This is my plug for reading for pleasure, a habit that's in steep decline in the U.S. Research I've done for a grant I'm writing confirms this sorry news. Americans read for fun on average 7 minutes per day. We spend hours, at times slumped and drooling, in front of the tube. My sons have pretty much replaced TV with video gaming, which I suppose provides training in finger dexterity, enabling faster text messaging ability, but I'm not sure if the benefits go beyond that.
I'm reading two books at the moment, one my daughter Mariel recommended called "The Spirit Catches You and You Fall Down" and another entitled "Things Fall Apart." I've been in a World Lit mode, which means I've been all over the globe sampling various cultures and trying to get my geography straight. "The Spirit Catches You" by Anne Fadiman is a non-fiction account of the acute culture clash between Hmong refugees and American doctors in Merced, California. The Hmong are an ethnic Chinese people who migrated to Southeast Asia in the 70's and eventually moved to the U.S. (and other countries). Chinua Achebe, a Nigerian, wrote "Things Fall Apart" in 1959, an assignment in my son Harry's English class. He is kindly allowing me to read it. I'm not very far into either of these books, but I'll admit that I'm entirely ignorant of the cultures they describe.
Just before starting these books, I finished "A Fortunate Life" by A.B. Facey. Facey lived most of his life in the Australian bush, but saw a bit of the world when he fought at Gallipoli during WWI. His was a harsh, impoverished life, with no formal education (he taught himself how to read and write), and little in the way of family support. Prior to that book, I read "Dirt Music" by Tim Winton, a novel that takes place in present-day Western Australia. I'm lucky to have a book-loving friend in Melbourne who's been sending me books (including an Aussie phrase book) I'd never run into otherwise. "Dirt Music," with its references to Thomas Hardy and other English writers of the late 19th - early 20th-century, made me want to re-visit that literary period, and so I re-read Hardy's "Return of the Native." If you ever want to dwell on human frailty and futility, Hardy's your man. Ditto if you want to improve your vocabulary, and your reading ability in general.
What books have you read lately that you'd recommend? My niece mentioned "The Brief Wondrous Life of Oscar Wao" by Junot Diaz (I think she met the author at a reading), so I've requested it from the library.
If you're brave enough to discover just how much you don't know, read.
Friday, December 14, 2007
Thursday, December 13, 2007
Testing, 1, 2, 3, 4, 5 ...
Yesterday was my BIG 100-day post-transplant check-up, done 4 days early (Day 96) because I don't like to wait until the last minute to complete my assignments.
My first stop was Phlebotomy, where they drained me of 13 tubes of blood. Then it was off to find the Respiratory Clinic where I was scheduled for a Pulmonary Function Test. I'm happy to tell you I passed all the various tests, which involve breathing into a tube in different ways. The results compared favorably with the one I'd had pre-transplant, which means my lungs are fine. Next, I went to Radiology for a chest x-ray, which turned out to be normal, too.
Then we (Marty and I) met with the doctor's assistant to go over meds, bloodwork, etc. I was hoping I'd be able to stop boiling my tap water and be able to eat grated romano cheese, but the answer was no and no. I can have freshly ground pepper, though.
Finally, I had a bone marrow biopsy. It was a little more uncomfortable than usual, but not too bad. Unfortunately, the doc had to re-insert the needle because the first attempt failed to bring up the small bone chip they analyze in addition to the marrow they aspirate. Are you cringing?
Now it's a waiting game, a game I am all too familiar with, and one I hate with a passion. I was told to call in a week's time because they'd probably have the chimerism test back by then, too. Stay tuned for the latest score in the Aussie vs. the Coloradan Slugfest. I'm cautiously optimistic that I remain in remission, but since I've been sucker-punched before, I'm keeping my dukes up just in case.
My first stop was Phlebotomy, where they drained me of 13 tubes of blood. Then it was off to find the Respiratory Clinic where I was scheduled for a Pulmonary Function Test. I'm happy to tell you I passed all the various tests, which involve breathing into a tube in different ways. The results compared favorably with the one I'd had pre-transplant, which means my lungs are fine. Next, I went to Radiology for a chest x-ray, which turned out to be normal, too.
Then we (Marty and I) met with the doctor's assistant to go over meds, bloodwork, etc. I was hoping I'd be able to stop boiling my tap water and be able to eat grated romano cheese, but the answer was no and no. I can have freshly ground pepper, though.
Finally, I had a bone marrow biopsy. It was a little more uncomfortable than usual, but not too bad. Unfortunately, the doc had to re-insert the needle because the first attempt failed to bring up the small bone chip they analyze in addition to the marrow they aspirate. Are you cringing?
Now it's a waiting game, a game I am all too familiar with, and one I hate with a passion. I was told to call in a week's time because they'd probably have the chimerism test back by then, too. Stay tuned for the latest score in the Aussie vs. the Coloradan Slugfest. I'm cautiously optimistic that I remain in remission, but since I've been sucker-punched before, I'm keeping my dukes up just in case.
Tuesday, December 11, 2007
Breakfast for Dinner
Every so often, my family likes to take a break from the protein/starch/vegetable dinner dialectic and have breakfast instead. Last night, we had corned beef hash, eggs and Pillsbury "Butter-Tasting" biscuits. I was immediately suspicious about those biscuits, knowing full well that they contained faux butter, whatever that is. Then I made the mistake of reading the food label on the can of corned beef. We consumed so much cholesterol, I was was sure the blood in our arteries had turned to sludge.
I calculated that I myself had swallowed 550 mg. of cholesterol, 250 mg. more than the American Heart Association's daily recommendation. Whoa! No wonder I felt greasy and bilious afterwards. Marty decided to put off his fasting lipids test for another day.
What's amazing is that some people have this type of breakfast for breakfast nearly every day, perhaps substituting bacon or sausage for the hash. It's Lipitor to the rescue!
Chastened, I plan to counterbalance yesterday's gluttony with a more Spartan diet today. Breakfast consisted of cooked oatmeal with 1% milk and a drizzling of maple syrup. How virtuous!
Tomorrow, I'm going to Boston for my super-duper 100-day post-transplant check-up, only it's day 96. My lungs will be the focal point for some reason. I have to submit to a pulmonary function test and a chest x-ray. These are easy to handle and involve no pain. It's the bone marrow biopsy (my 13th in 21 months) I'd prefer to skip, both for the discomfort it causes, and the 4 or 5 days of anxious waiting for results.
Where's my Ativan?
I calculated that I myself had swallowed 550 mg. of cholesterol, 250 mg. more than the American Heart Association's daily recommendation. Whoa! No wonder I felt greasy and bilious afterwards. Marty decided to put off his fasting lipids test for another day.
What's amazing is that some people have this type of breakfast for breakfast nearly every day, perhaps substituting bacon or sausage for the hash. It's Lipitor to the rescue!
Chastened, I plan to counterbalance yesterday's gluttony with a more Spartan diet today. Breakfast consisted of cooked oatmeal with 1% milk and a drizzling of maple syrup. How virtuous!
Tomorrow, I'm going to Boston for my super-duper 100-day post-transplant check-up, only it's day 96. My lungs will be the focal point for some reason. I have to submit to a pulmonary function test and a chest x-ray. These are easy to handle and involve no pain. It's the bone marrow biopsy (my 13th in 21 months) I'd prefer to skip, both for the discomfort it causes, and the 4 or 5 days of anxious waiting for results.
Where's my Ativan?
Monday, December 10, 2007
Eat, Pay, Love
Faithful, even occasional readers of this blog know that I was required to follow strict food guidelines in the three months following my transplant. Except for a few relatively minor lapses (I confess to three fresh bagels), I did my best to adhere to the letter of the law. I'm sure I committed unintentional blunders, but fortunately I suffered no consequences.
Last week I was told I could "liberalize" my diet. I'm afraid I went overboard. I added heretofore forbidden foods at a rate and quantity that likely compares to the amount of alcohol consumed by the average freshman college student on that first weekend away from home. Goodbye processed food, hello pizza, Thai take-out, salad, apples, more salad, bakery-fresh bread, birthday cake, leftover Thai-take-out--you get the idea. The problem was, I was sure that I would pay some price for binging on deliciousness. Even the tiniest digestive signs fed my anxiety. The deadliest strains of e. coli and salmonella bacteria infected my thinking, if not my gut. I worried I would not know which food had poisoned me. Unlike the recommended method of introducing new foods to a baby's delicate system (that is, one food at a time), I re-introduced many foods all at once. The food fest was therefore tempered with the sobering thought that I might need to have my stomach pumped.
Today I can say I have no regrets: I loved eating all that yummy stuff. That's easy to say since I survived the orgy with only minor indigestion that wasn't even Rolaid-worthy. I love good food, and can't wait until I can have a medium rare steak washed down with a sturdy red. But wait I must, probably at least another nine months.
Last week I was told I could "liberalize" my diet. I'm afraid I went overboard. I added heretofore forbidden foods at a rate and quantity that likely compares to the amount of alcohol consumed by the average freshman college student on that first weekend away from home. Goodbye processed food, hello pizza, Thai take-out, salad, apples, more salad, bakery-fresh bread, birthday cake, leftover Thai-take-out--you get the idea. The problem was, I was sure that I would pay some price for binging on deliciousness. Even the tiniest digestive signs fed my anxiety. The deadliest strains of e. coli and salmonella bacteria infected my thinking, if not my gut. I worried I would not know which food had poisoned me. Unlike the recommended method of introducing new foods to a baby's delicate system (that is, one food at a time), I re-introduced many foods all at once. The food fest was therefore tempered with the sobering thought that I might need to have my stomach pumped.
Today I can say I have no regrets: I loved eating all that yummy stuff. That's easy to say since I survived the orgy with only minor indigestion that wasn't even Rolaid-worthy. I love good food, and can't wait until I can have a medium rare steak washed down with a sturdy red. But wait I must, probably at least another nine months.
Friday, December 7, 2007
Remembrance of Things Past
I reached for the small bottle of amber liquid and poured some on the washcloth. Suddenly, I was transported back to Roger Williams Medical Center, where I'd spent too much time being treated for leukemia. I had to be careful washing around the catheter that protruded from my chest, even though it was covered with plastic. Nausea, a near-constant companion, surrounded me in the steamy mist and threatened to knock me over. The all-purpose shampoo/body wash mocked me as I slathered it over my slumping, chemo-ravaged frame. I had no hair, and taking a shower had become an oppressive task. The liquid reeked of cancer.
The smell of that bath gel brought back awful memories. Why had I saved it? Looking at the bottle hadn't unnerved me, but the smell sent me right back to a time and place I prefer not to re-visit. Part of me, the tough (and thrifty) part says: keep the cursed stuff, use it til it's done and kick that olfactory memory in the butt. The other part says: toss the goo; it's not worth the mental trauma.
What would you do?
The smell of that bath gel brought back awful memories. Why had I saved it? Looking at the bottle hadn't unnerved me, but the smell sent me right back to a time and place I prefer not to re-visit. Part of me, the tough (and thrifty) part says: keep the cursed stuff, use it til it's done and kick that olfactory memory in the butt. The other part says: toss the goo; it's not worth the mental trauma.
What would you do?
Wednesday, December 5, 2007
Holiday Gifts
I got a wonderful gift yesterday, all the sweeter because it was unexpected. My doctor told me to begin tapering one of my immuno suppressant drugs, reducing the Prograf from 3 mgs. per day to 2. Normally, this wouldn't happen until around Day 100, but due to the apparent precocity of my baby boy blood, I was deemed ready to taper at Day 89. But that's not the gift I'm referring to, although it is connected to loosening the handcuffs on my spanking new immune system, which is what the reduction in Prograf does. No, the gift was much more exciting than one less pill per day (and a little one at that). My doctor said I can now eat some of the foods I've been denied these last 3 months: salad, thin-skinned fresh fruits (apples, grapes), undercooked veggies, fresh bread/bagels/bakery items and--here's the best part--take-out food including pizza. Unfortunately, I don't live in the pizza capital of the world, which would be NYC. But we can get decent New-York-style pizza here in Little Rhody, and (excuse the shouting) WE ORDERED SOME FOR DINNER LAST NIGHT.
The pizza was pretty tasty, but it ended up being the gift that kept on giving. At 2:00 am, I awoke with a bit of a stomach ache, thinking great, I've poisoned myself. But it went away, so it must have been mere indigestion. This morning, I enjoyed a crusty baguette for breakfast. Maybe I'll have an apple for a snack later on.
My excitement about eating foods like pizza and french bread is no doubt a typical response for a transplant patient. So much of my life right now is proscribed by my transplant, that it's a minor miracle when a change occurs. It's not just the pizza, but what it represents. My body is getting stronger and able to take on a few new risks. My crawling immune system is learning to how to walk. Let's just hope any stumbles are minor and not ER-quality.
I've saved the best gift for last, one that I gave myself: I started working again. I'm back to grant writing for the library, from the comfort and safety of my own home. My first project is due December 16, basicially an essay describing what unique or creative way the library has encouraged reading this year. My knitting project has suffered a bit, but it was basically limping along anyway. Someday, I will have a sweater. In the meantime, I'm getting a little self-estem boost, and a modest paycheck.
The pizza was pretty tasty, but it ended up being the gift that kept on giving. At 2:00 am, I awoke with a bit of a stomach ache, thinking great, I've poisoned myself. But it went away, so it must have been mere indigestion. This morning, I enjoyed a crusty baguette for breakfast. Maybe I'll have an apple for a snack later on.
My excitement about eating foods like pizza and french bread is no doubt a typical response for a transplant patient. So much of my life right now is proscribed by my transplant, that it's a minor miracle when a change occurs. It's not just the pizza, but what it represents. My body is getting stronger and able to take on a few new risks. My crawling immune system is learning to how to walk. Let's just hope any stumbles are minor and not ER-quality.
I've saved the best gift for last, one that I gave myself: I started working again. I'm back to grant writing for the library, from the comfort and safety of my own home. My first project is due December 16, basicially an essay describing what unique or creative way the library has encouraged reading this year. My knitting project has suffered a bit, but it was basically limping along anyway. Someday, I will have a sweater. In the meantime, I'm getting a little self-estem boost, and a modest paycheck.
Monday, December 3, 2007
Mind Over Matter
All my life I've depended upon sheer force of will to accomplish things. When I was dealt the leukemia card, I never once thought I wouldn't be cured (well, maybe once or twice). Cancer aside, I have a long history of making things happen through willpower. My return to running is a good example: my head says do it; my body feels like a whipped horse. Of course, my willpower is very effective in motivating me, but less so in getting other people to do stuff they'd rather not do. I force myself to do things I don't want to do, even when my body (and my brain) says let's table that to later or tomorrow or five years from now. Call me crazy, driven, obessive. Just stay out of my way.
Hubris, I know. Rationally, I realize I can't control matter, any more than I can will a heavy object to float in space or move across the floor. I had no control over those rogue blood cells that decided a coup d'etat would be amusing. I have little control over the nasty microbes in my environment that are surely out to get me. I try to avoid giving them a chance, but you can't control everything, or even much. It's a veneer, a protective shell this belief in mind over matter. Scratch the surface, and the chaos that lies beneath overwhelms.
Lest you think this is pure philosophical drivel, I'll provide an example of what I'm talking about. Here I sit, 87 days post-transplant and I'm apparently fine. Fine meaning the transplanted stem cells did what they were supposed to do, and I have not been attacked by any opportunistic infections, even though my immune system is like a house of cards, easily brought down. Of course, I try to control my environment as much as possible. I take my meds religiously; I worship at the fount of hand sanitizer; only foods which have been blessed by the All-Knowing Nutrionist pass my lips. You could probably do open-heart surgery in my kitchen, it's so clean. Even so, lapses are possible, and then there's all the things over which I hold zero sway: my son coming down with a cold; the wood smoke I inhaled on my walk; the honey I put in my home-made granola possibly not being cooked enough*. Each of these dangerous (for me) things happened yesterday. The only way to know if they won't harm me in some way is to wait a few days to see if the other shoe drops, that is, if I develop a fever, a cough, a fungal overload.
In the meantime, I soldier on, doing the best I can to stuff Anxiety in the broom closet (I'm not allowed to sweep or vacuum, so that's a good place to put him), kidding myself into believing I can control things, even with a mind that's a stern and uncompromising task-master. Matter always trumps mind, but I choose not to think about that.
*For some reason, raw honey is the only item on the "Never-Eat-Ever-Again" list for patients who've had transplants.
Hubris, I know. Rationally, I realize I can't control matter, any more than I can will a heavy object to float in space or move across the floor. I had no control over those rogue blood cells that decided a coup d'etat would be amusing. I have little control over the nasty microbes in my environment that are surely out to get me. I try to avoid giving them a chance, but you can't control everything, or even much. It's a veneer, a protective shell this belief in mind over matter. Scratch the surface, and the chaos that lies beneath overwhelms.
Lest you think this is pure philosophical drivel, I'll provide an example of what I'm talking about. Here I sit, 87 days post-transplant and I'm apparently fine. Fine meaning the transplanted stem cells did what they were supposed to do, and I have not been attacked by any opportunistic infections, even though my immune system is like a house of cards, easily brought down. Of course, I try to control my environment as much as possible. I take my meds religiously; I worship at the fount of hand sanitizer; only foods which have been blessed by the All-Knowing Nutrionist pass my lips. You could probably do open-heart surgery in my kitchen, it's so clean. Even so, lapses are possible, and then there's all the things over which I hold zero sway: my son coming down with a cold; the wood smoke I inhaled on my walk; the honey I put in my home-made granola possibly not being cooked enough*. Each of these dangerous (for me) things happened yesterday. The only way to know if they won't harm me in some way is to wait a few days to see if the other shoe drops, that is, if I develop a fever, a cough, a fungal overload.
In the meantime, I soldier on, doing the best I can to stuff Anxiety in the broom closet (I'm not allowed to sweep or vacuum, so that's a good place to put him), kidding myself into believing I can control things, even with a mind that's a stern and uncompromising task-master. Matter always trumps mind, but I choose not to think about that.
*For some reason, raw honey is the only item on the "Never-Eat-Ever-Again" list for patients who've had transplants.
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