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.
Friday, October 31, 2008
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.
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