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Loony Tunes

I haven’t been keeping up here as I have been in hospital, in bed or just couldn’t get the energy to write anything.

So much of October was a blur. They upped my painkillers and also upped my anti depressants which resulted  in serotonin syndrome. That is my diagnosis. At night I would start to hallucinate and be very confused. For three nights in a row I believed I was either in a South American guerrilla camp, in a German camp in South America or being held by the CIA. I would lie in bed and be terrified of the nurse who walked by or sometimes came in as I thought they were guards.

One night I tore out my IV and some other tube. That ended up with a rigorous struggle between me and three nurses trying to get an IV back in. I swear I hit one of the male nurses. It didn’t help that he had a foreign accent – this was in the German camp.

After one delirious conversation with a nurse I grabbed her round the neck and drew her close to me and said something like “I know I am going insane. You can tell Eva that it’s ok.” That was a very low point because I truly believed I had gone insane.  One time I was at home and I was convinced our house was connected to a Mexican Fast Food joint that was involved in the cocaine trade. A traumatic night not only for me but for Eva and it pains me to think how much I upset her. We made an emergency visit to the ER that night and I was hospitalised..

One day, very upset, I told Eva to call an ambulance. I was being poisoned by a spray we use on  dog housebreaking accidents. I begged her to throw the spray away. Another trip to the ER and once more a stay in hospital.

When they finally worked out what was going on I was really angry. As far as I was concerned there was no need to up my anti-depressants, God knows I was too dopey to really care. Once back down to earth I had a very frank exchange of views with the Psychiatrist and her cadre of students that followed her around.

Finally I was pronounced fit to leave and I did before they changed their mind.

Update: Turns out it was Fentanyl that caused the hallucinations. If I ever see that psychiatrist again I will apologize to her. However, I think she should have picked up on the Fentanyl side-effects.

Even when you can’t smell you do…

I thought I had written more here but in fact had only come up with a title.

I think I have entered the battle phase of my sickness. For about a week now it has been harder and harder to eat. My throat hurts when I swallow, but the worst is the smell.

When you bring food to your mouth the Medulla Oblongata, i.e. the lower half of the brain stem, get’s all jiggy from food-related sensory input. The feel of food in the mouth or thoughts related to food send signals to the medulla to stimulate the release of pepsin and hydrochloric acid, both stomach chemicals which play a critical role in the digestion of your baconeggandbean burrito.

But what happens when your Medula gets all all spazzed out by the cancer meds? In my case every time I bring food near my mouth I smell this smell, this nauseating smell, which turns off my yum-yum food receptors and turns on my stand-back-this-dude-is-going-to-puke alarms.

I have a theory.

Because of drugs and or surgery, my  taste & smell tackle has been effectively closed down. However I theorize that there is a fundamental, basic – if you like, odor and taste on which others are based.

This rudimentary taste, let us call it that pukeydeadhedgehog smell, is the only thing you smell. I was filling up with Costco’s 93 octane the other day and I took a whiff of the gas/petrol and even it smelled of pukeydeadhedgehog. Petroleum products, as you know, have a very strong odor mostly because they are made from gigantichedgehogs. But my own pukeydeadhedgehog smell quickly over-rode the other, prehistoric, smell.

So this is where I hypothesize more… Except I can’t because I feel like shit, my brain hurts, my throat hurts, my skin is dry, I am constipated, I find it hard to swallow, I can’t remember the last real meal I had.

Thank God there is a gradual build-up to this stage. If you just went from well to this you surely would end it all right immediately! But there is a build up and it creeps up behind you till you get to this day.

Thankfully this too shall pass. And within a month or so I’ll be eating and drinking and singing ancient songs of my people that tell tales of giant hedgehogs and their inevitable demise.

And I’m svelte – did I say that? Shit yeah.

Protect your energy reserves.

The Pyronian craft hovered over the radiation department of City Hospital. The massive energy reserves in the Hospital’s nuclear-imaging banks drew Pyronian vessels like Craton sledders to a bucket of mushmeal.

Of course few, except those in a position of authority, knew this. The Pyronian’s cloaking system rendered them almost invisible. If you were to look carefully you might see a tiny schism in the sky – a small hard-edged buzz of static, but it disappeared so fast you’d put it down to the weather or a bothersome floater on the surface of your eye.

This stealth, this spectral existence ensured Pyronian hegemony in the skies. Let the Krats, Bulgons and Humans fight over diminishing reserves on the ground. Pyronians cared little for terrestrial affairs all they worried about was extra-terrestrial, extra-violent and extra-expensive.

I greeted the guard at Hang-Stop IV. “May your bladder float you and your kin for many years.” He was a Bulgon. A flappy, balloony, unimaginative race; the Bulgons have held lowly, security positions since the first wave back in ’07. But to give them credit they are stoic guardians who would rather die than forfeit even a meter of our blood red dirt.

“Move on in peach citizen!.” Responded the Bulgon. Almost correct, but I didn’t want to draw attention, so I nodded and moved on, over the Gradean Perimeter, into Obamar. In peach.

A pox o’ your throat, you bawling, blasphemous, incharitable dog!

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Fifty Days Post Surgery

oaxaca

Cut or tear here

cut-here

EG had this great picture from the morning of surgery. If they hadn’t done it I was going to 🙂

Surgical Site Markers. #1 in a very limited series.

Damn you human-murine chimeric monoclonal antibody!

spotty

This happened almost over night. Day one I was a wee bit zitty. Day two brought mega-spotification. It looks worse when I see it in the mirror and angle my head to get the light just right. In fact this picture doesn’t do it justice at all. It’s much worse!

This is one of the side-effects of my chemo therapy. Cetuximab is an epidermal growth factor receptor (EGFR) inhibitor. Cancer causes cells to divide uncontrollably. Cetuximab turns off the uncontrolled growth. However the mechanism causing the skin problems is the same as the mechanism that suppresses the tumour. In other words if you want a belt & braces (suspenders) approach you have to live with the acne.

Sadly some patients would rather stop treatment than live with the rash. Luckily for me I blog about it and that makes me feel better. My only problem is that I want to explain it to people.

“I don’t normally look this spotty. I have cancer you know. Why are you looking at me like that?”

The man in the thermoplastic mask

mask

I must note that this is not me. But this is exactly how I look, except I have the foam lollipop and a slightly less aquiline nose.

Hurry Up & Stop

Early last Friday, long before the rising sun, you would have found us waiting in line for canned hams. We had a tip-off that a new shipment had arrived from Voroshilovgrad and I wanted to make sure that old bitch Burundukov didn’t buy them all before any other comrades had a chance. As I stamped my feet in the dirty snow Echo Golf turned to me, looked closely at my face and said –

“OMG you are getting the rash! The rash from the Cetuximab. It’s working.”

Developing a rash is indicative of the chemo working well. Over the weekend the affected area enlarged and I got more spotty. It looks like I got sunburned and then rubbed poison ivy or nettles all over my face. My scalp itches and when I scratch it gets very tender. Forget about shaving. Apparently I will have the rash for the duration of the treatment. Part way thru it is meant to calm down and hopefully, upon cessation of treatment, go away. It says here…

Today was my second round of chemo and my first round of radiation. I slept like crap last night but don’t feel too bad. We head off to the U.T.S.W. Stemmons Center. In the lobby is a giant, orange, glass sculpture by Dale Chihuly. I’m not very fond of his work but this piece is pretty impressive rising over two stories high. A friend of ours had treatment for breast cancer here and grew to loathe the piece. I can imagine that happening. It’s too fucking whimsical for cancer. They should get Damien Hirst’s The Physical Impossibility of Death in the Mind of Someone Living. To wit a 15′ long Tiger Shark immersed in formaldehyde – now you’re making a statement.

We’re about the first in the waiting room upstairs. Jerry and another nurse walk in and call out peoples’ names. They usually call two at a time. This goes on all morning. There are a lot of sick people in this room. Jerry draws blood for my lab work. He’s quiet today. A chaplain as well as a minister, he had to visit two families last weekend who had lost loved ones.

Back in the waiting room. Some people look very poorly, so near death you wonder how the hell they keep going. Some have given up on how they look and are in sweats or t-shirts and work-out shorts. Some women have scarves on their heads. Occasionally a couple will walk in and you wonder who is sick and who is caring. Some people come in on their own. I imagine some are there to get on with it get well and move on. Some are people who appear lost, fragile, alone. A beautiful old lady came in this morning with a great white and red outfit on. She looked marvelous. She wasn’t going with a whimper.

We are called into a chemo treatment room. This time the infusion part will be only an hour. But it always takes longer. The nurse doesn’t mess about and slams the IV in my wrist. Here comes my saline, then my happy Benadryl and finally Cetuximab. I nod in and out of sleep. No big deal – we’re old hands at this now. Moving on.

We go to Dennys to eat. I have a Santa Fe skillet which is chorizo with jalapenos, peppers, mushrooms and potatoes. Two eggs, whatever way you want them, are on top. It is good, maybe my sense of smell is returning. I like places like Dennys. To me they are so innately American. The diner, the hot rods, girls with letterman jackets, packs of cigarettes rolled in t-shirt sleeves. The imaginary home of my youth.  i.e. American Graffiti meets Taxi Driver.

We head back for my radiation appointment which is in another building. I don’t know why but the waiting area for radiation is pretty small and because they were closed for Labor Day it’s getting pretty full with people catching up on treatment. One woman has had her last session and leaves awkwardly holding her restraint mask in one hand.

Another man has a hole in his neck and can’t really speak. An Asian woman and her daughter arrive. The mother is dressed in a pink robe. The daughter is in a very smart black dress. The mother looks like she would rather be anywhere else. Why did she just appear in her robe? The daughter is trying to care for the mother but you can sense that the mother doesn’t want to be cared for, or maybe not cared for in public. No room for airs and graces here. Cancer – a great equalizer.

I am called in for treatment. I walk past a veritable Mission Control of monitors, dials, switches. The radiation room has a door about three inches thick. It is very heavy. I lie down on the very narrow positioning table. A machine that costs many millions of dollars lurks nearby, its green laser guides cut the dimness of the room. Robotic surgery, restraining masks for radiation. Science fiction stuff this – science fiction.

They put on my restraining mask and because it is my first time we have to perform some measurements to check the mask, relative position etc. I have about three inches of table either side of my body to place my arms. You must not move. They place a white foam lollipop in my mouth – it keeps my tongue in the right place.

Radiation starts. The lights dim in the room, massive toroids bursting with death-ray rotate about my head. They start the music. New York, New York percolates through the pinging of alarms, the shuttling of stepper motors and the rising whine of generated energy.

Like the Gimp I lie immobile, a foam lollipop in my mouth trying to figure out how the hell I got here.

Start spreading the news, I’m leaving today

And We’re Off

This past Monday I had my first dose of Cetuximab. This is the chemo I am getting as part of the trial I am on. Eight weeks of Cetuximab costs about $30,000.

The Oncology waiting area is quiet when we arrive shortly after 7:00a.m. I have some blood drawn for lab work. Jerry is the nurse who draws the blood. I’m glad it’s Jerry because I saw him come out a couple of times and the regulars, who know him, brightened up on seeing him. He’s been doing this for thirty years. He gets a needle in like no other, fast, painless, perfect.

Jerry goes on missionary trips to Europe. He passes thru London. Jerry asked me if I knew Brixton. Of course, used to live near there. I told him about my experience when the Police ‘De-criminalised’ pot in Brixton. We were driving thru late on a Saturday night taking my nephew home. The streets were packed with people buying and selling pot. It was insane and personally I found it quite scary. Not sure if that experiment continues – I doubt it.

I am called thru for treatment and Eva joins me. I’m grateful she can come with me to most appointments. The chemo treatment rooms are about 15′ x 15′. There is a TV on the wall, two lounge chairs and for the patient a large reclining chair with swing over work surfaces. You can bring your laptop and work if you want. You can also watch TV or DVDs. Down the corridor is a break room with snacks and drinks and a microwave if you happen to bring your lunch. There is an air of quiet, efficiency.

There is a some delay because the person in charge of the trial is missing and needs to see my lab results before she gives the go-ahead. We wait a lot. In general we wait a lot. If they say your appointment is at 2:00p.m. you might be called around that time and you think “Great – we are getting on with it.” But all they do is take you to a different room, ask some questions and leave you to wait again for whoever you have to meet. I normally expect about an hour to elapse between the appointment time and the actual time I see someone.

Devrie is the nurse who is going to carry out the treatment. First she tries to get an I.V. in me, but apparently I have ‘rolling’ veins. Rolling veins are veins that run away from the needle, thus making it hard to penetrate them. Another nurse is brought in and finally gets plugged in.

Because of the nature of Cetuximab, I am given liquid Benadryl. This helps prevent any allergic reactions which, in rare cases, can be life-threatening. Liquid Benadryl also makes you very, very sleepy. I am awake as the bag of Cetuximab is introduced into the I.V. but fall asleep soon after and stay asleep for the full two hours the treatment takes.

I felt fine that day. The next morning I have a terrible headache. I forget that I have a swarm of killer chemo warriors in my bloodstream and am surprised when I feel nauseous or get the horrible headache or just want to lie down. I keep thinking I am ‘well.’

After the surgery I thought that the worst is over. I’m starting to feel that maybe we have just begun.