Ex husband says, "You know, I never changed beneficiaries on the life insurance policy after our divorce." (It's worth about $600,000)
Me: "Damn! Why couldn't you be the one to die first?"
(After a few minutes)
Ex husband: "Have you always been like this?"
Me: "Yup"
------------------------
Liz A: "If anyone needs a miracle right now, it's you."
Me: "Either a miracle, or lots and lots of money to spend before I die."
Friday, September 18, 2009
The Cancer Roller-Coaster
I finally understand why people give up when this disease is progressing. The highs, the lows, the fears and uncertainties of being sick with stage IV disease can be just too much sometimes. I actually thought about it a couple of times..."Okay, let's quit all this and I'll just crawl into bed, stoke up on pain meds, and go where this is inevitably going to go." I didn't want anymore good news or bad news or long drives to talk to the experts or having to tell all that good news/bad news to people or just trying to figure it all out, knowing I have to be the one to make the decision. Ultimately. About my treatment.
I'm not depressed so much as just world-weary. "Come to me, all you who are burdened, and I will give you rest." Jesus, I need rest on so many levels! Let me curl up into a little fuzzy ball, with my dog right next to me, and not come out for awhile.
We visited a couple zillion doctors. No, make that two, plus some radiologists in the background. Down to Chicago's Advanced Cancer Clinic (they do all kinds of marvelous things there) where Dr. Fleming impressed the heck out of me with her encyclopedic knowledge of how various cancer drugs work and what she would recommend and not recommend. Then, later, to Froederdt, a very compassionate Dr. John Charlson, who got my CT's read yet again (further adding to our confusion - progression? regression? a combination of both?) but who was willing to just say right out, "I think you should continue on Avastin/Gemzar."
We were searching for certainty (we is me and my former husband, who came with me on these trips, bless him) and got as close as we could, but no cigar. I DO feel better, generally speaking, though I have to eat little small meals all day long and not big greasy ones. I'm miserable if I overeat. I can even keep my portions down and still be miserable if the food is rich - like those 3 -4 bites of cheesecake at the Cheesecake Factory the other day. I do best if I just graze - a peach here, some crackers and hummus there, a piece of cheese or a bite of turkey...
We are hoping that my feeling better is the clinical sign we should follow the current regimen. And we hope it buys me more time.
I'm not depressed so much as just world-weary. "Come to me, all you who are burdened, and I will give you rest." Jesus, I need rest on so many levels! Let me curl up into a little fuzzy ball, with my dog right next to me, and not come out for awhile.
We visited a couple zillion doctors. No, make that two, plus some radiologists in the background. Down to Chicago's Advanced Cancer Clinic (they do all kinds of marvelous things there) where Dr. Fleming impressed the heck out of me with her encyclopedic knowledge of how various cancer drugs work and what she would recommend and not recommend. Then, later, to Froederdt, a very compassionate Dr. John Charlson, who got my CT's read yet again (further adding to our confusion - progression? regression? a combination of both?) but who was willing to just say right out, "I think you should continue on Avastin/Gemzar."
We were searching for certainty (we is me and my former husband, who came with me on these trips, bless him) and got as close as we could, but no cigar. I DO feel better, generally speaking, though I have to eat little small meals all day long and not big greasy ones. I'm miserable if I overeat. I can even keep my portions down and still be miserable if the food is rich - like those 3 -4 bites of cheesecake at the Cheesecake Factory the other day. I do best if I just graze - a peach here, some crackers and hummus there, a piece of cheese or a bite of turkey...
We are hoping that my feeling better is the clinical sign we should follow the current regimen. And we hope it buys me more time.
Thursday, September 3, 2009
Avastin, in the Gemzar System, outside the Navelbine Quadrant...
Liz and I were laughing the other day at how these chemo drugs sound like planets out of science fiction. "And Princess Adria, ruling from planet Velcade, declares war on the Titrate peoples who have taken Adrians as slaves..."
It was hard to hear the Navelbine wasn't working. The one comfort I initially had in all this was the cancer's responsiveness to treatments. Apparently, like some invading host, it gets its strength from my liver's blood supply. I left the doctor's office, went to sit in my chemo chair, preparing for infusion, and had a quiet cry. Beth, the onc nurse I get most often, gave me a big hug again. Assured me THIS one will work.
I do feel better on the Gemzar/Avastin combo, tomorrow we find out if we're making any progress. CT scan.
I'm praying for a miracle. It's the only thing that will do it now.
I daydream, sometimes, of what it would be like if I got that miracle. If the cancer went into remission, my heart stablized, and I was here to tell about it in five, ten years. What would I do? I would have to sell my house...but I'd move, get a job, get Bekah out of school, maybe...apply to the Iowa Writer's Workshop...or move to Palm Springs...or take a little church somewhere in the middle of nowhere...or go live by my Dad and Sue, help them out. (Bekah and I would love to do that now, but her father says no.) Or maybe move to Racine, be closer to Siena Center...I don't know. Do a few years of mission work here in the US. Or maybe some combination thereof.
But it's just one more thing to mourn, you know? The loss of a future.
It was hard to hear the Navelbine wasn't working. The one comfort I initially had in all this was the cancer's responsiveness to treatments. Apparently, like some invading host, it gets its strength from my liver's blood supply. I left the doctor's office, went to sit in my chemo chair, preparing for infusion, and had a quiet cry. Beth, the onc nurse I get most often, gave me a big hug again. Assured me THIS one will work.
I do feel better on the Gemzar/Avastin combo, tomorrow we find out if we're making any progress. CT scan.
I'm praying for a miracle. It's the only thing that will do it now.
I daydream, sometimes, of what it would be like if I got that miracle. If the cancer went into remission, my heart stablized, and I was here to tell about it in five, ten years. What would I do? I would have to sell my house...but I'd move, get a job, get Bekah out of school, maybe...apply to the Iowa Writer's Workshop...or move to Palm Springs...or take a little church somewhere in the middle of nowhere...or go live by my Dad and Sue, help them out. (Bekah and I would love to do that now, but her father says no.) Or maybe move to Racine, be closer to Siena Center...I don't know. Do a few years of mission work here in the US. Or maybe some combination thereof.
But it's just one more thing to mourn, you know? The loss of a future.
Wednesday, September 2, 2009
Chemo Brain (Article by Dan Barry)
I loved this column - so true, so true
Cases
My Brain on Chemo: Alive and Alert
By DAN BARRY
Published: August 31, 2009 New York Times
Within the chemotherapy alumni corps there exists a mutual respect not unlike the bond shared by veterans of war. Sometimes that respect is silently conveyed; not everyone wants to talk about it. And sometimes it is shared in the shorthand of the battle-hardened.
Where?
Esophagus.
Who?
Sloan-Kettering.
What kind?
Cisplatin, fluorouracil, Drano,
Borax ... .
Side effects?
The usual: nausea, vomiting, hair loss. And the toes are still numb.
Yeah.
At this point the two chemo alums may begin to sense a phantom metallic taste at the back of their throat, a taste sometimes prompted by the intravenous infusion of the corrosive chemicals intended to save their lives. A strong drink might be in order; maybe two.
With that first, taste-altering sip, the two might begin to discuss another side effect that has received attention lately, the one rudely called “chemo brain”: the cognitive fogginess that some patients experience after completing their regimen. That fogginess does not always completely lift, and oncologists are now taking seriously what they might once have dismissed as a complaint rooted in advanced age or cancer fatigue.
For me, reading about chemo brain has resurrected that faint taste of metal. I underwent chemotherapy in 1999 and again in 2004, thanks to a profoundly unwelcome recurrence. Depending on one’s perspective, I was both unfortunate and fortunate. Unfortunate in that I endured all the concomitant fears and indignities, twice. Fortunate in that I had the option of chemotherapy, twice. Not all cancers respond; not everyone is so lucky.
I experienced all the typical side effects. Nausea: for several days at a time, though vomiting sometimes broke the monotony. Hair loss: I was balding anyway, so chemo saved me from comb-over delusions. Neuropathy: even now, my toes feel as if they were wrapped in cotton.
And, I now think, chemo brain — but a form that seems to be the common definition’s opposite. My self-diagnosis is that I had a pre-existing case of fogginess that lifted during and immediately after my chemotherapy regimen: I suddenly experienced acute clarity. Then, as the effects and memory of chemotherapy faded, my confusion returned. Twice.
In 1999, before the diagnosis of cancer and the prognosis of let’s hope for the best, I was enveloped in the haze of the everyday. Rather than rejoicing in a loving wife, a daughter not yet 2, a job I enjoyed — in being, simply, 41 — I created felonies out of matters not worth a summons. Traffic jams. Work conflicts. No Vienna Fingers in the cupboard. Felonies all.
Cancer, as is often said, tends to focus the mind. But my diagnosis hovered in the theoretical until the moment I began the first of six rounds of chemotherapy, each one requiring a five-day hospital stay. The nurse hung bags of clear, innocent-looking liquid from an IV pole, found a plump vein along my right arm — and the fog slowly lifted.
Sickened by the mere smell of food, I suddenly saw the wonder in the most common foods: an egg, a hard-boiled egg. Imprisoned and essentially chained to an IV pole, I would stare out my hospital room window at the people below, and feel a rush of the purest envy for their routine pursuits. Imagining the summer night air blowing cool through sweat-dampened shirts, I’d think how good a $3 ice cream would taste right about now, or a $5 beer, and how nice it would be to watch a baseball game of no consequence.
Men acting like boys, hitting, throwing, running on grass. I used to play baseball.
In the morning, after urinating away the remnants of poisons pumped into me, I would roll my IV-pole partner back to the window and study again the people below, moving, hustling, ambling, to jobs, to appointments, to a diner, maybe, for one of the fried-egg sandwiches served countless times every morning in Manhattan.
Gradually, from midsummer to late fall, the chemotherapy transformed me into a bald guy whose pallor was offset only by the hint of terror in his eyes. But the chemo also wiped away the muddle, revealing the world in all its mundane glory. I won’t tell you that I wept at the sight of a puppy. But I did linger over my sleeping daughter to watch her tiny chest rise and fall. I did savor the complexities of a simple olive. I did notice fireflies, those dancing night sparks I had long ago stopped seeing.
After the chemotherapy, radiation and a few weeks to allow things to settle down, as my doctor put it, I was declared “clean” in February 2000. Never again, I vowed, would I take these simple things for granted. I was blind, but now I see.
The fog, of course, returned as the effects and memory of chemo faded, no matter that my wife and I were now blessed with two daughters. How I hated traffic jams. And the Vienna Fingers! Who ate the last Vienna Finger?
Then, in the late spring of 2004, probably while I was railing about something eminently unimportant, my cancer impolitely returned. Once again I felt the frigid breath of mortality at my neck. I also felt like a fool. What is the use of surviving cancer if you don’t learn from it? Are improved by it? Am I so thick that I need to receive the life-is-precious message twice?
I returned to Sloan-Kettering for more chemotherapy and more of the same side effects — including my own manifestation of chemo brain. Fog lifted, world revealed.
After the chemotherapy came major surgery, which provided the exclamation point to whatever chemo was trying to tell me. Once again I was declared clean. And this time, by God! This time!
I became a walking platitude, telling friends without a trace of irony to live every day as though it were their last. Because, man, I’ve been there. And if I weren’t so repressed I’d give you a hug.
Slowly, insidiously, the fog of the everyday has returned to enshroud me. It came in wispy strips, a little more, then a little more, wrapping me like a mummy. Just the other day, in the car with my wife and my two daughters, I began railing about being stuck in a traffic jam.
Perspective, my wife said. Perspective.
I could not hear her. You see, I’m struggling with this pre-existing human condition.
Dan Barry writes the “This Land” column in The New York Times.
Cases
My Brain on Chemo: Alive and Alert
By DAN BARRY
Published: August 31, 2009 New York Times
Within the chemotherapy alumni corps there exists a mutual respect not unlike the bond shared by veterans of war. Sometimes that respect is silently conveyed; not everyone wants to talk about it. And sometimes it is shared in the shorthand of the battle-hardened.
Where?
Esophagus.
Who?
Sloan-Kettering.
What kind?
Cisplatin, fluorouracil, Drano,
Borax ... .
Side effects?
The usual: nausea, vomiting, hair loss. And the toes are still numb.
Yeah.
At this point the two chemo alums may begin to sense a phantom metallic taste at the back of their throat, a taste sometimes prompted by the intravenous infusion of the corrosive chemicals intended to save their lives. A strong drink might be in order; maybe two.
With that first, taste-altering sip, the two might begin to discuss another side effect that has received attention lately, the one rudely called “chemo brain”: the cognitive fogginess that some patients experience after completing their regimen. That fogginess does not always completely lift, and oncologists are now taking seriously what they might once have dismissed as a complaint rooted in advanced age or cancer fatigue.
For me, reading about chemo brain has resurrected that faint taste of metal. I underwent chemotherapy in 1999 and again in 2004, thanks to a profoundly unwelcome recurrence. Depending on one’s perspective, I was both unfortunate and fortunate. Unfortunate in that I endured all the concomitant fears and indignities, twice. Fortunate in that I had the option of chemotherapy, twice. Not all cancers respond; not everyone is so lucky.
I experienced all the typical side effects. Nausea: for several days at a time, though vomiting sometimes broke the monotony. Hair loss: I was balding anyway, so chemo saved me from comb-over delusions. Neuropathy: even now, my toes feel as if they were wrapped in cotton.
And, I now think, chemo brain — but a form that seems to be the common definition’s opposite. My self-diagnosis is that I had a pre-existing case of fogginess that lifted during and immediately after my chemotherapy regimen: I suddenly experienced acute clarity. Then, as the effects and memory of chemotherapy faded, my confusion returned. Twice.
In 1999, before the diagnosis of cancer and the prognosis of let’s hope for the best, I was enveloped in the haze of the everyday. Rather than rejoicing in a loving wife, a daughter not yet 2, a job I enjoyed — in being, simply, 41 — I created felonies out of matters not worth a summons. Traffic jams. Work conflicts. No Vienna Fingers in the cupboard. Felonies all.
Cancer, as is often said, tends to focus the mind. But my diagnosis hovered in the theoretical until the moment I began the first of six rounds of chemotherapy, each one requiring a five-day hospital stay. The nurse hung bags of clear, innocent-looking liquid from an IV pole, found a plump vein along my right arm — and the fog slowly lifted.
Sickened by the mere smell of food, I suddenly saw the wonder in the most common foods: an egg, a hard-boiled egg. Imprisoned and essentially chained to an IV pole, I would stare out my hospital room window at the people below, and feel a rush of the purest envy for their routine pursuits. Imagining the summer night air blowing cool through sweat-dampened shirts, I’d think how good a $3 ice cream would taste right about now, or a $5 beer, and how nice it would be to watch a baseball game of no consequence.
Men acting like boys, hitting, throwing, running on grass. I used to play baseball.
In the morning, after urinating away the remnants of poisons pumped into me, I would roll my IV-pole partner back to the window and study again the people below, moving, hustling, ambling, to jobs, to appointments, to a diner, maybe, for one of the fried-egg sandwiches served countless times every morning in Manhattan.
Gradually, from midsummer to late fall, the chemotherapy transformed me into a bald guy whose pallor was offset only by the hint of terror in his eyes. But the chemo also wiped away the muddle, revealing the world in all its mundane glory. I won’t tell you that I wept at the sight of a puppy. But I did linger over my sleeping daughter to watch her tiny chest rise and fall. I did savor the complexities of a simple olive. I did notice fireflies, those dancing night sparks I had long ago stopped seeing.
After the chemotherapy, radiation and a few weeks to allow things to settle down, as my doctor put it, I was declared “clean” in February 2000. Never again, I vowed, would I take these simple things for granted. I was blind, but now I see.
The fog, of course, returned as the effects and memory of chemo faded, no matter that my wife and I were now blessed with two daughters. How I hated traffic jams. And the Vienna Fingers! Who ate the last Vienna Finger?
Then, in the late spring of 2004, probably while I was railing about something eminently unimportant, my cancer impolitely returned. Once again I felt the frigid breath of mortality at my neck. I also felt like a fool. What is the use of surviving cancer if you don’t learn from it? Are improved by it? Am I so thick that I need to receive the life-is-precious message twice?
I returned to Sloan-Kettering for more chemotherapy and more of the same side effects — including my own manifestation of chemo brain. Fog lifted, world revealed.
After the chemotherapy came major surgery, which provided the exclamation point to whatever chemo was trying to tell me. Once again I was declared clean. And this time, by God! This time!
I became a walking platitude, telling friends without a trace of irony to live every day as though it were their last. Because, man, I’ve been there. And if I weren’t so repressed I’d give you a hug.
Slowly, insidiously, the fog of the everyday has returned to enshroud me. It came in wispy strips, a little more, then a little more, wrapping me like a mummy. Just the other day, in the car with my wife and my two daughters, I began railing about being stuck in a traffic jam.
Perspective, my wife said. Perspective.
I could not hear her. You see, I’m struggling with this pre-existing human condition.
Dan Barry writes the “This Land” column in The New York Times.
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