You gotta do what you gotta do

I woke up to the smell of late summer/early fall. It is hard to describe a smell. If this one had a color, it would be lemon yellow, not the brighter, crisper color and smell of real autumn. I am still close enough to my latest hospital stay that when I breathe in a sweet smell like this, I take a moment to be thankful that I’m out of lockup.

I also heard a strange sound. It was the sound of the washer and dryer running in tandem. All summer I had been after Joe to keep up with his wash. Now he was making up for lost time. He leaves for college tomorrow, and, true to his word, he was getting it done. It seemed like just yesterday that he had come home from Bates for the summer and the house was an obstacle course of laundry, suitcases, hockey stuff, books, sheets and towels, blankets, sleeping bag plus stuff he had accumulated during his first year away from home.

It seems like he just finished putting it all away and now it is time to take it all back out.
(And of course if I follow that thought all the way through, it seems like yesterday that I brought my premature second child home from the hospital.)

This is the time of year when everyone wonders where the summer went, when the first leaves helicoptering down from the trees fill us with melancholy and at the same time bring the anticipation of new beginnings.

My summer seemed especially fast, probably because I “missed” most of the spring by being in the hospital so much. Of course since I was alive, I didn’t actually miss it, but it wasn’t the same as being on the outside to welcome the longer days.

I’ve been watching Joe pack; I guess you could say I’ve been hovering, becoming more of a “helicopter parent” than I usually am. It seems like he was happy to be home but is happy to be going back to school.

I asked him if he had had enough summer, if he was ready to leave.

“You gotta do what you gotta do,” he said.

Same goes for me, from letting my children spread their wings, to fighting a nasty disease, and to getting back on the tennis court and getting back to running.

Same goes for all of us. We gotta do what we gotta do.

On the court, a shadow of my former self

Like my old self. I run out of the house, late as usual, holding a bunch of stuff …tennis clothes, tennis bag, bottle of water, lunch, book and full coffee cup because Ben ran off with all of my travel mugs. The lunch is a boring peanut butter and jelly sandwich. My friend Tami from high school is coming from Connecticut to meet me in Longmeadow for lunch. She will buy a sandwich from a deli; I am still under post-transplant dietary restrictions and am not allowed deli food, which is why I bring my lunch. I have the book in case she’s late. The tennis stuff is because after that, I will head over to Agawam to play doubles with friends from my team, Korby, Deb and Debbie.

On leaving the house, I drop the book, which causes the coffee to spill and splash on the door. I make it to the car and turn around because I forgot my keys. The sun is shining, the sky is blue. I turn the radio up high. It could be any normal day…except that it’s Thursday and I’m not working, which, frankly, doesn’t bother me at all.

Tennis is fun but it’s a little hard. I have adapted to this week's hematocrit of 25 (normal is 34.8 to 43.6), but I obviously don’t have a normal amount of energy. I huff and puff a little. I hold my own and I make a couple of really good shots, but, as my father used to say when recovering from heart surgery in his 80s, I was a shadow of my normal self. (He built his strength up enough so that he played tennis until a year before his death at 87.)

Korby , my partner that day, kept asking if I was OK and if I wanted to stop. Of course I didn’t want to stop. Good friend that she is, she said, “You should stop before you’re tired.” The others, too, kept checking in.

I served one game with so many deuces I lost count. Eventually we prevailed. That wore me out. I started hitting crazy shots, some even going onto the other court.

I wondered if they might be annoyed with me. Then I realized that of course they wouldn’t be. I had shared this concern with a non-tennis friend who said, “They’re just happy to be playing with you.”

I was tired at the end, but it was a good tired, and I was happy to be playing with them, too.

Does anyone want a dog?

In April 2007, four months before my relapse (who knew?) I got a puppy – an adorable chocolate lab. Our faithful golden retriever, Misty, had died at a good old age the winter before. I told the kids that I couldn’t think about getting another dog until spring.

Spring came, and I had gotten used to going dogless. Here’s what happened.

Kids: It’s spring. Where’s the dog?
Me: What dog?
Kids: You know, the dog you said you’d get. Plus, we want a puppy.

I’d lived through puppies and vowed never to do it again. So I called some shelters and went to visit one, in search of a nice two-year-old.

When a friend said she knew of a great breeder of labs in Vermont, something came over me. All of a sudden I was on the phone …getting a puppy.

Now almost a year and a half old, she is adorable, fun and cuddly. We named her Madison, but everyone calls her Maddie. Maddie has just one problem. She was house-broken, and then had a relapse.

My life has been enriched by dogs, but my experience with them has taken some odd turns. Before Misty, we had another puppy, a golden that we called Charlie. He had a split personality, adorable one minute, crazy the next. As a puppy, he’d snarl and nip. “That’s nasty,” our vet said when she saw him do it. He bit Ben and Joe, two of my three kids, but it was nothing serious. Still, he worried me, so we went to dog school and even had a trainer come to the house to school us in showing Charlie that we were the alpha dogs.

On the day he attacked me, he was almost full-grown. He had stolen a piece of banana bread from the counter, and I merely looked at him and said, more disappointed than angry, “Oh, Charlie.” He ran at me, snarling and growling, and sunk his teeth into my leg, then my stomach. I threw hot coffee on him and ran upstairs while he settled back on his bed.

The next day I talked to the vet, who said that if I wanted, she would put him down immediately. But our friends Jim and Jane Bloom insisted on taking him. Jim sent him to some doggie boot camp (I didn’t ask what they did) and he returned more subdued. Jim with his booming voice became the alpha dog, and Charlie lived with them to a good old age.

Misty entered shortly afterward, a well-behaved three-year-old. What happened with her wasn’t her fault. One rainy night shortly after I returned home from my first transplant, she got skunked. She ran through the house, yelping and stinking everything up. I was afraid that the fumes might somehow make me sick, what with my fragile immune system. I threw on a mask, went into my room, and called the nurses’ station on 6B at Brigham and Women’s, were I had received my transplant. Vytas, a nurse who was later to become a great friend -- and who over the years would answer many strange questions that I posed – answered the phone. No, he said, skunk stink could not make me sick.

Back to Maddie. She has started peeing and pooping on the kitchen floor, but only at night and in the early morning. We keep her in the kitchen and dining room at night, because given full run of the house, she raids the trash and chews up shoes. She’s been to puppy school and has actually calmed down in many ways. She’s good on the leash and knows her basic commands. She is gentle and sweet and gets along with everyone.

Advice from friends, the vet and the trainer goes every which way.
Some say: Put her back in the crate.
Others: Never put her back in the crate.

Some: Take her water away at night.
Others: Never take a dog’s water away.

Trainer: Don’t yell at her or stick her nose in it. Praise her when she’s good, but don’t raise your voice unless you catch her in the act.
Vet: Go ahead and scold her.

I have used Nature's Miracle, a stain and odor remover guaranteed or your money back. It is no miracle, and I don't really want my money back. I'd rather have a big box of scented candles or potpourri so that my kitchen would maybe stop smelling like a kennel.

I praise the dog so effusively when she does her business outside, you would think that she had laid a golden egg.

We solved the problem with #2 by feeding her just in the morning. But nothing has worked for #1. I should add that since I am not even 100 days post-transplant, it is not the greatest thing for me to be cleaning up dog mess. Sometimes the kids do it, but if they’re not around, it’s up to me.

The vet and trainer labeled the problem inappropriate urination. Somehow, that struck me as funny.

The vet suggested checking for a urinary tract infection. So there I was wearing a mask and gloves, walking the dog and sticking a Tupperware container under her to try to catch a bit of pee. (I was a failure. Our friend, Karen, tried and managed to get about a teaspoon.) No infection.

By the way we are not asking her to hold it in for very long.

The trainer said to take notes to see if there is a pattern. She doesn’t do it every morning, and when she does do it, it isn’t even after a long stretch. So, not much of a pattern.

The vet said maybe she has separation anxiety at night, and he suggested we let her sleep with the pack. So we got her a second dog bed and put it in my room. Twice I got up with her at 6:30 and praised her for waking me up. I took her out, and she did her business immediately. Then I left her on her downstairs bed and went up to sleep some more.

Yesterday when I came downstair, only a few hours later, she had peed near the window. So last night I figured that when I brought her down, I wouldn’t give her a drink. I put some chairs over the spot where she usually goes. She peed outside at 5:30 a.m. I tried to get her to take a nap in my room, but she wouldn't, so this morning at 6:30, I left her downstairs.

When I came down, she had peed UNDER the table.

Bad dog!

People say that these naughty labs usually get the idea when they turn 2. In the meantime, that’s a lot of cleaning up.

The Dog Whisperer would say it’s our fault, not the dog’s, but I can’t figure out what we might be doing wrong.

Sometimes, in other areas of training, we give her mixed signals. (But which “parent” doesn’t ever give a young one mixed signals?) She likes to get up on the couch, and we usually make her get down. Sometimes, though, she looks so cute, all curled up in a ball, that we just leave her be.

The other night I stayed up late to talk to the kids. The dog was curled up on the couch, and I leaned over and lay my head on her back, her warmth and her breathing soothing me. I closed my eyes and almost fell asleep.

I guess I won’t give her away after all.

Consumed by blood counts

This past week was so much better than last. On my weekly visit to the Dana-Farber clinic on Aug. 11, my counts had dropped. As anyone who has battled leukemia knows, you learn more than you’d ever thought you’d know about blood counts. You can get obsessed with them.

Going up is good; going down not. There can be good reasons for counts to drop, or there can be bad reasons. Especially after chemotherapy and after transplant, they go up and down. It’s normal. But when your low counts have signaled a problem in the past, it’s hard to avoid the panic that comes with the association of bad times.

The day they were down, Melissa Cochran, my nurse practitioner, said there were many possible benign causes. She told me to stop taking Valcyte, an antibiotic that can lower counts. Also I had shingles, which could lower my counts. Finally, it is common for counts to drop around Day 60 (meaning 60 days post-transplant), which is about where I was. She said they would do another blood test to check on the percent of donor cells to my cells. They call this the chimerism.

When I first found myself in transplant land, I was surprised at the use of this word scientifically. I associated it with mythology, as in: “a mythological, fire-breathing monster,” or “a horrible or unreal creature of the imagination; a vain or idle fancy.” I hoped that I was not turning into a creature.

The fourth definition seemed to fit the bill. The chimerism, I learned, is “the condition of being a genetic chimera.” Then I looked that up and, sure enough, discovered that in genetics it is “an organism composed of two or more genetically distinct tissues.”

I guess that would now be me.

In July, I had been 80 percent donor. If the donor percent was up, great. If it had gone down, they would change the dose of some of my immune suppressant medications. “I shouldn’t panic if it goes down, right?” I asked.
Right, Melissa said.

I used my techniques as best as I could during the week: Walking, yoga, talking to friends, sitting on the couch with Joe, hugging the dog, writing, and, of course, breathing. I made sure I took time to do breathing exercises I had learned in yoga.
My mind constantly drifted back to my fears that I was rejecting the donor as I had after my first allogenic transplant.

This past Monday morning, Aug. 18, I waited an hour and a half in the clinic. I came armed with my usual bag…a novel, the day’s New York Times, and leftovers from Sunday’s Times. I did OK until the last half-hour, when my heart began to pound.

Finally I got into a room, and Dr. Alyea came in shortly afterwards. “Good news on several fronts,” he said.

The chimerism came back at 90 percent donor, and my white count and platelets were up. My hematocrit was down to 25, but since I had seen that go down and then come back up (with help from transfusions and a shot) the last time, I wasn’t really concerned. He said I should get a shot of Aranesp to jump-start red blood cell production. I practically bounced to the infusion room to get the shot.

“Congratulations!” he said.

I felt like I exhaled for the first time in a long time. I had been holding in so much anxiety that even when I had focused on breathing, it hadn’t been a naturally relaxed breath. You don’t know how worried you were until the worry lifts.

Everything seemed brighter. I hate clichés but this one seems true: I felt like a had a new lease on life.

Getting back to bicycling

A little more than a year ago, I decided to be a better biker by upgrading to clipless pedals, which are really pedals with clips that attach to special biking shoes; the aim is to increase efficiency in riding. I had been riding with my friend Mike, and with my regular pedals (even though they had toe clips), I had trouble keeping up with him. The clipless pedals (which really should be called clip-ons) always scared me, but the die-hard bikers swear by them, so I gave them a try.

I practiced first riding around the driveway. I fell over a few times when I didn’t get my foot out fast enough, but I felt confident enough to give it a go. My friend Rook originally introduced me to the kind of biking that amounted to more than toodling around the neighborhood. We became a couple in college, lost touch, and got reacquainted after he read a New York Times piece that I had written about my illness. Now we’re really good friends. Back then, he helped me choose my first road bike, a Motobecane, to which he added special components. We took long bike rides, 80 miles a day or so, which were fun except for when we got stuck in the rain. So Rook was the first person to ride with me when I test drove my new pedals.

It was a glorious June day. We rode about 35 miles through the beautiful Western Massachusetts countryside, pulling up alongside each other and chatting part of the way. I only fell off once, when we were so engrossed in conversation that I wasn’t thinking about my pedals when we came to a stop sign. You need to get one foot out before a stop, but both of mine were in. I panicked and fell. But I wasn’t hurt and it was kind of funny, so I just laughed.

That was my last ride before my relapse. The bike has been in the garage, accumulating dust, for more than a year. I am two and a half months past my third transplant, and I want to start some doing some easy bike rides. But not with those pedals!
Rob, my friend at the trusty nearby bike shop, Highland Bike, exchanged the new pedals for a pair of “normal” ones with toe clips. He dusted off the bike, made a few adjustments and pronounced it ready to go.

I’m going to try it tomorrow.

I guess I have pedaled backwards. I upgraded, then downgraded.
But I’m not going to let myself be critical of myself. I’m just happy to be out in the world and able to ride.
Sometimes you have to go backwards to go forwards.

Running or swimming?

I just joined a Facebook group called Runners are Better than Swimmers. It has 1,578 members. Its competitor, Swimmers are Better than Runners, is, as of today, ahead in the race, with 1,783 members.
It’s an interesting time to join such a group, what with everyone (understandably) caught up in Michael Phelps' record-breaking eight gold medals at the Olympics. In an interview, Phelps said he wants to help swimming grow.
I can do both, but I put up with swimming, while I love running.

I’m a decent swimmer, and was even a lifeguard in my college days. (Passing that test, in which a burly instructor seemed like he was trying to drown me, was no fun.) I like to swim for fun on a hot day, but I don’t like doing it for exercise, especially in the winter, when there’s all that business of getting wet and the first shock of getting into the water, which feels cold at first even though it ends up feeling OK.

A few years ago, I got a common runner’s injury, plantar fasciitis. It’s a severe pain in the heel and turns out to be a big pain in the butt. I tried to run through it, but I could barely walk. I almost cried at the sharp pain even when just walking into my driveway to pick up the newspaper.

I complained bitterly. When I read up about it, I learned that other sufferers of plantar fasciitis are known to complain loudly too. A year or so before this foot fault, I had suffered mightily during treatment for leukemia. I got severe infections, rashes, fevers, the works. Yet I didn’t complain. My friends and family thought it odd, to say the least, that I made so much more noise about foot pain.

The podiatrist said that swimming was the best exercise at this point. I scowled.
When I told my friend Bob, a runner and tennis player whose hips were bothering him, he said, “Sooner or later we all end up in the pool.”

So swim I did. I had gotten very rusty, but my stroke got smoother with some practice and help from my teenage daughter, Katie, who is a beautiful swimmer. Eventually I found the Zen in swimming. Counting the laps, and feeling my body glide through the water, I felt myself grow calm and focused. And it did end up feeling like a good all-around workout.
My foot took months to feel better, but as soon as it did, I turned my back on the pool and took to the road.

Fear of food

Well, not exactly fear of food, but rather fear of eating the wrong food.
Patients must adhere to a restricted diet after transplant. It’s a low-bacteria diet ruling out many of the things I love. No fresh fruit (although thick-skinned fruit is OK). No salads. No take-out pizza. No fresh bakery items. No turkey sandwiches from the deli; actually no deli food at all unless you get the meat prepackaged, which just isn’t the same.
All vegetables must be cooked. No fresh pepper, though cooked pepper is OK. Did I miss anything? Probably.
Fear of eating the wrong food haunts other people too – dieters, athletes, dancers, diabetics and others must all watch their intake carefully.
The more you focus on avoiding certain foods, the more you want them. I crave the crunch an apple and the taste of summer that comes from eating a juicy ripe tomato or a plump blueberry. I’ve gotten pretty creative about cooking up tomatoes and making blueberry pancakes and muffins, but you get tired of going to all that trouble.
I cook well enough when it comes to the basics, and I can follow a recipe, but I don’t have a feel for what I’m doing. So I usually mess it up if I try to wing it somewhere along the line. If a recipe has too many steps, I get nervous and go on to something else. And when a recipe starts with “preheat oven,” I never do that first because I have to concentrate so hard on following the steps, I’d waste too much gas if I turned the oven on when they wanted me to.
My friend Deb, who is a real cook, lent me “The Classic Pasta Cookbook,” by Giuliano Hazan. It’s beautifully illustrated with photos of various types of pasta and ingredients, and its recipes are easy to follow.
I decided to make Spaghetti Alla Carbonara. To protect my weak immune system from germs, I can’t go into stores. So Deb got me the ingredients I didn’t have: flat-leaf parsley, good parmesan, and, instead of pancetta, good-quality, individually sliced pieces of bacon. The recipe called for egg yolks, but raw eggs would be a clear no-no, so she said I could boil the eggs briefly. She had something to do, so I was on my own.
It took a couple of tries to get the eggs right. Then, as directed, I mixed them with hand-grated cheese and salt. I was supposed to add parsley to that mixture, but we decided I would throw it in with the cooking bacon.
With bacon sizzling away nicely, mixed with white wine, I glanced at the cookbook and noticed that I had forgotten one thing in the egg/cheese mixture: black pepper. So I threw it in. And stared in dismay at what I had done. Even though I had read the recipe through, I had forgotten that I would not be cooking the egg mixture. All was ruined! No raw pepper allowed! First I tried to pick out the pepper, but it was no use. So I decided I would try to salvage the dish with a quick zap in the microwave.
The egg and cheese mixture quickly congealed, leaving me with clumps instead of a nice sauce with which to coat the bacon and pasta.
I stirred it all together and ate it anyway, because it was late and I was hungry.
It wasn’t great.
The next day my friend Jim Bloom gave me a bag filled with cherry tomatoes from his garden. For lunch I brought back last night’s ruined dinner. Now I wasn’t trying so hard because I figured it couldn’t get much worse. So I sautéed the tomatoes in olive oil with onions. Then I threw in some olives. And grated some more cheese. And tossed everything together.
It was much better than the night before. Actually, it was pretty good.
Everyone knows leftovers can taste better than the first time around.
But I found a little moral in the evolution of Pasta Dish #2 from Pasta Dish #1.
Sometimes the harder you try, the worse the outcome.
If you loosen up a little, the results can be much better.