The Vile Inside

“The vile inside”

July 3, 2019. Chemotherapy Round 2.

 

Concentrated toxins form pools beneath this skin’s surface

Emitting noxious fumes

Rivaled only by the

The chemotherapy stench

A new kind of vile: cancer, chemical, and fecal. 

I compare my IV medication cocktail

To drinking Drano

How much poison can one body take?

Chug it too fast, and my body loses.

Sip it slowly, and the cancer dies first.

My weight plummets as does my ascites bloated stomach.

The Drano has been winning.

I feel better today,

And this past weekend,

but hold my breath

Knowing I could feel much worse.

On June 19^th, the first round of this adventuring took my body from 152 lbs to 146 lbs in 6 days. And I was disheartened.  Then over the next 7 days I was feeling better and able to eat, but still had diarrhea occasionally but still colonoscopy caliber cleansing. Eventually, joyfully, with semi-regular soft stool, I went from 146 to 140 lbs today.  Now. Round 2. July 3^rd. Day one. Hour one. For the next 6 hours I will be hooked up to an IV going directly to my chest. Then I will be given a pump that will be hooked up to my chest for the next 46 hours slowly administering another drug too strong to take with this 6 hour injection. If this round is anything like my first round, as some people say it will be, I will start to feel poorly in 3 hours and will feel just okay in 6 days. Bracing myself for a potential week long ordeal of nausea, weakness, and round-the-clock diarrhea, I’m beginning at a new low weight.  I don’t know what I fear most, the physical discomfort or the psychological repercussions of the looming weight loss. And the knowing that it might be 5 or 6 days before I feel strong enough, to eat hearty enough, can stomach enough, to eat the high calorie, high protein, fatty foods my body needs to ward off the villain intent upon the liposuction of my soul.

Bellybutton, 3rd Nipple, Fecal Matters

28 June 2019

I have 3 announcements.

1)      Tonight is the first night in nearly 7 weeks I’ve had a significant bellybutton. 

2)      I have a third nipple. 

3)      The last part of this blog digresses into Fecal Matters, because for better or worse, these Matters provide insight into my illness, my treatment, and my recovery.

 

1)      Let me explain the first phenomenon. Since early May, the fluid collection (ascites) was so bad in my lower abdomen that it made my skin tight and unnaturally stretched.  One of my few early topics I could joke about was my bellybutton had almost become unnoticeable.  On May 9^th, when I went to my nurse, I laid down on the table without my shirt and that’s one of the first things she said was “you have no bellybutton!” to which in exasperation I replied, “I know!”  She asked if it’s always been like that and I continued, “No, I’ve always been an ‘innie’. This is why I know somethings wrong.”

This visitation from my old traveling partner is significant for several reasons.  There’s an Isaac Asimov science fiction story about a time when people live on many planets across the galaxy. Naturally one wants to visit these far-flung places either because relatives or for vacation.  Space travel is expensive, so one way to save money is to have a clone of yourself made there and your consciousness is projected into it. The only memorable detail about the story to me now (25 years since reading it), is that the clones are missing what? Can you guess?  A bellybutton! I don’t remember the plot or the intrigue.  I haven’t even remembered the story for almost as long until tonight, but I remember that fact.

Two more examples on the what a healthy belly button means.  I cut the umbilical cords of both my daughters. Actually, the nursing staff disconnect the cord from the placenta, but they leave about a foot of cord available so the partners can do the symbolic honor while the mother recovers.  Then there’s about an inch of cord left which slowly dries up and falls off in about a week.  Some forward thinking people collect this scar tissue when it falls off and perhaps put it in a keepsake Christmas ornament or vial.  I don’t remember what happened to ours.   

2)      Now about the second phenomenon. The third nipple. According to my trusty kindle edition of “Malleus Maleficarum”, the prime textbook for witch hunting since 1485, when a man or woman has a third nipple, it’s so the devils can latch onto him or her and infect them.  Much has been said in disproving this theory in recent centuries, namely the unhappy coincidence that a small percentage of people are born with them naturally. For these men and women born in the wrong centuries, good luck.

My third nipple is not natural. It’s a “Bard Power Port” according to the medical wrist bracelet they gave me. Tonight is the first night the incision point wasn’t too sore or I wasn’t so unsettled by the very fact of the Power Port’s existence in me, that I was able to gently prod it under my skin with curiosity. Before, just talking about the port made me feel uneasy because the mere idea of the port installed so close to my vital organs was unsettling. It was installed last Tuesday so that my chemotherapy IV can go straight into my primary veins in my chest. This is important because the chemo drugs are so toxic they often just burn the tiny veins in the arm.  And for those whose veins aren’t burned, it takes longer to take effect. They installed it and the following day I got my first dose of chemo blasted into my chest. After the mostly uneventful experience of the chemo treatment itself (I felt almost nothing except a slight nausea that ripened over the next day and half), they gave me a door prize of a pump to wear around my shoulder.  The pump is plugged into the port and over the next 2-3 days I wear it while another dose of 117. Mg of something (don’t remember drug) is slowly fed into my body.  Please notice I said “2-3 days”.  I had chemo on Wednesday and went back on Friday to remove the pump, per their instructions.  When I got there they said a clamp hadn’t been removed from the hose, and the pump’s pressure warning malfunctioned.  The LCD display not only didn’t say there was a blockage, but kept counting down the dose and making pumping noises AS IF everything was fine. They apologized by insisting “that never happens”.  Except to me. What’s the name of a dimly remembered James Bond movie? “Never Say Never.” (I know nothing of the film except the title because it’s so true to life.)  So, they gave me a new pump, insisted it would work right, and told me to come back the following Monday.

Let me tell you the best part about the port.  They say that once it’s installed, it can stay there indefinitely even though unsurprisingly people generally opt to remove it once they don’t need it.  So after all this is said and done, I could opt to just leave the port in my chest so when I need a rare IV or blood draw in the future, I can offer the medic some encouragement, “Don’t worry about the veins, I have a port here for your convenience!”

3)      Third announcement, Fecal Matters, begins here. Read if you want, or skip it.

Friday I was slightly less queasy (I drove myself), Saturday I was almost feeling okay but very weak, and Saturday night I began the painful experience of burning chemical farts with little to no poop.  Sunday morning they evened up to ordinary diarrhea that thank God didn’t burn or cause any of the other familiar strain (if its ever ordinary to have diarrhea that lasts 36 hours at a rate of every 15 to 30 minutes without anti-diarrheal meds, and every hour when taking strong prescription meds.). They didn’t burn, but they possessed a chemical smell and acridity that is a special category of vile. Monday morning I ask the nurses if my body experience would have been more intense if the pump was actually administering the meds when it was supposed to. They said no, it still would have been gradual. Today is Friday and when I have a stool it’s just as fluid as 5 days ago, but now it’s only every 3-4 hours.  From that first Wednesday with Chemo to the following Tuesday, I went from 152 lbs to 146 lbs. (bear in mind my healthy weight for nearly 17 years has been 165-170 lbs, and when I started this ride in late April I was 168 lbs. The effect of this weight loss on my psyche is almost as dismal as the physical discomforts I went through.    

The other night I went to sleep at 9:30pm and woke up at 4am. 6 ½ hours of sleep that was continual and not interrupted by back pain, stomach pain, or bladder issues.  When I went back to sleep I dreamt I was sharing this factoid with various people, so impressed and elated was I.  

2 Poems over the span of 3 weeks in 2013.

(7pm, 7 June, 2013)

“A Stranger’s Weight”

I’ve been walking
since before I can remember,
I’ve been walking
since before I left home.…
Until my friends call me
affectionately a traveler,
and I feel my body’s weight.

I grow stranger as I pass
from door to door,
from someone’s home to someone’s home.
I grow stranger as I wake
alone each day.

I often wonder what keeps me
from falling over, too tired
to continue.
It’s the walls that keep me up,
It’s forward momentum that keeps me up.
And passing words of courage
from sympathetic passer’s by.

They give me the strength to walk
and hope.
These are my gifts, and I am gifted richly.

Wanting a relationship my way,
my preferences, or not wanting
one at all.
Not knowing
what to compromise for and
from whom I can really learn.

Without having a partner,
I have only a vague idea of what I’m missing
except for myself, whom I know too well.
We’ve met intimately, my self and I.
In foreign places, living spaces.

I know the company I’m missing
because the company I have
and what I remember.

My self gets
closer and closer.
Too close for comfort.
Driving me to run away,
until my crowded mind runs blank
with fatigue.

I keep on passing, hoping,
anticipating, because I’m good at it,
and the act itself, the movement,
is familiar and comforting
when the streets are strange with
faces and to me,
and I grow stranger, tired
doing what I know
building my homeless sense of home.

 

(8:17pm, 26 June 2013)

“Living Room Fire”

You’ve brought me in
from out of the cold
into your home
to rest beside your living room fire.

It’s so different
than drifting through streets
lined through boutiques
where I can look but not have.
Where I’m moving through strangers
turned familiar
by formal politeness
or warm hearted visits
as I keep passing by.

Sometimes visits so brief
I don’t change
out of my traveling clothes
grimy from the road
grimy from myself.

But you’ve offered me a place
to stay longer than just passing.
You’ve offered me a place
to wash and air out
my dirty laundry
so that it’s clean again. And fresh.
So that I can feel clean again, and young.

Please forgive my strangeness,
my anxiety,
critical at minor details.
Three weeks ago
I knew where I was heading,
and apprehensive about
my reality slipping.
Guided by hope, a vague idea,
not a real person. Like you.

I’ve become comfortable in
not being too close to people.
But you offer me closeness,
Like Springsteen’s ‘Human Touch’.
It’s different than my vague ideas
shaped through solitude
window shopping,
movement,
uncompromising,
and sleeping alone.

Your closeness is human.
It’s not an idea.
It’s flesh and heart.
It’s you. All you.

Some of your particulars may be different
than my vague notions,
as you are alive
and my notions are a figment.

Forgive me,
if I need time to adjust
to the you that’s offering me a doorway
out of the cold,
Away from my mind trap,
that’s keeping me cold
keeping me away from

someone warm and alive
like you
Human and inviting

---

4 July 2019. 6:39pm.  Between June 7 and June 26, 2013, I had a date and we hugged.  Then I had another and we kissed. When apart, we talked and talked. 6 years later, we are still hugging, kissing, and talking. 2 poems over the span of 3 weeks.

 

Freud’s Oedi and Jessie’s Girl

From July 4, 2015 Facebook

I was in the cellar for a couple hours cleaning out boxes. I’d tried to work on a job cover letter upstairs but my mind was dulled by the heat. So I read more of Freud’s Ego and Id instead. He was explaining the Oedipus complex and how the Ego Ideal is formed by repressing sexual urges. So “conscience” or “Law of the Father”, or ingrained social norms are reinforced.
But what’s interesting is that the Oedipus Complex can be positive. It’s only a neurosis if one doesn’t grow out of it. The child identifies with the father because they both intensely objectify the mother. Freud calls that sexual feelings for the mother, but that should be overlooked in the same way we can appreciate a covered wagon or prairie schooner without focusing too much on the use of wooden wheels. I use that analogy because he, like folks on the Oregon Trail, were pioneers.

So Freud in his prairie schooner sailing across the Midwest had lots of time to read and re-read his fave copy of Greek Tragedy. At first, the boy has intense feelings for the mother and is jealous of the father. Sigmund uses the term “ambivalent”. But the boy wants to become like his father in order to get the mother’s attention. But eventually he grows up and losing sexual feelings towards his mother, in fact becomes “ambivalent” to her, and identifies with the father.

Sigmund admits that it’s not always sexual feelings towards mom, but sometimes just familial affection in a best case scenario. But interestingly, the more the boy wants to feel his feelings, the more intensely he wants to identify with the father and emulate him, because “if I do what he does, then I get what he has.” In Freud’s model (remember, a model is a simplified miniature. You can’t ride a toy train to the countryside unless your Mr. Rogers), a person becomes neurotic when they let their desires get in the way of social convention. I’d say the neurotic isn’t actually a neurotic until they become obsessed with their drives or the suppression of their drives. Before then, they’re just a libertine in all their sexual fantasy glory. But there is a correlation between one feeling the heavy handed smothering of social norms and the suppressing of desires. As in, one starts to fear or obsess over their desires because of the social norms that prohibit those types of behaviors.

It’s interesting that he sees this suppressing as instrumental to establishing a normal socially conscious acclimated self. This is called “sublimation”.  Sublimation is essential to channeling behaviors or desires into socially productive activities.  Simple example.  A child says they want to become an artist when they grow up.  Their parents ask them how they will make money.  The artistic child eventually goes to college for graphic design and works in a respectable children’s book publishing house.  Bingo.  Or, as often is the case, the child gets a totally unartistic career and paints as a hobby. 

Back to Oedi. He doesn’t really desire his mother as a singular entity. He really just desires to get an awesome woman like the father has. So, if little Oedi wants a woman like that, he needs to put on his big boy toga and do what dad does. If he’s really good and follows all dad’s instructions, he can become a king too. And then he can also get a queen. The tragedy of Oedipus, however, is that he didn’t know that when he killed a random guy on the side of the road in a case of ancient road rage, he was actually killing his father and king. So when he got to Thebes, they needed a new king and he fit the bill.  He even got the king’s wife. He didn’t know the queen was his mother at the time. And when he found out, he gouged out his eyes with her broach out of remorse and disgust. 

But really, the best way to understand the jealousy of the Oedipus Complex is with the chart topping Jessie’s Girl. Because Jessie= King, Father, Cool Dude. Jessie’s Girl = Queen, Mother, Girl too cool for Jessie’s Friend. And Jessie’s Friend= Little Oedi, Son, self proclaimed “nice guy”, that fixates on Jessie’s Girl because he can’t have her. But, if Jessie’s Friend does in fact listen to all Jessie’s advice, he’ll learn to relax and understand that Jessie isn’t a King or a Demigod.  He’s just a regular guy that’s also nervous but ‘fakes’ it to sleep with hot woman. And if there’s any lesson learned about ‘faking’ being better than one is, is that eventually one becomes that faked image and truly is as great as he once ‘faked’ to be. In order to become great, one must first dream it.

 

 

 

 

 

 

A Pain in My Ass!

A Pain in My Ass!

Adventures in colorectal cancer

26 June 2019

I have cancer in 2 places in my colon and also in lower lining of my abdomen. Specifically, I have 2 lesions in the upper colon where the large intestine meets the smaller intestine. This is called the secal valve. I also have a growth in my rectum area. The name of the abdomen lining is the peroniteal lining or omentum. Both anatomical terms have come up in the various reports. Just this past week on June 19^th, I’ve begun chemotherapy. On June 6, 2019, they did a colonoscopy. On May 28^th, they drained 5 liters of dark amber fluid (11 pounds) from my belly. The condition of fluid in the belly is called “Ascites”, and it’s usually associated with severe or nearly terminal liver disease. You can imagine my relief when on June 7^th, I have my first meeting with my cancer doctor, an Oncologist.  He tells me the fluid collection is not from my liver shutting down, it’s just from the abdomen cancer. That’s a relief. On May 8^th, the ER doctors agreed on 2 things: 1) I needed to see a Gastroenterologist because I have a lot going on, and 2) I have hemorrhoids. I went to the ER because for the few days prior, I had poop that was laced with a bright red mucus. While they might have been from hemorrhoids, I learned a month later on the colonoscopy it was cancer…and maybe hemorrhoids on top, caused because the strain in ordinary fecal matters. 

May was a stressful time for my family.  Every scan and blood test caused my primary nurse more alarm, posed more questions than answers, and nearly every medical personnel wanted to just defer me to someone more specialized than themselves. I’d like to insert a joke here because I haven’t been able to make very many about this in the past month and half. The situation is funny because it’s not. It’s funny because it’s terrifying. It’s funny because I want to shut out everything except the most immediate updates from the most informed doctors and nurses, yet I can’t. I want to shut out everything and read my comfort literature. It’s funny because I’m 37 and have been remarkably healthy my entire adult life. It’s funny because everything I thought I knew about my resilient immune system has gone out the window. The distinctly unfunny nature of this illness is expressed in the title of this blog, “A pain in My Ass”, which weeks ago I cringed when I thought of it because it’s physically extremely uncomfortable and a bad joke. I dislike puns and bad jokes, but this experience warrants the title because it’s so appropriate.

I remember a Saturday Night Live skit from the early 90’s where the talk show was “Fecal Matters” with the host, “John Fecal”.  The host naturally kept asking the guest about his stool and he was getting increasingly disgusted and outraged.  He finally calls out the host who happily reminds him that’s the name of the program.  The guest responds, that he thought it was called “Fecal Matters” because the host’s name was Fecal, not because it was the only topic of the show.  I also mention this story because I’ve always found my own waste products disgusting and rarely looked at them even for medical reasons. The smell alone made me nauseous. However lately…I’ve developed a grim interest in it because it’s the most obvious and readily available source from my body to evaluate my developing situation. How it used to be months ago, how it’s been this spring, and how it’s changed over this past month, how it changes when I’m preparing for the Colonoscopy or on Chemotherapy. Feces tell no lies. I’ve also lost something of a filter on the issue because when speaking with medical personnel who want to know what’s going on, I have to tell them.  To the caring friend or family member, I tell them.  To my extremely patient and concerned wife, I tell her.

I’d like to end this first blog post with an admission.  I don’t want to write this blog, I need to. I’ve tried to shut out everything except my illness, rest, and my books, but my family and friends won’t let me. Friends have reached out and demanded I tell them what’s going on. Urged me to find time to visit because they know I need it. People that are distant or close alike have offered their support, showed their concern.  When my sister reminded me to count my blessings, I didn’t think about how my health could be worse, how my illness was finally being diagnosed correctly.  I thought about who has reached out and helped keep my family together.  Who has provided support or sound medical advice. Who has been there and continues to be here.  Who is with us now.     

Body Beyond

John White

April 28, 2013 · 

I am your body
I gave birth to you,
your consciousness,
out of my limitations.

I am a system of parts
doing everything I can
for you
and you exploit me.
I don’t mind
because when I die,
I’m taking you with me.
Together again,
without ego or pretensions.
Until then,
I am yours to explore
and push to my limits
and beyond.

We train together,
you and I.
I ask you to listen to me,
respect my boundaries
of pain and pleasure.
And I will give you everything
I feel to you.
So that you use me
harder.
And your consciousness will strengthen.
But please remember
who gave you your sensations
So that next time
You and I will push beyond them.

 

I started the first lines when I was in a sauna in Berlin a month ago. A couple days earlier I’d been doing some exercises that were stressing my body and I sprained my wrist. So when I was in the sauna, i was thinking about the relationship between body and mind and how we push our bodies to their limits and then beyond them. I kept repeating the first lines in my head. My friend Witherspoon then tells me how “this sauna will clean the nasty out of you.” Then I turn to him and grin, tapping on the side of my head, “but the nasty is in here.”

In the Shadow of Air Balloons

John White

April 27, 2015 at 2:37 PM · 

The great men and women of the ancient and medieval world were a fleet of hot air balloons coalescing across the pale blue sky. Their lofty visions of faith, philosophy, and political theory while the world around them was sometimes a material and intellectual poverty. I am in their shadows still. One day, my vanity believes, I’ll flit among them too.

Flicker

John White

April 25, 2013 at 4:29 AM · Oklahoma City · 

holding a match to the wind, commanding “don’t blow out!” But it doesn’t and it won’t. Not when everything is incendiary.
The only challenge then, is in managing the wind and those other little force of nature that set everything in motion.

Transcendental Knowledge

John White

April 24, 2015 · 

On the theory of transcendental knowledge. Realms of what can be knowable only by transcending to a new hierarchical or spatial plane.

We’re talking about knowledge which is achieved through learning and acquiring. One learns through experience, analysis, and intuitive leaps. While these are developing and building on what one learned previously, it’s not what I’d call transcendental.

Maybe intuitive leaps are transcendental, but they must be provable after the immediate inspiration. Knowledge therefore must be repeatable and verifiable, like a truth or fact. But if one learns something in a way that can’t be reproduced, it likely could be transcendental. It can’t be unlearned, but it also can’t be systemically reproduced.

To understand transcendence, I return to Oxford Dictionary
Definition of transcend: “be or go beyond the range or limits of (a field or activity or conceptual sphere).
From Latin transcendere, from trans ‘across’ + ‘scandere ‘climb’”
Therefore to cross a threshold and to climb conceptually or spiritually
Definition of transcendence: “existence or experience beyond the normal or physical level”
Definition of transcendent: “beyond or above the range of normal or human experience
1) – surpassing the ordinary, exceptional
a. (Of God) existing apart from and not subject to the limitations of the material universe. Often contrasted with IMMANENT
2) (in scholastic philosophy)
a. higher than or not included in any of Aristotle’s ten categories.
b. (In Kantian philosophy) not realizable in experience
From Latin transcendent : ‘climb over’”
Definition of transcendental
1) “- relating to a spiritual realm
– relating to or denoting transcendentalism
2) (In Kantian philosophy) presupposed in and necessary to experience; a priori”
Definition of transcendentalism: “a system developed by Immanuel Kant, based on the idea that, in order to understand the nature of reality, one must first examine and analyze the reasoning process which governs the nature of experience.”

Therefore Transcendental Knowledge is knowledge that comes before or external to experience. This holds true whether God or the Spirit of the World is responsible for bringing the knowledge about (catalyzing it by divine intervention or laying out signs), or whether it is innately a part of the way one structures thought. If it’s innate, it means knowing something without being able to learn it. This is in fact knowledge, but can’t easily be explained or the conditions reproduced. Acknowledging unexplainable facts (or facts that can’t be reasoned. unreasonable) govern part of our lives acknowledges there’s an unknowable, ununderstandable, uncontrollable part of ourselves. Acknowledging there’s an external force that ‘pushes’ us so to speak to higher understanding, means we acknowledge we’re shaped by the world and therefore unable to wholly control our lives.
How one achieves transcendental knowledge therefore is either a spiritual journey directed more or less by an external force or by an cognitive journey directed by an internal force. Respectively, the sea of the earth of the sea inside. Regardless whether you choose external forces or internal forces, admitting to the attainability of knowledge which crosses thresholds and turns walls into doors means opening your mind or soul to possibility of a greater or higher mode of existence. It means accepting there are limits to what we know now. That means you yourself must accept one basic fact in the present moment: “I don’t know”.

Opera singer Stephanie Blythe plays ukulele

The other day I was listening on the radio to opera Live At the Met, and they interviewed mezzo soprano singer Stephie Blythe.  They asked her if about social media and there was an awkward pause they mentioned something ‘low brow’. She then said she uses social media to reach audience she wouldn’t have otherwise.  She went on to say that about 2 years ago she started learning ukulele and making videos for facebook and twitter.  Because of that, she made friends with people who didn’t even know she was an opera singer.

I’m a writer but horrible with social media, so I thought her positive support of social media was noteworthy.  After all, I went online and searched her name, then added a mental memo to dust off my blog and use it again.  The first new post being about Stephanie Blythe.

Here is her doing something complete different than her usual style

https://www.facebook.com/plugins/video.php?ref=https%3A%2F%2Fwww.facebook.com%2Fstephanie.blythe.1238%2Fvideos%2F1689463297767784%2F&show_text=1&width=560

And here is more classic her.