I did something new yesterday. I was the guest speaker for the Rhode Island Blood Center at a meeting of a local Rotary Club. The older I get, the more I appreciate new experiences, and this was certainly one of those.
Not so much the speaking part--I've done that here and there--as the glimpse into a convivial fraternal order, complete with rousing songs and corny customs. Lunch was served, and even the scary meatloaf was quite tasty. The only thing missing was festive hats, although I think that's a different group.
I was given 15 minutes to talk up the importance of donating blood. The jocularity of the crowd made me realize I should spice up the serious nature of my remarks with not humor exactly, but at least something compelling. I informed the audience that I would tell them two stories.
First, I told the story about my husband and how he's been regularly donating to the RIBC since 2003. He has numerous mugs and posters to show for his generosity. I told them how he actually enjoys the once-monthly platelet donations, relaxing in a comfy chair, nibbling cookies and sipping juice, chatting with the nurses and other personnel he's come to know over the years, maybe reading or snoozing. It's not a bad way to end a hectic day at work.
Story number two was my leukemia story, the play by play of my diagnosis and treatment, with an emphasis on my reliance on the local blood supply to keep me alive when my counts were in the basement. Readers, I had them. I told them you never know what lurks around the corner, an accident or illness or emergency operation where suddenly you or a loved one must have access to a safe and adequate blood supply.
I'm hoping that my give blood-get blood stories opened a vein in the members of my audience and that the blood flow will be copious. While I had their attention, I also made a shameless plug for cord blood donation and signing on to be a bone marrow donor with the National Marrow Registry.
I look forward to speaking to potential donors in the future, especially high schoolers. It's good to get people hooked on lifesaving when they're young. I have the hook, sharpened by the irony of my two stories.
Friday, January 9, 2009
Monday, January 5, 2009
Two Down, One To Go
My clinic visits have been stretched to every three months now. When I went from every month to every two, I started experiencing relapse anxiety at the midway mark. I was so sure I'd relapsed, it took a winch to yank me from the mucky funk. By the time I finally saw my doctor on November 5th, the post-Election Day high had displaced most of the remaining worry. My counts were fine, and my doctor said he'd see me in three months. Three months? Shouldn't I have a monthly blood test or something? Not unless you want to. I decided to be brave little patient.
Today marks two months since my last appointment, which means I have another month to go until I see my doctor and have my blood tested. I think about relapse at least once a day, but I seem to have developed a few coping mechanisms--tricks really--that keep me from dwelling on the cursed "r" word as much as I once did.
I have to admit I was getting a little too close to the edge earlier today. I developed a cold two weeks ago, and although it's been gone for a while, my nose still runs from time to time and I occasionally cough. Since I "normally" recover from colds in a day or three, I started thinking maybe something was wrong. I felt my forehead. No fever. I looked for bruises while I was in the shower. Not a one. I'd run two miles earlier this morning at my usual pokey pace, and I hadn't had any trouble breathing. My energy level has been excellent. As a matter of fact, I spent Saturday in marathon mode, cramming in so many activities I'd make you tired if I recounted them all. You might also think I'm insanely driven, and you'd be right.
The bottom line? I haven't relapsed. At least I don't think I have. Once diagnosed with leukemia, you never have 100% certainty. Like a recovering addict, you're day-to-day, constantly facing and checking the temptation to indulge your anxieties. You try to keep busy. You try to keep your mind as far from the dark place as possible through meditating, exercising, writing, knitting or whatever it is you do to keep your negative thoughts in check. Sometimes it works; sometimes it doesn't. Maybe someday I'll get so good at banishing r-anxiety I'll merely conjure a word or image that will bounce me off the worry pit's rim like a red rubber ball. This is nearly impossible to imagine right now, but I want to believe it can happen.
I have 30 days to practice the concept. Wish me luck.
Today marks two months since my last appointment, which means I have another month to go until I see my doctor and have my blood tested. I think about relapse at least once a day, but I seem to have developed a few coping mechanisms--tricks really--that keep me from dwelling on the cursed "r" word as much as I once did.
I have to admit I was getting a little too close to the edge earlier today. I developed a cold two weeks ago, and although it's been gone for a while, my nose still runs from time to time and I occasionally cough. Since I "normally" recover from colds in a day or three, I started thinking maybe something was wrong. I felt my forehead. No fever. I looked for bruises while I was in the shower. Not a one. I'd run two miles earlier this morning at my usual pokey pace, and I hadn't had any trouble breathing. My energy level has been excellent. As a matter of fact, I spent Saturday in marathon mode, cramming in so many activities I'd make you tired if I recounted them all. You might also think I'm insanely driven, and you'd be right.
The bottom line? I haven't relapsed. At least I don't think I have. Once diagnosed with leukemia, you never have 100% certainty. Like a recovering addict, you're day-to-day, constantly facing and checking the temptation to indulge your anxieties. You try to keep busy. You try to keep your mind as far from the dark place as possible through meditating, exercising, writing, knitting or whatever it is you do to keep your negative thoughts in check. Sometimes it works; sometimes it doesn't. Maybe someday I'll get so good at banishing r-anxiety I'll merely conjure a word or image that will bounce me off the worry pit's rim like a red rubber ball. This is nearly impossible to imagine right now, but I want to believe it can happen.
I have 30 days to practice the concept. Wish me luck.
Friday, January 2, 2009
2008: A Year Without Leukemia
I got into this leukemia business in March 2006. With much toasting and anxiety-tinged hope, I looked forward to 2007 being a much healthier year for me. It started out that way. I was teaching ESL classes, and I'd been appointed the library's first grant writer. I was looking forward to new challenges and most of all, staying in remission.
Unfortunately, the blood cancer bus pulled up next to me in May 2007 and I had no choice but to board that dark beast once again. I spent the remainder of that year as a science experiment, receiving a double umbilical cord transplant at Dana-Farber Cancer Institute in September. Bald and somewhat broken, I gingerly walked toward 2008.
Many people would like to forget 2008, the year in which their financial health seriously deteriorated. Our personal finances are ailing like everyone else's. Our retirement now stands on one leg and is hopping further and further into the future. Our home lost value; medical expenses were up; employment was down. For the next 4 years, we'll have two kids in college. The money we started putting aside for tuition when the kids were babies has, like most
investments, decreased in value while tuition steadily rises. This is the stuff that wakes you in the middle of the night with chest pain.
No matter how bleak the financial picture was in 2008 (and continues in 2009), I cannot let the calendar turn without observing that for me, it was a very good year, a year in which I didn't have leukemia. Remission is a fragile truce, but I'm approaching 18 disease-free months.
Here's to health in 2009, for all of us.
Unfortunately, the blood cancer bus pulled up next to me in May 2007 and I had no choice but to board that dark beast once again. I spent the remainder of that year as a science experiment, receiving a double umbilical cord transplant at Dana-Farber Cancer Institute in September. Bald and somewhat broken, I gingerly walked toward 2008.
Many people would like to forget 2008, the year in which their financial health seriously deteriorated. Our personal finances are ailing like everyone else's. Our retirement now stands on one leg and is hopping further and further into the future. Our home lost value; medical expenses were up; employment was down. For the next 4 years, we'll have two kids in college. The money we started putting aside for tuition when the kids were babies has, like most
investments, decreased in value while tuition steadily rises. This is the stuff that wakes you in the middle of the night with chest pain.
No matter how bleak the financial picture was in 2008 (and continues in 2009), I cannot let the calendar turn without observing that for me, it was a very good year, a year in which I didn't have leukemia. Remission is a fragile truce, but I'm approaching 18 disease-free months.
Here's to health in 2009, for all of us.
Wednesday, December 24, 2008
Next Year Is Here
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.
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 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.
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