No amount of brushing, flossing or rinsing will get rid of the brown stains on my lower teeth. I desperately need a cleaning but I'll have to wait until I'm one year post-transplant. I've always been overly sensitive about my teeth. I have an overbite and I compare my uppers to horse teeth. Thanks to my high cheekbones and small but attractive eyes (vanity alert), when someone looks at me, their gaze is drawn upward, away from my toothy grin. I hope. Maybe I'll try baking soda.
On the positive side, I have hair. It's cancer hair (I'm borrowing this phrase from a a fellow survivor), which means it's strangely curly, especially in the back where I'll be sporting a mullet by Spring. The front is still straightish but doesn't come close to covering my high forehead. I refer to it as the Julius Caesar look. Weird hair is better than no hair in my book.
My biggest concern about my physical appearance is that I'm rather emaciated. I've always been thin but when I look at my body in the mirror, I wince. I think I'm eating enough, and I hardly ever throw up anymore, but I'm obviously not taking in enough calories for my energy level. Before I go the yucky hi-cal commerical drinks route, I'm checking what I eat to see if it really is adequate. I'm keeping a food log (I have a feeling I've done this before), and my competitive side is trying to make the list as long and caloric as possible. Yesterday afternoon, I made myself a hot fudge sundae--two scoops, hot fudge sauce, peanuts and lots of whipped cream. I also started using the exercise bike in the theory that if I burn calories, I be hungrier than if I sit in a chair all day.
Speaking of exercise, I'm signing off now so I can take Turbo for a walk in the snow. I'll dress warmly and be very careful. Maybe I'll get rosy cheeks which will only add to my beauty.
Thursday, January 28, 2010
Tuesday, January 26, 2010
Home Alone
After more than eight months of unemployment, Marty is now working. Hooray! Had I not relapsed at about the same time he lost his job, the experience would have been a lot more anxiety-ridden for us. Instead, it became mere background noise to round three of my bout with leukemia.
The upside of Marty being at home was that he could take care of me, the kids, the house and whatever else I couldn't do. He was with me at the hospital everyday, here in Rhode Island and up in Boston. When I was discharged post-transplant, he made sure I took my meds, walked each day, and ate as much as possible. I was his job, and he did it exceptionally well.
Marty's new job is in New York City, some three hours away. On Sunday evening, he drove to Brooklyn where he's staying with an old friend of ours. We lived in downtown Brooklyn for 13 years and still have a lot of friends there, so Marty already has numerous dinner invitations lined up. On Friday evening, he will drive back to Rhode Island and spend the weekend at home. This will be the pattern for the next four to six months, until we sell our house and find an apartment in New York. Harry graduates from high school in June, so we hope to synchronize that with closing on the house and moving. It will be a major upheaval, and very stressful having the house on the market, but we'll manage. Eight years ago, Marty moved to Rhode Island two months prior to the family's arrival from Costa Rica. Even though we were selling our house to friends there, the transaction was one of the most stressful experiences in my life, thanks to Costa Rican bureaucracy. Selling here should be a piece of cake in comparison.
So I am home alone, left to my own devices and ostensibly in charge. I'm fine with this, and think the extra work and responsibility will make me stronger. I have Harry to keep me company and to help out. I have friends and neighbors who will pitch in with shopping and other errands. Marty isn't as sanguine about leaving me on my own, but I've assured him that although I'm not 100%, I feel perfectly capable of getting through the week unscathed. I'm a big girl, and still think of myself as tough as nails, even though I am physically diminished at the moment.
I'll try to keep the mischief level to a minimum. I've already done one unauthorized activity, which only torture will force me to reveal.
The upside of Marty being at home was that he could take care of me, the kids, the house and whatever else I couldn't do. He was with me at the hospital everyday, here in Rhode Island and up in Boston. When I was discharged post-transplant, he made sure I took my meds, walked each day, and ate as much as possible. I was his job, and he did it exceptionally well.
Marty's new job is in New York City, some three hours away. On Sunday evening, he drove to Brooklyn where he's staying with an old friend of ours. We lived in downtown Brooklyn for 13 years and still have a lot of friends there, so Marty already has numerous dinner invitations lined up. On Friday evening, he will drive back to Rhode Island and spend the weekend at home. This will be the pattern for the next four to six months, until we sell our house and find an apartment in New York. Harry graduates from high school in June, so we hope to synchronize that with closing on the house and moving. It will be a major upheaval, and very stressful having the house on the market, but we'll manage. Eight years ago, Marty moved to Rhode Island two months prior to the family's arrival from Costa Rica. Even though we were selling our house to friends there, the transaction was one of the most stressful experiences in my life, thanks to Costa Rican bureaucracy. Selling here should be a piece of cake in comparison.
So I am home alone, left to my own devices and ostensibly in charge. I'm fine with this, and think the extra work and responsibility will make me stronger. I have Harry to keep me company and to help out. I have friends and neighbors who will pitch in with shopping and other errands. Marty isn't as sanguine about leaving me on my own, but I've assured him that although I'm not 100%, I feel perfectly capable of getting through the week unscathed. I'm a big girl, and still think of myself as tough as nails, even though I am physically diminished at the moment.
I'll try to keep the mischief level to a minimum. I've already done one unauthorized activity, which only torture will force me to reveal.
Thursday, January 21, 2010
I Need a Makeover
Even those of you who haven't had a transplant or two will understand how on some days, you feel like your body needs an overhaul. Too many aches, too many systems short-circuiting, numbness here, tingling there, and a reluctance to look in mirrors.
Here's a list of body parts I'd like replaced.
1. My right rotator cuff, injured when they implanted my Hickman catheter
2. My right lung, just to get rid of the fungus
3. My left hip joint which started hurting out of the blue, especially when climbing stairs
4. My thyroid gland, which gave up the ghost in July
5. My fingernails--the nail tip on my left thumb resembles the New York City skyline
6. My salivary glands, which are operating at 50% capacity.
7. My digestive system, selective parts
In addition to the above, I could use a well-distributed padding of 10-15 lbs., more eyelashes, and an injection of moisture for my dry skin. Muscle tone and strength are wanting, and my endurance level is that of a woman nine months pregnant.
Is it so wrong to want to be the Bionic Woman?
Here's a list of body parts I'd like replaced.
1. My right rotator cuff, injured when they implanted my Hickman catheter
2. My right lung, just to get rid of the fungus
3. My left hip joint which started hurting out of the blue, especially when climbing stairs
4. My thyroid gland, which gave up the ghost in July
5. My fingernails--the nail tip on my left thumb resembles the New York City skyline
6. My salivary glands, which are operating at 50% capacity.
7. My digestive system, selective parts
In addition to the above, I could use a well-distributed padding of 10-15 lbs., more eyelashes, and an injection of moisture for my dry skin. Muscle tone and strength are wanting, and my endurance level is that of a woman nine months pregnant.
Is it so wrong to want to be the Bionic Woman?
Tuesday, January 19, 2010
The Crash
The full day on Friday was followed by another one on Saturday. My plan was to spend most of the day on the couch. This was not to be.
Harry had a track meet in Providence, and because he was running early we thought we'd take the chance of going to the arena to watch him. Armed with my arsenal of hand sanitizer, gloves and masks, I was prepared for any foe. It's crazy to live this way. I find myself never making eye contact with people, I run away from children, and compulsively clean my hands while listening for suspicious coughing. My social skills are not what they used to be. Do they come back?
Against my better judgment, Marty and I went out to dinner with friends, another trip to Providence. My heart was in it, but my stomach wasn't. The food was excellent, but I couldn't eat much of it. It took all my strength to keep my head from bobbing.
When we got home, Marty slipped me into bed like a letter into a mail slot. It took me Sunday and part of Monday to return to normal energy levels. Pushing myself is good because in the end, it makes me stronger. Lazing about doing nothing for a day or so after the crash is quite soothing. I have no fixed schedule, so there's no stress involved.
My job is to get stronger, and that's what I'm doing.
Harry had a track meet in Providence, and because he was running early we thought we'd take the chance of going to the arena to watch him. Armed with my arsenal of hand sanitizer, gloves and masks, I was prepared for any foe. It's crazy to live this way. I find myself never making eye contact with people, I run away from children, and compulsively clean my hands while listening for suspicious coughing. My social skills are not what they used to be. Do they come back?
Against my better judgment, Marty and I went out to dinner with friends, another trip to Providence. My heart was in it, but my stomach wasn't. The food was excellent, but I couldn't eat much of it. It took all my strength to keep my head from bobbing.
When we got home, Marty slipped me into bed like a letter into a mail slot. It took me Sunday and part of Monday to return to normal energy levels. Pushing myself is good because in the end, it makes me stronger. Lazing about doing nothing for a day or so after the crash is quite soothing. I have no fixed schedule, so there's no stress involved.
My job is to get stronger, and that's what I'm doing.
Saturday, January 16, 2010
A Full Day
Yesterday, we left our house at 7:15 am and drove to New York. Mysteriously, there was no traffic and we made it to our destination in Long Island City at 10:00 am. L.I. City sits under the 59th Street Bridge and is more or less an industrial wasteland. My husband had a job interview there, the first one he's had since he was laid off in April.
After the interview, which went well, we met friends for lunch nearby. This is New York: the bleak turns into the chic within a few blocks. I had a hearty appetite (surprise!), and it was great to be out with friends. After lunch, we headed into Manhattan to visit our son at Columbia. This was especially meaningful for me, since I'd been unable to take him to college in September. The midday traffic was bad. Even though my husband grew up in NYC and lived there for much of his adult life, you forget the best way to get from Point A to Point B. We made it to Columbia in non-record time and then had to find parking. After whirling around for 15 minutes, we found a spot on Amsterdam and were all set to walk away when a kindly gentleman pointed out we were parked illegally and would be towed. Back in the car, more whirling--a true taste of Manhattan.
The dorms were empty so it was safe for me to go inside without a mask. Mark went back early to train for track; classes don't start until Tuesday. He has a nice room on the 10th floor that gets lots of light. You can see the top sliver of the Empire State Building if you know where to look. This mission accomplished, we got back in the car and drove further uptown to the Armory, where high school and college track meets are run. My daughter was competing in the 800m dash at 4. The arena was filled with college students, so I took no chances and wore a mask until I found a remote seat in the back. It was fun to see her run (she came in 4th), and we had a chance to visit with her a little after the race.
We left at 5pm, in the heart of rush hour. It would take us 4 hours to get home at this rate, so I called my friend Connie who lives 30-40 minutes outside of the City and asked here if she was up for an impromptu visit. Always game for anything (she's from Nebraska), she said sure. We ordered in pizza and I spent an hour or so snoozing on the couch wrapped in a snuggy. At 8:30 we left for Rhode Island. I continued my nap in the car. We arrived home around two hours later. I stumbled up to my bedroom, put on my pj's and collapsed into bed. I haven't had a day like this since relapsing in April. It was exhausting, but it's good to know I have the energy to get through and enjoy life like a normsie.
Today, I rest.
After the interview, which went well, we met friends for lunch nearby. This is New York: the bleak turns into the chic within a few blocks. I had a hearty appetite (surprise!), and it was great to be out with friends. After lunch, we headed into Manhattan to visit our son at Columbia. This was especially meaningful for me, since I'd been unable to take him to college in September. The midday traffic was bad. Even though my husband grew up in NYC and lived there for much of his adult life, you forget the best way to get from Point A to Point B. We made it to Columbia in non-record time and then had to find parking. After whirling around for 15 minutes, we found a spot on Amsterdam and were all set to walk away when a kindly gentleman pointed out we were parked illegally and would be towed. Back in the car, more whirling--a true taste of Manhattan.
The dorms were empty so it was safe for me to go inside without a mask. Mark went back early to train for track; classes don't start until Tuesday. He has a nice room on the 10th floor that gets lots of light. You can see the top sliver of the Empire State Building if you know where to look. This mission accomplished, we got back in the car and drove further uptown to the Armory, where high school and college track meets are run. My daughter was competing in the 800m dash at 4. The arena was filled with college students, so I took no chances and wore a mask until I found a remote seat in the back. It was fun to see her run (she came in 4th), and we had a chance to visit with her a little after the race.
We left at 5pm, in the heart of rush hour. It would take us 4 hours to get home at this rate, so I called my friend Connie who lives 30-40 minutes outside of the City and asked here if she was up for an impromptu visit. Always game for anything (she's from Nebraska), she said sure. We ordered in pizza and I spent an hour or so snoozing on the couch wrapped in a snuggy. At 8:30 we left for Rhode Island. I continued my nap in the car. We arrived home around two hours later. I stumbled up to my bedroom, put on my pj's and collapsed into bed. I haven't had a day like this since relapsing in April. It was exhausting, but it's good to know I have the energy to get through and enjoy life like a normsie.
Today, I rest.
Sunday, January 10, 2010
Costa Rica Dreamin'
My body seems completely unable to regulate temperature. I am always cold unless I'm in bed. I blame this on my anemic blood, on the chemo that fried my thyroid, on the radiation that messed up other temperature-control glands, and on the deep winter freeze we've been shivering through along with most of the country. Then there's my inability to gain weight. A nice layer of fat would be so cozy now.
I read an Op-Ed column last week in The New York Times about how Costa Rica is a country of happy campers, among the happiest people in the world. The author suggests a number of reasons why this might be true: abolishing the army to spend money on education and healthcare; a lush environment that provides endless opportunity for recreation and relaxation; a culture that values family and friends over financial concerns. I personally think he left out an important element in his explanation of why Costa Ricans rank so high on the happiness index--the wonderful tropical climate.
I lived in Costa Rica for six years, and it is the climate I miss most. We lived in the Central Valley where it was temperate year-round: 75-80 by day; 60-65 by night. No need for heat; no need for air-conditioning. During the dry season, one perfect day flowed into the next. During the rainy season, the mornings were glorious, the afternoon rains a pleasant contrast to all that perfection. The cooling rains ate the dust that gathered everywhere, making everything unbearably green and alive.
So yes, good education, cultural values, and some of the most spectacular scenery on Earth make the Costa Rican people happier than most. But don't discount the fine weather. I think of the country's soothing sun and refreshing breezes and think, what am I doing freezing my beak off in the Northeast?
If I were allowed to fly, I'd head straight for Costa Rica. I would walk in the fresh mountain air and swim in the warm ocean beaches. And if I still had problems regulating body temperature, I'd crawl on a nice flat rock and heat myself from both sides, just like the iguanas do.
I read an Op-Ed column last week in The New York Times about how Costa Rica is a country of happy campers, among the happiest people in the world. The author suggests a number of reasons why this might be true: abolishing the army to spend money on education and healthcare; a lush environment that provides endless opportunity for recreation and relaxation; a culture that values family and friends over financial concerns. I personally think he left out an important element in his explanation of why Costa Ricans rank so high on the happiness index--the wonderful tropical climate.
I lived in Costa Rica for six years, and it is the climate I miss most. We lived in the Central Valley where it was temperate year-round: 75-80 by day; 60-65 by night. No need for heat; no need for air-conditioning. During the dry season, one perfect day flowed into the next. During the rainy season, the mornings were glorious, the afternoon rains a pleasant contrast to all that perfection. The cooling rains ate the dust that gathered everywhere, making everything unbearably green and alive.
So yes, good education, cultural values, and some of the most spectacular scenery on Earth make the Costa Rican people happier than most. But don't discount the fine weather. I think of the country's soothing sun and refreshing breezes and think, what am I doing freezing my beak off in the Northeast?
If I were allowed to fly, I'd head straight for Costa Rica. I would walk in the fresh mountain air and swim in the warm ocean beaches. And if I still had problems regulating body temperature, I'd crawl on a nice flat rock and heat myself from both sides, just like the iguanas do.
Wednesday, January 6, 2010
Refueled
It was a long day at the clinic. I really needed a transfusion. I napped on and off for a couple of hours, which helped. Except for my sluggish rbc's, my other counts were good. My white count was 5.1 (normal) and my platelets (125) had more than doubled since last month. I have an appointment at the clinic in four weeks, and with luck, my red cell production might creep up a bit. It actually did improve slightly from last month, but not enough to to keep my heart from beating rapidly everytime I climbed the stairs.
My leukemia book is going well, although I didn't write much in the past few days because I had almost no energy, including the mental kind. Instead, I watched dopey movies with my sons and summoned the butler anytime I needed anything. One movie, Be Kind Rewind, did provide a few laughs.
Now that I'm no longer a zombie, I have to start tackling some financial issues that are starting to creep into my dreams. I should dream I won the Lottery. I have to fill out a passle of financial aid forms for Harry, but I lack most of the information I need. I started working on our 2009 medical expenses, but only managed to compile figures for Marty and the kids. Do you blame me for dragging my feet when it comes to adding up my personal expenses? The aid forms are all due February 15, long before we do our taxes. It's no wonder families pay big bucks to have a consultant fill out these forms.
I'm taking a hiatus from knitting. Everyone in the family has a scarf, and my attempt at hats wasn't too successful. Mark liked his. Harry thought the one I made him was too girlish (or ugly--he always tries to spare my feelings). Mariel said she liked hers but she went back to college yesterday and I see she left it in her room. Now I can spend my time reading and writing and trying to put some muscle on this scrawny body.
My leukemia book is going well, although I didn't write much in the past few days because I had almost no energy, including the mental kind. Instead, I watched dopey movies with my sons and summoned the butler anytime I needed anything. One movie, Be Kind Rewind, did provide a few laughs.
Now that I'm no longer a zombie, I have to start tackling some financial issues that are starting to creep into my dreams. I should dream I won the Lottery. I have to fill out a passle of financial aid forms for Harry, but I lack most of the information I need. I started working on our 2009 medical expenses, but only managed to compile figures for Marty and the kids. Do you blame me for dragging my feet when it comes to adding up my personal expenses? The aid forms are all due February 15, long before we do our taxes. It's no wonder families pay big bucks to have a consultant fill out these forms.
I'm taking a hiatus from knitting. Everyone in the family has a scarf, and my attempt at hats wasn't too successful. Mark liked his. Harry thought the one I made him was too girlish (or ugly--he always tries to spare my feelings). Mariel said she liked hers but she went back to college yesterday and I see she left it in her room. Now I can spend my time reading and writing and trying to put some muscle on this scrawny body.
Sunday, January 3, 2010
Top Ten Experiences of the Decade
1. Living in a villa with 18 mango trees on the property
2. Soaking in a hot spring while sipping a margarita and watching a volcano erupt
3. Glimpsing the Resplendent Quetzal
4. Taking my kids to their first Yankee game via the "D" train
5. Raising four Bouviers des Flandres
6. Biking around Block Island with my family
7. Moving Mariel into her dorm freshman year
8. Seeing Mark win the New England Cross-Country Championship
9. Being accepted into the Rhode Island Teaching Fellows Program
10. Staying alive
2. Soaking in a hot spring while sipping a margarita and watching a volcano erupt
3. Glimpsing the Resplendent Quetzal
4. Taking my kids to their first Yankee game via the "D" train
5. Raising four Bouviers des Flandres
6. Biking around Block Island with my family
7. Moving Mariel into her dorm freshman year
8. Seeing Mark win the New England Cross-Country Championship
9. Being accepted into the Rhode Island Teaching Fellows Program
10. Staying alive
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