So...here it is:
BUY ALL MEDICAL / PSYCHOLOGICAL INSURANCE PRODUCTS AT WORK. It's a bettin' game. They're betting you don't get bad sick or seek full treatment, but if you need to you will be so grateful you bet on being a fragile human who might need help. I know a bigger paycheck matters, too, but buy what you can....INCLUDING short-term and long term disability and critical illness. You never know. I am SO GRATEFUL to my past self who scrolled through enrollment and thought, "Well, I'm gonna be 60. I'll load up even if it costs me." THANK YOU PAST SELF!!!!!!!!
BUY ONE MORE THING: A DIRECT PAY MEDICAL SERVICE.
I know. MO' money. But hear me out.
I pay PeakMed direct pay service $80.00 a month and then I can go in next day or day-of for an ear infection or whatever at NO COST. There's no paperwork or fighting with insurance. They work with it, but they.......are you sitting down?...................they HELP YOU.
January 2020, WEEK 2. I go to Peak Med after a fall. DR Josh Chow asks me about my migraines in the conversation about my balance? and my headaches? "I'm fine" I say, but weeks later when I notice that I'm having trouble speaking and the left side of my face is not working properly, I go back.
"What do you take for migraines?" His young face was dark with worry. "Maxalt?"
He made me do the drunk driving test and reflex and other tests.
"I think you may have had a stroke," he said, I want you to get an MRI."
I gasped. "I don't know if I an afford that." He didn't give me the used car salesman line that "I couldn't afford NOT to"..........he said...........(are you sitting down?)....."We can get you in tomorrow for an MRI for a flat $500.00. without insurance." HE looked at me gravely. "This is your BRAIN-" I interrupted him. "I'm already there."
The next day's horrors only began with the MRI and climaxed with Dr Josh very, very reluctantly telling me over the phone that I had deadly aggressive brain cancer, but also that they had found a neurosurgeon within my insurance network, had precertified me, and made the appointment for me. I was all set, I just had to show up and fill out their paperwork.
Out of paranoia I went to my insurance PC later and told her the story, but mainly to get the almighty REFERRALS (make an effort to speak some insurance Vogon lingo-it could save your butt-but never listen to their poetry). She tested my reflexes, etc.
She stood back and shrugged.
"Your neurological signs look fine to me,' she chirped.
"So, you wouldn't have ordered an MRI?"
She thought about this. "Oh, at some point I'm sure we would have," she said breezily, and I thought about how narrowly I had escaped spending thirteen to fifteen weeks (the average survival after diagnosis) in an excruciating headache haze before dying in pain-possibly while at the wheel.
One thing NOT to buy.....
Don't buy into anyone else's idea of Why You Have Cancer. That's just playing Gawd. It is none of their damned business. Just because somebody is high on religion or read a New Age book doesn't give them the right to tell you that your karma is bad or you didn't eat enough kale. FUCK THEM. FUCK THEM RUNNING-away from you. Don't fall for any of this bullshit. BE FIERCE on this one if you have to be. Demand to see their GOD CARD if nothing else works, but send them packing.
One more thing that can't be bought......
People who truly love you will show up like CRAZY. My boyfriend instantly signed up to be my caregiver and he has been my ROCK, my therapist, my comfort and joy. One friend came to stay with us for a month to babysit my traumatized little soul and help me start putting myself back together. She also drove me to radiation a lot. She and another friend STILL call me EVERY SINGLE DAY. My lovely neighbor brought over a cake and flowers to celebrate the end of radiation.
You can't nurture your relationships too much. Find people who truly GET you and love you and accept you, and whom you feel the same way about, and show up for them. At every opportunity. It makes it easier to lean on THEM when you have to-because they won't have it any other way and you will just have to deal with that. Loving people tend to be badasses.
There's my big ADVICE column.
Thursday, April 23, 2020
Sunday, April 19, 2020
SLASH BURN POISON DONE (for now)
Treament ends Tuesday.
It always starts with the surgery (slash) followed by radiation (burn) and chemo (poison). That's the Standard Course of Treatment for glio blastomas nationally.
I got great care from the surgeon and the oncologists.
I've only lost 25 pounds. Not bad, actually. I didn't have to go on steroids to complete treatmtent like some people do. My tongue tasts like an aluminum brick, my head throbs at the slightest provocation, gettting food down is a fight, and my energy is in the neighborhood of -110%. But I've just about made it through.
Then, I get a break for six weeks before we strap the R2d2 thingy (OpTune) on my head for eighteen hours a day. If that doesn't hold the cancer back, we start clinical trials.
It's amazing how many people will blame you for things you have no part in, but cancer changes all the arguments. You have to be a serious dick to blame people for their own cancer, though it's common practice to hold a college student accountable when she's assaulted (was she drunk? wearing a short skirt? led him on, maybe?). Got a little dark there, but I just happened to notice when sudddenly people throw their hands up on your behalf. Nobody has asked me how much fried food I ate (some, but also salads and green tea) or how stressed out I was on a daily basis (WICKED-always waiting to be laid off again and dreading trying to find a non-radio job) or if I ever tried yoga (bridge pose, downward dog modified, feet up a wall usually once or twice a day) or if I meditated (DAILY, thank you). CANCER...the word has the weight of a neutron star; people want to run from the room when they hear or read it. I used to feel the same way. Then it was just major element of my daily existence.
Actually, it's pretty much taken over my life since Dr Josh Chow reluctantly told me over the phone in his soft, kind voice that I had the deadliest form of brain cancer.
Since then it's been CANCER/SLASH/CANCER/BURN/CANCER/POISON and I've been the gracious host of the slashing, burning and poisoning.
I'm very, very ready for a break. Then, get up and get fighting again.
The oncologist made it cleaar taht I don't have to use the optune. I didn't have to do any of this, actually-I could have refused any of this treatment. At the outset I was still reeling from the asteroid strike of the news, so I went along with what THE DOCTORS said. Then, once being in, I think I was going on Polonius' advice in Hamlet: " Beware of entrance to a quarrel, but being in, bear’t that the opposed may beware of thee." In parlance of rural Maine, "Don't start any fights, but if you get in one, by gawd make sure you finish it."
I admit that at first I had doubts. This all sounded like stuff rich people do. Also I wondered if I was worth saving. But I have to admit my insurance was there for me. Insurance DOES work, as it turns out, and there IS a safety net...but you have to be completely hosed before it kicks in (my interpertation is this: the insurance company figures they won't have to float you much longer because of your truncated lifespan, so sure, here ya go, say nice things about us on your way out.)
Dispatches may increase after Tuesday, although while the effects of the radiation (very annoying visual problems) will wear off after about a week and from the chemo (like depressed immunity, Hello Mask and Gloves) could linger for months.
Thanks for reading, beloveds.
It always starts with the surgery (slash) followed by radiation (burn) and chemo (poison). That's the Standard Course of Treatment for glio blastomas nationally.
I got great care from the surgeon and the oncologists.
I've only lost 25 pounds. Not bad, actually. I didn't have to go on steroids to complete treatmtent like some people do. My tongue tasts like an aluminum brick, my head throbs at the slightest provocation, gettting food down is a fight, and my energy is in the neighborhood of -110%. But I've just about made it through.
Then, I get a break for six weeks before we strap the R2d2 thingy (OpTune) on my head for eighteen hours a day. If that doesn't hold the cancer back, we start clinical trials.
It's amazing how many people will blame you for things you have no part in, but cancer changes all the arguments. You have to be a serious dick to blame people for their own cancer, though it's common practice to hold a college student accountable when she's assaulted (was she drunk? wearing a short skirt? led him on, maybe?). Got a little dark there, but I just happened to notice when sudddenly people throw their hands up on your behalf. Nobody has asked me how much fried food I ate (some, but also salads and green tea) or how stressed out I was on a daily basis (WICKED-always waiting to be laid off again and dreading trying to find a non-radio job) or if I ever tried yoga (bridge pose, downward dog modified, feet up a wall usually once or twice a day) or if I meditated (DAILY, thank you). CANCER...the word has the weight of a neutron star; people want to run from the room when they hear or read it. I used to feel the same way. Then it was just major element of my daily existence.
Actually, it's pretty much taken over my life since Dr Josh Chow reluctantly told me over the phone in his soft, kind voice that I had the deadliest form of brain cancer.
Since then it's been CANCER/SLASH/CANCER/BURN/CANCER/POISON and I've been the gracious host of the slashing, burning and poisoning.
I'm very, very ready for a break. Then, get up and get fighting again.
The oncologist made it cleaar taht I don't have to use the optune. I didn't have to do any of this, actually-I could have refused any of this treatment. At the outset I was still reeling from the asteroid strike of the news, so I went along with what THE DOCTORS said. Then, once being in, I think I was going on Polonius' advice in Hamlet: " Beware of entrance to a quarrel, but being in, bear’t that the opposed may beware of thee." In parlance of rural Maine, "Don't start any fights, but if you get in one, by gawd make sure you finish it."
I admit that at first I had doubts. This all sounded like stuff rich people do. Also I wondered if I was worth saving. But I have to admit my insurance was there for me. Insurance DOES work, as it turns out, and there IS a safety net...but you have to be completely hosed before it kicks in (my interpertation is this: the insurance company figures they won't have to float you much longer because of your truncated lifespan, so sure, here ya go, say nice things about us on your way out.)
Dispatches may increase after Tuesday, although while the effects of the radiation (very annoying visual problems) will wear off after about a week and from the chemo (like depressed immunity, Hello Mask and Gloves) could linger for months.
Thanks for reading, beloveds.
Friday, April 10, 2020
The Impertinence of Being Honest Part 1: A Book Report
Warning: Difficult feelings and occurences are described in this post. It's not for the faint of heart, and some will assail me for being inappropriate or "oversharing". But I hope you will know exacly WHY I'm writing this...
The book is called When The Body Says No, by Gabor Mate
It's a deep, deeeeeep and exactingly researched work asserting that the repression of emotion can contriute to disease. Diseases like Parkinson's and cancer.
While I did skim over a lot of the physiology, one chapter struck me: the one on brain cancer. Many illnesses can be interpereted as physical metaphors for personal truth, and in this chapter he mentions commonality between people with brain cancer (most of whom are men) and the supression of reaction to percieved threat.
When I thought of Neil Peart, drummer for Rush, and John McCain, both of whom also had glio blastomas, I could easily see a reflection of this. Imagine you're an incredibly talented drummer and lyracist who's found just the right band to play with-BUT you're an introvert. Or (I'd rather not imagine) being held and tortured in prison camp, and then spending a lifetime battling in politics. Yes, I mentioned John McCain. Because brain cancer. Calm down.
But yours truly? Well, brace yourself for impertinence, or just skip the rest of this big paragraph, because you may need to calm yourself down if you're like many people I know who revolt when confronted by difficult truths....(if this is you, bail NOW).......I was attacked by a pedophile when I was seven; he'd cleverly cajoled me to climb a straight ladder to the second floor of the barn, where I felt trapped because I was terrfied of the ladder. Backwoods New England culture in the 60's was and pobably still is pretty violent, and as any asthmatic can tell you, when you can't run you have to stand your ground, so you get beat up a lot. At eighteen, after work as a security guard and delivering singing telegrams in the city of Boston I was unable to stay at the college of my choice and had to switch to U of Maine at Orono, where on "Gay Tolerance Day" (you signified tolerance by wearing jeans, so the majority of the population probably bought their first khakis that week) it was the practice to pie jeans wearers in the face. When a student lunged at me with a "pie" I was rescued by a friend, who spotted the fact that the whipped cream "pie" was in a heavy Pyrex pie plate. I worked for a stint as nightclub DJ, and in the 80's a female voice over the mic was both a novelty and a threat to The Manhood Of The Species. Although I was happy to begin working in local radio I had no concept of the shark tank I was jumping into, and had never encounterd so much toxic competition, not even in professional theater. I've also always wanted to be a decent fighter (getting beat up a lot as well as mugged when you're twenty-one will do that) so I studied Kung Fu, in which I injured my bad knee, then Tae Kwon Do, in which I got my 300.00 glasses smashed (some people notice when the sensei is looking away and cheat a little on the mat) and finally Ju Jitsu, in which I injured my GOOD knee.
While none of those is as extreme as being tortured in a prison camp, and you could argue that I brought a good amount of it on myself, it's still safe to say my life has not been without percieved threats.
But the problem is not in the threats or even the perception of them; it's not even in the emotional reaction to those percieved threats.
The problem is in repressing the emotional reactions to them.
I wsa recently called out by my friend Kim, who mentioned how the radiation and chemo were "aweful".
"It's not that bad," I said, automatically. I was comparing them to the parade of bureaucrats marching through the ICU firing insurance questions while my brain was still bleeding (Yes, I know I have to let this one go...give me time).
"No!" she said, "It is! It's bad! You get to say it sucks. You get to say it's bad."
And she's right that radiation and chemo are not mai tais on the beach.
Still, I automatically repress how bad it is. It's my problem, after all, no one else's. I have a list of "At least" excuses to justify why I feel compelled to minimize chemo and radiation; it begins with, "At least I'm not in a Turkish prison...."
Of course having a working amygdala, which can process emotion and perhaps even suppress it, can keep you alive if you've just had a traumatic event and need to take action (so often they tend to happen in tandem), so supression itself can be useful. Mate argues that suppression over a long period of time is unhealthy and that the evidence is clear from the studies. Mate contends that repression has a part in illness, and further that the evidence of such is being delibrately ignored by the people who study this stuff, because it's "impossible" to quantify in the same way as other elements, like genes and environment.
Repression, according to When The Body Says No, can contribute to killing you. Not on its own, of course. Cancer, according to the Cancer Cell International web site, is "...a complex disease that involves a sequence of gene-environment interactions in a progressive process that cannot occur without dysfunction in multiple systems, including DNA repair, apoptotic and immune functions." Humans love to simplify and oversimplify, so cancer is tough to get your brain around; but you might notice that the emotional element is not included in that list of causeations. Or should we say that element is suppressed?
But here's all I was trying to establish: In my experience, most people act as if emotions themselves will kill you. Gabor argues the opposite: that it's the repression of your feelings that contributes to that.
The book is called When The Body Says No, by Gabor Mate
It's a deep, deeeeeep and exactingly researched work asserting that the repression of emotion can contriute to disease. Diseases like Parkinson's and cancer.
While I did skim over a lot of the physiology, one chapter struck me: the one on brain cancer. Many illnesses can be interpereted as physical metaphors for personal truth, and in this chapter he mentions commonality between people with brain cancer (most of whom are men) and the supression of reaction to percieved threat.
When I thought of Neil Peart, drummer for Rush, and John McCain, both of whom also had glio blastomas, I could easily see a reflection of this. Imagine you're an incredibly talented drummer and lyracist who's found just the right band to play with-BUT you're an introvert. Or (I'd rather not imagine) being held and tortured in prison camp, and then spending a lifetime battling in politics. Yes, I mentioned John McCain. Because brain cancer. Calm down.
But yours truly? Well, brace yourself for impertinence, or just skip the rest of this big paragraph, because you may need to calm yourself down if you're like many people I know who revolt when confronted by difficult truths....(if this is you, bail NOW).......I was attacked by a pedophile when I was seven; he'd cleverly cajoled me to climb a straight ladder to the second floor of the barn, where I felt trapped because I was terrfied of the ladder. Backwoods New England culture in the 60's was and pobably still is pretty violent, and as any asthmatic can tell you, when you can't run you have to stand your ground, so you get beat up a lot. At eighteen, after work as a security guard and delivering singing telegrams in the city of Boston I was unable to stay at the college of my choice and had to switch to U of Maine at Orono, where on "Gay Tolerance Day" (you signified tolerance by wearing jeans, so the majority of the population probably bought their first khakis that week) it was the practice to pie jeans wearers in the face. When a student lunged at me with a "pie" I was rescued by a friend, who spotted the fact that the whipped cream "pie" was in a heavy Pyrex pie plate. I worked for a stint as nightclub DJ, and in the 80's a female voice over the mic was both a novelty and a threat to The Manhood Of The Species. Although I was happy to begin working in local radio I had no concept of the shark tank I was jumping into, and had never encounterd so much toxic competition, not even in professional theater. I've also always wanted to be a decent fighter (getting beat up a lot as well as mugged when you're twenty-one will do that) so I studied Kung Fu, in which I injured my bad knee, then Tae Kwon Do, in which I got my 300.00 glasses smashed (some people notice when the sensei is looking away and cheat a little on the mat) and finally Ju Jitsu, in which I injured my GOOD knee.
While none of those is as extreme as being tortured in a prison camp, and you could argue that I brought a good amount of it on myself, it's still safe to say my life has not been without percieved threats.
But the problem is not in the threats or even the perception of them; it's not even in the emotional reaction to those percieved threats.
The problem is in repressing the emotional reactions to them.
I wsa recently called out by my friend Kim, who mentioned how the radiation and chemo were "aweful".
"It's not that bad," I said, automatically. I was comparing them to the parade of bureaucrats marching through the ICU firing insurance questions while my brain was still bleeding (Yes, I know I have to let this one go...give me time).
"No!" she said, "It is! It's bad! You get to say it sucks. You get to say it's bad."
And she's right that radiation and chemo are not mai tais on the beach.
Still, I automatically repress how bad it is. It's my problem, after all, no one else's. I have a list of "At least" excuses to justify why I feel compelled to minimize chemo and radiation; it begins with, "At least I'm not in a Turkish prison...."
Of course having a working amygdala, which can process emotion and perhaps even suppress it, can keep you alive if you've just had a traumatic event and need to take action (so often they tend to happen in tandem), so supression itself can be useful. Mate argues that suppression over a long period of time is unhealthy and that the evidence is clear from the studies. Mate contends that repression has a part in illness, and further that the evidence of such is being delibrately ignored by the people who study this stuff, because it's "impossible" to quantify in the same way as other elements, like genes and environment.
Repression, according to When The Body Says No, can contribute to killing you. Not on its own, of course. Cancer, according to the Cancer Cell International web site, is "...a complex disease that involves a sequence of gene-environment interactions in a progressive process that cannot occur without dysfunction in multiple systems, including DNA repair, apoptotic and immune functions." Humans love to simplify and oversimplify, so cancer is tough to get your brain around; but you might notice that the emotional element is not included in that list of causeations. Or should we say that element is suppressed?
But here's all I was trying to establish: In my experience, most people act as if emotions themselves will kill you. Gabor argues the opposite: that it's the repression of your feelings that contributes to that.
Monday, April 6, 2020
A Geek's Journey Into Brain Cancer- Go Figure
I'm pretty arrogant.
I don't mean confrontational. I just presume that I'll be able to figure most things out. And I'm not actually that smart. SO I often get the same wake-up call, which goes like this: "Go figure-those people who know about this thing I don't understand actually KNOW something!"
The latest little alarm came from cosplay wigs.
When I found out I was going to be bald, partially even permanently, I thought, "Hey! I don't have to worry about a real wig becaue we have cosplay wigs now! I can go pastel blue if I want!
What I forgot is that wigs actully need stying, which is a skill many girls learn in high school.
I never learned this skill. I fought with Aquanet and curling irons for a while in the 80's but then I just gave up. It didn't interest me.
So, after ordering the cosplay wigs I thought it was so hip of me to think of, I got reminded that wigs need styling and I suck at that.
Go figure. People who rock cosplay wigs know how to STYLE THEM.
Anyway, here's what happens when you dont learn to style your hir and then you order cosplay wigs thinking you're all cool and stuff...................
I don't mean confrontational. I just presume that I'll be able to figure most things out. And I'm not actually that smart. SO I often get the same wake-up call, which goes like this: "Go figure-those people who know about this thing I don't understand actually KNOW something!"
The latest little alarm came from cosplay wigs.
When I found out I was going to be bald, partially even permanently, I thought, "Hey! I don't have to worry about a real wig becaue we have cosplay wigs now! I can go pastel blue if I want!
What I forgot is that wigs actully need stying, which is a skill many girls learn in high school.
I never learned this skill. I fought with Aquanet and curling irons for a while in the 80's but then I just gave up. It didn't interest me.
So, after ordering the cosplay wigs I thought it was so hip of me to think of, I got reminded that wigs need styling and I suck at that.
Go figure. People who rock cosplay wigs know how to STYLE THEM.
Anyway, here's what happens when you dont learn to style your hir and then you order cosplay wigs thinking you're all cool and stuff...................
Sunday, April 5, 2020
A Geek's Journey Into Brain Cancer: Out of Somedays
Cancer is espcially problematic if you're a giant sloth of a procrastinator.
I'm one of those people who spies cupcake liners in a kitchen drawer and thinks, "I'm definitely going to try popovers at this altitude again someday." My first attempt yeilded a tray of hot hockey pucks, but this was years ago.
The problem: only 25% of people newly diagnosed with glio blastoma are alive 24 months later. That's with the treatments, like I'm getting: big resection (94% removed), chemo, and radiation.
That's not even on the same timeline for me as "someday". "Someday" for me is fast tracked at five years.
Plus, I have a novel to finish...and another I'd love to get written if I get time. No baking. Just writing.
Nobody knows how much time they have, and most of the world is now experiencing what I've experienced a few times, first as a kid in the hospital with asthma, and now as a brain tumor patient. Laying low, hoping high, riding the rollercoaster of anxiety/depression/hope/distraction, ad nauseum. But this isn't that new for me. It's a kick in the crotch to the rest of the world for the most part. I can't help but be bemused when I read articles that discuss points like, "Did you know that when you're sick it's really hard to get things done and you have no energy?"
Welsome to illness, world. I'm not happy you're finding out about it. I hope you recover, but I also hope you remember.
Cuz it's unlikely I'll be here to bitch at you about it.
I'm one of those people who spies cupcake liners in a kitchen drawer and thinks, "I'm definitely going to try popovers at this altitude again someday." My first attempt yeilded a tray of hot hockey pucks, but this was years ago.
The problem: only 25% of people newly diagnosed with glio blastoma are alive 24 months later. That's with the treatments, like I'm getting: big resection (94% removed), chemo, and radiation.
That's not even on the same timeline for me as "someday". "Someday" for me is fast tracked at five years.
Plus, I have a novel to finish...and another I'd love to get written if I get time. No baking. Just writing.
Nobody knows how much time they have, and most of the world is now experiencing what I've experienced a few times, first as a kid in the hospital with asthma, and now as a brain tumor patient. Laying low, hoping high, riding the rollercoaster of anxiety/depression/hope/distraction, ad nauseum. But this isn't that new for me. It's a kick in the crotch to the rest of the world for the most part. I can't help but be bemused when I read articles that discuss points like, "Did you know that when you're sick it's really hard to get things done and you have no energy?"
Welsome to illness, world. I'm not happy you're finding out about it. I hope you recover, but I also hope you remember.
Cuz it's unlikely I'll be here to bitch at you about it.
Wednesday, April 1, 2020
A Geek's Journey Into Brain Cancer: We Make It So
Because I am fortunate to have friends and family who vary in generation and preferences, many of my Geek or pop culure references may not hit with them (if this is you, STRONG CONTENT WARNING). That's why I've included links for those who don't get the references rather than explain them, which ruins the reference much like explaining a joke kills the joke.
Makin' It So....
https://www.youtube.com/watch?v=FaLyasJPyUU
When your hair falls out in patches it's quite annoying, especially when it's pulling on still-healing incisions.
Don't presume I'm going to flash any reporters while climbing out of a limo (https://nypost.com/2012/10/20/britney-spears-shaved-her-hair-off-in-2007-to-cover-up-drug-use-ex-aide/) or rip up a picture of the Pope (https://www.youtube.com/watch?v=2dKdBlKgquw). It's mostly for comfort. But because I'm an enormous dork AND ham, it's also for photo ops. Jim, Lovely Jim, shaves his head regularly so he's an expert. He SO GENTLY shaved mine...
Shhhhhhh.....
Makin' It So....
https://www.youtube.com/watch?v=FaLyasJPyUU
When your hair falls out in patches it's quite annoying, especially when it's pulling on still-healing incisions.
Don't presume I'm going to flash any reporters while climbing out of a limo (https://nypost.com/2012/10/20/britney-spears-shaved-her-hair-off-in-2007-to-cover-up-drug-use-ex-aide/) or rip up a picture of the Pope (https://www.youtube.com/watch?v=2dKdBlKgquw). It's mostly for comfort. But because I'm an enormous dork AND ham, it's also for photo ops. Jim, Lovely Jim, shaves his head regularly so he's an expert. He SO GENTLY shaved mine...
Shhhhhhh.....
Furiosa, 40 years later and driving a Ford Ranger....
Dr Evil Laughing Madly With Cat was poorly taken. But Lucille's expression is worth it....
More coming soon.......
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