitting on the seat by the door pulled one leg in, and Katie pulled in the other. She said the man's eyes were practically popping out of his face. So were hers. First she said "Are you alright?" and then, "We could have waited for the next train!"

I lay there for a minute and then got up. I actually was OK, although VERY embarrassed. It was a reflexive reaction – see open door, run for train – rather than a thoughtful one – see open door, realize it's about to close, and wait for next train.

We got into the cathedral, where Katie said at the entrance, "Be careful – people get lost in cathedrals because they're always looking up." So of course we did get separated. When you both have cell phones it's easy to find "lost" people, but I had never gotten a European one. I looked and looked for her, to no avail. Finally I went out, and there she was outside the exit. We hugged like long lost friends.

That night my back began to hurt, and I took an Oxycodone. Maybe I was still under its effects when I forgot my pills.

In any case, it was a great trip, and I got home all in one piece.

If you want to yell at me after reading this, please don't, because I've already yelled at myself.

Tuesday, January 1, 2013

Hello from Paris

Toasting to being together in Paris.

Reading in a cafe´near the Sorbonne

We arrived in Paris Friday afternoon after a tiring trip from Barcelona. It isn't that far, but taking the discount airline, Ryanair, might have been a mistake. The plane landed in Beauvais Airport, about an hour and a half outside the city, much farther than the two major airports, Orly and Charles de Gaulle.

I had joked that we would probably arrive in a country field, and that's just about what we did. Then we had to pay to take an hour and a half bus ride to a terminal and then pay for a cab ride to the hotel. Live and learn.

We got here in the late afternoon and quickly grabbed the guidebook, setting out for the Latin Quarter. Katie read the stops on a literary walking loop, and we went from point to point on the map. Best stop: the courtyard flat where James Joyce lived after he arrived in Paris in 1921 and where he finished writing "Ulysses."

As we peered into the lane through a gate, a woman pushing a stroller came up the street on her way home. She opened the gate for us and showed us how to get out by pushing a buzzer. We were able to walk down the narrow street in the twilight and stop in front of the flat. Very exciting.

Further down the street, we stopped in front of the apartment where Ernest Hemingway lived with his first wife, Hadley, in 1922 and 1923. We learned that just below was Bal au Printemps, a dancing club that served as a model for the one where James Blake meets Brett Ashley in "The Sun Also Rises."

We stood on the street and imagined Joyce and Hemingway standing there talking.

We stopped at a cafe´ and were happy to realize that it was not a tourist trap; people at tables spoke French while a group of men at the bar engaged in an animated discussion, also in French.

Later, getting hungry and cold, we stopped at a cozy, lively restaurant recommended by the guidebook, Le Petit Pontoise. We toasted our arrival with a glass of wine each and both ordered the same thing, chicken with mashed potatoes. After more than a week of eating ham and cheese in Spain, I craved vegetables, so I ordered some as a side dish, not asking the cost, which turned out to be a whopping 10 euros, or about $13.

The bill was an eye-popping amount, and we vowed to do economic penance, which is difficult in Paris. Yesterday we stopped for lunch in the St. Germain des Pres neighborhood at Cafe´ de Flore, where Jean-Paul Satre and Simone de Beauvoir hung out. It was exciting to be there, but the food was so expensive that we decided to share an omelette, which amounted to about four bites each. Outside, we supplemented with chocolate-filled crepes.

Since then, we have squeezed in a lot at such a fast pace that I decided that even though it was an extra metro ride, we needed to come back and take a rest.

We saw the Eiffel Tower light up at night, climbed up to Montmarte for a beautiful view of the city, went to Versailles and made the obligatory visit to the Louvre, where we crammed in like sardines to look at the Mona Lisa. Was it worth it? Despite the fact that the guidebook called the Louvre one of the most actively avoided museums in the world, we were glad that we went.

We also walked through the Tuileries, sitting down next to a fountain and having lunch in the sun, and through the Luxemborg Gardens; both would have been especially beautiful in full bloom but were so beautifully laid out that it was nice to be there.

On New Year's Eve we walked down the lit-up, and very commerical, Champs-Elysees down to the Arc de Triomphe, then had a picnic in our room and watched "The Muppets" movie, which was really delightful. Then, for the New Year, we watched a French TV celebration complete with Can-Can dancers and acrobatic acts.

Today, it's on to Notre Dame cathedral and a walk along the Seine.

It's been more than wonderful. And despite predictions that the weather might be miserable, it's been sunny although cold every day. I lost a glove and invested in an over-priced pair of red mittens that will always remind me of Paris.

Unfortunately, my camera battery died and I forgot to bring the charger while Katie left hers in Sevilla, so we've been using a disposable camera amidst everyone else with their fancy cameras. It will be interesting to find out what the pictures look like. Who knows, they might be terrific.