My family has a tradition of spending the holidays in the Pocono Mountains with friends from our Brooklyn days. Mariel and Max became friends at playgroup nearly 20 years ago. They're now juniors in college.
A year ago, we didn't make the trip to the house on the lake. I was 3 months post-transplant, and my doctor firmly nixed the idea. "8 people (9) and 2 (3) dogs confined indoors during the winter is a bad idea for you now. You'll go next year."
I always loved when my doctor said things like that because it meant he had faith there was going to be a "next year."
When everyone gets up, we're piling into the van and driving 4-5 hours west to Pennsylvania. We're bringing lobsters and home-made cheesecake. More importantly, we're bringing me.
Wednesday, December 24, 2008
Wednesday, December 17, 2008
Sterner Stuff
I've written about this before but it bears repeating, especially as we reflect on the year that's passed and look to the one that lies ahead. People who've battled serious illness tend to have different perspectives and priorities than those who've never faced a deadly health crisis, either personally or via a close family member. If I can "thank" leukemia for anything, it's for teaching me that nearly all our day-to-day concerns do not deserve the weight we give them.
Current economic ills certainly merit our attention, especially when they hit home in the form of losing a job, and possibly the health insurance that came with that job. It's difficult to ignore the dire warnings, bleak reports and personal stories of economic ruin, especially since the media is obsessed with the topic. Certainly, everyone should have a plan should financial disaster strike. I'm as concerned as the next person that my husband may lose his job and we'd be up the proverbial creek.
I'm just having a hard time mustering the fear and panic some seem to be feeling. I suppose that's because I've got bigger fish to fry, as do my fellow travelers on the blood cancer road. (Apologies for that mixed metaphor!) If we're not currently battling disease, we live with the nagging fear it will be back.
Read Ronni Gordon's most recent post on her blog Running for My Life. Check out Ann's Fight and Seattle Times. You'll be amazed by the fighting spirit that shines through on these blogs. I single out Ronni's post because it so poignantly captures the challenges of the struggle and the strength necessary to keep battling. I read Ronni's post last night and thought: what the hell is she made of? Pretty stern stuff.
As we worry about the uncertain economic times ahead (and we all do), keep this in mind: If you lose your job, you can get a new one, maybe not tomorrow or any time soon, but someday. Even if you remain employed but are tailoring your lifestyle to leaner times, it might be unpleasant but you can do it. But you get just one life. Don't waste it obsessing about your job, your stock portfolio (if you're lucky enough to have one), your dwindling dollars. Believe me, there are moments when I have to remind myself of this simple truth.
Sorry for the preach, but you'll thank me someday.
Current economic ills certainly merit our attention, especially when they hit home in the form of losing a job, and possibly the health insurance that came with that job. It's difficult to ignore the dire warnings, bleak reports and personal stories of economic ruin, especially since the media is obsessed with the topic. Certainly, everyone should have a plan should financial disaster strike. I'm as concerned as the next person that my husband may lose his job and we'd be up the proverbial creek.
I'm just having a hard time mustering the fear and panic some seem to be feeling. I suppose that's because I've got bigger fish to fry, as do my fellow travelers on the blood cancer road. (Apologies for that mixed metaphor!) If we're not currently battling disease, we live with the nagging fear it will be back.
Read Ronni Gordon's most recent post on her blog Running for My Life. Check out Ann's Fight and Seattle Times. You'll be amazed by the fighting spirit that shines through on these blogs. I single out Ronni's post because it so poignantly captures the challenges of the struggle and the strength necessary to keep battling. I read Ronni's post last night and thought: what the hell is she made of? Pretty stern stuff.
As we worry about the uncertain economic times ahead (and we all do), keep this in mind: If you lose your job, you can get a new one, maybe not tomorrow or any time soon, but someday. Even if you remain employed but are tailoring your lifestyle to leaner times, it might be unpleasant but you can do it. But you get just one life. Don't waste it obsessing about your job, your stock portfolio (if you're lucky enough to have one), your dwindling dollars. Believe me, there are moments when I have to remind myself of this simple truth.
Sorry for the preach, but you'll thank me someday.
Tuesday, December 9, 2008
The Difference a Year Makes
One year ago, I was holed up at home liberally using hand sanitizer and venturing out into the world only when absolutely necessary, and then, masked and gloved. I was three months post transplant and not about to risk my life holiday shopping. I convinced myself I was one lucky gal to have the perfect excuse to indulge my congenital dyshopnia.
Now that I'm back in the real world, I have no choice but to run around like a madwoman as I sandwich buying forays between work and and other activities. Today I found myself tooling around Target, lost in my usual protective fog. "Patricia," said a woman coming toward me. She identified herself in case I didn't remember her, which was good because I was experiencing one of those I-know-you-but-have-no-idea-from-where moments. It was Kelly, Mark's kindergarten teacher. The odd thing about this is that Mark attended kindergarten in Costa Rica. Kelly's originally from Rhode Island and I'd actually seen her a few years ago at a get-together arranged by the visiting former director of the Costa Rica preschool, but that's another story.
Time flies at warp speed. Kelly's now married and has children of her own; Mark's a senior in high school. Kelly asked after my health and complimented my appearance. I'm used to people expressing shock that I'm not only still standing, but have a full head of hair and actually look pretty good for someone who's been through the medical wringer. I suppose it is pretty amazing.
So, I had a productive morning at work, managed a little shopping without cracking, and am now energetically plotting my next moves. All this on top of going out last night. That's right, we went to a chicken wing competition in Providence at my usual bedtime. Friends of ours who were entered in the wing-off asked us to come and cast our votes. Normally, I'd politely shrug off a Monday night invitation to sit at a bar drinking beer and eating wings, but I decided to push the envelope. If I hadn't gone, I would have missed the disco version of Gordon Lightfoot's "If You Could Read My Mind." Priceless.
It's good to be back.
Now that I'm back in the real world, I have no choice but to run around like a madwoman as I sandwich buying forays between work and and other activities. Today I found myself tooling around Target, lost in my usual protective fog. "Patricia," said a woman coming toward me. She identified herself in case I didn't remember her, which was good because I was experiencing one of those I-know-you-but-have-no-idea-from-where moments. It was Kelly, Mark's kindergarten teacher. The odd thing about this is that Mark attended kindergarten in Costa Rica. Kelly's originally from Rhode Island and I'd actually seen her a few years ago at a get-together arranged by the visiting former director of the Costa Rica preschool, but that's another story.
Time flies at warp speed. Kelly's now married and has children of her own; Mark's a senior in high school. Kelly asked after my health and complimented my appearance. I'm used to people expressing shock that I'm not only still standing, but have a full head of hair and actually look pretty good for someone who's been through the medical wringer. I suppose it is pretty amazing.
So, I had a productive morning at work, managed a little shopping without cracking, and am now energetically plotting my next moves. All this on top of going out last night. That's right, we went to a chicken wing competition in Providence at my usual bedtime. Friends of ours who were entered in the wing-off asked us to come and cast our votes. Normally, I'd politely shrug off a Monday night invitation to sit at a bar drinking beer and eating wings, but I decided to push the envelope. If I hadn't gone, I would have missed the disco version of Gordon Lightfoot's "If You Could Read My Mind." Priceless.
It's good to be back.
Friday, December 5, 2008
Leukemia of the Mind
It's possibly a record: I haven't posted here in over two weeks. I could blame Thanksgiving-related activities or the yard clean-up or blogging malaise, but the truth is simpler and better: I have nothing leukemia-related to report.
That's not to say I haven't had neurotic episodes here and there. Last week, I almost convinced myself that leukemia was making a beachhead in my mouth. You don't want to know that the disease can appear in your gums, and I'm not here to tell you this not-so-fun fact. I'll just mention that I noticed a few sores around my gumline and jumped to the worst conclusion possible.
Turns out I had a benign condition called gingivitis. It seems that the free CVS toothpaste I've been using does a poor job with tartar-control. That's what the dental hygenist told me yesterday.
The only leukemia I have right now resides in my hyperactive imagination. And that's where it's staying.
That's not to say I haven't had neurotic episodes here and there. Last week, I almost convinced myself that leukemia was making a beachhead in my mouth. You don't want to know that the disease can appear in your gums, and I'm not here to tell you this not-so-fun fact. I'll just mention that I noticed a few sores around my gumline and jumped to the worst conclusion possible.
Turns out I had a benign condition called gingivitis. It seems that the free CVS toothpaste I've been using does a poor job with tartar-control. That's what the dental hygenist told me yesterday.
The only leukemia I have right now resides in my hyperactive imagination. And that's where it's staying.
Thursday, November 20, 2008
Too Much About Leukemia
I listened to the Leukemia & Lymphoma Society's telephone education program yesterday entitled "Acute Myelogenous Leukemia: Understanding Current and Emerging Therapies." Dr. Appelbaum of the Fred Hutchinson Cancer Research Center was the featured speaker. Listeners were able to ask questions at the end of his remarks.
What I learned from the program is that I know too much about leukemia. I've been reluctantly studying it for over two and a half years and have become something of a lay expert. I say this because none of the information about leukemia therapies was new to me. I hung up during the question and answer session because the questions seemed so basic.
Sadly, not much new has emerged in the time I've been a student of leukemia. The initial treatment protocol remains more or less the same. It's clear that researchers seek better outcome predictability so that patients and their doctors can make better choices about when to go the transplant route. Right now, if you fall into the intermediate risk category (I did), it's a crap shoot as to whether you should do chemo alone or proceed directly to transplant. Dr. Appelbaum stressed that patients should have adequate cytogenetic testing on their initial bone marrow sample to gather as much information as possible relating to relapse risk. Unfortunately for patients and caregivers listening to this tele-conference, the horse has already left the barn. Your tissue was either properly tested or it wasn't, and it's too late to do anything about it now. Where you are diagnosed often determines whether you receive state-of-the-art testing. Having an oncologist who keeps up with the latest research will also impact your testing and treatment.
My advice to anyone recently diagnosed with AML is to educate yourself and ask questions. Make sure every test available is performed on your leukemic cells. This will give you and your doctor the best information as to what treatment plan is your best option. Not all treatment is equal.
It's your life, so fight for it.
What I learned from the program is that I know too much about leukemia. I've been reluctantly studying it for over two and a half years and have become something of a lay expert. I say this because none of the information about leukemia therapies was new to me. I hung up during the question and answer session because the questions seemed so basic.
Sadly, not much new has emerged in the time I've been a student of leukemia. The initial treatment protocol remains more or less the same. It's clear that researchers seek better outcome predictability so that patients and their doctors can make better choices about when to go the transplant route. Right now, if you fall into the intermediate risk category (I did), it's a crap shoot as to whether you should do chemo alone or proceed directly to transplant. Dr. Appelbaum stressed that patients should have adequate cytogenetic testing on their initial bone marrow sample to gather as much information as possible relating to relapse risk. Unfortunately for patients and caregivers listening to this tele-conference, the horse has already left the barn. Your tissue was either properly tested or it wasn't, and it's too late to do anything about it now. Where you are diagnosed often determines whether you receive state-of-the-art testing. Having an oncologist who keeps up with the latest research will also impact your testing and treatment.
My advice to anyone recently diagnosed with AML is to educate yourself and ask questions. Make sure every test available is performed on your leukemic cells. This will give you and your doctor the best information as to what treatment plan is your best option. Not all treatment is equal.
It's your life, so fight for it.
Wednesday, November 12, 2008
Crumbling Infrastructure
I had a DEXA scan recently to check for bone loss in my spine and hips. The chemotherapy I endured in May 2007 plunged me into menopause and may have been a contributing factor to my newly diagnosed osteoporosis. Yes, my bones, particularly my spine, are deteriorating.
While this news comes as no surprise (I am after all 54), my transplant doctor's recommendation to begin hormone replacement therapy (HRT) on top of a bone-building med gave me pause. I'd thought my running would protect me from bone loss. I had this crazy notion that drinking a cow's-worth of milk every day would fill in the potholes. Maybe I'd be a pile of dust by now if I hadn't been doing any weight-bearing exercise and consuming a fair amount of calcium. What shocked me though was the HRT. Wouldn't that increase my risk of developing cancer? I've been down that bumpy road and couldn't imagine taking a drug that might steer me down it again.
My doctor explained that while there is some evidence that HRT slightly increases the risk of breast and ovarian cancers, the risk of me suffering spinal fractures just by sneezing was greater and more pressing. Did I want to be the Incredible Shrinking Woman, or possibly develop a dowager's hump? Well, no. But I had been looking forward to finally being drug-free after my latest clinic visit, when I eagerly anticipated being cleared to stop the preventative meds I've been on since transplant.
So it's off two drugs, on two more. I chose the lesser of two evils, something I've grown accustomed to doing on this crushing journey. Fix the immediate problem, and deal with the consequences when or if any occur.
In the words of the Rolling Stones, what a drag it is getting old. I have to keep reminding myself that getting old has its benefits, the main one being that you're not dead yet.
Des bones are gonna rise again.
While this news comes as no surprise (I am after all 54), my transplant doctor's recommendation to begin hormone replacement therapy (HRT) on top of a bone-building med gave me pause. I'd thought my running would protect me from bone loss. I had this crazy notion that drinking a cow's-worth of milk every day would fill in the potholes. Maybe I'd be a pile of dust by now if I hadn't been doing any weight-bearing exercise and consuming a fair amount of calcium. What shocked me though was the HRT. Wouldn't that increase my risk of developing cancer? I've been down that bumpy road and couldn't imagine taking a drug that might steer me down it again.
My doctor explained that while there is some evidence that HRT slightly increases the risk of breast and ovarian cancers, the risk of me suffering spinal fractures just by sneezing was greater and more pressing. Did I want to be the Incredible Shrinking Woman, or possibly develop a dowager's hump? Well, no. But I had been looking forward to finally being drug-free after my latest clinic visit, when I eagerly anticipated being cleared to stop the preventative meds I've been on since transplant.
So it's off two drugs, on two more. I chose the lesser of two evils, something I've grown accustomed to doing on this crushing journey. Fix the immediate problem, and deal with the consequences when or if any occur.
In the words of the Rolling Stones, what a drag it is getting old. I have to keep reminding myself that getting old has its benefits, the main one being that you're not dead yet.
Des bones are gonna rise again.
Thursday, November 6, 2008
"The Exquisite Realization of Health"
Walt Whitman celebrates body and soul in his poem I sing the body electric. My soul was feeling fine post-election. I confirmed my physical health yesterday at my check-up at Dana Farber.
My blood is normal. My next check-up is in February. Yes, February.
Four immunizations, two in each arm, was my reward for good health. I had a nasty reaction to one or more of them. Dizziness and nausea drove me back to bed this morning. I'm feeling a little better now.
There's nothing like illness to make you appreciate wellness.
My blood is normal. My next check-up is in February. Yes, February.
Four immunizations, two in each arm, was my reward for good health. I had a nasty reaction to one or more of them. Dizziness and nausea drove me back to bed this morning. I'm feeling a little better now.
There's nothing like illness to make you appreciate wellness.
Tuesday, November 4, 2008
What, Me Worry?
It's been nine weeks since I last went to the clinic to have my blood tested. Nine weeks without checking to make sure my blood cells are behaving. One bad apple can spoil the whole bunch.
I've been dragging around my insecurity blanket these last couple of weeks. Some days I'm overwhelmed, other days I'm fine. On bad days, I crawl under the blanket and curse the darkness. On better days, I challenge myself to "accomplish" things, ticking off tasks with a vengeance.
When I'm not worrying about blood counts, I fret about when my son will get his act together and work on his college applications. Half his classmates are applying Early Decision, which means they've already submitted an application to their first-choice school. I'm wondering if Mark can even meet the Late Decision deadline.
Surprisingly, I'm not wasting an ounce of anxiety on our battered personal finances. We'll just plan on dying sooner rather than later.
Tomorrow morning I'll be handed a sheet of paper with numbers on it. Will they be winners? It's nerve-wracking to play this lottery, but play it I must.
I've been dragging around my insecurity blanket these last couple of weeks. Some days I'm overwhelmed, other days I'm fine. On bad days, I crawl under the blanket and curse the darkness. On better days, I challenge myself to "accomplish" things, ticking off tasks with a vengeance.
When I'm not worrying about blood counts, I fret about when my son will get his act together and work on his college applications. Half his classmates are applying Early Decision, which means they've already submitted an application to their first-choice school. I'm wondering if Mark can even meet the Late Decision deadline.
Surprisingly, I'm not wasting an ounce of anxiety on our battered personal finances. We'll just plan on dying sooner rather than later.
Tomorrow morning I'll be handed a sheet of paper with numbers on it. Will they be winners? It's nerve-wracking to play this lottery, but play it I must.
Friday, October 31, 2008
Victory Ride
My friend Karen joined Team in Training last summer to raise money for the Leukemia and Lymphoma Society while training for a century ride (100 miles). Here's a note I got from Karen the other day:
The Intracoastal Waterway Century (100 miles) ride was last Sunday - what a beautiful day it was! Sunny and cool with lots of water views. The event had about 500 riders of which 83 were TNT members from around Florida. Starting in Cocoa we headed north up to Titusville, over the water to the space center area and then southward to the end of Merritt Island, passing back to the mainland, and then north again back to the beginning. It was rather windy in the northbound direction, adding an extra challenge; but all for a very important cause. All in all the TNT team raised over $173,000, so thank you again for your contribution to The Leukemia & Lymphoma Society (LLS). Contributions to the LLS have helped fund research for new drugs like Gleevec which is used by one of our team members, making it possible for him to train and complete the century ride!
Karen rode in memory of a friend who died of Hodgkins lymphoma many years ago, and in honor of me and my battle with leukemia. Thank you Karen and all Team in Training participants who help raise money to fund the war on blood cancers.
The Intracoastal Waterway Century (100 miles) ride was last Sunday - what a beautiful day it was! Sunny and cool with lots of water views. The event had about 500 riders of which 83 were TNT members from around Florida. Starting in Cocoa we headed north up to Titusville, over the water to the space center area and then southward to the end of Merritt Island, passing back to the mainland, and then north again back to the beginning. It was rather windy in the northbound direction, adding an extra challenge; but all for a very important cause. All in all the TNT team raised over $173,000, so thank you again for your contribution to The Leukemia & Lymphoma Society (LLS). Contributions to the LLS have helped fund research for new drugs like Gleevec which is used by one of our team members, making it possible for him to train and complete the century ride!
Karen rode in memory of a friend who died of Hodgkins lymphoma many years ago, and in honor of me and my battle with leukemia. Thank you Karen and all Team in Training participants who help raise money to fund the war on blood cancers.
Monday, October 27, 2008
The Dark Place
I made an unscheduled visit to the Dark Place yesterday, a place I hadn't been to in quite some time. Some of you know this gloomy territory all too well: extremely negative emotions are nurtured and amplified; fear, anger and resignation rule.
I woke up with aching muscles on top of the usual creaking joints, but otherwise felt okay. For some reason, my thoughts went running toward the door posted DANGER DO NOT ENTER. Enter I did.
I tried to recall what my symptoms had been when I was first diagnosed with leukemia, and then again when I relapsed. I never had any of the classic signs, just a vague sense that maybe things weren't 100%. Unfortunately, anything short of perfect health falls into this category.
Some serious digestive track issues suddenly hit me and jolted me out of my funk. The thought that a stomach virus of some sort could explain the aches and general malaise I was experiencing made me almost gleeful. Was this merely more fallout from last weekend's germfest? I liked this explanation, and grasped at it so tightly my hand cramped.
Another thing I liked: chatting with fellow veterans Dori and Ann. Dori's husband Jim called just as I was trying to rally myself for a trip to the supermarket. Jim authors the blog Run for Dori and recently participated in the Nike Women's Marathon for Team in Training. Dori had a transplant for AML one month after I did and knows well the hellish physical and mental paths traveled by leukemia patients. Later in the afternoon I spoke with Ann of Ann's Fight. She's coping with the challenges of transplant #2 and knows the Dark Place well. I was easily able to share my thoughts with her, and she pulled me back into a better place.
In my next life, I plan to be a dog. Dogs live in the moment and don't know from dark places.
I woke up with aching muscles on top of the usual creaking joints, but otherwise felt okay. For some reason, my thoughts went running toward the door posted DANGER DO NOT ENTER. Enter I did.
I tried to recall what my symptoms had been when I was first diagnosed with leukemia, and then again when I relapsed. I never had any of the classic signs, just a vague sense that maybe things weren't 100%. Unfortunately, anything short of perfect health falls into this category.
Some serious digestive track issues suddenly hit me and jolted me out of my funk. The thought that a stomach virus of some sort could explain the aches and general malaise I was experiencing made me almost gleeful. Was this merely more fallout from last weekend's germfest? I liked this explanation, and grasped at it so tightly my hand cramped.
Another thing I liked: chatting with fellow veterans Dori and Ann. Dori's husband Jim called just as I was trying to rally myself for a trip to the supermarket. Jim authors the blog Run for Dori and recently participated in the Nike Women's Marathon for Team in Training. Dori had a transplant for AML one month after I did and knows well the hellish physical and mental paths traveled by leukemia patients. Later in the afternoon I spoke with Ann of Ann's Fight. She's coping with the challenges of transplant #2 and knows the Dark Place well. I was easily able to share my thoughts with her, and she pulled me back into a better place.
In my next life, I plan to be a dog. Dogs live in the moment and don't know from dark places.
Friday, October 24, 2008
Virus Vanquished
By Monday night, the first symptoms of a cold laid me low. Tuesday was a blur, and I canceled all plans on Wednesday. By Thursday, I felt much better. Today I ran 2 miles.
I've had worse colds.
My hybrid immune system appears to be functioning fairly well. According to my doctor, dual cord engraftment might ultimately yield stronger overall immunity, a 1-2 punch against invaders.
Hey, T-cells. Make sure you're keeping an eye on the enemy from within, especially any cells cloning out of control. That's what I'm paying you for.
Here's a family photo from the weekend:
I've had worse colds.
My hybrid immune system appears to be functioning fairly well. According to my doctor, dual cord engraftment might ultimately yield stronger overall immunity, a 1-2 punch against invaders.
Hey, T-cells. Make sure you're keeping an eye on the enemy from within, especially any cells cloning out of control. That's what I'm paying you for.
Here's a family photo from the weekend:
Monday, October 20, 2008
Killing Me Softly
The wedding weekend has come and gone and I'm still standing. When my doctor approved this junket, he warned me to be very careful around people. How careful can you be when you're seeing relatives and family friends you haven't seen in years? Not very. I was crazy to think I could engage in safe social intercourse.
It was an orgy of personal contact. I was hugged and kissed and spoken to up close. I found myself in hot rooms with many bodies. My only prophylaxis was to practice shallow breathing, inhaling so shallowly I felt dizzy. I'm sure my doctor would classify this as high risk behavior.
I was told over and over that I look fantastic, something I began to see as a left-handed compliment of sorts. Did I look good considering what I've been through (a comparatively low bar)? I began joking with my husband that the unspoken part of the compliment might be "for someone who'd had one foot in the grave."
I'm being uncharitable. Most of these people would have paid me the same compliment even if I hadn't been to hell and back. It's just something you say, a matter of normal niceties, except that I'm not normal.
Right after the wedding (which was lovely, by the way), I felt truly ill. I think it was a combination of poor food choice, anxiety and exhaustion. It was also the first time I've worn pantyhose in three years.
It'll be a few days before I'll know if my behavior has any negative consequences. In the meantime, I'm remembering how good I looked.
It was an orgy of personal contact. I was hugged and kissed and spoken to up close. I found myself in hot rooms with many bodies. My only prophylaxis was to practice shallow breathing, inhaling so shallowly I felt dizzy. I'm sure my doctor would classify this as high risk behavior.
I was told over and over that I look fantastic, something I began to see as a left-handed compliment of sorts. Did I look good considering what I've been through (a comparatively low bar)? I began joking with my husband that the unspoken part of the compliment might be "for someone who'd had one foot in the grave."
I'm being uncharitable. Most of these people would have paid me the same compliment even if I hadn't been to hell and back. It's just something you say, a matter of normal niceties, except that I'm not normal.
Right after the wedding (which was lovely, by the way), I felt truly ill. I think it was a combination of poor food choice, anxiety and exhaustion. It was also the first time I've worn pantyhose in three years.
It'll be a few days before I'll know if my behavior has any negative consequences. In the meantime, I'm remembering how good I looked.
Friday, October 17, 2008
Fear of Flying
I've always hated flying. Every time I board an airplane I envision dying in a crash. During college I developed such an irrational fear of flying that I subjected myself to a 27-hour train ride from New York to Florida. There's nothing like torture to make you brave enough to face your fear.
I've faced a fair amount of fear throughout the course of this leukemia saga, much of it quite rational. The odds have been crappy; death has been a statistically significant possibility. Can I still be afraid of of something like flying?
Yes, I can. My nephew's getting married in Washington, DC this weekend and I'm flying there tomorrow with my family. It's not that I'm worried about the plane going down. I'm afraid of being in a small space with a lot of strangers, breathing and re-breathing the communal air. My immune system may crash and burn.
Maybe I should wear a mask, the heavy-duty kind that simulates the sensation of being buried alive or smothered with a wet blanket. Maybe I'll bring a mask with me to the airport and whip it out if I feel threatened.
I'm probably over-reacting to the airplane thing. I mean, I'll be spending 24 hours or so inhaling the air in our nation's capital. Is there anything more toxic than that?
I've faced a fair amount of fear throughout the course of this leukemia saga, much of it quite rational. The odds have been crappy; death has been a statistically significant possibility. Can I still be afraid of of something like flying?
Yes, I can. My nephew's getting married in Washington, DC this weekend and I'm flying there tomorrow with my family. It's not that I'm worried about the plane going down. I'm afraid of being in a small space with a lot of strangers, breathing and re-breathing the communal air. My immune system may crash and burn.
Maybe I should wear a mask, the heavy-duty kind that simulates the sensation of being buried alive or smothered with a wet blanket. Maybe I'll bring a mask with me to the airport and whip it out if I feel threatened.
I'm probably over-reacting to the airplane thing. I mean, I'll be spending 24 hours or so inhaling the air in our nation's capital. Is there anything more toxic than that?
Monday, October 13, 2008
Testing 1, 2, 3, 4
I spent much of Saturday in Van Cortlandt Park watching my boys compete in one of the largest cross-country meets in the world. Over 12,000 kids ran the venerable 2.5 mile course, a course my grandfather competed on in the 1920's. Van Cordlandt Park is located in the Bronx, that big bad borough of New York City just north of Manhattan.
I faced a number of hazards on this junket, the first of which involved traffic and parking. My husband, a native New Yorker, switches from mild mannered chauffeur to crazed taxi driver the moment we cross the metropolitan border. Trust me; you do not want to be in the vehicle when he's driving on the Brooklyn-Queens Expressway. Arriving (safely) at our destination, the next trial was finding a parking spot. We found one several blocks away, technically illegal but we took a chance we wouldn't be towed, and we weren't.
Wanting to avoid the porta-potties in the park, we ducked into a Burger King to use the restrooms. The place was packed with kids who'd already run, and there was a long line outside the ladies room. Clutching my bottle of Purell, I got on line and hoped for the best. Public bathrooms are high on the list of places I try to avoid.
We entered the park and quickly saw that without mobile devices, we wouldn't find our sons' team. How did people manage to locate each other in the olden days? Before we could find them, we had to walk over to the train station to meet our daughter who'd caught a ride from school to New York the night before. 242nd Street is the last stop on the #1 Train, and the subway line is elevated in this neighborhood, perched high above the busy thoroughfare below. We spent the next half hour waiting for Mariel, waves of humanity washing over us. Normally (and idiotically, I might add), I try to refrain from inhaling in crowds. This became harder to do as more and more people swirled around us.
Mariel finally arrived, and we got some slices at the pizza place below the station. Subway stop pizza is notoriously good. We ate standing outside, but if we were (still) real New Yorkers, we would've walked while eating. Remember John Travolta in "Saturday Night Fever?"
We hung out in the park for the next few hours waiting for the races to go off. The sun is my enemy so I had to apply sunscreen before venturing out of the shade to watch my sons run. The area near the finish line was packed with people. I had no choice but to become one with the sea of strangers, not something I should be doing, but that's where I found myself.
I was exposed to thousands of people, a mother lode of microbes. This was the biggest test my babyish immune system has faced so far, on par with a one-year old toddling around at rush hour in Grand Central Station. I appear to be unscathed.
Please don't mention this to my oncologist.
I faced a number of hazards on this junket, the first of which involved traffic and parking. My husband, a native New Yorker, switches from mild mannered chauffeur to crazed taxi driver the moment we cross the metropolitan border. Trust me; you do not want to be in the vehicle when he's driving on the Brooklyn-Queens Expressway. Arriving (safely) at our destination, the next trial was finding a parking spot. We found one several blocks away, technically illegal but we took a chance we wouldn't be towed, and we weren't.
Wanting to avoid the porta-potties in the park, we ducked into a Burger King to use the restrooms. The place was packed with kids who'd already run, and there was a long line outside the ladies room. Clutching my bottle of Purell, I got on line and hoped for the best. Public bathrooms are high on the list of places I try to avoid.
We entered the park and quickly saw that without mobile devices, we wouldn't find our sons' team. How did people manage to locate each other in the olden days? Before we could find them, we had to walk over to the train station to meet our daughter who'd caught a ride from school to New York the night before. 242nd Street is the last stop on the #1 Train, and the subway line is elevated in this neighborhood, perched high above the busy thoroughfare below. We spent the next half hour waiting for Mariel, waves of humanity washing over us. Normally (and idiotically, I might add), I try to refrain from inhaling in crowds. This became harder to do as more and more people swirled around us.
Mariel finally arrived, and we got some slices at the pizza place below the station. Subway stop pizza is notoriously good. We ate standing outside, but if we were (still) real New Yorkers, we would've walked while eating. Remember John Travolta in "Saturday Night Fever?"
We hung out in the park for the next few hours waiting for the races to go off. The sun is my enemy so I had to apply sunscreen before venturing out of the shade to watch my sons run. The area near the finish line was packed with people. I had no choice but to become one with the sea of strangers, not something I should be doing, but that's where I found myself.
I was exposed to thousands of people, a mother lode of microbes. This was the biggest test my babyish immune system has faced so far, on par with a one-year old toddling around at rush hour in Grand Central Station. I appear to be unscathed.
Please don't mention this to my oncologist.
Wednesday, October 1, 2008
"Emancipate yourself from mental slavery ... "
"... None but ourselves can free our minds."
Bob Marley, Redemption Song
It's the first Wednesday of the month and I don't have to drive up to Boston for my appointment at the Dana-Farber clinic. My next appointment isn't until the first Wednesday in November. That means I'll go two months without a needle being stuck in my arm, blood extracted and tested for signs of problems. This is a milestone. Even after my first remission was firmly established I had to have labs done once a month. This feels a lot like freedom.
Freedom has been on display in other ways in the past couple of weeks. I'm free to be around more people, free to eat just about anything besides undercooked hamburger, free to commune more with my dogs and with nature. But the true freedom is what you're thinking and feeling. When anxiety feeds on your thoughts, it's as though you're chained to the floor of a dark dank cell. The "my counts are good and I feel fine and the doc says I'm doing well but I could relapse tomorrow" line of thinking weighs you down, dulls your senses and throws away the key.
I've realized that there have been entire days in the past two weeks in which I haven't thought about leukemia even once. I'm starting to feel someone else had that disease, not me. Instead of being perpetually stuck in the now, I'm beginning to look to the future, thinking I just might be in it.
Bob Marley, Redemption Song
It's the first Wednesday of the month and I don't have to drive up to Boston for my appointment at the Dana-Farber clinic. My next appointment isn't until the first Wednesday in November. That means I'll go two months without a needle being stuck in my arm, blood extracted and tested for signs of problems. This is a milestone. Even after my first remission was firmly established I had to have labs done once a month. This feels a lot like freedom.
Freedom has been on display in other ways in the past couple of weeks. I'm free to be around more people, free to eat just about anything besides undercooked hamburger, free to commune more with my dogs and with nature. But the true freedom is what you're thinking and feeling. When anxiety feeds on your thoughts, it's as though you're chained to the floor of a dark dank cell. The "my counts are good and I feel fine and the doc says I'm doing well but I could relapse tomorrow" line of thinking weighs you down, dulls your senses and throws away the key.
I've realized that there have been entire days in the past two weeks in which I haven't thought about leukemia even once. I'm starting to feel someone else had that disease, not me. Instead of being perpetually stuck in the now, I'm beginning to look to the future, thinking I just might be in it.
Wednesday, September 24, 2008
Life's Blood
I just got back from a trip to the main branch of the Providence Post Office, the first automated post office in the world. I wasn't there to mail a letter, however. I was there to listen to a speaker from the Rhode Island Blood Center encourage post office employees to donate blood. Several months ago, I volunteered to speak on behalf of the RIBC, and today I had a chance to observe a woman tell her story about why blood donors are heroes.
Nine years ago, the speaker's daughter was diagnosed with Aplastic Anemia , a rare blood disorder. This 15-year old girl received hundreds of units of red blood cells and platelets during her treatment. She subsequentally underwent a bone marrow transplant, with her 4-year old brother as her donor. One reason this young lady is alive today is that ordinary Rhode Islanders took the time to give blood at work, at school, in their communities, and at the RIBC itself. My husband is a long-time donor. He started giving blood at the RIBC (Warwick branch) years before I was diagnosed with leukemia. Blood drives are sponsored by the West Warwick Public Library at least three times a year. I mention this because I'm a proud employee of the institution.
I'm ready to tell my personal story, the one in which everyday heroes donated their blood so it was on hand when mine was failing me. If my tale can inspire people to donate a small bag of life-saving fluid, I'll feel really really good.
Imagine how the people who get those bags will feel.
Nine years ago, the speaker's daughter was diagnosed with Aplastic Anemia , a rare blood disorder. This 15-year old girl received hundreds of units of red blood cells and platelets during her treatment. She subsequentally underwent a bone marrow transplant, with her 4-year old brother as her donor. One reason this young lady is alive today is that ordinary Rhode Islanders took the time to give blood at work, at school, in their communities, and at the RIBC itself. My husband is a long-time donor. He started giving blood at the RIBC (Warwick branch) years before I was diagnosed with leukemia. Blood drives are sponsored by the West Warwick Public Library at least three times a year. I mention this because I'm a proud employee of the institution.
I'm ready to tell my personal story, the one in which everyday heroes donated their blood so it was on hand when mine was failing me. If my tale can inspire people to donate a small bag of life-saving fluid, I'll feel really really good.
Imagine how the people who get those bags will feel.
Sunday, September 21, 2008
I Dedicate This Race
Today's the big race I've been training for.
I began training a year ago in a bed in a Boston Hospital, connected by a jumble of snaking tubes to an I.V. pole, racing nowhere. I was lamenting how I was missing the race I'd done the year before, the one 6 months after my leukemia diagnosis. Mind racing with possibilities, I vowed to run the annual 5k next year.
Next year is here.
I dedicate this race (I should say slightly-faster-than-normal jog, because the only part of me likely to be racing is my heart) to everyone in Leukemia world: those currently undergoing or recovering from treatment, and their caretakers; the medical professionals who provide the weapons with which to fight; the walking and slightly wounded survivors.
Running through the streets of Providence today, I'll be thinking especially about those of you in the hospital counting the days since transplant and waiting for your moment in the sun.
I began training a year ago in a bed in a Boston Hospital, connected by a jumble of snaking tubes to an I.V. pole, racing nowhere. I was lamenting how I was missing the race I'd done the year before, the one 6 months after my leukemia diagnosis. Mind racing with possibilities, I vowed to run the annual 5k next year.
Next year is here.
I dedicate this race (I should say slightly-faster-than-normal jog, because the only part of me likely to be racing is my heart) to everyone in Leukemia world: those currently undergoing or recovering from treatment, and their caretakers; the medical professionals who provide the weapons with which to fight; the walking and slightly wounded survivors.
Running through the streets of Providence today, I'll be thinking especially about those of you in the hospital counting the days since transplant and waiting for your moment in the sun.
Monday, September 15, 2008
Really Slow Dancing
That's me and my husband dancing at the wedding we went to on Saturday. I wish I had a picture of me asleep in the chair about an hour later. The event was held in a mansion, so there was no dearth of comfy wing chairs to curl up in.
This is what I learned: you can dress up, apply make-up, make your hair poufy and even paint your fingernails, but as Cinderella discovered, time always catches up with you. I performed admirably for the first few hours, and then suddenly felt all the life in me slip away. You know how your lap top goes black while you're in mid-sentence, or a cellphone conversation is suddenly one-way? That was me, completely inert, my battery charger unavailable. This isn't surprising based on what I've been through, but it's still depressing to face your limitations.
We have another wedding next month. It's an afternoon affair, so I should do better. I've always been a morning person. That's more true than ever.
Friday, September 12, 2008
Spotless
Unlike my house, my bone marrow is "spotless." That's the word my transplant doctor chose to describe the results of last week's biospy. I'm 99% donor in the marrow, and 97% in the peripheral blood. The Colorado cord is still predominating, but the Australian cord shows no signs of backing down. T-cell analysis shows some of mine are still hanging around (18%), but the doctor says that's not unexpected with cbt's.
My immune system is slowly rebuilding. The most recent CD4 count is 355, up a hundred or so since last checked. The CD4 indicates immune system strength. When it reaches 500, I'll be in normal range. For now, I still have to exercise caution, but I can ease up a little bit.
Tomorrow, I'm going to a wedding in Wilmington, Deleware. I promise not to dance on the tables.
My immune system is slowly rebuilding. The most recent CD4 count is 355, up a hundred or so since last checked. The CD4 indicates immune system strength. When it reaches 500, I'll be in normal range. For now, I still have to exercise caution, but I can ease up a little bit.
Tomorrow, I'm going to a wedding in Wilmington, Deleware. I promise not to dance on the tables.
Sunday, September 7, 2008
They Say It's My Birthday
Being born is no picnic. I can attest to that because a year ago, I experienced a miraculous new birth day. I guess it was technically a virgin birth, too, but forgive me if I don't wade into theological waters.
On September 7, 2007, two bags of baby stem cells were infused into my bloodstream. Those cells did their job apparently, and here I still am. Believe me, a year ago today, I was barely existing. Today, I went for a 3-mile run, had breakfast with family and friends, and continued planting in my front garden, which is really just playing in the dirt, something my one-year old self naturally enjoys. Last night, my husband and friends threw a surprise party for me, complete with cake and a candle. I think there was supposed to be a ballon, but I've yet to receive it. Perhaps they realized it could be a choking hazard.
As grateful as I am to be here celebrating one year as a mixed-blood person, I think about two dear friends who've walked down the path I'm on: Ann, who had her own rebirthday yesterday, and Leah, who won't celebrate her rebirthday but joins me on mine.
On September 7, 2007, two bags of baby stem cells were infused into my bloodstream. Those cells did their job apparently, and here I still am. Believe me, a year ago today, I was barely existing. Today, I went for a 3-mile run, had breakfast with family and friends, and continued planting in my front garden, which is really just playing in the dirt, something my one-year old self naturally enjoys. Last night, my husband and friends threw a surprise party for me, complete with cake and a candle. I think there was supposed to be a ballon, but I've yet to receive it. Perhaps they realized it could be a choking hazard.
As grateful as I am to be here celebrating one year as a mixed-blood person, I think about two dear friends who've walked down the path I'm on: Ann, who had her own rebirthday yesterday, and Leah, who won't celebrate her rebirthday but joins me on mine.
Wednesday, September 3, 2008
One-Year Post Transplant
It's not officially my re-birthday until September 7, but today I had my one-year check-up, and except for the many holes I had poked in my body, I'm doing very well. My counts are all normal. My doctor, who's as buttoned-up and professional as they come, actually gave me a hug. I'd have preferred a deep tissue massage, but I settled for what I hope is my final bone marrow biospy, #14.
In addition to the lab extracting 16 vials of blood, I was given 3 immunizations. I ache all over, but I intend to go outside and garden anyway, because the doctor says I CAN!!!
I will report the results of the biopsy here in 10 days or so. In the meantime, come see me over at Word in the Woods
In addition to the lab extracting 16 vials of blood, I was given 3 immunizations. I ache all over, but I intend to go outside and garden anyway, because the doctor says I CAN!!!
I will report the results of the biopsy here in 10 days or so. In the meantime, come see me over at Word in the Woods
Monday, September 1, 2008
You're cordially invited
to join me as I birth my new blog. Fittingly or coincidentally, depending upon your world view, it's Labor Day in the U.S. of A.
The Plog continues, although I expect to post more sporadically than I have in the past year.
Word in the Woods awaits you.
The Plog continues, although I expect to post more sporadically than I have in the past year.
Word in the Woods awaits you.
Thursday, August 28, 2008
The Plog Unplugged
On August 26, The Plog celebrated its first birthday. A lot has happened in the past year, on so many levels. Thank you for allowing me to share my thoughts, feelings and occasional insights with you, my faithful readers. Writing my story has been therapeutic; your feedback in the form of posted comments, emails, phone calls or fireside/poolside chats has had a tremendous impact on the healing process. Medical professionals cured me on a cellular level. You’ve nursed me through the emotional peaks and troughs.
Next week, I have my one-year post-transplant check-up. After they drain me of what will seem like half my blood, a few vials of bone marrow will be extracted and analyzed. In mid-September, we should know the results of US vs. Australia in the 2008 Chimerism Cup Classic. I’ll also be receiving my first round of immunizations for various childhood diseases. All those years spent patiently and prudently acquiring immunity to nasty illnesses was rendered pointless by the pre-transplant chemo.
The Plog will not so much be unplugged as suspended in time. It was my year of living dangerously, and I prefer to keep those memories stashed in this virtual urn. I might check in from time to time to post medical updates or pithy comments. Frankly, I hope I don’t have to.
Lest you mist up at the idea that you’ll no longer be able to peer into my daily thoughts, activities, unsolicited opinions and pronouncements, despair not. I am pleased to inform you that I will be rolling out (tah-dah!) a new blog, possibly as early as next week. The bombast will not end, I promise you.
As soon as I write my first post, I’ll invite you to join me on my new chunk of cyberspace where I plan to blather about diverse topics including but not limited to books, running, language, parenting, food, current events, poetry, bouviers, and whatever’s stuck in my craw at any given moment. I hope to include links to some of my published work, if I can figure how to do the dang thing.
Stay tuned …
Next week, I have my one-year post-transplant check-up. After they drain me of what will seem like half my blood, a few vials of bone marrow will be extracted and analyzed. In mid-September, we should know the results of US vs. Australia in the 2008 Chimerism Cup Classic. I’ll also be receiving my first round of immunizations for various childhood diseases. All those years spent patiently and prudently acquiring immunity to nasty illnesses was rendered pointless by the pre-transplant chemo.
The Plog will not so much be unplugged as suspended in time. It was my year of living dangerously, and I prefer to keep those memories stashed in this virtual urn. I might check in from time to time to post medical updates or pithy comments. Frankly, I hope I don’t have to.
Lest you mist up at the idea that you’ll no longer be able to peer into my daily thoughts, activities, unsolicited opinions and pronouncements, despair not. I am pleased to inform you that I will be rolling out (tah-dah!) a new blog, possibly as early as next week. The bombast will not end, I promise you.
As soon as I write my first post, I’ll invite you to join me on my new chunk of cyberspace where I plan to blather about diverse topics including but not limited to books, running, language, parenting, food, current events, poetry, bouviers, and whatever’s stuck in my craw at any given moment. I hope to include links to some of my published work, if I can figure how to do the dang thing.
Stay tuned …
Monday, August 25, 2008
This whole leukemia business
can be dispiriting. I’ve been in it for nearly two and a half years. The best that can be said is that I’m still kicking.
On Saturday, we drove Mariel to Swarthmore College to begin her junior year. This involves driving through New Jersey, which begs the question, how does anybody live there? If you can call traveling at 20 miles an hour for what seems like eternity living. After hauling her stuff (including contraband kitty) to her room, and lunching with her roommate, we headed back onto the NJ Turnpike where we once again sat bumper to bumper, continuing into New York and over the Tappen Zee Bridge. New Jersey can’t even contain its traffic. The Tappen Zee bridge has a droll (to me) sign about a quarter way over the span that urges you to use the phone booth at the bridge’s center if you have doubts that life is worth living. I admit I was having black thoughts after lurching and sucking on fumes for hours. We stopped at a friends’ house in Larchmont for some much-needed rest. Just after midnight, we pulled into our driveway.
I was sad to see Mariel go, and sad to see she had not taken the destruction that is her room with her. It’s a classic example of a neatnik parent producing pigsty progeny. Sifting through the detritus she left behind, I unearthed a book by Junot Diaz. This made me think of Leah Ryan because she once wrote on my blog that Juno Diaz rocks, which if you’ve read his latest novel (The Brief Wondrous Life of Oscar Wao), you know he does. But thinking about Leah and her brief wondrous life made me sad. So did thinking about other people I know who are still sparring with the leukemia monster. The unnerving thing about the disease is that you have no idea if the bout’s over. You wait in the corner listening for the bell signifying yet another round. It may never ring, but you can never let down your guard.
The first anniversary of my transplant approaches. I am in a much better place than I was a year ago, but the toll has been steep. You keep saying you’re glad to be alive, but as time passes you think about what’s been lost. The emotional and financial burdens can be steep. You embrace life, but you can’t believe the sharp little knives that poke out and stick you.
See where bad traffic can lead?
On Saturday, we drove Mariel to Swarthmore College to begin her junior year. This involves driving through New Jersey, which begs the question, how does anybody live there? If you can call traveling at 20 miles an hour for what seems like eternity living. After hauling her stuff (including contraband kitty) to her room, and lunching with her roommate, we headed back onto the NJ Turnpike where we once again sat bumper to bumper, continuing into New York and over the Tappen Zee Bridge. New Jersey can’t even contain its traffic. The Tappen Zee bridge has a droll (to me) sign about a quarter way over the span that urges you to use the phone booth at the bridge’s center if you have doubts that life is worth living. I admit I was having black thoughts after lurching and sucking on fumes for hours. We stopped at a friends’ house in Larchmont for some much-needed rest. Just after midnight, we pulled into our driveway.
I was sad to see Mariel go, and sad to see she had not taken the destruction that is her room with her. It’s a classic example of a neatnik parent producing pigsty progeny. Sifting through the detritus she left behind, I unearthed a book by Junot Diaz. This made me think of Leah Ryan because she once wrote on my blog that Juno Diaz rocks, which if you’ve read his latest novel (The Brief Wondrous Life of Oscar Wao), you know he does. But thinking about Leah and her brief wondrous life made me sad. So did thinking about other people I know who are still sparring with the leukemia monster. The unnerving thing about the disease is that you have no idea if the bout’s over. You wait in the corner listening for the bell signifying yet another round. It may never ring, but you can never let down your guard.
The first anniversary of my transplant approaches. I am in a much better place than I was a year ago, but the toll has been steep. You keep saying you’re glad to be alive, but as time passes you think about what’s been lost. The emotional and financial burdens can be steep. You embrace life, but you can’t believe the sharp little knives that poke out and stick you.
See where bad traffic can lead?
Thursday, August 21, 2008
Beeyah Heeyah (Beer Here)
If you'd like to read something I wrote that has nothing to do with leukemia, see my article in today's Providence Journal.
Just for the record, it's Cracker Jack, singular. An editor changed it. Grr.
Just for the record, it's Cracker Jack, singular. An editor changed it. Grr.
Wednesday, August 20, 2008
Ch-Ch-Ch-Ch-Changes
I caught a glimpse of myself in the mirror this morning. It's been six weeks since I've had a haircut and it shows. I know, I know - I'm supposed to say I'm happy to have hair. Bald was not a bad look for me, except that it was accompanied by a wan complexion, raccoon eyes, and nausea-induced grimacing. When your hair reappears post-chemo, it seems like someone else's. For people with straight or wavy hair, it tends to come back very curly. Apparently, a mechanism in the hair follicle crimps each strand as it emerges. No one seems to know why chemo does this, which is amazing to me when you consider the complexities of other things we have a handle on, such as nuclear fission.
It's shocking to have one hair type your entire life and then presto change-o, you have another. My hair was basically straight with a hint of wave. Not any more. I keep it very short, but the top eventually shoots up in a mass of wild curls. Everyone says it looks great, but I'm unnerved by it. This morning my hair is defying gravity. I woke up as Don King, my hair impossibly molded into an Olympic torch. Don King uses a lot of product to get this effect. I don't.
Strange fascination, fascinating me.
It's shocking to have one hair type your entire life and then presto change-o, you have another. My hair was basically straight with a hint of wave. Not any more. I keep it very short, but the top eventually shoots up in a mass of wild curls. Everyone says it looks great, but I'm unnerved by it. This morning my hair is defying gravity. I woke up as Don King, my hair impossibly molded into an Olympic torch. Don King uses a lot of product to get this effect. I don't.
Strange fascination, fascinating me.
Monday, August 18, 2008
Why Blog About Cancer?
It's a daily reminder that none of us walks this road alone.
Leroy Sievers, 1955-2008
Journalist Leroy Sievers wrote a blog for NPR called My Cancer, one of six blogs I regularly follow in which cancer is the raison d'etre. On Friday, at age 53, Sievers died from colon cancer that had spread to multiple organs. He lived with cancer for 7 years and shared his journey in his blog for the last two. He wrote about his illness in a way that was extremely honest and at times humorous. He once mused about whether it paid to buy new clothes, given the fact that he might not get much wear from them. If you're living with cancer, this line of dark but practical thinking may be familiar. You're hesitant to give voice to it though because it would unnerve people. I know because I bought much-needed running shoes last month, and admitted to my husband only last week that I'd finally decided I was going to live long enough to justify the purchase.
Sievers stated that he believed his blog to be one of his greatest achievements. This is a man who's won many prizes and awards for journalistic excellence over the years. He was willing to reveal his sometimes painful thoughts publicly not just because his words inspired others living with cancer, but because it meant he didn't have to walk the cancer journey alone. We walked with him.
If Pulitzer Prizes are given for blogs, My Cancer certainly deserves to win one.
Leroy Sievers, 1955-2008
Journalist Leroy Sievers wrote a blog for NPR called My Cancer, one of six blogs I regularly follow in which cancer is the raison d'etre. On Friday, at age 53, Sievers died from colon cancer that had spread to multiple organs. He lived with cancer for 7 years and shared his journey in his blog for the last two. He wrote about his illness in a way that was extremely honest and at times humorous. He once mused about whether it paid to buy new clothes, given the fact that he might not get much wear from them. If you're living with cancer, this line of dark but practical thinking may be familiar. You're hesitant to give voice to it though because it would unnerve people. I know because I bought much-needed running shoes last month, and admitted to my husband only last week that I'd finally decided I was going to live long enough to justify the purchase.
Sievers stated that he believed his blog to be one of his greatest achievements. This is a man who's won many prizes and awards for journalistic excellence over the years. He was willing to reveal his sometimes painful thoughts publicly not just because his words inspired others living with cancer, but because it meant he didn't have to walk the cancer journey alone. We walked with him.
If Pulitzer Prizes are given for blogs, My Cancer certainly deserves to win one.
Thursday, August 14, 2008
I'm Committed
Shame on you if for even one moment you thought mental institution.
Yesterday, I put my money where my mouth is and registered for a local 5k event, the CVS Downtown Providence run, which attracts about 4000 participants each year. I was one of those participants in Sept. 2006. I remember getting misty-eyed during the pre-start speechifying. Not quite six months earlier, I'd been diagnosed with leukemia, and I'd spent four months in treatment. I'd lost at least ten pounds, most of it muscle. This was my chance to defy just about everything, including gravity.
I completed the race in non-record time, but I ran the entire 5k and finished somewhere in the middle of the pack. Since the race is sponsored by a local pharmacy chain, each participant received a bag of drugs (strictly OTC) along with their commemorative t-shirt. First aid items, protein bars and pain relievers, all useful to runners, were mixed in with tootbrushes, anti-diarrhea tablets and hand sanitizers.
Last year, I was unable to run in the race because I'd had a transplant two weeks earlier. Believe me, if I could have escaped for the day, I would have attempted to at least walk the course, just for the hand sanitizer. I vowed to run it in 2008.
It's 2008 and the race is just five weeks away. My goal is to beat my 2006 time, 30:28, and I'm shooting for sub-30 minutes. I will try to maintain my composure as I stand in the corral waiting for the race to begin. That won't be easy.
Yesterday, I put my money where my mouth is and registered for a local 5k event, the CVS Downtown Providence run, which attracts about 4000 participants each year. I was one of those participants in Sept. 2006. I remember getting misty-eyed during the pre-start speechifying. Not quite six months earlier, I'd been diagnosed with leukemia, and I'd spent four months in treatment. I'd lost at least ten pounds, most of it muscle. This was my chance to defy just about everything, including gravity.
I completed the race in non-record time, but I ran the entire 5k and finished somewhere in the middle of the pack. Since the race is sponsored by a local pharmacy chain, each participant received a bag of drugs (strictly OTC) along with their commemorative t-shirt. First aid items, protein bars and pain relievers, all useful to runners, were mixed in with tootbrushes, anti-diarrhea tablets and hand sanitizers.
Last year, I was unable to run in the race because I'd had a transplant two weeks earlier. Believe me, if I could have escaped for the day, I would have attempted to at least walk the course, just for the hand sanitizer. I vowed to run it in 2008.
It's 2008 and the race is just five weeks away. My goal is to beat my 2006 time, 30:28, and I'm shooting for sub-30 minutes. I will try to maintain my composure as I stand in the corral waiting for the race to begin. That won't be easy.
Tuesday, August 12, 2008
Victory Day (What's That?)
Yesterday we celebrated Victory Day. Rhode Island is the only state that has this official holiday marking Japan's surrender to the Allies and the end of World War II. It's a perfect day for back-to-school shopping, especially when it rains, as it did yesterday. I think Rhode Island deserves extra credit for not only commemorating a martial victory but for pumping $ into the economy, perhaps an additional electoral vote.
After dropping off the boys to catch the bus to running camp, Marty & I went for an ultra-high calorie breakfast at a local diner. Besides eggs and sausage, I had johnnycakes, a Rhode Island pancake specialty made from corn meal and served with maple syrup. And I wonder why I'm gaining weight! It's the fat, stupid.
Later in the day during a break in the rain, we redeemed ourselves by going on an 11-mile bike ride.
My friend Karen called to say she and her 17-year old daughter will be arriving today for an overnight visit. Karen was one of my caregivers post transplant. That's the link to her Team in Training fundraising website you see below my picture at top right. I can't wait to hear how the training is going for her upcoming century ride. Go Karen!
After dropping off the boys to catch the bus to running camp, Marty & I went for an ultra-high calorie breakfast at a local diner. Besides eggs and sausage, I had johnnycakes, a Rhode Island pancake specialty made from corn meal and served with maple syrup. And I wonder why I'm gaining weight! It's the fat, stupid.
Later in the day during a break in the rain, we redeemed ourselves by going on an 11-mile bike ride.
My friend Karen called to say she and her 17-year old daughter will be arriving today for an overnight visit. Karen was one of my caregivers post transplant. That's the link to her Team in Training fundraising website you see below my picture at top right. I can't wait to hear how the training is going for her upcoming century ride. Go Karen!
Sunday, August 10, 2008
What I'm Doing
Right now: drinking coffee and writing this post
Last night: eating lamb rogan josh and watching the Olympics
Today: reading the Sunday Times, watching the Olympics, pulling weeds when nobody's looking
Tomorrow: taking the boys to x-country camp
Planning: to go away next weekend
Feeling: 90%
Wearing: my pajamas
Reading: The Savage Detective by Roberto Bolaño
Listening: for leaks
Obsessing: about T-cells and my slowing metabolism
Wondering: why politics is so skeevy
Knitting: my brow
Thinking: about everyone battling the Beast
Hoping: for a cure
Last night: eating lamb rogan josh and watching the Olympics
Today: reading the Sunday Times, watching the Olympics, pulling weeds when nobody's looking
Tomorrow: taking the boys to x-country camp
Planning: to go away next weekend
Feeling: 90%
Wearing: my pajamas
Reading: The Savage Detective by Roberto Bolaño
Listening: for leaks
Obsessing: about T-cells and my slowing metabolism
Wondering: why politics is so skeevy
Knitting: my brow
Thinking: about everyone battling the Beast
Hoping: for a cure
Thursday, August 7, 2008
Science Fiction / Double (Cord Blood) Feature
The Rocky Horror Picture Show's got nothing on me.
Yesterday was my 11-month post-transplant check-up. My doctor informed me my blood work is 100% normal, but when you're a freak of nature, what's normal? He handed me a copy of my Dual Cord Molecular Chimerism Report which shows the numerous chimerism analyses done on my blood/marrow since my transplant. If I can explain this and you can understand it, I think I deserve a prize, possibly a Pulitzer.
A hematological chimerism test shows the genetic composition of your blood. Your garden variety stem cell transplantee will have no more than two blood lineages, the donor's and their own. A double cord blood transplantee is more in line with the original Greek mythological Chimera, a three part fire-breathing beast composed of a lion's head, a goat's body and a serpent's tail. However, 70% of cord blood transplantees experience a rejection of one of the cords (see Androids fighting) and end up with blood cells from one donor. The other rather non-darwinian 30% retain both grafts, which for unknown reasons appear to have signed a peace pact. The percentages of each cord vacillate over time. My cords, one from a boy born in Australia on May 5, 1999 (cord #1), the other from a boy born in Colorado on October 14, 2000 (cord #2), have been ranging from 32%/68% to 47%/53% with the most recent analysis (July 2008) showing 46%/54%. This adds up to 100% donor, but it is an analysis of the granulocyte lineage only. Granulocytes are a type of white blood cell which fight infection. For what it's worth, you will note that I have cells born in both the second and third millenia. Time warp, anyone?
Interestingly, the chimerism test is performed not just on granulocyte cells but on T-cells as well. T-cells are white blood cells that form the basis of our immune system and can live for decades. Tucked away in the spleen, the lymph nodes or wherever these babies hang, they actually remember past assaults on the body and spring into action as needed. I'm telling you all this because apparently, the pre-transplant chemo that annhilates the blood cells doesn't necessarily take out all the T-cells. The ones that survive are obviously savvy in the extreme. Chimerism analyses of my T-cells has shown that I still have a number of these ancient lurkers in my bloodstream, anywhere from 62% (December 2007) to 22% (July 2008). The remaining percentage are donor T-cells.
If you've followed this so far, a gold star is placed on your virtual nameplate.
I asked my doctor what all this means in terms of my ability to fight disease, and more importantly, stay in remission. It's possible my immune system will have superhuman powers. It's also possible the menage a trois will bicker and precipitate a battle royale. My doctor admits there's just not enough data to predict what will happen. I, it appears, am the data.
To summarize: I have 3 different kinds of DNA, fodder for a CSI episode, sci-fi novel or horror movie musical. I have 3 birthdays, a serious complication as far as my astrological chart goes. I mean, what is my sign? I have both XX and XY chromosomes, a condition that may or may not be covered by my health insurance. It appears I am Brad and Janet.
Don't dream it, be it.
Yesterday was my 11-month post-transplant check-up. My doctor informed me my blood work is 100% normal, but when you're a freak of nature, what's normal? He handed me a copy of my Dual Cord Molecular Chimerism Report which shows the numerous chimerism analyses done on my blood/marrow since my transplant. If I can explain this and you can understand it, I think I deserve a prize, possibly a Pulitzer.
A hematological chimerism test shows the genetic composition of your blood. Your garden variety stem cell transplantee will have no more than two blood lineages, the donor's and their own. A double cord blood transplantee is more in line with the original Greek mythological Chimera, a three part fire-breathing beast composed of a lion's head, a goat's body and a serpent's tail. However, 70% of cord blood transplantees experience a rejection of one of the cords (see Androids fighting) and end up with blood cells from one donor. The other rather non-darwinian 30% retain both grafts, which for unknown reasons appear to have signed a peace pact. The percentages of each cord vacillate over time. My cords, one from a boy born in Australia on May 5, 1999 (cord #1), the other from a boy born in Colorado on October 14, 2000 (cord #2), have been ranging from 32%/68% to 47%/53% with the most recent analysis (July 2008) showing 46%/54%. This adds up to 100% donor, but it is an analysis of the granulocyte lineage only. Granulocytes are a type of white blood cell which fight infection. For what it's worth, you will note that I have cells born in both the second and third millenia. Time warp, anyone?
Interestingly, the chimerism test is performed not just on granulocyte cells but on T-cells as well. T-cells are white blood cells that form the basis of our immune system and can live for decades. Tucked away in the spleen, the lymph nodes or wherever these babies hang, they actually remember past assaults on the body and spring into action as needed. I'm telling you all this because apparently, the pre-transplant chemo that annhilates the blood cells doesn't necessarily take out all the T-cells. The ones that survive are obviously savvy in the extreme. Chimerism analyses of my T-cells has shown that I still have a number of these ancient lurkers in my bloodstream, anywhere from 62% (December 2007) to 22% (July 2008). The remaining percentage are donor T-cells.
If you've followed this so far, a gold star is placed on your virtual nameplate.
I asked my doctor what all this means in terms of my ability to fight disease, and more importantly, stay in remission. It's possible my immune system will have superhuman powers. It's also possible the menage a trois will bicker and precipitate a battle royale. My doctor admits there's just not enough data to predict what will happen. I, it appears, am the data.
To summarize: I have 3 different kinds of DNA, fodder for a CSI episode, sci-fi novel or horror movie musical. I have 3 birthdays, a serious complication as far as my astrological chart goes. I mean, what is my sign? I have both XX and XY chromosomes, a condition that may or may not be covered by my health insurance. It appears I am Brad and Janet.
Don't dream it, be it.
Tuesday, August 5, 2008
The Slug Speeds Up
If you've been following this blog, you know that I run, or rather jog. The reasons I do so are legion but I'll spare you the list. When my transplant doctor gave me the go-ahead to start running again, I could barely make it to the end of my street, a little more than a half mile. Slowly I built up the distance and now I usually run 2 miles, sometimes 3 or 4. For the past two months, I've been running just about every day.
What I noticed though is that I'm pretty pokey. I wasn't fast to begin with, but I seem to have perfected a pace that just borders on "running"; any slower and I'd be walking. The reason for this (aside from adult-onset running, and taking my cue from the tortoise as opposed to the hare) is that I run alone, set no goals and think about everything except running. I own a fancy watch I can never remember how to use because I so rarely wear it. With all three of my kids currently training for the upcoming cross-country season, I decided it was time to get the lead out. The fact that I seem to have mysteriously gained 8-10 lbs. is a related issue, which I will save for another post.
Sadly, I discovered that my watch had died, possibly of neglect. I borrowed one of my kids' watches and set off to run a route I'd timed myself doing in the past. The results were truly embarrassing. I was averaging 11-12 minutes per mile. I've managed to get that down some but I have a way to go before I get close to my PR of 27:47 for a 5 k, an average of about 9 minutes per mile. Yesterday I ran 2 miles at what felt like race speed and managed a 20:38. Today I ran a little further at a somewhat slower pace: 3 miles in 32:49. A 5k is 3.2 miles, so I've got some catching up to do.
My goal is to run the CVS Downtown Providence 5k on Sept. 21 in under 30 minutes. It's good to set goals. My true goal, however, is to just run the damn thing since I was unable to in 2007, being tethered to an IV pole and all.
Tomorrow I take a break from running, my excuse being my monthly clinic appointment. Remember Little Man? He's on my chest today calling me Chubsy Ubsy and whispering other nasty things I'll not repeat.
What I noticed though is that I'm pretty pokey. I wasn't fast to begin with, but I seem to have perfected a pace that just borders on "running"; any slower and I'd be walking. The reason for this (aside from adult-onset running, and taking my cue from the tortoise as opposed to the hare) is that I run alone, set no goals and think about everything except running. I own a fancy watch I can never remember how to use because I so rarely wear it. With all three of my kids currently training for the upcoming cross-country season, I decided it was time to get the lead out. The fact that I seem to have mysteriously gained 8-10 lbs. is a related issue, which I will save for another post.
Sadly, I discovered that my watch had died, possibly of neglect. I borrowed one of my kids' watches and set off to run a route I'd timed myself doing in the past. The results were truly embarrassing. I was averaging 11-12 minutes per mile. I've managed to get that down some but I have a way to go before I get close to my PR of 27:47 for a 5 k, an average of about 9 minutes per mile. Yesterday I ran 2 miles at what felt like race speed and managed a 20:38. Today I ran a little further at a somewhat slower pace: 3 miles in 32:49. A 5k is 3.2 miles, so I've got some catching up to do.
My goal is to run the CVS Downtown Providence 5k on Sept. 21 in under 30 minutes. It's good to set goals. My true goal, however, is to just run the damn thing since I was unable to in 2007, being tethered to an IV pole and all.
Tomorrow I take a break from running, my excuse being my monthly clinic appointment. Remember Little Man? He's on my chest today calling me Chubsy Ubsy and whispering other nasty things I'll not repeat.
Sunday, August 3, 2008
Master of None
Recently, I saw that google has launched a Wikipedia-type series of articles written by self-appointed/annointed authorities on whatever. They are called "knols" which puts me in mind of a grassy hillock, not a "knowledge unit." Since I'm fond of naming things (I used to be a copywriter), I'm fussy about what things are called. A good title, for instance, can send me into a swoon. Ditto with names. Knol sounds lame to me, although no brilliant alternatives come to mind. knowgles? wislets?
I thought about writing a knol, briefly, but I'm not an expert in anything. Sure, I'm competent in a number of areas, and there are a few things I probably know more about than the average bear, but I'm more a Jill of All Trades. I could write about how to paint a room, cook an omelet, construct an essay, sew a pillow or curtains, plant a shrub, groom a bouvier de flandres, cut men's hair, keep houseplants alive, or play mah jongg. Yawn. Hey, what about leukemia? I know more about that than I'd like to, but honestly, I understand very little about the disease, which is incredibly complex. I do know that it torments people.
So, no knols from me.
I thought about writing a knol, briefly, but I'm not an expert in anything. Sure, I'm competent in a number of areas, and there are a few things I probably know more about than the average bear, but I'm more a Jill of All Trades. I could write about how to paint a room, cook an omelet, construct an essay, sew a pillow or curtains, plant a shrub, groom a bouvier de flandres, cut men's hair, keep houseplants alive, or play mah jongg. Yawn. Hey, what about leukemia? I know more about that than I'd like to, but honestly, I understand very little about the disease, which is incredibly complex. I do know that it torments people.
So, no knols from me.
Friday, August 1, 2008
19th Breakdown
The breakdowns continue unabated in my house. One of the air conditioning condensers literally suffered a meltdown and had to be repaired yesterday. Last week, I took the high road regarding these it's-only-money problems. Health is all that matters, right?
Whine time. It's dispiriting to wake up every day and know you'll be writing a check or signing a credit card slip for yet another mechanical failure by day's end. Makes me want to go live in a yurt. I had a friend who did that once. Our pre-Civil War house in Brooklyn didn't give us this much grief. My first toaster oven lasted 15 years. Now I have to buy a new one every year. Blah blah blah.
Okay, I feel better. So what I'm tossing money into a bottomless pit.
Maybe I'm just a little crabby today. I have zero energy and I can't believe I have to figure out what's for dinner again. I just did that last night! Maybe the stove will stop working.
Whine time. It's dispiriting to wake up every day and know you'll be writing a check or signing a credit card slip for yet another mechanical failure by day's end. Makes me want to go live in a yurt. I had a friend who did that once. Our pre-Civil War house in Brooklyn didn't give us this much grief. My first toaster oven lasted 15 years. Now I have to buy a new one every year. Blah blah blah.
Okay, I feel better. So what I'm tossing money into a bottomless pit.
Maybe I'm just a little crabby today. I have zero energy and I can't believe I have to figure out what's for dinner again. I just did that last night! Maybe the stove will stop working.
Wednesday, July 30, 2008
Peace, Sharon
I went to a funeral for a colleague this morning. We both taught ESL at the library. I'd replaced her two and a half years ago when she decided she wanted to cut back on her hours. She ended up returning to the position after my aml diagnosis. Her name was Sharon. She was diagnosed with a cancerous brain tumor around the time of my transplant. We were both treated at Dana-Farber.
Sharon had one final lesson for us today, relayed through the priest who officiated at her funeral mass. Most of us who've looked death squarely in the eye understand what Sharon wanted us to take away from the sermon: live for today. Don't cram so much into your daily schedule that you fail to experience what truly matters. Get off the treadmill. Take time to listen to birdsong while sipping coffee in a garden with an old friend, talking about old times. Live in the now.
The priest made a reference to a song that illustrated Sharon's message, that communicated what she wanted us to take away from her life's end. He assured us that neither he nor Sharon had been hippies, but that they had been teenagers during the Woodstock era. He didn't mention that the tune was by Crosby, Stills & Nash, but I recognized the lyrics he quoted. They were from the song "Woodstock," whose chorus urges us to heed Sharon's wise advice.
We are stardust, we are golden
We are ten billion year old carbon
And we got to get ourselves back to the garden
Sharon had one final lesson for us today, relayed through the priest who officiated at her funeral mass. Most of us who've looked death squarely in the eye understand what Sharon wanted us to take away from the sermon: live for today. Don't cram so much into your daily schedule that you fail to experience what truly matters. Get off the treadmill. Take time to listen to birdsong while sipping coffee in a garden with an old friend, talking about old times. Live in the now.
The priest made a reference to a song that illustrated Sharon's message, that communicated what she wanted us to take away from her life's end. He assured us that neither he nor Sharon had been hippies, but that they had been teenagers during the Woodstock era. He didn't mention that the tune was by Crosby, Stills & Nash, but I recognized the lyrics he quoted. They were from the song "Woodstock," whose chorus urges us to heed Sharon's wise advice.
We are stardust, we are golden
We are ten billion year old carbon
And we got to get ourselves back to the garden
Monday, July 28, 2008
"I was only waiting for this moment to be free"
Just got back from a 3-day trip to visit friends in Pennsylvania who have a house on a lake. This was our first trip since my transplant, and it was not what the doctor ordered. My transplant doc is fairly conservative, and although I generally hang on his every word, I'm beginning to chafe at many of the restrictions I've lived under for nearly 11 months.
Here are some of the no-no's of my mini-vacation:
contact with children
sun
a martini
dinner with 10 people
eating slightly underdone steak
In my defense, I'll assure you that I obsessively and scrupulously applied sunscreen, as well as hand sanitizer. I did not have close contact with the children in question, my nephews ages 2 and 4. They appeared quite healthy, and we were mostly outside. I have no explanation for the martini (which was delicious), and all I can say about the steak was that it was much better than the gray stuff I've been gnawing on.
Counter-balancing these forays into medically questionable territory, I:
jogged a total of 7 miles
biked 5 miles
slept late
relaxed
ate well
laughed
socialized with family and friends
forgot about cancer
I appear unscathed, although I had a very realistic dream last night in which I was tormented by a sore throat and hacking cough.
Next time I'll fly a little further from the nest.
Here are some of the no-no's of my mini-vacation:
contact with children
sun
a martini
dinner with 10 people
eating slightly underdone steak
In my defense, I'll assure you that I obsessively and scrupulously applied sunscreen, as well as hand sanitizer. I did not have close contact with the children in question, my nephews ages 2 and 4. They appeared quite healthy, and we were mostly outside. I have no explanation for the martini (which was delicious), and all I can say about the steak was that it was much better than the gray stuff I've been gnawing on.
Counter-balancing these forays into medically questionable territory, I:
jogged a total of 7 miles
biked 5 miles
slept late
relaxed
ate well
laughed
socialized with family and friends
forgot about cancer
I appear unscathed, although I had a very realistic dream last night in which I was tormented by a sore throat and hacking cough.
Next time I'll fly a little further from the nest.
Friday, July 25, 2008
She's Gotta Have It
Perhaps I should begin with the Serenity Prayer. The events of the past two days have been sobering: I am an Internetoholic. On Wednesday, powerful thunderstorms streaked through Rhode Island unleashing the usual host of biblical plagues, along with some thoroughly modern retributions such as power loss.
We only lost power for a half an hour or so. As one dog cowered in the garage, and the other hid in my closet, I was feeling in control. I was still in emergency preparation mode due to our recent dry spell. (See Water Woes) Re-filled containers of water stood ready and waiting; we’d stocked up on Poland Spring. The power blinked on and off for awhile but returned full force before dinner. Just as we finished eating, a thunderstorm raced through the area. I counted six seconds between flash and clash, mostly just for fun. The very next bolt struck somewhere in the woods out back. Awesome. Power dimmed, surged, dimmed, surged. We lost internet connection and the TV flicked off.
We’d gone two whole days without having to repair something in the house. Over the last six weeks, the air conditioning, toaster oven, refrigerator and water pump have died. Water has streamed forth from the ceiling. I’ve maintained my equanimity throughout the inconveniences and the repair bills. But yesterday when I woke up and found that the Internet was still down, my morning routine derailed, I felt a wee bit desperate. I called our cable company and spoke to a technician, BEFORE my first cup o’ jo. An hour of troubleshooting revealed that the modem was dead, no doubt zapped by the many power surges we’d experienced. The thought of a day without email, blogging, visiting and posting on various sites gave me a mild case of the DT’s. Until the modem meltdown, I’d never heard of an ethernet cable. I suddenly wanted to plug it into my veins.
I went to Best Buy and scored a new modem. I’ll spare you the ugly details about the installation, other to say that with the help of an extremely patient telephone technician named Jimmy, I somehow managed to restore Internet connection. When The New York Times appeared in my browser I nearly wept. I’m pretty sure Jimmy was pretty close to tears himself.
I don’t spend that much time online, I swear, but I guess I have a problem. Much like my morning coffee, I’ve gotta have it. Be honest, dear readers. Ask yourselves: how many blogs do you have bookmarked? How many websites do you frequent each day? Can you spend a day or two or three unplugged?
I didn’t think so.
We only lost power for a half an hour or so. As one dog cowered in the garage, and the other hid in my closet, I was feeling in control. I was still in emergency preparation mode due to our recent dry spell. (See Water Woes) Re-filled containers of water stood ready and waiting; we’d stocked up on Poland Spring. The power blinked on and off for awhile but returned full force before dinner. Just as we finished eating, a thunderstorm raced through the area. I counted six seconds between flash and clash, mostly just for fun. The very next bolt struck somewhere in the woods out back. Awesome. Power dimmed, surged, dimmed, surged. We lost internet connection and the TV flicked off.
We’d gone two whole days without having to repair something in the house. Over the last six weeks, the air conditioning, toaster oven, refrigerator and water pump have died. Water has streamed forth from the ceiling. I’ve maintained my equanimity throughout the inconveniences and the repair bills. But yesterday when I woke up and found that the Internet was still down, my morning routine derailed, I felt a wee bit desperate. I called our cable company and spoke to a technician, BEFORE my first cup o’ jo. An hour of troubleshooting revealed that the modem was dead, no doubt zapped by the many power surges we’d experienced. The thought of a day without email, blogging, visiting and posting on various sites gave me a mild case of the DT’s. Until the modem meltdown, I’d never heard of an ethernet cable. I suddenly wanted to plug it into my veins.
I went to Best Buy and scored a new modem. I’ll spare you the ugly details about the installation, other to say that with the help of an extremely patient telephone technician named Jimmy, I somehow managed to restore Internet connection. When The New York Times appeared in my browser I nearly wept. I’m pretty sure Jimmy was pretty close to tears himself.
I don’t spend that much time online, I swear, but I guess I have a problem. Much like my morning coffee, I’ve gotta have it. Be honest, dear readers. Ask yourselves: how many blogs do you have bookmarked? How many websites do you frequent each day? Can you spend a day or two or three unplugged?
I didn’t think so.
Tuesday, July 22, 2008
Water Woes
When we lived in Costa Rica, we became accustomed to the sudden loss of power, phone service or water. Losing water was the worst, but we learned to adapt to this fact of third world life. Last week we had water dripping from the ceiling in our family room; this weekend, we had no water dripping anywhere.
Fortunately, I retain the ability to remain stoic in face of these types of crises. It wasn't always that way. Before we moved to tropical paradise, I took many things for granted, including the constant flow of water from my tap. Costa Rica taught me how to go with the flow, so to speak. We placed flashlights all over the house. We had more candles than a hippie hideaway, and a stock of 5 gallon water jugs. It didn't hurt that we had a swimming pool. Cold bath anyone? Maybe it was the earthquakes that helped put power and water loss into the "no biggie" category. Certainly, a simpler lifestyle focused on family and friends gave us a different perspective on life.
One difference between Costa Rica and the good ol' USA is that when you have a problem here, you make a phone call and help is on the way. When I woke up Monday morning, I sprung into girl scout mode. With the next door neighbors' permission, I hooked up my garden hose to theirs and had water right outside my garage. We filled up buckets for toilet flushing and dish washing. We pulled out the emergency gallons of drinking water I had stored in the cupboard. The well company, which we'd called Sunday night, sent a guy over by 9:30 am. I was afraid our well had run dry, so I was greatly relieved when the technician performed a special test to gauge the water depth. He opened the well cap and dropped a pebble into the opening. Two mississippis later, he assured me the water level was at 50 feet, right where it should be. All we needed was a new pump.
Long story short, we had water flowing through our thirsty pipes before noon. I'd barely tapped into the emergency system I'd prepared. We were $1700 dollars poorer, but that seemed like a small price to pay for a shower. Costa Rican experience aside, I know there are far worse problems to face than a day without water, or even a failed well for that matter. In the scheme of things, it was a minor irritant. Living in the USA protects most of us from so many harsh realities that we become softies. We forget that there are people all over the world who don't have indoor plumbing or potable water. We get steamed if the cable cuts out or our cell phone dies. We drink at the fount of Starbucks and drown in a sea of consumption. Holy moly, I'm starting to sound downright Hobbesean. It's possible I've been reading too many church billboards.
Bottom line is, we forget what's important. My husband and I were talking about this last night in light of the spate of systems/appliance breakdowns we've had in our house this summer. My illness has tested us in ways that make most problems easily and happily managed. I'm fortunate to have access to topnotch medical care, and to be adequately insured. My family is healthy and thriving.
Battle-tested, we march forth.
Fortunately, I retain the ability to remain stoic in face of these types of crises. It wasn't always that way. Before we moved to tropical paradise, I took many things for granted, including the constant flow of water from my tap. Costa Rica taught me how to go with the flow, so to speak. We placed flashlights all over the house. We had more candles than a hippie hideaway, and a stock of 5 gallon water jugs. It didn't hurt that we had a swimming pool. Cold bath anyone? Maybe it was the earthquakes that helped put power and water loss into the "no biggie" category. Certainly, a simpler lifestyle focused on family and friends gave us a different perspective on life.
One difference between Costa Rica and the good ol' USA is that when you have a problem here, you make a phone call and help is on the way. When I woke up Monday morning, I sprung into girl scout mode. With the next door neighbors' permission, I hooked up my garden hose to theirs and had water right outside my garage. We filled up buckets for toilet flushing and dish washing. We pulled out the emergency gallons of drinking water I had stored in the cupboard. The well company, which we'd called Sunday night, sent a guy over by 9:30 am. I was afraid our well had run dry, so I was greatly relieved when the technician performed a special test to gauge the water depth. He opened the well cap and dropped a pebble into the opening. Two mississippis later, he assured me the water level was at 50 feet, right where it should be. All we needed was a new pump.
Long story short, we had water flowing through our thirsty pipes before noon. I'd barely tapped into the emergency system I'd prepared. We were $1700 dollars poorer, but that seemed like a small price to pay for a shower. Costa Rican experience aside, I know there are far worse problems to face than a day without water, or even a failed well for that matter. In the scheme of things, it was a minor irritant. Living in the USA protects most of us from so many harsh realities that we become softies. We forget that there are people all over the world who don't have indoor plumbing or potable water. We get steamed if the cable cuts out or our cell phone dies. We drink at the fount of Starbucks and drown in a sea of consumption. Holy moly, I'm starting to sound downright Hobbesean. It's possible I've been reading too many church billboards.
Bottom line is, we forget what's important. My husband and I were talking about this last night in light of the spate of systems/appliance breakdowns we've had in our house this summer. My illness has tested us in ways that make most problems easily and happily managed. I'm fortunate to have access to topnotch medical care, and to be adequately insured. My family is healthy and thriving.
Battle-tested, we march forth.
Sunday, July 20, 2008
Biathaloning
I'm always looking for food for thought, especially when I'm running. One day last week while I was jogging on my street, I noticed a sign on a tree that read "Whomever took my hanging basket, please return it." Hmm. Whomever. Shouldn't it be Whoever? What's the object of this sentence? Is it the alleged thief or the basket? This took me to the end of my street, which is where I turned around to head back home. Hmm. If I were making a sign to hang on a tree, would I have used whomever? Whomever absconded with my pendulous tuber vessel, would you please be so kind as to transport said treasure back to its lawful owner. Hey, gimme back my plant you ****. Generous reward offered for the return of my beloved Impatiens. In the midst of my grammatical reverie, I glimpsed a strange object just off to the side of the road. A hanging basket filled with wilted impatiens! I could do a good deed by telling my neighbor where to find her purloined plant. Wait a minute, I could be a hero and return the plant myself.
Readers, it's not so easy to run with a plant. Did that stop me? Naw. I spent the next half mile shifting the poor drooper from one hand to the other. I must have looked fairly odd to passing motorists, but I got a terrific upper body workout. You have to try it sometime.
My neighbor, who was outside watering her remaining plants when I called out to ask if what I'd lugged down the street was her missing hanging basket asked, where was it? Oh, by the side of the road, not too far. Must have been some kids. A bit stunned (and wouldn't you be?) the woman thanked me and hung the basket back on the tree, ripping off the thought-provoking sign.
Whoever's reading this post: may grammatical questions fuel your next run. Whatever.
Readers, it's not so easy to run with a plant. Did that stop me? Naw. I spent the next half mile shifting the poor drooper from one hand to the other. I must have looked fairly odd to passing motorists, but I got a terrific upper body workout. You have to try it sometime.
My neighbor, who was outside watering her remaining plants when I called out to ask if what I'd lugged down the street was her missing hanging basket asked, where was it? Oh, by the side of the road, not too far. Must have been some kids. A bit stunned (and wouldn't you be?) the woman thanked me and hung the basket back on the tree, ripping off the thought-provoking sign.
Whoever's reading this post: may grammatical questions fuel your next run. Whatever.
Saturday, July 19, 2008
Breakfast of Champions
You're probably thinking Wheaties. It was better than Wheaties. Marty and I drove to a remote section of Rhode Island this morning to mark the 20th anniversary of LLS's Team In Training. Remote in the sense that we had no idea where we were, and it seemed a bit--how shall I put this?--Faulknerian. Maybe it was the weather (hazy, hot & humid), or the tired-looking buildings, but we felt we'd entered a time & space warp. All the breakfast guests were TNT alumni. We'd been invited because (1) my son ran a TNT marathon last year, (2) my daughter is interning at the local Leukemia & Lymphoma Society Office and helped plan the event, and (3) I'm a former honored patient.
I had a chance to catch up with some TNT folks I haven't seen in a long time. Their current honored patient is a Lymphoma survivor who has participated in a number of TNT biking fundraisers. He spoke eloquently to the rapt crowd about his illness, touching on the special hell which cancer patients (and their loved ones) inhabit while waiting to hear test results. I introduced myself to this man at the end of the speeches and told him I was a fellow survivor. Turns out he too had had a transplant at Dana-Farber, some four years ago. A year ago, feeling terrific, he discovered he'd relapsed. After completing a TNT Century Ride (that's 100 miles on a bike), he once again entered treatment. His latest scans prove him to be in complete remission.
The breakfast was yummy; the champions, superb.
I had a chance to catch up with some TNT folks I haven't seen in a long time. Their current honored patient is a Lymphoma survivor who has participated in a number of TNT biking fundraisers. He spoke eloquently to the rapt crowd about his illness, touching on the special hell which cancer patients (and their loved ones) inhabit while waiting to hear test results. I introduced myself to this man at the end of the speeches and told him I was a fellow survivor. Turns out he too had had a transplant at Dana-Farber, some four years ago. A year ago, feeling terrific, he discovered he'd relapsed. After completing a TNT Century Ride (that's 100 miles on a bike), he once again entered treatment. His latest scans prove him to be in complete remission.
The breakfast was yummy; the champions, superb.
Thursday, July 17, 2008
The Politics of Fear
This is not about this week's New Yorker cover. Enough has been spewed about that. This is about the politics of fear in Rhode Island, the smallest state with arguably the smallest minds. Maybe you've seen our governor moaning about illegal immigration on Fox News broadcasts. He's made it his mission to prevent these abominable creatures from robbing us blind. Rhode Island is going down in flames, but don't worry, at least we'll get rid of those illegals.
Yesterday, there was a "police action" (not to be confused with a "raid") that netted 30 some-odd alleged illegal workers at six courthouses around the state. While mothers from Guatemala scrubbed toilets, 50 ICE agents and 12 state troopers swooped in and bravely relieved them of their toilet brushes. Pardonnez moi, but shit happens. I don't even want to think what this courageous action cost, and I shudder to imagine what the sanitation facilities at our palaces of justice smell like. Who wants to clean toilets in the middle of the night? No Rhode Islanders I know.
Did I mention that the companies who employ these evil doers face no criminal charges? How were they supposed to know that the workers' ID's were allegedly fake? You'll be relieved to hear that 12 of the 30 were set free (wearing ankle bracelets) for "humanitarian reasons." The State didn't have the heart to see all those children placed in foster care while their moms are rotting in jail. Now, the reunited families can all starve together while awaiting a hearing and possible jail time. Ultimately, these bad mothers may be deported, but not before it costs a lot of dough, not to mention horrendous jury duty conditions for the patriotic people of Rhode Island.
I try to stay away from politics in this blog, but this just makes my blood boil. I have enough trouble with my blood.
Yesterday, there was a "police action" (not to be confused with a "raid") that netted 30 some-odd alleged illegal workers at six courthouses around the state. While mothers from Guatemala scrubbed toilets, 50 ICE agents and 12 state troopers swooped in and bravely relieved them of their toilet brushes. Pardonnez moi, but shit happens. I don't even want to think what this courageous action cost, and I shudder to imagine what the sanitation facilities at our palaces of justice smell like. Who wants to clean toilets in the middle of the night? No Rhode Islanders I know.
Did I mention that the companies who employ these evil doers face no criminal charges? How were they supposed to know that the workers' ID's were allegedly fake? You'll be relieved to hear that 12 of the 30 were set free (wearing ankle bracelets) for "humanitarian reasons." The State didn't have the heart to see all those children placed in foster care while their moms are rotting in jail. Now, the reunited families can all starve together while awaiting a hearing and possible jail time. Ultimately, these bad mothers may be deported, but not before it costs a lot of dough, not to mention horrendous jury duty conditions for the patriotic people of Rhode Island.
I try to stay away from politics in this blog, but this just makes my blood boil. I have enough trouble with my blood.
Wednesday, July 16, 2008
drip drip drip
Don't you hate it when you get up in the morning and the first thing you hear as you stumble to the coffee pot is drip drip drip? Not from the coffee pot, but somewhere over the couch? We haven't had rain here in over a week, but it's raining from one of the recessed lights in my family room. This house wins the award for leakiest ever, and it's the youngest by far. Our 1857 Brooklyn townhouse had far fewer moisture issues.
While I wait to call the plumber, who came last week and "fixed" the minor drip, now major, I just want to kvetch about how poorly I slept last night. I should have stayed up to watch the endless all-star game; it would have been a better use of my time. I've been a poor sleeper since adolescence. A good night's sleep is one of the few things I truly yearn for, although I'm dangerous when I get one. Honestly, if you can give me a suggestion for how to catch a few more z's that I've yet to consider, and it proves successful, I will send you a prize.
Here's a book recommendation: Netherland by Joseph O'Neill. I love it when a book has the perfect title. Now it's on to Breath by Tim Winton. I owe it to my Aussie blood to keep up with the latest literature.
While I wait to call the plumber, who came last week and "fixed" the minor drip, now major, I just want to kvetch about how poorly I slept last night. I should have stayed up to watch the endless all-star game; it would have been a better use of my time. I've been a poor sleeper since adolescence. A good night's sleep is one of the few things I truly yearn for, although I'm dangerous when I get one. Honestly, if you can give me a suggestion for how to catch a few more z's that I've yet to consider, and it proves successful, I will send you a prize.
Here's a book recommendation: Netherland by Joseph O'Neill. I love it when a book has the perfect title. Now it's on to Breath by Tim Winton. I owe it to my Aussie blood to keep up with the latest literature.
Monday, July 14, 2008
Putting on the Miles & the Pounds
When I saw my transplant doctor in June, he asked me if I was running every day. I sheepishly told him, no, every other day. I projected my disappointment onto him: what, I gave this woman a transplant and she's not running every day. What a waste of baby boy blood.
Chastened, I started running every day, or at least 6 times a week. I usually do 2 miles, but throw in a 3 or 4 miler now and then. In theory, I'm "training" for the CVS Providence Downtown 5k in September. I ran this race for the first time in 2006, 6 months after I was first diagnosed with leukemia. I remember tearing up at the starting line. Last September, I didn't run the race because I was trapped in a bizarre science experiment. Now that I've escaped, I'm determined to run this September, just after I celebrate my first birthday.
A curious thing has been happening. For the first time since sixth grade, I'm actually putting on weight. I am one of those lucky people who has been able to ignore what I eat and maintain my weight. You can chalk it up to my high metabolism, or to my fear of being fat. Either way, I've never given much thought to calories or portions or carbs or trans fats.
It has come to my attention however, that I've gained almost 10 pounds and I can't figure out why or how. On one hand, this is a good thing. In Leukemia Land, it's better to be a bit hefty. Also, if I'm gaining weight, I take it as a sign of health, not illness. The problem is, my clothes are starting to feel and look tight, and I appear to be 4-5 months pregnant when not sucking in my gut. Help! Could it be muscle weight? I've upped my hand weights to 5 pounders in the last month. Is it the dreaded menopausal middle creeping in? I'm determined to battle this bulge with every fiber of my being. I do not want to be a pear. I hate pears. Someday I'll tell you why.
So I'm conflicted. Lose 5 pounds or hang on to them for good luck? Think I'll eat breakfast. Not too much.
Chastened, I started running every day, or at least 6 times a week. I usually do 2 miles, but throw in a 3 or 4 miler now and then. In theory, I'm "training" for the CVS Providence Downtown 5k in September. I ran this race for the first time in 2006, 6 months after I was first diagnosed with leukemia. I remember tearing up at the starting line. Last September, I didn't run the race because I was trapped in a bizarre science experiment. Now that I've escaped, I'm determined to run this September, just after I celebrate my first birthday.
A curious thing has been happening. For the first time since sixth grade, I'm actually putting on weight. I am one of those lucky people who has been able to ignore what I eat and maintain my weight. You can chalk it up to my high metabolism, or to my fear of being fat. Either way, I've never given much thought to calories or portions or carbs or trans fats.
It has come to my attention however, that I've gained almost 10 pounds and I can't figure out why or how. On one hand, this is a good thing. In Leukemia Land, it's better to be a bit hefty. Also, if I'm gaining weight, I take it as a sign of health, not illness. The problem is, my clothes are starting to feel and look tight, and I appear to be 4-5 months pregnant when not sucking in my gut. Help! Could it be muscle weight? I've upped my hand weights to 5 pounders in the last month. Is it the dreaded menopausal middle creeping in? I'm determined to battle this bulge with every fiber of my being. I do not want to be a pear. I hate pears. Someday I'll tell you why.
So I'm conflicted. Lose 5 pounds or hang on to them for good luck? Think I'll eat breakfast. Not too much.
Saturday, July 12, 2008
Rounds
I get up at 6 am weekdays. I put on the coffee (only Costa Rican coffee passes through my lips), make lunch for whomever will be out working or attending school, and then I switch on my computer. Fueled by a cup of dark nirvana, I check my email accounts, visit the New York Times, a weather site, blogs I follow and then do my rounds at the Leukemia & Lymphoma Discussions Boards. I read selected new posts; I respond to some of them. This is my virtual community, a community I wish I weren't a member of, but happy to have stumbled upon during the waning days of my remission from AML.
There are questions to answer (and sometimes ask), encouragement to bestow, condolences to offer. There's no tip-toeing through explosive issues; we cut right to the chase and blatantly discuss the day-to-day issues that dog someone with blood cancer. It's not pretty and it's not fun, but it's an incredible group of people from all over the planet who gather to share ideas, discuss non-cancer topics, even tell jokes. Laughing out loud is a good antidote to crying into your computer keyboard.
Sometimes I'm afraid of what I might find, and with good reason. The odds are against us, and there has been so much suffering and death. But still I make my rounds, checking in on my virtual friends, offering what I can. I've questioned whether or not this is healthy for me. After all, I want to put leukemia in a lead-lined container and drop it into the ocean, not dwell on it. But then I think, maybe I can help someone. Maybe I can give someone about to undergo an umbilical cord transplant my perspective on the experience. I can talk about anti-nausea strategies, baldness, how to minimize the pain of a bone marrow biopsy. I can serve up some hope, and I can take away a portion for myself. I continue my rounds.
There are questions to answer (and sometimes ask), encouragement to bestow, condolences to offer. There's no tip-toeing through explosive issues; we cut right to the chase and blatantly discuss the day-to-day issues that dog someone with blood cancer. It's not pretty and it's not fun, but it's an incredible group of people from all over the planet who gather to share ideas, discuss non-cancer topics, even tell jokes. Laughing out loud is a good antidote to crying into your computer keyboard.
Sometimes I'm afraid of what I might find, and with good reason. The odds are against us, and there has been so much suffering and death. But still I make my rounds, checking in on my virtual friends, offering what I can. I've questioned whether or not this is healthy for me. After all, I want to put leukemia in a lead-lined container and drop it into the ocean, not dwell on it. But then I think, maybe I can help someone. Maybe I can give someone about to undergo an umbilical cord transplant my perspective on the experience. I can talk about anti-nausea strategies, baldness, how to minimize the pain of a bone marrow biopsy. I can serve up some hope, and I can take away a portion for myself. I continue my rounds.
But though I have wept and fasted, wept and prayed,
Though I have seen my head (grown slightly bald)
brought in upon a platter,
I am no prophet--and here's no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat
and snicker,
And in short I was afraid.
The Love Song of J. Alfred Prufrock, T.S. Eliot
Though I have seen my head (grown slightly bald)
brought in upon a platter,
I am no prophet--and here's no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat
and snicker,
And in short I was afraid.
The Love Song of J. Alfred Prufrock, T.S. Eliot
Thursday, July 10, 2008
10 Months, Still Kickin
Boston was like a giant baked bean yesterday, hot and sticky. Fortunately, we had an early clinic appointment and were back home having lunch by 1:00 pm. There's nothing much to report, as my blood work continues to be summa cum laude. One bit of "news" is that my doctor eliminated a drug from my regimen, leaving me with just 2 prescriptions per day. That's probably about average for a 54-year old American, and those should be phased out by September. A chimerism test was ordered to see what's up with my cords. The last time we checked, Colorado Boy was dominating Aussie Boy by a 3 to 1 margin. Even my blood is a metaphor for American hegemony.
My immune system has added some new defensive moves, scoring a 247 on the CD4 count. Normal is 500-1500 so I'm still fragile, but you could probably drop me now and I won't shatter. I might get a crack or two. Don't worry, I'm still assiduously avoiding confrontation, especially with snotty toddlers.
A word on uniquity. That's not a word, but I think it sounds better than uniqueness. It would appear that I am the lone cord blood transplantee living in the State of Rhode Island. This came out in a conversation I had the other day with a policy analyst for the RI House of Representatives. We were chatting about the cord blood initiative the RI Blood Center's trying to get off the ground, bouncing around ideas about how to make the case compelling in the eyes of the public and the powers that be. Normally, I'd love to be unique in some way, but I would not have chosen this specialty. It chose me, so I'm going to try to find some use for it.
Shout out to Ann and Chris!
My immune system has added some new defensive moves, scoring a 247 on the CD4 count. Normal is 500-1500 so I'm still fragile, but you could probably drop me now and I won't shatter. I might get a crack or two. Don't worry, I'm still assiduously avoiding confrontation, especially with snotty toddlers.
A word on uniquity. That's not a word, but I think it sounds better than uniqueness. It would appear that I am the lone cord blood transplantee living in the State of Rhode Island. This came out in a conversation I had the other day with a policy analyst for the RI House of Representatives. We were chatting about the cord blood initiative the RI Blood Center's trying to get off the ground, bouncing around ideas about how to make the case compelling in the eyes of the public and the powers that be. Normally, I'd love to be unique in some way, but I would not have chosen this specialty. It chose me, so I'm going to try to find some use for it.
Shout out to Ann and Chris!
Monday, July 7, 2008
Accepting Things I Cannot Change
Okay, so 26 miles was a bit much. After spending most of Friday inert, and some of Saturday in a minimally functioning mode, I have to admit that the bike ride was over the top no matter how well I think I feel. I should have worked up to it slowly, or done it on a day when the temperature was lower. I should have done it 20 years ago when I was in my 30's. Mea culpa.
I finally put my running shoes back on yesterday after a 2-day hiatus. This morning I also ran a couple of miles, so I think the bike trauma is behind me. Thanks to help from Marty, the windows are now sparkling clean. Mark and Harry finished the demolition of the front garden and we now have a wood pile stacked high out back, our possible heating source for the cold winter ahead. I plan to ruminate a little about the eventual garden we'll put in. I'm thinking about something soothing, a spot that will be a contemplative place, perhaps a zen garden.
I need some time in a zen garden, a time and a place outside myself and my pedestrian concerns. A peaceful refuge where thoughts don't turn to cancer. A place where the angst of guiding children through the Scylla & Charybdis of the teenage wasteland can float up and fly off with the hummingbirds. We've called off our trip to go college sampling because our son thinks we're dumb and only he knows what he wants in terms of college. We're putting him in charge of figuring this out, which hopefully means a coach will actively recruit him, fill out his applications and petition guidance and the college board to file the necessary paperwork. He'll figure it out. He's very smart and knows so much more than we do about this than we do. How did we get so dumb?
I just took a deep cleansing breath, but I'm not there yet.
I finally put my running shoes back on yesterday after a 2-day hiatus. This morning I also ran a couple of miles, so I think the bike trauma is behind me. Thanks to help from Marty, the windows are now sparkling clean. Mark and Harry finished the demolition of the front garden and we now have a wood pile stacked high out back, our possible heating source for the cold winter ahead. I plan to ruminate a little about the eventual garden we'll put in. I'm thinking about something soothing, a spot that will be a contemplative place, perhaps a zen garden.
I need some time in a zen garden, a time and a place outside myself and my pedestrian concerns. A peaceful refuge where thoughts don't turn to cancer. A place where the angst of guiding children through the Scylla & Charybdis of the teenage wasteland can float up and fly off with the hummingbirds. We've called off our trip to go college sampling because our son thinks we're dumb and only he knows what he wants in terms of college. We're putting him in charge of figuring this out, which hopefully means a coach will actively recruit him, fill out his applications and petition guidance and the college board to file the necessary paperwork. He'll figure it out. He's very smart and knows so much more than we do about this than we do. How did we get so dumb?
I just took a deep cleansing breath, but I'm not there yet.
Friday, July 4, 2008
26 Miles Because I Could
Yesterday, we dusted off my old bike and drove to Providence to ride on the 14.5-mile East Bay bike path. My husband has started actively biking again, so I gamely agreed to accompany him on this scenic ride.
It was sunny and warm; I didn't spare the sunscreen. The route was flat and followed the curve of the Narragansett Bay which separates the large western chunk of Rhode Island from the narrow eastern slice that borders Massachusetts. The last time I've biked any distance was 3 years ago when Marty and I took a ferry to Martha's Vineyard and biked all over the island. That was before cancer.
We parked in a lot that was some 1.5 miles into the route, so it would be another 13 to arrive at the end of the path in Bristol. Of course, we could have stopped at any point, say 5 miles or 7, and made the return trip. But I knew that once I started, I would have to go to the end. I rarely do things half way, even if it's the wisest course.
The first 10 miles were very pleasant. Nice breezes, beautiful views, bird song. Much of the path cuts through small suburban towns along the way, so there's no danger of nature overload. I took many mental notes on the numerous ice cream stands sprinkled en route. It was fun to peek into back yards (and some front) and compare the wildly diverse housing stock, from stately mansions to shotgun shacks. Soon, it began to dawn on me that every pedal forward counted for double. With some 3 miles to the end, I'd be biking an additional 6 miles. We pressed on.
By the time we reached Bristol, it was pushing 90 degrees. I was more than ready for ice cream, so we chose a place that promised 26 varieties of soft serve. The young woman at the counter looked at me like I was an alien (I probably looked like one at this point) and said they weren't serving ice cream yet, only coffee, donuts and smoothies/milkshakes. So I settled for a java chip frozen something-or-other piled high with whipped cream. This would be my fuel for the 13-mile return trip.
We had to make a few rest stops, and by the time we got back to the car, I felt pretty unenthusiastic about biking, but we made it unscathed. My bike was in worse shape than I was, with a rapidly deflating tire and a cracked gear shift. I won't be able to ride again until it's fixed, which I'm not crying about. Those final 5 or 6 miles were challenging, but I kept plogging along, knowing I'd gotten through worse things.
I'm celebrating Independence Day by doing nothing. Save for the hot dog I'll hoist to my mouth later on, I'm just saying no to any and all physical actvities.
Wednesday, July 2, 2008
Thoughts for a Friend
This is what I hate about leukemia. Just when you think that maybe, just maybe you've caught the little bastard, tied him up and thrown him to the sharks, he sneaks back into your life. Just when you're feeling better, building strength and confidence, even allowing yourself to think about the future, LB shows up and with one petulant blow, knocks down your carefully built stack of dreams.
My friend Ann is lying in a bed at MD Anderson in Houston. She was supposed to be buying a house and re-entering school in the Fall. She was just shy of 400 days post transplant when LB sneaked up and threw a sucker punch. I feel like it happened to me.
Ann will not take this lying down, not for long. She will gather all her strength, all her moxy, all her anger, all her everything and she will fight LB. It may take a few rounds, but she'll go the distance.
Ann's Fight continues. Love you Ann. Stay strong.
My friend Ann is lying in a bed at MD Anderson in Houston. She was supposed to be buying a house and re-entering school in the Fall. She was just shy of 400 days post transplant when LB sneaked up and threw a sucker punch. I feel like it happened to me.
Ann will not take this lying down, not for long. She will gather all her strength, all her moxy, all her anger, all her everything and she will fight LB. It may take a few rounds, but she'll go the distance.
Ann's Fight continues. Love you Ann. Stay strong.
Monday, June 30, 2008
The Little Man on My Back
The chest pressure was short lived, but that annoying little man returned today and got on my back. It all began when I inexplicably slept for 9 hours and felt ready to take on the world. Bueno, I ran my usual two miles, ate breakfast (let's hear it for blueberries) and was heading for the shower when little man started barking orders at me. After cleaning two windows (inside and out), doing two loads of laundry and contemplating a re-design of my front garden, I bent over quickly and sent the little slave-driver flying. I finally showered and headed out to the bank. I also stopped in at CVS to buy more Windex since I'm fresh out due to the morning's labor. Impetuously, I bought a bottle of nail polish, "Hot Mango," because I like to have happy toes. Returning home, I did ten or eleven other minor things before embarking on tonight's dinner preparations. I couldn't decide between meatballs/sausage/spaghetti or fried chicken, so I decided to cook both. If Marty doesn't come home soon and save me from this madness (I swear, I'm NOT bi-polar), I'm either going to cook a third dinner or clean out the garage.
My toes look quite yummy.
My toes look quite yummy.
Saturday, June 28, 2008
Something to Get Off My Chest
There's a little man sitting on my chest today and I wish he'd get the hell off. He comes by every once in a while and assumes the lotus position on my upper chest area, quietly and persistently pushing down on my internal organs and making me feel off. Since I have no other symptoms of any kind, I'm not thinking I have heart disease or some other serious condition. I slept fairly well last night, so I'm not particularly tired, although little man drags me down a bit. I ran two miles this morning before it got too hot, and I felt really good.
Since I usually feel remarkably well for someone who had a transplant nine months ago, this symptom is very noticeable. It makes me feel like a slug or a sloth or your average teenager. My three are presently draped over the furniture in the TV room watching mindless drivel. I have two possible explanations for the pressure I'm feeling. One is that I'm suffering normal post-transplant lethargy. The other is that I'm literally feeling pressured by something but I don't know what it is. Free-floating anxiety has decided to hover over my chest, weighing me down and worrying me enough that I'm writing about it.
Here's hoping that this post is therapeutic, that little man get's off my chest and does something more productive, like mow the lawn.
Since I usually feel remarkably well for someone who had a transplant nine months ago, this symptom is very noticeable. It makes me feel like a slug or a sloth or your average teenager. My three are presently draped over the furniture in the TV room watching mindless drivel. I have two possible explanations for the pressure I'm feeling. One is that I'm suffering normal post-transplant lethargy. The other is that I'm literally feeling pressured by something but I don't know what it is. Free-floating anxiety has decided to hover over my chest, weighing me down and worrying me enough that I'm writing about it.
Here's hoping that this post is therapeutic, that little man get's off my chest and does something more productive, like mow the lawn.
Wednesday, June 25, 2008
How I Want to Be Remembered
Don't worry. I'm not planning my funeral yet. Or anytime soon. The idea for this post came from a question posed by Leroy Sievers in his blog "My Cancer." Unfortunately, Mr. Sievers is getting uncomfortably close to thinking about his memorial service.
I would like to be remembered as someone who could move personal mountains, meaning I was always up to the task and could even light a fire under those who didn't share my enthusiasm. I'm pretty sure I was born with this tenacious trait. I humbly recognize I will not be able to move the final mountain.
I would like to be remembered for my sense of humor, without which I would not have survived to this point. I inherited this from my grandfather who combined desert-dry wit with a highly cultivated morosity--the world was too much with him.
Miscellaneaous fortes: brewing a mean cup of coffee; turning a phrase; always choosing the right container for the contents; color perception and its various uses.
Things I love: the comfort of sylvan scenes (see Wordsworth); experiencing something new; knowledge. My family goes without saying, but I've said it anyway.
Things I can't abide: spectacle (this includes Broadway musicals, circuses, etc.); animal cruelty (did I mention circuses?); most isms, but especially racism, sexism, consumerism; willful idiocy.
Foibles: I think I'll save this for another day.
I would like to be remembered as someone who could move personal mountains, meaning I was always up to the task and could even light a fire under those who didn't share my enthusiasm. I'm pretty sure I was born with this tenacious trait. I humbly recognize I will not be able to move the final mountain.
I would like to be remembered for my sense of humor, without which I would not have survived to this point. I inherited this from my grandfather who combined desert-dry wit with a highly cultivated morosity--the world was too much with him.
Miscellaneaous fortes: brewing a mean cup of coffee; turning a phrase; always choosing the right container for the contents; color perception and its various uses.
Things I love: the comfort of sylvan scenes (see Wordsworth); experiencing something new; knowledge. My family goes without saying, but I've said it anyway.
Things I can't abide: spectacle (this includes Broadway musicals, circuses, etc.); animal cruelty (did I mention circuses?); most isms, but especially racism, sexism, consumerism; willful idiocy.
Foibles: I think I'll save this for another day.
Friday, June 20, 2008
The Road to Leah
Yesterday, I drove to Amherst, MA to pay a shiva (condolence) call at the home of Leah's mom. Neither Leah nor her mom are Jewish, but Leah had met a rabbi at hospice and when he explained the meaning and purpose of the 7-day mourning ritual, Leah was all in. It was her final and wonderful gift to those who loved her.
As I mentioned several posts back, I never met Leah in person. I didn't know her mom either. But something compelled me to make the journey. On the drive there I thought about what I might say to the strangers I was about to meet. I couldn't think of much. I was too sad. When I arrived, the narrow wooded drive was chock full of cars. I entered the house and explained who I was to the woman I somehow sensed was Leah's mother. She seemed shocked at first. It was a rather complex and long-winded introduction, but she realized who I was and welcomed me with open arms. She immediately introduced me to her partner, Leah's other mom. They made me feel right at home.
After about 30 minutes, Leah's moms stood up and thanked us all for coming, explaining the concept of shiva, and how Leah had organized the event with the help of Rabbi Charlie. Then they asked anyone who cared to to share something about Leah. Turns out many of the people in the room didn't know Leah; they were there for the women who stayed at her beside 24 hours a day for two weeks until Leah found peace. After 4 or 5 people spoke, her mom nodded toward me. The reason I'd gone to Amherst became clear.
I spoke about meeting Leah on line on the LLS Discussion Boards. I described our improbable cyber friendship. I talked about Leahness, about her strength, her sense of humor, her generosity. The Leah I knew from on line posts and emails was the same woman the others had described. I'd been lucky to have experienced the essence of Leah. It was wonderful to be able to take part in this remembrance of a one-of-a-kind woman. Leukemia, I hate you.
I left behind an envelope filled with tributes to Leah from the LLS Discussion Boards, along with many messages of condolence. As I left her moms' house, I felt cheated and blessed. Cheated that my relationship with Leah was over, that someone I would have liked to have known better was gone. Blessed that I knew her at all, and was able to share the little I knew with those she left behind.
As I mentioned several posts back, I never met Leah in person. I didn't know her mom either. But something compelled me to make the journey. On the drive there I thought about what I might say to the strangers I was about to meet. I couldn't think of much. I was too sad. When I arrived, the narrow wooded drive was chock full of cars. I entered the house and explained who I was to the woman I somehow sensed was Leah's mother. She seemed shocked at first. It was a rather complex and long-winded introduction, but she realized who I was and welcomed me with open arms. She immediately introduced me to her partner, Leah's other mom. They made me feel right at home.
After about 30 minutes, Leah's moms stood up and thanked us all for coming, explaining the concept of shiva, and how Leah had organized the event with the help of Rabbi Charlie. Then they asked anyone who cared to to share something about Leah. Turns out many of the people in the room didn't know Leah; they were there for the women who stayed at her beside 24 hours a day for two weeks until Leah found peace. After 4 or 5 people spoke, her mom nodded toward me. The reason I'd gone to Amherst became clear.
I spoke about meeting Leah on line on the LLS Discussion Boards. I described our improbable cyber friendship. I talked about Leahness, about her strength, her sense of humor, her generosity. The Leah I knew from on line posts and emails was the same woman the others had described. I'd been lucky to have experienced the essence of Leah. It was wonderful to be able to take part in this remembrance of a one-of-a-kind woman. Leukemia, I hate you.
I left behind an envelope filled with tributes to Leah from the LLS Discussion Boards, along with many messages of condolence. As I left her moms' house, I felt cheated and blessed. Cheated that my relationship with Leah was over, that someone I would have liked to have known better was gone. Blessed that I knew her at all, and was able to share the little I knew with those she left behind.
Tuesday, June 17, 2008
Cool News
During last week's heat wave, we developed a number of mechanical problems that tested our coping mechanisms. First the central air conditioning stopped cooling, followed by a copycat meltdown in the refrigerator. Then Marty's car overheated due to what we've now learned is a cracked radiator. Not only was it hotter than the hinges of hell around here, there was nothing cold to drink. Kinda reminded me of our honeymoon in an unnaturally steamy London where there was no A.C. and very little ice. The heat wave finally broke but the fridge stayed busted for 5 days forcing us to live out of coolers and replenish ice daily. This incredible hardship was duly noted by my 17-year old who quipped, "Except that we have Internet, it's like living in the Middle Ages."
Somewhere during that trying week, I went to the clinic for a check-up and was told my blood is completely normal, see ya next month. My feeling was that as long as it wasn't me overheating and suffering the breakdown, I could easily handle the other annoyances. Two out of the three cooling devices were repaired on Friday. Marty's Saab is a story yet without an ending.
The other bit of cool news is that Mark placed 2nd in the 800 meter run at the New England Championships in Maine on Saturday. I started weeping after the race ended, my sobs duly captured on videotape. Life had frayed my nerves and worn me down to a nub, but I still had some gooey emotion trapped in there that managed to leak out.
All's well that ends well.
Somewhere during that trying week, I went to the clinic for a check-up and was told my blood is completely normal, see ya next month. My feeling was that as long as it wasn't me overheating and suffering the breakdown, I could easily handle the other annoyances. Two out of the three cooling devices were repaired on Friday. Marty's Saab is a story yet without an ending.
The other bit of cool news is that Mark placed 2nd in the 800 meter run at the New England Championships in Maine on Saturday. I started weeping after the race ended, my sobs duly captured on videotape. Life had frayed my nerves and worn me down to a nub, but I still had some gooey emotion trapped in there that managed to leak out.
All's well that ends well.
Sunday, June 15, 2008
Father's Day
There's a reason Hallmark is so successful. It's not easy to express how you feel about someone who's such an important element in your life. I've been sitting here for 15 minutes thinking about whether I want to hide behind metaphor or humor.
Today is Father's Day. Marty has more than earned his day of honor. He knows the agony and the ecstasy of being a father. With three kids ages 20, 17 and 15, he experiences pain and joy on a daily basis. In the past two years, Marty has earned Mother's Day credits, too.
Marty, you are king for the day. Your grand prize was going to be a brand new refrigerator-freezer, but we finally got that fixed on Friday. Your pickles are saved! After you go to the supermarket and buy yourself something nice for dinner, I'll cook it! The kids may or may not present you with gifts, but will hopefully make an effort to be a little less judgmental. You might actually know something today! I can't make any promises but you might get the respect you deserve, and possibly a new pair of bike shorts.
Happy father's day to the finest father there is. Even when we are pushing you a little closer to the edge, we love you!
Today is Father's Day. Marty has more than earned his day of honor. He knows the agony and the ecstasy of being a father. With three kids ages 20, 17 and 15, he experiences pain and joy on a daily basis. In the past two years, Marty has earned Mother's Day credits, too.
Marty, you are king for the day. Your grand prize was going to be a brand new refrigerator-freezer, but we finally got that fixed on Friday. Your pickles are saved! After you go to the supermarket and buy yourself something nice for dinner, I'll cook it! The kids may or may not present you with gifts, but will hopefully make an effort to be a little less judgmental. You might actually know something today! I can't make any promises but you might get the respect you deserve, and possibly a new pair of bike shorts.
Happy father's day to the finest father there is. Even when we are pushing you a little closer to the edge, we love you!
Friday, June 13, 2008
The Best Friend I Never Met
It is with great sadness that I announce the death of Leah Ryan. Leah died from leukemia yesterday at the age of 44. She lived in Sunnyside, NY. She leaves behind her mother, Arlene, and her adored kitties.
I met Leah on the Leukemia & Lymphoma Society's Discussion Boards last Fall. She had recently relapsed and was contemplating a transplant. You can tell a lot about a person by the way they write. Leah's voice was very distinctive, and since she's a writer, her posts were wonderful to read. Back in December, Leah sent me an email, our first contact of a more personal nature. She had read my blog in preparation for her own transplant. We became cyber pals.
Although I never met Leah, I feel I know her. She was smart, funny, no-nonsense. She lived life on her own terms, and she died that way, too. We wrote to each other not just about our illnesses, but about coffee, books, our lives, writing, our fears. Like me, Leah was a type-A personality. When I wrote a blog post about how I can't sit still, she immediately emailed me, somewhat relieved that she was not the only post-transplant lunatic making to-do lists and driving herself nuts.
Leah meant a lot to the people who participate on the LLS boards. That's because she was supportive and caring. And of course, funny. Did I mention she was funny? Leah started her own blog after her transplant, and so much of it was hilarious. One particular act of Leah kindness stands out for me. Back in March, when I was freaking out about my perpetual fear of relapse, Leah immediately wrote to me and gave me a pep talk. She also gave me her phone numbers, and told me to call whenever I felt like it. Leah was one of the best friends I never met.
I would eventually call Leah, right after I read on LLS that she had relapsed once more. At the time, I couldn't decide whether calling her would be an unwanted intrusion or not. I had the sense that Leah was a very private person. Truthfully, I didn't even want to make the call, because what was I going to say? Leah being Leah, she immediately put me at ease and we spoke for ten minutes or so. She sounded exactly as I had imagined she would.
Leah, I'm glad you took the time to share yourself with me. Cancerland is a sucky place, but you've made it more bearable. You've touched me.
Peace to you, my friend.
I met Leah on the Leukemia & Lymphoma Society's Discussion Boards last Fall. She had recently relapsed and was contemplating a transplant. You can tell a lot about a person by the way they write. Leah's voice was very distinctive, and since she's a writer, her posts were wonderful to read. Back in December, Leah sent me an email, our first contact of a more personal nature. She had read my blog in preparation for her own transplant. We became cyber pals.
Although I never met Leah, I feel I know her. She was smart, funny, no-nonsense. She lived life on her own terms, and she died that way, too. We wrote to each other not just about our illnesses, but about coffee, books, our lives, writing, our fears. Like me, Leah was a type-A personality. When I wrote a blog post about how I can't sit still, she immediately emailed me, somewhat relieved that she was not the only post-transplant lunatic making to-do lists and driving herself nuts.
Leah meant a lot to the people who participate on the LLS boards. That's because she was supportive and caring. And of course, funny. Did I mention she was funny? Leah started her own blog after her transplant, and so much of it was hilarious. One particular act of Leah kindness stands out for me. Back in March, when I was freaking out about my perpetual fear of relapse, Leah immediately wrote to me and gave me a pep talk. She also gave me her phone numbers, and told me to call whenever I felt like it. Leah was one of the best friends I never met.
I would eventually call Leah, right after I read on LLS that she had relapsed once more. At the time, I couldn't decide whether calling her would be an unwanted intrusion or not. I had the sense that Leah was a very private person. Truthfully, I didn't even want to make the call, because what was I going to say? Leah being Leah, she immediately put me at ease and we spoke for ten minutes or so. She sounded exactly as I had imagined she would.
Leah, I'm glad you took the time to share yourself with me. Cancerland is a sucky place, but you've made it more bearable. You've touched me.
Peace to you, my friend.
Monday, June 9, 2008
A Worthy Cause
That's me with my dear friend Karen McIntyre from Central Florida. She came up for a visit on Friday, endured the heat and excitement of the State Meet, and has been wonderful to have around. We took a two-mile jog around the neighborhood early this morning when the temperature was a mere 70-75 degrees. Now it's around 90, which is pretty high for Little Rhody. Humid, too.You might notice we're wearing Team in Training tops. That's because Karen has signed up to do the Team's Intracoastal Waterway Century Ride in October. That's 100 miles on a bike in the steamy Florida sun, all to raise money for the Leukemia and Lymphoma Society. I've benefited from the Society in so many ways. Some I can put my finger on: discussion forums, teleconferences, prescription co-pay program; others are less tangible but extremely important: research for new therapies and ultimately, a cure.
Karen could use your help, and you don't even have to get on a bike! Visit Karen's website today and donate whatever you can to this worthy cause.
Sunday, June 8, 2008
Sweet (Hot) Victory
A year ago, I had planned to join Mark on a trip to San Diego where he was going to run the Rock 'N Roll Marathon for the Leukemia Society's Team in Training in my honor. Things did not work out that way. I was hospitalized once again for relapsed leukemia, and Mark went to California without me.
Yesterday, I sat in the stands at Brown University Stadium cheering for Mark as he ran the 1500 and 800 meter races in the Rhode Island State Meet. A year had come and gone, and I was miraculously still among the living. Among the living and broiling in 90 degree heat, covered with copious amounts of sunscreen and shaded by two umbrellas. The sun is anathema to me, as it is known to trigger graft versus host disease, something I strenuously avoid. Mark placed second in the 1500m with a personal best time of 3:57. He really wanted a state title though, and that came down to the 800m which had a talented field of of 5 runners in the 1:57 range. In a race that was harrowing to watch, Mark pulled ahead in the final 100 meters to win in 1:56.2.
This was a sweet victory, considering what's happened between last June and this. Here's a shot of my State Champion receiving his blue ribbon. Life is good. Hard, but good.
Yesterday, I sat in the stands at Brown University Stadium cheering for Mark as he ran the 1500 and 800 meter races in the Rhode Island State Meet. A year had come and gone, and I was miraculously still among the living. Among the living and broiling in 90 degree heat, covered with copious amounts of sunscreen and shaded by two umbrellas. The sun is anathema to me, as it is known to trigger graft versus host disease, something I strenuously avoid. Mark placed second in the 1500m with a personal best time of 3:57. He really wanted a state title though, and that came down to the 800m which had a talented field of of 5 runners in the 1:57 range. In a race that was harrowing to watch, Mark pulled ahead in the final 100 meters to win in 1:56.2.
This was a sweet victory, considering what's happened between last June and this. Here's a shot of my State Champion receiving his blue ribbon. Life is good. Hard, but good.
Friday, June 6, 2008
Wanted: Personal Chef
I like to eat. There was a time when I liked to cook. Not any more. The problem is, I can't seem to focus on menu planning, so each day arrives and the question "what's for dinner?" has no answer. We don't go hungry or anything; last night we ordered pizza. I think it's because I so rarely go to the supermarket. I send Marty with a list, but it's not the same as walking up and down the aisles to see what's available, what's on sale, what's new, what's fresh.
A personal chef would solve this problem. He or she would do the planning, the buying, the cooking. We'd do the fun part, the eating. I should not be complaining. When I was at the mercy of the hospital "chef," I wasn't very happy.
When we have guests, which we've been having a lot of lately, it becomes even more challenging. We can't let them starve. We do our best. Me, I'm going through the motions, but my interest in serving wonderful dinners is non-existent. I'm dinner-depressed. Do you think there's a drug for that?
A personal chef would solve this problem. He or she would do the planning, the buying, the cooking. We'd do the fun part, the eating. I should not be complaining. When I was at the mercy of the hospital "chef," I wasn't very happy.
When we have guests, which we've been having a lot of lately, it becomes even more challenging. We can't let them starve. We do our best. Me, I'm going through the motions, but my interest in serving wonderful dinners is non-existent. I'm dinner-depressed. Do you think there's a drug for that?
Wednesday, June 4, 2008
The Weight
Yesterday was a full day. I crammed so much into it that I was beyond tired when I went to bed and could not sleep. Due to a temporary car shortage (4 drivers, 3 cars), I had to drive the boys to school at 7:15. Normally, my car's up for grabs since I'm usually at home. Yesterday I had places to go, people to see, two miles to run. I went to the library where I work (currently from home) to drop off copies of a grant I filed over the weekend. I made sure to stay in the non-public area. I was fortunate to see several colleagues, all of whom commented on how great I look. Then I went to play mah jongg and have lunch with a few friends. More compliments, more walking the thin line between "I'm fine" and "I'm in a black hole."
Thing is, I didn't feel so great. Nothing specific, just a sense that a weight was pushing down on my chest. I felt relapsy. Every now and then when I feel less than perfect, my mind goes to the dark place where all my fears reside. I think every person who's ever had cancer is highly familiar with this purgatorial zone. Most of the time, I keep the door barricaded, but yesterday I could not. Part of the problem was that my health was the preferred topic of conversation wherever I went. I felt pretty blah, but I didn't want to open that can of worms.
I was also thinking about what I was doing a year ago, lying limp in a hospital bed, enduring my fifth day of chemo. I was supposed to be hosting friends from New Zealand at a Memorial Day barbecue. Instead, they came to see me in the hospital. Yesterday, these friends were in town again, and this time our visit unfolded as planned, with the backyard cookout we had been forced to table a year ago. Naturally, we spoke about my illness, the transplant, my recuperation, the whole nine yards that I'd been trying to forget, especially yesterday, when I felt so listless. It was a long evening, nice to see old friends from another life, but oh so exhausting. I finally crawled into bed around 11 pm and couldn't sleep.
How would I feel today, kicking off the day with a significant sleep deficit? I'm pleased to report that I'm tired but the blahs are gone and the anxiety banished, at least for now. I don't want to add to the cacophony of complaints I hear every day about mostly silly things. I'll continue to put one foot in front of the other, and try to find something to rejoice in each day. Today, it might be something simple, like a toasted bagel with crunchy peanut butter for lunch, followed by a postprandial nap. I could use that nap.
Thing is, I didn't feel so great. Nothing specific, just a sense that a weight was pushing down on my chest. I felt relapsy. Every now and then when I feel less than perfect, my mind goes to the dark place where all my fears reside. I think every person who's ever had cancer is highly familiar with this purgatorial zone. Most of the time, I keep the door barricaded, but yesterday I could not. Part of the problem was that my health was the preferred topic of conversation wherever I went. I felt pretty blah, but I didn't want to open that can of worms.
I was also thinking about what I was doing a year ago, lying limp in a hospital bed, enduring my fifth day of chemo. I was supposed to be hosting friends from New Zealand at a Memorial Day barbecue. Instead, they came to see me in the hospital. Yesterday, these friends were in town again, and this time our visit unfolded as planned, with the backyard cookout we had been forced to table a year ago. Naturally, we spoke about my illness, the transplant, my recuperation, the whole nine yards that I'd been trying to forget, especially yesterday, when I felt so listless. It was a long evening, nice to see old friends from another life, but oh so exhausting. I finally crawled into bed around 11 pm and couldn't sleep.
How would I feel today, kicking off the day with a significant sleep deficit? I'm pleased to report that I'm tired but the blahs are gone and the anxiety banished, at least for now. I don't want to add to the cacophony of complaints I hear every day about mostly silly things. I'll continue to put one foot in front of the other, and try to find something to rejoice in each day. Today, it might be something simple, like a toasted bagel with crunchy peanut butter for lunch, followed by a postprandial nap. I could use that nap.
Monday, June 2, 2008
Ted's Tumor
The public recently had the opportunity to watch Senator Kennedy go sailing shortly after he was diagnosed with a malignant brain tumor. We mere mortals might be asking ourselves, gee, could I have the courage to face cancer like that, with such dignity and aplomb? Sure we could, at times. We do so everyday, without the paparazzi snapping away. Every cancer patient has moments of despair mingled with triumphs large and small. The despair part's easier to recognize and comprehend, so I won't describe what that's like. There's a cancer saying that goes, I have cancer; cancer doesn't have me. Ted Kennedy at the helm of his boat captures this perfectly, although he might have been thinking: will I be doing this next Memorial Day?
Facing cancer has nothing to do with bravery. You have no choice when the diagnosis is handed down. You just do it. You have good days; you have bad days. You have days when you want to give up. You try to protect the ones you love by keeping your "game face" on. You do not want pity. You want to be treated like you're you, not some poor creature living under a death sentence. You want to laugh, and complain, and eat ice cream.
Carpe diem, baby.
Facing cancer has nothing to do with bravery. You have no choice when the diagnosis is handed down. You just do it. You have good days; you have bad days. You have days when you want to give up. You try to protect the ones you love by keeping your "game face" on. You do not want pity. You want to be treated like you're you, not some poor creature living under a death sentence. You want to laugh, and complain, and eat ice cream.
Carpe diem, baby.
Thursday, May 29, 2008
What I'm Reading
The NY Times recently published a review of a book that has the anxiety-provoking title "1001 Books You Must Read Before You Die." I was immediately reminded of my 2nd grade self who upon entering the school library at her new elementary school worried she would soon read every book ever written and have nothing to do for the remaining years of her life. Fast forward 15 years, and my graduate student self is looking over the comprehensive reading list for Ph.D. candidates wondering how few books she managed to tick off the list in the interim.
I've duly bookmarked the 1001 list, even though it has some serious omissions, in my not-so-humble opinion. One in particular is Edward P. Jones "The Known World." It's definitely worth staying alive to read.
I'm currently reading Barack Obama's "Dreams From My Father." His Djakarta days remind me of my kids' Costa Rica sojourn. Those days were wild, somewhat perilous, and certainly instructive about the world that exists beyond our borders. Yesterday, I finished Michael Chabon's quirky novel "The Yiddish Policemen's Union." I hestitate to recommend it because I don't know how much sense it will make to a reader who knows little about Judaism/Jews/the Yiddish language. It takes place in a fictionalized Sitka, Alaska, where European Jews have resettled post-WWII after Palestine falls through. Prior to Chabon's book, I read Alice Pung's "Unpolished Gem," a memoir about a Chinese-Cambodian family's pursuit of the Australian Dream. The book takes place in Footscray, home to my friend Bernadette who's been sending me Aussie titles I'd probably never see here in the U.S.
Notice a trend? It's no surprise I'm drawn to the ex-pat experience.
My brother was here over the weekend and gave me a gift card to Barnes & Noble. So many books, so little time.
I've duly bookmarked the 1001 list, even though it has some serious omissions, in my not-so-humble opinion. One in particular is Edward P. Jones "The Known World." It's definitely worth staying alive to read.
I'm currently reading Barack Obama's "Dreams From My Father." His Djakarta days remind me of my kids' Costa Rica sojourn. Those days were wild, somewhat perilous, and certainly instructive about the world that exists beyond our borders. Yesterday, I finished Michael Chabon's quirky novel "The Yiddish Policemen's Union." I hestitate to recommend it because I don't know how much sense it will make to a reader who knows little about Judaism/Jews/the Yiddish language. It takes place in a fictionalized Sitka, Alaska, where European Jews have resettled post-WWII after Palestine falls through. Prior to Chabon's book, I read Alice Pung's "Unpolished Gem," a memoir about a Chinese-Cambodian family's pursuit of the Australian Dream. The book takes place in Footscray, home to my friend Bernadette who's been sending me Aussie titles I'd probably never see here in the U.S.
Notice a trend? It's no surprise I'm drawn to the ex-pat experience.
My brother was here over the weekend and gave me a gift card to Barnes & Noble. So many books, so little time.
Tuesday, May 27, 2008
Do Blonds Have More Fun?
I spent 2 hours at the hair salon today, much too long but my 'do needed serious help. Basically, I looked like Little Orphan Annie, except that my hair was two-tone. First the red had to come out; then my natural color had to be added; then blond highlights went in; then about an inch of fuzz was cut off. It took forever, and I spent most of the time trying not to breathe. Not easy. The boys just came home from track practice, and Mark commented that although my hair looks better, he thought we were going to make this decision as a family. He was joking of course, referring to the fact that I let him pick out the color when I did the home dye job back in February.
Now that I have a Jamie Lee Curtis cut, we'll see if I'm offered any commercials to pitch girl yogurt. I certainly know a thing or two about gut issues thanks to my toxic chemical treatments. My gut's fine now, but I can certainly relate to out-of-whack digestive systems.
Some of you might be wondering why I'm willing to use toxic chemicals on my head after all the cancer nonsense. I do know women who went militantly gray post cancer, eschewing all things unnatural. The truth is: I'm so vain. If I only have one nasty brutish and short life to live, let me live it as a blond.
Expletive.
Now that I have a Jamie Lee Curtis cut, we'll see if I'm offered any commercials to pitch girl yogurt. I certainly know a thing or two about gut issues thanks to my toxic chemical treatments. My gut's fine now, but I can certainly relate to out-of-whack digestive systems.
Some of you might be wondering why I'm willing to use toxic chemicals on my head after all the cancer nonsense. I do know women who went militantly gray post cancer, eschewing all things unnatural. The truth is: I'm so vain. If I only have one nasty brutish and short life to live, let me live it as a blond.
Expletive.
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