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.
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.
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.
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.
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.
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.
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.
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.
Well, it's not exactly fear of flowers, because I love to look at my garden. But I am afraid of going too near the flowers, of deadheading, of weeding or otherwise digging in the dirt, and even of cutting a few flowers for the table.
My mother loved spending time in her garden, while for me, the fun wears off after a short session. Mostly I'm not that great at the Zen of gardening. But I love to have fresh flowers around. And now that I can't garden, I miss it.
The reason: The threat of aspergillus, a fungus that can be life-threatening when a person (like me) with a weak immune system gets infected with it. It's present in the dirt and doesn't usually bother "normal" people, but it bothered me in a big way when I was undergoing chemotherapy for leukemia in 2003.
No one can really be sure where I was infected, but the garden is a suspect. I developed a fungal ball on my lung and needed lung surgery before we could proceed with the rest of my treatment, which consisted of high-dose chemo followed by my first stem cell transplant.
Now that I am recovering from my third transplant, which I had June 10, I stand back and give my children instructions on what to plant and what to pull. Right now they've taken off in various directions, so I depend on the kindness of friends to help me out. I feel like a faux aristocrat standing back and pointing to this and that task that needs to be done, but I know I can't get in there myself. Once when nobody was around to help, I held my breath and deadheaded a beckoning snapdragon. And a couple of times I put on a mask and gloves and cut a bunch for the table.
The other day I stood back and chatted with a friend who was pulling weeds. "I wish I could do a little of that," I said. He asked me how far out I was (from the transplant date), and I said a little more than 50 days. I think I made a face signaling that at that moment, I didn't feel like 50 days was very long.
"Sounds like a nice milestone to me," he said.
I had forgotten to be grateful for the progress I had made in those 50 days. I had forgotten that although I can't smell the flowers up close, I can take in their beauty from just a few feet away.
This time last summer, I went with my tennis team to compete in the regional tournament known as the Districts, formally called the District Championships. The team, sponsored by the USTA, is in a Western Massachusetts league. When you win your regular season or place second, you advance to the Districts, where you play teams from different states. It's always the first weekend in August, which last year was Aug. 4 and 5. If you win there, it's on to the Nationals.
Players always get a little worked up at the Districts, where the competition can be intense. The location changes from year to year; last year we went to Southern Connecticut and played teams from that wealthy area. For our first match, our opponent was the team that eventually won the whole thing. The women were tall, svelte, tanned and for the most part gorgeous. They had long blonde pony-tailed hair. They were nice, but we couldn't help but call them the Barbies. They wore turquoise and white outfits; our colors were yellow and black. In the restroom, I heard one of them call our team the Bumblebees. I hope this doesn't sound like sour grapes, but they looked like they played every day. My partner and I lost.
Playing with a different partner in the next match, we won against a more normal-looking team. It's a great feeling to win at the Districts, where, when you come up from the court, everyone claps.
Our team went out to dinner, had a few drinks and generally had a good time together, whether we had lost or won, although I have to admit that over the years when we lose at the Districts, many of us dissolve into an agonizing post-mortem in which we play the "If only I had...." game, as in "If only I hadn't lost my serve so many times," or "If only I hadn't hit that last ball out," etc.
If only my tennis loss was my biggest problem.
Physically I felt great at last year's Districts, though I was anxious about my doctor's appointment that coming Monday. My doctor had been keeping an eye on a worrisome decrease in my white blood count, and on Monday, a blood test would show if the counts were still low or if they had recovered to a normal level.
Monday, Aug. 6, 2007: The blood count was still low, and the doctor performed a bone marrow biopsy to find out of the leukemia had returned.
Wednesday, Aug. 8, 2007: I went back for the results. The leukemia had, indeed, returned, after nearly four years of remission. The good news was that there was only a little, but the bad news was that I would need to go back into the hospital and undergo chemotherapy again, complete with hair loss and other side effects. This time I would get donated bone marrow instead of last time when I was transplanted with my own cells.
I was in shock when I heard the news. My friend Margaret, who was in the waiting room, had come to support me just in case I had bad news. I don't think either of us expected what happened. Margaret burst into tears.
It's impossible to keep from saying "This time last year..." And impossible to stop the anniversary from raising your anxiety level.
But you can foster your positive thoughts too: This time last year I had leukemia and this year I don't. I have great doctors who know what they're doing. This thing is curable. I'm going to be OK.
The other day I took the dog for a walk on a trail where I used to run, and where I hope to run again. I noticed a root sticking up that I had stumbled over before. This time I stepped over the root. So, I said to myself, just because you were tripped up before does not mean you will be tripped up again.
I've spent a lot of time in the hospital being treated for leukemia and then recuperating at home with low energy, and along the way I discovered ways to maintain some type of fitness.
If you're confined to a hospital room or if you can't move around much at home, you can always do a little gentle yoga. A hospital nurse showed me how to do some easy poses in the bed, and I also remembered some chair yoga from a Rodney Yee video on back care. You can just sit in the chair and gently twist from side to side, or do a similar twist lying down or sitting up in the bed. Also good in a chair is simply keeping one foot on the floor and then placing the opposite heel, flexed, over the knee for a good stretch, doing the same on the other side. Also in the chair, you can bend over and let your arms and head dangle.
Back in the bed, you can lie on one side, then the other, and do some leg lifts. You could also use a pair of pajama pants or whatever else is lying around to make a strap. Then lie on your back, raise one leg at a time, and place the "strap" in the arch of your foot while anchoring the strap in you hands. You can also do both legs, raised, at a time. This provides a good stretch. Ankle rotations are also helpful.
Sit-ups in the bed, as many or as few as you're comfortable with, help maintain your core strength.
You can keep some arm strength by doing wall push-ups. Shoulder rolls are a good relaxer, and stretching always helps. Some days I threw in a few wall squats, putting my back against the wall and then doing the motion of sitting down in a chair and staying there for as long as I could.
When I was in the hospital, sometimes for weeks at a time, I tried to walk every day, and sometimes I rode a stationery bike. When I couldn't leave the pod, I walked back repeating healing and calming words in my mind. The nurses usually had an idea of how many lengths constituted a mile; on one larger pod it was 44; on a smaller pod it was 54. Walking while counting helped me to take a break from worrying.
When my blood counts fell, my "yoga" nurse, a muscular, friendly man named Julio (sorry, never knew last name), suggested I send love to my white blood cells. So I did it while I walked.
Mary Jane Ott, a nurse practitioner whom I first met while she worked in the pain and palliative care division, was now working more with children. But she had become a big support and always seemed to find me in the hospital. She's so serene that just being around her, you begin to relax. She brought me a multi-colored sign reading BREATHE. We put it up on the wall as a reminder to do what we sometimes forget. Well, we don't actually forget, but when you pause to be aware of your breath, or count each inhale and exhale to 10 or more and back, you calm down. She also showed me some bed yoga, and one time while I was all clenched up and shivering from a fever, she sat by me and talked me through a relaxation technique until I unclenched.
Sometimes I practiced my tennis swing, without a racquet of course. I went through the forehand and backhand motion, visualizing the path of the ball. I knew I looked pretty silly, so I tried to do it when nobody was looking.
If you look for some of the positives in not being able to do much at home or being in the hospital, they include having the time to meditate and NOT having the distractions that make you jump up and do something else. The better I feel and the more activities I do, the least likely I am to sit quietly. I think about making dinner, walking the dog, doing the wash or whatever, and before I know it I've jumped up. (I know, gotta work on that.)
The internet and bookstores are filled with books and CDs about meditation. I found the most success with the shorter mindfulness CDs made by Jon Kabbat-Zinn, the well-known author on the topic of mindfulness. His Series 1, a set of 45-minute CDs, is good for more advanced practitioners, but if you're an antsy person like I am, you'll have better luck with Series 2, which offers a choice of shorter meditations. They are definitely helpful for calming down. I learned about another helpful site, Healthjourneys.com, that has a wide range of CDs and videos on health and healing, by practitioners including Kabbat-Zinn, Bernie Siegel, Emmett Miller and Belleruth Naparstek. Many include guided imagery and meditation. I even has one on bone marrow and stem cell transplantation! I ordered it but haven't tried it yet. The description: "This imagery uses powerful metaphors of rescue, rebirth and resurrection, cushioning the rigors of chemo with evocative images of love, protection and support, and instilling hope, energy, comfort and patience during the recovery period." Sounds good to me.
This blog is about falling down and getting up, coping and coming back after four bone marrow transplants for Acute Myeloid Leukemia, or AML, starting in 2003 when I was diagnosed after feeling winded while running a 10-K road race. I have three children, Ben, Joe and Katie, and one Labrador retriever, Maddie, short for Madison, as in Madison (Ave.), in honor of my hometown, New York, New York.