One week the oncologist says, "We're going to get you WELL!" the next, she says, "Try not to think too far ahead. Just enjoy each day." So I guess it's supposed to be a kind of cancer vacation.
Her latest remark did reset my personal doomsday clock.
The one thing left over from thee shortest bucket list in the world, my bucket list, was to finish my novel The Wind Spindle. I hve no idea if I'll have time or not.
As a person on chemo my immune system is compromised. I go to radiation clinic every day and then go home, although sometimes we do stop for groceries and at the post office. So even though I'm a complusive hand washer and surface cleaner, not everyone is. Coronavirus could give me somwwhat quick, though wickedly unpleaseant, exit.
I'm hoping NOT and like I said, taking strong precautions of my own. But I can't control what others do.
SO...feeeling that second hand zooming toward my personal midnight, I decided I'm going to throw part 1 of the novel on here.
It's a VERY rough draft. I never got around to hiring an editor. My writre's group helped me as much as they could, but again, it's ROUGH. And if you aren't a fan of hard sci-fi or feminist sci-fi you aren't likely to find it rivetting.
But I did get requests, from deqr friends, who want to read what I've been working on.
SO, DUCK! Incoming rough draft......
Update.....Change of Plan.
Sorry 'bout that. The "brain fog" predicted by the oncologist has indeed settled over the mountain top. But before I post chapters from the novel they NEED to be cleaned up, and my computer, in the midst of an update, somehow decided to disable a mouse driver, so I'm unalbe to eidt as I want to. JIm spent hours on this machine already but no idea how much longer it will be.
SO, driving in fog. I may evne have time to get used to this....
Thursday, March 26, 2020
Sunday, March 22, 2020
A Geek's Journey Into Brain Cancer Lesson 1: "You Matter......."
The t-shirt continues, "...Unless you multiply yourself by the speeed of light twice. Then, you energy."
But whether you are in a state of matter or energy, You Are Significant.
So far, it's my first Big Cancer Lesson.
Because in my experience, nobody feels that significant.
At least, not in the way you always wanted. Because you were told to want to be Extraordinary. If all the children are above average, then above average won't cut it in or out of Lake Woebegone. You need to stand out in a way that requires decades of self-shredding, fatigue and digging deep into work, past your broken heart and ragged spirit or tossing yourself into the pit of impossible debt. Then-or maybe then-you will be worthy of the rewards you've been trained to chase, to earn, to kill yourself for. Because in a world of Above Average, you, just plain you without the gruelling years of work or the hundreds of workouts and skipped calories or letters after your name, simply don't matter much. Or so the world needs you to believe.
We were raised on those values, like YouCanNeverWorkHARRRRDENOUGH.
I embraced those values to the point of near self-destruction at times. Migraine making it hard to see? Drive to work anyway, work anyway while throwing up in the trash can, do not be a "whiner".
I admit that the Covid19 quarantines at first seemed like something that was just happening to other people. I was focused on getting to radiation and home again, and on taking my chemo correctly and staying as healthy as possible.
But looking out the window (well, at my friend's feeds) it occurs to me that my recent lesson is also popping up in the zeitgeist.
Because without all the hustle to be extraordinary, who are you? What are you worth?
And what if you, stripped of your abilities or achievements or merits, at your most helpless and vulnerable and messy and damaged and doomed and pathetic, what if YOU- in THAT state- are LOVED?
For me, brain cancer was the fast track to that revelation: that I matter, because I'm loved.
My initial thoughts were, "Game Over. Numbers are not on my side. And anyway, I'm old, my value on the job market is practially zero and it won't get better as I get older. I should pretty much just crawl under the porch."
These were my thoughts because I did not have all the information, and because I have allowed myself to be brainwashed by our culture of commerce system of values. I had many thoughts of a quick exit at first, right after the surgery. The armies of bureaucrats marching through ICU when my brain was still bleeding were profoundly dehumanizing to me. I was barely able to keep up with who everyone was and what they all wanted from me (one actually said, "So, you just need a few boxes ticked off!"as if she was talking to a form). It's also dehumanizing to have your skull cracked open. I felt like a thing. A thing that was now useless, that would cost people a LOT of money, money I could never in the rest of my life make. I wasn't sure I could handle the paperwork either. I've never been good at that, and the idea that I'd be buried in it until I finally died with an excruciating headache (I've already had my share, in 30+ years of searing migraines, and worked through them, thanks very much) had me waking up every morning with a plan for a quick exit that would have trumatized other people, and would have been a missed opportunity not just for my life, but for the people in my life who love me.
My amazing friend JD, who was ready to champion me in the ICU and who stayed with us for a month babysitting my very soul, patiently repeated the words many times: "We love you." It was echoed many, many times by Jim, who is not stingy with love. It pours out of him, not just over me but also all over the dogs and the kitten and into other people's lives. People LOVE Jim. His kindness and warmth are well known to everyone who's worked with him. He's a loving soul with a kind heart.
Dense as I am, the message began to get through: The reason to not crawl under the porch is because it would break the hearts of people who love me.
Another very useful reason is that I rolled a D20 on a certain gene marker , which indicates that I will do very well with the chemo, well enough that the pathology report actually stated the words, "Improved prognosis.". Also, I have very good health for a baseline. No diabetes or heart disease, etc, which also improves my chances of....the word even came up last week with the oncologist....SURVIVAL...
"That's right," said my dear friend JD, her eyes sparkling, "We all want you to score a touchdown."
Radiation and chemo, working together, started last week.
People who love me and showed me over and over with patience and compassion and determination that LOVE is the reason to stay and the reason to keep my feet moving, even in the hole.
I've never been a fast learner, but I'm starting to grasp one lesson from cancer: if there's any reason for anything, LOVE IS IT.
But whether you are in a state of matter or energy, You Are Significant.
So far, it's my first Big Cancer Lesson.
Because in my experience, nobody feels that significant.
At least, not in the way you always wanted. Because you were told to want to be Extraordinary. If all the children are above average, then above average won't cut it in or out of Lake Woebegone. You need to stand out in a way that requires decades of self-shredding, fatigue and digging deep into work, past your broken heart and ragged spirit or tossing yourself into the pit of impossible debt. Then-or maybe then-you will be worthy of the rewards you've been trained to chase, to earn, to kill yourself for. Because in a world of Above Average, you, just plain you without the gruelling years of work or the hundreds of workouts and skipped calories or letters after your name, simply don't matter much. Or so the world needs you to believe.
We were raised on those values, like YouCanNeverWorkHARRRRDENOUGH.
I embraced those values to the point of near self-destruction at times. Migraine making it hard to see? Drive to work anyway, work anyway while throwing up in the trash can, do not be a "whiner".
I admit that the Covid19 quarantines at first seemed like something that was just happening to other people. I was focused on getting to radiation and home again, and on taking my chemo correctly and staying as healthy as possible.
But looking out the window (well, at my friend's feeds) it occurs to me that my recent lesson is also popping up in the zeitgeist.
Because without all the hustle to be extraordinary, who are you? What are you worth?
And what if you, stripped of your abilities or achievements or merits, at your most helpless and vulnerable and messy and damaged and doomed and pathetic, what if YOU- in THAT state- are LOVED?
For me, brain cancer was the fast track to that revelation: that I matter, because I'm loved.
My initial thoughts were, "Game Over. Numbers are not on my side. And anyway, I'm old, my value on the job market is practially zero and it won't get better as I get older. I should pretty much just crawl under the porch."
These were my thoughts because I did not have all the information, and because I have allowed myself to be brainwashed by our culture of commerce system of values. I had many thoughts of a quick exit at first, right after the surgery. The armies of bureaucrats marching through ICU when my brain was still bleeding were profoundly dehumanizing to me. I was barely able to keep up with who everyone was and what they all wanted from me (one actually said, "So, you just need a few boxes ticked off!"as if she was talking to a form). It's also dehumanizing to have your skull cracked open. I felt like a thing. A thing that was now useless, that would cost people a LOT of money, money I could never in the rest of my life make. I wasn't sure I could handle the paperwork either. I've never been good at that, and the idea that I'd be buried in it until I finally died with an excruciating headache (I've already had my share, in 30+ years of searing migraines, and worked through them, thanks very much) had me waking up every morning with a plan for a quick exit that would have trumatized other people, and would have been a missed opportunity not just for my life, but for the people in my life who love me.
My amazing friend JD, who was ready to champion me in the ICU and who stayed with us for a month babysitting my very soul, patiently repeated the words many times: "We love you." It was echoed many, many times by Jim, who is not stingy with love. It pours out of him, not just over me but also all over the dogs and the kitten and into other people's lives. People LOVE Jim. His kindness and warmth are well known to everyone who's worked with him. He's a loving soul with a kind heart.
Dense as I am, the message began to get through: The reason to not crawl under the porch is because it would break the hearts of people who love me.
Another very useful reason is that I rolled a D20 on a certain gene marker , which indicates that I will do very well with the chemo, well enough that the pathology report actually stated the words, "Improved prognosis.". Also, I have very good health for a baseline. No diabetes or heart disease, etc, which also improves my chances of....the word even came up last week with the oncologist....SURVIVAL...
"That's right," said my dear friend JD, her eyes sparkling, "We all want you to score a touchdown."
Radiation and chemo, working together, started last week.
People who love me and showed me over and over with patience and compassion and determination that LOVE is the reason to stay and the reason to keep my feet moving, even in the hole.
I've never been a fast learner, but I'm starting to grasp one lesson from cancer: if there's any reason for anything, LOVE IS IT.
A Geek's Journey Into Brain Cancer; Because No Reasons
Giklda Radner started wiriting her audobiography while she was fighting cancer and wrote the ending ahead of time: that she beat cancer. That's not what happened, of course. Even my ragingly optimistic Oncologist joked that she didn't have a crystal ball; that led to a riffing session about Magic 8 Balls, which are a LOT funnier. Favorite Magic 8 Ball answers in the riffing session included: "''Concentrate and ask again', and 'As I see it, yes'."
To quote Terry Prachett, some people are the types to "stand on a hilltop in a thunderstorm wearing wet copper armour and shouting 'All gods are bastards!”
And it's funny when those people do actually get struck by lightning-but the joke is on them.
I agree with Monty Python that you should "Leave them laughing as you go, Just remember that the last laugh is on you."
Anf if you are truly committed, you'll take a pratfall for the joke.
I'm not used to being that brave, but it would be useful.
The only kind of brave I can relate to is the squeeze-your-eyes-shut-and-jump kind, which is not actually based on bravery, but idiot recklessness. It's the only kind of "courage" I understand.
So while I am not capable of gleaning comfort from the idea that Everything Happens For A Reason (to one raised staunch New England Atheist that is just egotistical hogwash), I do not have an organized Faith to lean on, and I don't believe that The Universe gives a flying fuck about me or my karma, I do take comfort in one certain moment.
That's the moment you squeeze your eyes shut and roll a D20 (FYI, the Magic 8 ball also contains a 20-sided die); it's when you agree to accept your fate. Nature is the DM, and in that game we're all going to have to Roll Initiative. Those of us with cancer are no different (unless you want to stretch the metaphor to the screaming point by saying we with cancer have more damage points, but if you're into RPGs by all means have at it). Every day, for every decision from putting that key in the ignition to deciding between using Roundup or vinegar as a weed killer, we all roll inititive with every decision we make.
I'm just one of those people who needs, even for a nanosecond, to squeeze my eyes shut...
To quote Terry Prachett, some people are the types to "stand on a hilltop in a thunderstorm wearing wet copper armour and shouting 'All gods are bastards!”
And it's funny when those people do actually get struck by lightning-but the joke is on them.
I agree with Monty Python that you should "Leave them laughing as you go, Just remember that the last laugh is on you."
Anf if you are truly committed, you'll take a pratfall for the joke.
I'm not used to being that brave, but it would be useful.
The only kind of brave I can relate to is the squeeze-your-eyes-shut-and-jump kind, which is not actually based on bravery, but idiot recklessness. It's the only kind of "courage" I understand.
So while I am not capable of gleaning comfort from the idea that Everything Happens For A Reason (to one raised staunch New England Atheist that is just egotistical hogwash), I do not have an organized Faith to lean on, and I don't believe that The Universe gives a flying fuck about me or my karma, I do take comfort in one certain moment.
That's the moment you squeeze your eyes shut and roll a D20 (FYI, the Magic 8 ball also contains a 20-sided die); it's when you agree to accept your fate. Nature is the DM, and in that game we're all going to have to Roll Initiative. Those of us with cancer are no different (unless you want to stretch the metaphor to the screaming point by saying we with cancer have more damage points, but if you're into RPGs by all means have at it). Every day, for every decision from putting that key in the ignition to deciding between using Roundup or vinegar as a weed killer, we all roll inititive with every decision we make.
I'm just one of those people who needs, even for a nanosecond, to squeeze my eyes shut...
Friday, March 20, 2020
The New Radio-Active
The Mile High Oncology Radiation Oncology Clinic is staffed by a bunch of grrls who AreGonnaGetYOuWELL! The positive vibe envelopes you when you walk in. You don't mind when they take a mesh mask and peg your head firmly to a table so you can't move.
Radiation is now the crux of my routine. Get up, make the morning coffee and macha, feed the puppies, break the news to the kitten that she canNOT go out in the snow because we won't be home for a couple hours to let her back in, call insurance companies, juggle bills, then try to eat breakfast.
Radiation and chemo, which I'm doing simultaneously, can each have side effects. So far I've dodged most of those except the tastebud thing, which is best expressed by this: YUCK. Yuck, my lips taste horrible, most food is only good for a bite or two, and MANY things zing the revulsion button. This explains the pep talk I got earlier this week by an oncology nurse who began regailing me her Big Recipe ("Try putting Glucerna or something like that in the blender with ice and a banana!") Being a Big Girl, I shook her off. I can afford to lose more than a few pounds. She kept at me. "If it's a mealtime." she said, "Eat even when you're not hungry!" Most people lose between 25 and 60 pounds on chemo, apparently. At the top of the med sheet in blazing caps it screams, "DO NOT TRY TO LOSE WEIGHT ON CHEMOTHERAPY!"
I stopped trying to lose weight on principal years ago. That principal no longer applies to me or my life. Now (cue BeeGees) everything is pretty much about just stayin' alive.
Radiation is a 15-minute visit that's 45 minutess away. Getting there and back was a big logistic, until the quarantines. Suddenly Jim and my friend Kim are pretty housebound, so they don't actually mind running me all over town, particularly in the new light traffic.
Radiation is quick and much nicer than an MRI. For one thing you're not in a tube. You're just lying on a table in an open room as a machine with lots of panels and screens spins slowly around you. It's comical if you open your eyes occasionally because it looks like the machine is curious about you and pops up periodically to get yet another look. The blazing red and green lights do have a piercing laser-y quality, though, so I tend to keep my eyes mostly closed.
The burning flesh and metallic smells and itchy headache pop up when it's almost done, but it's not excruciating or even unpleasant. It's just that by the time we've driven home I feel like I'm halfway up a fourteener and just need a dark room and a blankee and No Damn Calls To Make for a couple hours.
For people unfamiliar with radiation or how it works, I think it's pretty ingenious. A very weak beam of radiation comes through one side of my skull. Another weak beam intersects it from another angle. Where they intersect the radiation is intense enough to fry tumor cells. This IS an exact science-I can't think of anything more exact (one nurse was bragging on the clinic's physicist, saying "He's the smartest person I've ever met.". The radiation oncologist was happily geeking over the location of the 94%-removed tumor because it's nowhere near my brain stem or visual centers. So, ir's relatively easy to treat without risk of life-compromising brain damage like blindness. Not everyone with brain tumors gets so lucky.
My next MRI is in mid-May and until then we don't know much.
That's the thing about cancer. Everything becomes a might.
I don't have my feet under me to do that with ease every day yet. But again, I'm not past the first 100 days, although apparently odds are I will be alive long enough to make that adjustment.
Radiation is now the crux of my routine. Get up, make the morning coffee and macha, feed the puppies, break the news to the kitten that she canNOT go out in the snow because we won't be home for a couple hours to let her back in, call insurance companies, juggle bills, then try to eat breakfast.
Radiation and chemo, which I'm doing simultaneously, can each have side effects. So far I've dodged most of those except the tastebud thing, which is best expressed by this: YUCK. Yuck, my lips taste horrible, most food is only good for a bite or two, and MANY things zing the revulsion button. This explains the pep talk I got earlier this week by an oncology nurse who began regailing me her Big Recipe ("Try putting Glucerna or something like that in the blender with ice and a banana!") Being a Big Girl, I shook her off. I can afford to lose more than a few pounds. She kept at me. "If it's a mealtime." she said, "Eat even when you're not hungry!" Most people lose between 25 and 60 pounds on chemo, apparently. At the top of the med sheet in blazing caps it screams, "DO NOT TRY TO LOSE WEIGHT ON CHEMOTHERAPY!"
I stopped trying to lose weight on principal years ago. That principal no longer applies to me or my life. Now (cue BeeGees) everything is pretty much about just stayin' alive.
Radiation is a 15-minute visit that's 45 minutess away. Getting there and back was a big logistic, until the quarantines. Suddenly Jim and my friend Kim are pretty housebound, so they don't actually mind running me all over town, particularly in the new light traffic.
Radiation is quick and much nicer than an MRI. For one thing you're not in a tube. You're just lying on a table in an open room as a machine with lots of panels and screens spins slowly around you. It's comical if you open your eyes occasionally because it looks like the machine is curious about you and pops up periodically to get yet another look. The blazing red and green lights do have a piercing laser-y quality, though, so I tend to keep my eyes mostly closed.
The burning flesh and metallic smells and itchy headache pop up when it's almost done, but it's not excruciating or even unpleasant. It's just that by the time we've driven home I feel like I'm halfway up a fourteener and just need a dark room and a blankee and No Damn Calls To Make for a couple hours.
For people unfamiliar with radiation or how it works, I think it's pretty ingenious. A very weak beam of radiation comes through one side of my skull. Another weak beam intersects it from another angle. Where they intersect the radiation is intense enough to fry tumor cells. This IS an exact science-I can't think of anything more exact (one nurse was bragging on the clinic's physicist, saying "He's the smartest person I've ever met.". The radiation oncologist was happily geeking over the location of the 94%-removed tumor because it's nowhere near my brain stem or visual centers. So, ir's relatively easy to treat without risk of life-compromising brain damage like blindness. Not everyone with brain tumors gets so lucky.
My next MRI is in mid-May and until then we don't know much.
That's the thing about cancer. Everything becomes a might.
I don't have my feet under me to do that with ease every day yet. But again, I'm not past the first 100 days, although apparently odds are I will be alive long enough to make that adjustment.
Monday, March 16, 2020
The Part-Timer
When you get a cancer diagnosis, it's like being evicted from your life by an asteroid.
But I decided I don't have to STAY evicted. I can reclaim the blast site and set up camp again (after all, we're all just gypsies passing through here).
After facing each day with the hard facts and finding that grieving and sadness were casting shade over my fun, I made the decision; this was also prompted by my radiation schedule. I go to radiation 5 days a week at the same time every day, then at night I take the same chemo meds before bed every night. It reminded me of a part-time job.
So that's how I'm viewing the brain cancer now.
It's a part-time job. I do the job, because people have made it clear that They Love Me, and it's my job to get as healthy as I can and just Be Here Now (although this is a revelation I'm still dealing with, because seriously, am I worth all this fuss?)
But cancer does not get to be my whole life. I get up in the morning and make coffee and feed the dogs, write, clean, catch up with people I love, reach out to support others as I can, go to radiation, etc. My day is mostly me and part of it is about the cancer.
I decide which part.
But I decided I don't have to STAY evicted. I can reclaim the blast site and set up camp again (after all, we're all just gypsies passing through here).
After facing each day with the hard facts and finding that grieving and sadness were casting shade over my fun, I made the decision; this was also prompted by my radiation schedule. I go to radiation 5 days a week at the same time every day, then at night I take the same chemo meds before bed every night. It reminded me of a part-time job.
So that's how I'm viewing the brain cancer now.
It's a part-time job. I do the job, because people have made it clear that They Love Me, and it's my job to get as healthy as I can and just Be Here Now (although this is a revelation I'm still dealing with, because seriously, am I worth all this fuss?)
But cancer does not get to be my whole life. I get up in the morning and make coffee and feed the dogs, write, clean, catch up with people I love, reach out to support others as I can, go to radiation, etc. My day is mostly me and part of it is about the cancer.
I decide which part.
Friday, March 13, 2020
The Concern Tsunami
When doctors find a grade 4 glioma in your brain they schedule surgery right away, and radiation and chemo right after. It all happens so fast that you barely understand what's happening as you're wheeled under the lights with a mask crammed on your face; then teams of doctors and bureaucrats show up a couple of hours afterward to regale you one after another about doing their jobs while you're still hooked up to a hundred tubes in the ICU. You do everything they tell you to do, you get your head cracked open, and then you try to fill out sheafs of insurance paperwork as accurately as you're capable.
So, you get behind on correspondence. It doesn't help when your SIM card malfunctions and you're unable to answer phone calls in real time, (until your dear friend JD helps you fix your phone- and this is just ONE kind of support when you're still off-kilter from brain surgery and adjusting to chemotherapy that is invaluable, magical, wonderful support).
Then you start listening to the 50+ voice messages and reading the stacks of texts and emails you missed, and it's like a tsunami. Your commuication channels are flooded.
So much of it isn't demanding in tone, but rather is tender, loving and kind, that you feel like a complete asshole for getting so far behind.
So, I'm sorry.
It's going to take me a while to catch up with the tsunami.
In a couple weeks, the oncologist tells me, the cumulative effect of rdiation and chemo could make me very fatigued. It's possible there could be complications and other meds that could have different effects, too.
So, I simply can't make other plans at this point. I'm driving in a white-out. I can't tell people what to expect. I've never done this before. And I can't answer individual messages with full awareness yet. I don't have my feet under me yet. And I don't know when I will.
So, as I use now for my every email signature,
Thank You For Your Patience.
So, you get behind on correspondence. It doesn't help when your SIM card malfunctions and you're unable to answer phone calls in real time, (until your dear friend JD helps you fix your phone- and this is just ONE kind of support when you're still off-kilter from brain surgery and adjusting to chemotherapy that is invaluable, magical, wonderful support).
Then you start listening to the 50+ voice messages and reading the stacks of texts and emails you missed, and it's like a tsunami. Your commuication channels are flooded.
So much of it isn't demanding in tone, but rather is tender, loving and kind, that you feel like a complete asshole for getting so far behind.
So, I'm sorry.
It's going to take me a while to catch up with the tsunami.
In a couple weeks, the oncologist tells me, the cumulative effect of rdiation and chemo could make me very fatigued. It's possible there could be complications and other meds that could have different effects, too.
So, I simply can't make other plans at this point. I'm driving in a white-out. I can't tell people what to expect. I've never done this before. And I can't answer individual messages with full awareness yet. I don't have my feet under me yet. And I don't know when I will.
So, as I use now for my every email signature,
Thank You For Your Patience.
Thursday, March 12, 2020
Chemo Keep-Away and the White Knight in the Black Cowboy Hat
Avilla pharmacy is a speciality pharmacy. They specialize in medications like chemotherapy, but also in record phone wait times (HOURS, in fact), cold smuggery and the billion and one ways a bureaucrat can dodge accountability of any kind. After my medication did not show up when promised and the company denied they knew the person who promised it, and after hours on the phone trying to track down my chemo drugs, several dozen times put on hold and a good verbal thrashing or two I was depressed, drained, and the next morning was even throwing up repeatedly from sheer despair about the situation and my inability to handle it. I lost the will to fight.
Luckily, Jim didn't.
Jim has one of the most beautiful male voices I've ever heard. This is crucial for a radio girl because we are surrounded by beautiful male voices all day. A whiney, nasal bleat on a man is a big deal breaker for women in radio.
Jim's voice is a deep, velvety baritone with layers of undertones. It can also become a booming baritone GOD VOICE that startles people and, I swear, makes the very AIR in a room pause nervously in the middle of what it was doing. He does not overuse this voice. But when it does emerge, it has impact.
Jim is also a man with a hard-wired sense of human decency and is often, if not usually, the smartest person in a given room. Jim operates from a moral solidity that many people identify with the midwest: there's things you do and things you don't do and if you don't know the difference you haven't been paying attention on purpose and you need to get with the program. Jim expects people to be decent and do what makes sense. He's also warm and funny. The combination of these traits has nurses and doctors very pleased to see him at every visit. He understands what they're saying, he's kind, he's funny, and he gets it.
BUT if someone should happen to be blatantly obtuse, dishonest, stupid or unkind they could find themselves startled by him and suddenly feeling foolish and guilty and wanting to hide under the desk. It happened on a couple of the phone calls; when Jim interjected the change in tone went from smug and cold to shaky and defensive, simply because the logic had been pointed out and the absence of decency had been called out, and with just a touch of the GOD VOICE.
Also, magically today my chemo medication was in my mailbox at the time it was promised.
Jim does not own a white cowboy hat. But he looks awesome in his black ones. The white horse is invisible, unless you happen to be an asshole.
Luckily, Jim didn't.
Jim has one of the most beautiful male voices I've ever heard. This is crucial for a radio girl because we are surrounded by beautiful male voices all day. A whiney, nasal bleat on a man is a big deal breaker for women in radio.
Jim's voice is a deep, velvety baritone with layers of undertones. It can also become a booming baritone GOD VOICE that startles people and, I swear, makes the very AIR in a room pause nervously in the middle of what it was doing. He does not overuse this voice. But when it does emerge, it has impact.
Jim is also a man with a hard-wired sense of human decency and is often, if not usually, the smartest person in a given room. Jim operates from a moral solidity that many people identify with the midwest: there's things you do and things you don't do and if you don't know the difference you haven't been paying attention on purpose and you need to get with the program. Jim expects people to be decent and do what makes sense. He's also warm and funny. The combination of these traits has nurses and doctors very pleased to see him at every visit. He understands what they're saying, he's kind, he's funny, and he gets it.
BUT if someone should happen to be blatantly obtuse, dishonest, stupid or unkind they could find themselves startled by him and suddenly feeling foolish and guilty and wanting to hide under the desk. It happened on a couple of the phone calls; when Jim interjected the change in tone went from smug and cold to shaky and defensive, simply because the logic had been pointed out and the absence of decency had been called out, and with just a touch of the GOD VOICE.
Also, magically today my chemo medication was in my mailbox at the time it was promised.
Jim does not own a white cowboy hat. But he looks awesome in his black ones. The white horse is invisible, unless you happen to be an asshole.
Friday, March 6, 2020
A Geek's Journey Into Brain Cancer-The Kleenex Box
The super-efficient *plunk* of the Kleenex box is familiar to anyone who leaks an emotion that is not hyper, dancing joy.
The emotional message of the Kleenex box plunked in your lap is: "You made a mess. Clean it up."
Because human emotions are by definition messy, if you let one seep out it's the equivalent of a small jet of diarrhea, and people want that cleaned up NOW.
You can pretty accurately gauge the type of caregiver you're dealing with by whether they use the Kleenex box at all, and how they wield it.
In my experience there are two basic prototypes for an ER Nurse. One uses not only the Kleenex box but also the threat of Last Rites to get you to control your mess. One sees no use for the Kleenex.
Lynn is lean, tight-assed, efficient, razor-nosed, chilly and accurate. She gets the exact information the doctors want in the exact way they want it and they love her for it. Also, just imagine how much doctors love a tight ass (she does warm and soften a bit when she talks about how "athletically inclined" she is).
When I let a tear slide Lynn plunked the Kleenex box ("CLEAN THAT UP.")and asked me if she should get the Chaplain.
"The PRIEST?" I said. "WhuDa Fuck?" (One drop of saline on my cheek and tight-assed Lynn thinks I'm Linda BLAIR?) "I'm New England Post-Transcendentalist." I explained, in what I thought was a kind tone.
Lynn was shocked by my language, both the profanity and the unfamiliar and weirdly specific philosophical stance (New Englanders tend to be very specific about odd things, like the fact that you had better offer MALT vinegar at the fish fry. Don't try to sneak that cider crap onto the table. Celts cheerfully disembowel people for less.)
"Well, alright then, no," Lynn said, flabbergasted.
Here's what the other nurse, Ingrid, did. I started to sob in fear and she turned to me. Her blue eyes locked on mine. She crossed the room in a few steps and scooped me into her arms. I sobbed while she rocked me. She kept rocking me. Eventually I loosened my grip and she sat back, looking at me with deep concern. She knew how truly and deeply fucked my situation is. She didn't try to pretend it wasn't. But she reached out her very arms to me. She made it clear that I had value as a person and that my pain mattered. She also made it clear that when I was with Ingrid I was not alone.
I did also have the vivid feeling that you want Ingrid on your side whether you're about to have your head opened up like an egg or you're charging into Essex with only a short sword and shield. Ingrid, in other words, was clearly of Shield Maiden stock and scared of absolutely fucking nothing. She still did up a mean report and a perfect IV, but she never plunked a Kleenex box.
"But no," you might plead, "That's not what I mean when I hand over the Kleenex box. I just don't know what else to do!" Might I suggest: start by imagining a different way to address someone who is in pain. Start by imagining that the emotion is not offenseive. Shield Maiden Up. Treat the person as if their pain matters. Pretend it's not diarreah. Turn toward them, rather than away. Make eye contact with them. Sit down beside them. Hear them.
And don't order a cleanup.
The emotional message of the Kleenex box plunked in your lap is: "You made a mess. Clean it up."
Because human emotions are by definition messy, if you let one seep out it's the equivalent of a small jet of diarrhea, and people want that cleaned up NOW.
You can pretty accurately gauge the type of caregiver you're dealing with by whether they use the Kleenex box at all, and how they wield it.
In my experience there are two basic prototypes for an ER Nurse. One uses not only the Kleenex box but also the threat of Last Rites to get you to control your mess. One sees no use for the Kleenex.
Lynn is lean, tight-assed, efficient, razor-nosed, chilly and accurate. She gets the exact information the doctors want in the exact way they want it and they love her for it. Also, just imagine how much doctors love a tight ass (she does warm and soften a bit when she talks about how "athletically inclined" she is).
When I let a tear slide Lynn plunked the Kleenex box ("CLEAN THAT UP.")and asked me if she should get the Chaplain.
"The PRIEST?" I said. "WhuDa Fuck?" (One drop of saline on my cheek and tight-assed Lynn thinks I'm Linda BLAIR?) "I'm New England Post-Transcendentalist." I explained, in what I thought was a kind tone.
Lynn was shocked by my language, both the profanity and the unfamiliar and weirdly specific philosophical stance (New Englanders tend to be very specific about odd things, like the fact that you had better offer MALT vinegar at the fish fry. Don't try to sneak that cider crap onto the table. Celts cheerfully disembowel people for less.)
"Well, alright then, no," Lynn said, flabbergasted.
Here's what the other nurse, Ingrid, did. I started to sob in fear and she turned to me. Her blue eyes locked on mine. She crossed the room in a few steps and scooped me into her arms. I sobbed while she rocked me. She kept rocking me. Eventually I loosened my grip and she sat back, looking at me with deep concern. She knew how truly and deeply fucked my situation is. She didn't try to pretend it wasn't. But she reached out her very arms to me. She made it clear that I had value as a person and that my pain mattered. She also made it clear that when I was with Ingrid I was not alone.
I did also have the vivid feeling that you want Ingrid on your side whether you're about to have your head opened up like an egg or you're charging into Essex with only a short sword and shield. Ingrid, in other words, was clearly of Shield Maiden stock and scared of absolutely fucking nothing. She still did up a mean report and a perfect IV, but she never plunked a Kleenex box.
"But no," you might plead, "That's not what I mean when I hand over the Kleenex box. I just don't know what else to do!" Might I suggest: start by imagining a different way to address someone who is in pain. Start by imagining that the emotion is not offenseive. Shield Maiden Up. Treat the person as if their pain matters. Pretend it's not diarreah. Turn toward them, rather than away. Make eye contact with them. Sit down beside them. Hear them.
And don't order a cleanup.
I Shall Not Ride Like Hell For Samara
I've been trying to figure out my stance with this agressive form of brain cancer. So my mind goes back to the mat in the dojo, and how to set my stance.
Thing is, somthitng is gonna getcha. The irony of trying to outrun certain death is beautifully illusrated in one of my favorite Arabic stories, Appoinment at Samara. Just in case it doesn't ring a bell, it goes something like this:
A merchant sends his servant to the marketplace for provisions. The servant comes home white and trembling and tells him that in the marketplace,he saw death . Borrowing the merchant’s horse, he flees at great speed to Samarra, a distance of about 75 miles (125 km), where he believes Death will not find him. The merchant then goes to the marketplace and finds Death, and asks why she is after his servant. Death replies that she was not in pursuit, just surprised to see the esrvant in the marketplace since she had an appointment with him tonight in Samarra.
From years ago on the mat, I remember how it felt to face a martial arts psycho who tried to intimidate me. I was willing to give the match my best, even to get injured, but not to allow him to scare me out of competition. So I will fight, but I will not run. Even if this agressive brain cancer keeps sending out feelers and trying to set up shop in my Self Space.
I keep remembering Churchill's speeach when he made The Decision that England was not going to capitulate to the Germans, so forgive the language. But just now, it suits me.
I shall fight it with radiation and chemo. I will show up early for those hated, skull-rattling MRIs. I shall gratefully acceept every free massage. I shall swim every morning. I shall meditate. I shall rest deeply as I need to, no matter what other people want from me in the moment. I shall treat myself as if I have the value ascribed to me by the people who love me the most. I shall fight with all available means.
I shall put a little fence around each and every day, calculating how I can meet life in the most loving way possible. I shall live according to my dearest values every day I have left to be this Self I now am.
I shall embrace every cup of tea and story and friend's visit and every dog fart with reverence and joy.
But I will not run. I will not jump and quail at shadows. I will not be shaken from my Self by the fear of losing myself. I will not be chased away from the gifts of my own life.
I shall say Hi to Death in the morning and thank her for the new skills aand insights she has given me.
But I shall not ride like Hell for Samara.
Thing is, somthitng is gonna getcha. The irony of trying to outrun certain death is beautifully illusrated in one of my favorite Arabic stories, Appoinment at Samara. Just in case it doesn't ring a bell, it goes something like this:
A merchant sends his servant to the marketplace for provisions. The servant comes home white and trembling and tells him that in the marketplace,he saw death . Borrowing the merchant’s horse, he flees at great speed to Samarra, a distance of about 75 miles (125 km), where he believes Death will not find him. The merchant then goes to the marketplace and finds Death, and asks why she is after his servant. Death replies that she was not in pursuit, just surprised to see the esrvant in the marketplace since she had an appointment with him tonight in Samarra.
From years ago on the mat, I remember how it felt to face a martial arts psycho who tried to intimidate me. I was willing to give the match my best, even to get injured, but not to allow him to scare me out of competition. So I will fight, but I will not run. Even if this agressive brain cancer keeps sending out feelers and trying to set up shop in my Self Space.
I keep remembering Churchill's speeach when he made The Decision that England was not going to capitulate to the Germans, so forgive the language. But just now, it suits me.
I shall fight it with radiation and chemo. I will show up early for those hated, skull-rattling MRIs. I shall gratefully acceept every free massage. I shall swim every morning. I shall meditate. I shall rest deeply as I need to, no matter what other people want from me in the moment. I shall treat myself as if I have the value ascribed to me by the people who love me the most. I shall fight with all available means.
I shall put a little fence around each and every day, calculating how I can meet life in the most loving way possible. I shall live according to my dearest values every day I have left to be this Self I now am.
I shall embrace every cup of tea and story and friend's visit and every dog fart with reverence and joy.
But I will not run. I will not jump and quail at shadows. I will not be shaken from my Self by the fear of losing myself. I will not be chased away from the gifts of my own life.
I shall say Hi to Death in the morning and thank her for the new skills aand insights she has given me.
But I shall not ride like Hell for Samara.
Monday, March 2, 2020
A Hole In One
So, the golfball-sized-glio is out.
I rolled a nat D20 on the surgeon somehow. He got 94% of the beastie.
Apparently it came out faster than anticipated, in just a couple hours rather than twelve.
I remmber how much my head hurt in the OR when they woke me up and how hard it was to concntrate on reciting the months of the year...especially when I could physically feel him sucking out the tumor. There was a sense of change of pressure, not unlike when the the dentist puts that sucking tube into your root canal, exceept it didn't get stuck in my cheek.
I also remembered the brain surgeon exclaiming, "This is a healthy brain!"
I did not have the presence of mind to say, "You clearly haven't been talking to any of my listeners."
I admit it felt as if my mind were a divot driven off the green by a nasty nine-iron. It took over a week for me to start to get my bearings again, physically and emotionally.
"I did say that," Dr Romeo said a few hours later when he visietd me in the ICU. "Mainly to the anesthesiologist. But also the pulsations were..." and he added a vague positive to that, which drifted by me (there's been a lot of mental drift since my head was open on the table). Dr. Romeo also remarked with a vague positive about getting 94% of the tumor out, which apparently is good math for...and he did use this word: Survival.
That word is like a bright pinata hanging above every conversation I have with oncologists, too. They take swings near it regularly after saying, "You're young." I laugh, being now 59 years old and vividly aware of how that drives my value as a worker down. But to oncologists I am just a kid. This kind of thing happens when people are old, in their 70's and 80's. They want me to fight for as many years as my young ass can get. A "hopeful " and "positive" attitude can't come close to the energy you get when an oncologist and sincerely wants you to go out and get you some, you fine young thing.
When I first found out I had this tumor I wrote myself off pretty immediately. This is the deadliest brain cancer, so my first thoughts were mostly in the vein of, "I'm not here for much longer I guess, and will any of this be worth the fight?"
Voicing this aloud to oncologists is the cancer equivalent of the millenial whoop. Oncologists are like soccer Moms to their patients, dispensing meds like orange slices and standing on each other's shoulders to bellow cheers at you that feel like your Mom shouting from the sidelines, "COME ON, GIRL! I KNOW YOU CAN DO IT!"
Still, a cancer diagnosis is a confusing mix of issues all rolling over you like a giant ball of rubber bands, each stamped with strange, mystical, cryptic and alarming things like, "Is now a good time to start believing in God?" "How much WILL this all cost, anyway?" and "Say goodbye to your brain. The Alien Queen has set up her nursery."
Geeks will forgive my language at this juncture. When that rubber band ball rolls over you it's easy to revert to a Hudson-like state of panic: We're in some real pretty shit now, man!
And it would be easy to go the way of Hudson in Aliens if you were actually left alone with it. But people come running onto the field like overrehearsed, methed-up marching bands. The leaping, pom-pom heaving, shouting ranks of Oncologists are only one part of your personal color guard. People who love you show up to remind you that this is not just about getting through chemo and radiation-it's about time you give them. It's about love. It's about taking care of you. And they need, again, need you to do that. It's about truly growing up, accepting the death sentence we all have, and loving into every day as a gift.
There's every reason to climb atop the pyramid and do a triple-back flip.
Even if you think you can't.
Because, be real. You could do it.
Once.
I rolled a nat D20 on the surgeon somehow. He got 94% of the beastie.
Apparently it came out faster than anticipated, in just a couple hours rather than twelve.
I remmber how much my head hurt in the OR when they woke me up and how hard it was to concntrate on reciting the months of the year...especially when I could physically feel him sucking out the tumor. There was a sense of change of pressure, not unlike when the the dentist puts that sucking tube into your root canal, exceept it didn't get stuck in my cheek.
I also remembered the brain surgeon exclaiming, "This is a healthy brain!"
I did not have the presence of mind to say, "You clearly haven't been talking to any of my listeners."
I admit it felt as if my mind were a divot driven off the green by a nasty nine-iron. It took over a week for me to start to get my bearings again, physically and emotionally.
"I did say that," Dr Romeo said a few hours later when he visietd me in the ICU. "Mainly to the anesthesiologist. But also the pulsations were..." and he added a vague positive to that, which drifted by me (there's been a lot of mental drift since my head was open on the table). Dr. Romeo also remarked with a vague positive about getting 94% of the tumor out, which apparently is good math for...and he did use this word: Survival.
That word is like a bright pinata hanging above every conversation I have with oncologists, too. They take swings near it regularly after saying, "You're young." I laugh, being now 59 years old and vividly aware of how that drives my value as a worker down. But to oncologists I am just a kid. This kind of thing happens when people are old, in their 70's and 80's. They want me to fight for as many years as my young ass can get. A "hopeful " and "positive" attitude can't come close to the energy you get when an oncologist and sincerely wants you to go out and get you some, you fine young thing.
When I first found out I had this tumor I wrote myself off pretty immediately. This is the deadliest brain cancer, so my first thoughts were mostly in the vein of, "I'm not here for much longer I guess, and will any of this be worth the fight?"
Voicing this aloud to oncologists is the cancer equivalent of the millenial whoop. Oncologists are like soccer Moms to their patients, dispensing meds like orange slices and standing on each other's shoulders to bellow cheers at you that feel like your Mom shouting from the sidelines, "COME ON, GIRL! I KNOW YOU CAN DO IT!"
Still, a cancer diagnosis is a confusing mix of issues all rolling over you like a giant ball of rubber bands, each stamped with strange, mystical, cryptic and alarming things like, "Is now a good time to start believing in God?" "How much WILL this all cost, anyway?" and "Say goodbye to your brain. The Alien Queen has set up her nursery."
Geeks will forgive my language at this juncture. When that rubber band ball rolls over you it's easy to revert to a Hudson-like state of panic: We're in some real pretty shit now, man!
And it would be easy to go the way of Hudson in Aliens if you were actually left alone with it. But people come running onto the field like overrehearsed, methed-up marching bands. The leaping, pom-pom heaving, shouting ranks of Oncologists are only one part of your personal color guard. People who love you show up to remind you that this is not just about getting through chemo and radiation-it's about time you give them. It's about love. It's about taking care of you. And they need, again, need you to do that. It's about truly growing up, accepting the death sentence we all have, and loving into every day as a gift.
There's every reason to climb atop the pyramid and do a triple-back flip.
Even if you think you can't.
Because, be real. You could do it.
Once.
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