I feel truly bizarre. Vibrating and displaced disconnected otherworldly. I know that my feeling is a result of dragging along my suitcases of emotional cement, my cancer cement blocks of wet sponges of suck.
I want to report to you. This is just a report from inside the office of an actual real-life cancer patient. Doesn't mean my experience will be the same as anyone else's, but I think it is important to tell what happens to a person when they do this thing called cancer, America, 21st-century.
I'm at the stage of radiation right now. I just started radiation a few days ago.
PAIN
PAIN
Today I awoke at 2 am in searing recognizable pain - my left shoulder throbbing with a hot poker with every breath, every very shallow breath. I began to sip air like a turtle - willing the oxygen molecules to float down my throat rather than have to inhale them because the inhalations were stabbing me.
I know this pain, I first met it in 1996. It is called idiopathic pleurisy. (Because I'm an idiot and pathetic, just kidding). If you see the word "idiopathic" on some kind of medical document about you, or hear it, here's what it really means: we don't know
For some reason, my body does this damn pleurisy dance to me when I am under extreme stress, like the stress I was under after open heart surgery in 1996. Or right now. Something in the pleural lining - which is some kind of weird sack encasement (like sausage casing?) thing that goes around your lungs -- gets hurt or inflamed or scratched or rubs something inside in a horrible way. Like rubbing two open wounds together - as your lungs expand with each breathe the outside of the lungs where the problem is, rubs the inside of the pleural lining where its problem is, and it causes excruciating pain.
For some reason, my body does this damn pleurisy dance to me when I am under extreme stress, like the stress I was under after open heart surgery in 1996. Or right now. Something in the pleural lining - which is some kind of weird sack encasement (like sausage casing?) thing that goes around your lungs -- gets hurt or inflamed or scratched or rubs something inside in a horrible way. Like rubbing two open wounds together - as your lungs expand with each breathe the outside of the lungs where the problem is, rubs the inside of the pleural lining where its problem is, and it causes excruciating pain.
I've been to millions of doctors about this and learned a lot about it, although it's still very mysterious. NO ONE KNOWS why the insides of some people's pleural linings decide to get sticky and ouchy and bloody and scabby and searing. And the pain is relentless, unless you can figure out a way of living that does not involve breathing.
Imagine way down in the depths of the inside of your goopy gooey lungs and heart and encasements and sacs and fascia and mucus and membranes some nerves are on fire. The odd thing is you don't feel the pain way down in there, because this kind of pain causes what's called "referred pain" meaning that the long nerve that is so pained sends its pain signal somewhere else at the other end of its longness. For me this is in the left shoulder. When this freakshow first hit me a few weeks after open heart surgery in January of 1996, I woke up one unholy 3am into amazing, bright white, and literally awesome pain. Many ER trips, much useless discussion until a doctor finally figured out that it was pain from the pleural lining and put me on steroids, which took the pain away in 30 minutes.
In other words extreme reduction of inflammation helps this thing more than pain medication. Nothing is more efficient at reducing inflammation at the speed of light than prednisone. It's like magic. But it's nasty evil stuff too. It will make you feel all jacked up, you can't sleep and you feel like you're a drug addict. Over time steroids can cause things like weight gain, winning the Tour de France, a round face, and, oh, perhaps a little psychosis!? I was on and off prednisone all the time that year. Then they put me on naproxen for two years, which you can now buy at the store under the name brand name Aleve, an NSAID - like ibuprofen. After a couple of years I weaned myself off of all that junk to wing it.
Since then this pleurisy pain stabbing murder thing happens to me just every once in a while, seemingly out of the blue. But...I know my body. When I'm completely freaked out with stress on the inside, even if it doesn't show on the outside, this pleurisy thing comes back. It came back last night it at two a.m.
I wonder if this pain, my personal custom made stab, is a way for my body to force me to stop. Like the pain of childbirth, when it hits you may not continue doing what you're doing even if you want to. Right now I'm laying in bed, taking Advil where I have been pretty much since 2 o'clock in the morning last night, except to get a ride to radiation, get radiated come and come back home. Okay! I hear you. I'm resting.
Too much. Too much right now. Too much muchness. Husbands who are in Vancouver British Columbia or Miami or Denver or Oklahoma City, kids who are in homework detention or practicing for a play till evening hours, mulch that needs to be spread, lunches and breakfasts that need to be made and delivered and packed and uneaten and rot in a lunch box or a car and no one cares. Mounds of wet towels wet towels wet towels, how in the world can we have 43 white wet towels in one bathroom or on a floor? I call a moratorium on towels. Each person gets one small towel. Or forget that, no one will listen to my towel philosophizing. Nor should they.
RADIATION
Imagine way down in the depths of the inside of your goopy gooey lungs and heart and encasements and sacs and fascia and mucus and membranes some nerves are on fire. The odd thing is you don't feel the pain way down in there, because this kind of pain causes what's called "referred pain" meaning that the long nerve that is so pained sends its pain signal somewhere else at the other end of its longness. For me this is in the left shoulder. When this freakshow first hit me a few weeks after open heart surgery in January of 1996, I woke up one unholy 3am into amazing, bright white, and literally awesome pain. Many ER trips, much useless discussion until a doctor finally figured out that it was pain from the pleural lining and put me on steroids, which took the pain away in 30 minutes.
In other words extreme reduction of inflammation helps this thing more than pain medication. Nothing is more efficient at reducing inflammation at the speed of light than prednisone. It's like magic. But it's nasty evil stuff too. It will make you feel all jacked up, you can't sleep and you feel like you're a drug addict. Over time steroids can cause things like weight gain, winning the Tour de France, a round face, and, oh, perhaps a little psychosis!? I was on and off prednisone all the time that year. Then they put me on naproxen for two years, which you can now buy at the store under the name brand name Aleve, an NSAID - like ibuprofen. After a couple of years I weaned myself off of all that junk to wing it.
Since then this pleurisy pain stabbing murder thing happens to me just every once in a while, seemingly out of the blue. But...I know my body. When I'm completely freaked out with stress on the inside, even if it doesn't show on the outside, this pleurisy thing comes back. It came back last night it at two a.m.
I wonder if this pain, my personal custom made stab, is a way for my body to force me to stop. Like the pain of childbirth, when it hits you may not continue doing what you're doing even if you want to. Right now I'm laying in bed, taking Advil where I have been pretty much since 2 o'clock in the morning last night, except to get a ride to radiation, get radiated come and come back home. Okay! I hear you. I'm resting.
Too much. Too much right now. Too much muchness. Husbands who are in Vancouver British Columbia or Miami or Denver or Oklahoma City, kids who are in homework detention or practicing for a play till evening hours, mulch that needs to be spread, lunches and breakfasts that need to be made and delivered and packed and uneaten and rot in a lunch box or a car and no one cares. Mounds of wet towels wet towels wet towels, how in the world can we have 43 white wet towels in one bathroom or on a floor? I call a moratorium on towels. Each person gets one small towel. Or forget that, no one will listen to my towel philosophizing. Nor should they.
RADIATION
Today I had my fifth radiation treatment. This means I'm 25% of the way done. I now have the drill down pat, in terms of undressing, putting on my pristine pillowcase, and laying on my table. I have no had more time to contemplate the actual radiation, and instead of getting more used to it, I am getting more fearful of it. As robotic arms move above me, they scare me. The face of the radiator seems to be looking down at me in a menacing way.
It descends upon me. Sees me. It (she?) clicks and whirs and groans and moans as it goes around and over me and sets like a setting sun to my left, about 20° below my body in preparation to shoot upward at that angle through my breast. Then, it pauses, ready to shoot. I try to breathe. Eyes closed. And wait.
It descends upon me. Sees me. It (she?) clicks and whirs and groans and moans as it goes around and over me and sets like a setting sun to my left, about 20° below my body in preparation to shoot upward at that angle through my breast. Then, it pauses, ready to shoot. I try to breathe. Eyes closed. And wait.
I hear a click and a loud buzzing noise starts. I close my eyes and count out the seconds. It is 27 seconds. Not very long, but the seconds are very slow. The machine then clicks loudly and goes blank. Cold. Martian. Obsidian.
After a pause, the blank black glass faced machine awakens again. It jerks up from the left and crosses my horizon, moving over my body planet from left to right, crossing over me, right over my face, to position itself at the exact opposite side of my breast - now on the right side of my body. At about 2 o'clock straight up and to the right, it stops. The middle teeth are open in their blank upside down mouth shape. They are ready to shoot the radiation beams through the same breast from the opposite side. Run through all the tunnels backwards. This side - 21 seconds. .
After a pause, the blank black glass faced machine awakens again. It jerks up from the left and crosses my horizon, moving over my body planet from left to right, crossing over me, right over my face, to position itself at the exact opposite side of my breast - now on the right side of my body. At about 2 o'clock straight up and to the right, it stops. The middle teeth are open in their blank upside down mouth shape. They are ready to shoot the radiation beams through the same breast from the opposite side. Run through all the tunnels backwards. This side - 21 seconds. .
During these two blasts, radiation beams go through me like the Road Runner's painted on mountain tunnels. Only the beams are made of light rays, x-rays, and travel even faster than the Road Runner. And there are an infinite number of them, making millions and millions of teeny tiny tunnels through me. From floor to top. Every cell is radiated. (And thus inflamed and sore). This is called full breast radiation. It fizzes.
That's my prescription.
In the interlude these two radiation blasts, one from the left, and one from the right, as the machine is moving over me in its trajectory across my horizon, I wonder, what if? What if the machine went crazy and started radiating straight down at me, here halfway, shooting X-rays right into my brain and killing me? Does it have an intelligence? A will? What if it one of the technicians behind the fort knoxian two foot door becomes a psychopath and pushes a button to commence radiating death right down into my heart and my chest and my neck and my lungs and I caught on fire and exploded?
In the interlude these two radiation blasts, one from the left, and one from the right, as the machine is moving over me in its trajectory across my horizon, I wonder, what if? What if the machine went crazy and started radiating straight down at me, here halfway, shooting X-rays right into my brain and killing me? Does it have an intelligence? A will? What if it one of the technicians behind the fort knoxian two foot door becomes a psychopath and pushes a button to commence radiating death right down into my heart and my chest and my neck and my lungs and I caught on fire and exploded?
Or, what about the suicide wish that we all have deep inside of us? The desire to pierce the veil? When the radiation is on, I have a desire to sit up or move my head right in the way of the beams and kill myself. I have to concentrate on staying still. This isn't a very strong desire, it's more of a curiosity and the natural death wish that we all share, like when you stand at the edge of the Grand Canyon. A mystery.
REST
REST
I'm completely wiped out today. I was awake from 2 AM on. I don't feel good today. They assure me that the radiation is not the cause of my pleurisy or my tiredness. It's just me.
IT IS OK
IT IS OK
Some very good things too:
My aunt is getting better after a spell of not feeling so well herself. At 90 she's an inspiration. Hello Aunt Marilyn!
Books - reading and reading my way through life. And my two book clubs. One group came for dinner last night and we shrieked with laughter while eating and yelling and drinking and arguing brilliantly with young funny girls waitressing about us in my dining room.
Friends - Susan P. popped by and visited me at radiation yesterday - impromptu radiant support.
My aunt is getting better after a spell of not feeling so well herself. At 90 she's an inspiration. Hello Aunt Marilyn!
Books - reading and reading my way through life. And my two book clubs. One group came for dinner last night and we shrieked with laughter while eating and yelling and drinking and arguing brilliantly with young funny girls waitressing about us in my dining room.
Friends - Susan P. popped by and visited me at radiation yesterday - impromptu radiant support.
Vi Fi n Mike n pals - my little hilarity reality show - we have mega fun and I love it. I love the beautiful mess of the anthropological creature called the American teenager - they are enchantingly hilarious. See photographic evidence.
Music - I can NOT GET ENOUGH of superbly loud radiating excellent music - these radiating waves do not hurt me or scare me they calm me and wake me and heal me.
My latest loves:
1. "Haunted" by Beyoncé
It's what you do
It's what you see
I know if I'm haunting you
You must be haunting me
It's where we go
It's where we'll be
I know if I'm on to you, I'm on to you
On to you, you must be on to me
2. "Uncertainty" by Jagwar Ma
I've got something pouring,
through a personal atlas,
and if the weather was warning,
even heaven should practice.
I've got something drawing,
like a column that's our own,
and if the weather was warning,
the stars are drifting the shallows.
How can ya', how can ya' look so gloomy,
When you're gloomy, howlin', look so good to me,
How can ya', how can ya' look so gloomy,
When you're gloomy, howlin', look so good to me.
Be my night,
be my night.
You take on everything,
in a peculiar manner,
and if I'd be so reckless
through a personal atlas,
and if the weather was warning,
even heaven should practice.
I've got something drawing,
like a column that's our own,
and if the weather was warning,
the stars are drifting the shallows.
How can ya', how can ya' look so gloomy,
When you're gloomy, howlin', look so good to me,
How can ya', how can ya' look so gloomy,
When you're gloomy, howlin', look so good to me.
Be my night,
be my night.
You take on everything,
in a peculiar manner,
and if I'd be so reckless
3. "Black Skinheads" by Kanye West
For my theme song, my leather black jeans on
My by any means on, pardon I'm getting my scream on
Enter the kingdom but watch who you bring home
They see a black man with a white woman at the top floor they gone come to kill King Kong
I AM OK
WILL BE OK
GETTING THROUGH IT
Some pix from my week:
Yikes. How awful!
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