What Cancer Costs

Someone asked me the other day, “How much does it cost to have cancer?” He didn’t say it exactly like that, but that’s what he meant.

And so I thought about it for a while because I’m slow, Cancer Man has both Chemo Brain and CRS (please don’t ask what that stands for, I can’t remember). The gears ground for a week.

And I realized Cancer has cost, besides about a quarter million dollars (most of which Anthem covered, thank god!), Cancer has cost me my profession, my life, my personality, and some days, my sanity, family conflict, my day job, most of my hobbies, my enjoyment of food, and a bunch of other items I can’t rememeber right now, such as my memory and my ability to type clean copy consistently.

That’s kind of a lot.

On the other hand, cancer has given me the gift of clarity. I can see now some things that are really important to me to get done in the next 90 days (since I might be dead after that time, like, mid-March or so).

One thing that has become clear to me is that I would like to see my book Werewolves next to Silver Switchblade up on my Amazon store before I die. I mean, I’ve worked on it for 5 YEARS. It’s time to let it go out in the world on its own and live in some other peoples minds. Therefore, Sharon and I completed a final draft, which we then sent to Kristen (one of my oldest friends, and damn if she isn’t some kind of awesome) who has kindly taken on the task of getting it and its supporting materials together and formatted for Kindle.

One of those pieces of supporting materials is the cover. I made two versions. I painted them. I’ve started working with watercolors, and dang, it’s a satisfying job. Here’s the first draft of the cover-

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But I wasn’t satisfied. It doesn’t quite look like finished work, and it doesn’t quite work with some other stuff that I’d already made/written, so I decided to do another version. You’ll be able to see that cover soon, like a week or two when it goes up on Amazon. Assume, mid-January, knowing me and deadlines.

 

Wife!

And then I remembered the recycle bin. This is the kind of wife I have. She went through that pile of medical bills for me and added them up and filed them and paid some and so on. You can imagine what a fun day that was for her (NOT!).

billsCancer cost my wife a day of doing medical bills, on top of her already demanding full time job as a school librarian. Now, that pisses me off.

Now, you too know something about what cancer can cost.

 

Transom

In the fall, I shot a self portrait with Jasper.

Please don’t call it a frickin’ selfie.

I’ve been shooting self portraits for about 30 years now.

You can respect that sort of effort, can’t you?

Anyhow, I thought at first, I’d call it “Old Dogs.”

I like how the shadow looks kind of like a shovel over that graveyard green grass and the dog’s head, not to mention the spike that intersects my spine and disappears.

And I dig the split across the whole thing, like I’m straddling some kind of border or something maybe that transom that divides life and death. Who knows? You may read this selfie slightly differently than I do. Please, be my guest. There are of course many other elements in there that you can root out at your own pleasure, and I’ll not bore you with my read anymore.

Here it is-

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All you HEALTHY Lovely, kind people out there!

Yes, you! I’m glad to see you!

First off- Health Update: I’m fine as ever here, just a case of pancreas cancer hanging out there in my belly. Last week’s CT scan showed no changes, and CA-19-9 blood marker remains normal at last draw. Yay. So there. A 90 day reset.

Maybe this isn’t something you want to contemplate. Death, 90 days from today. If not, you best stop reading now.

Anyway, it’s been occurring to me recently, that at any given point, I’ll probably be dead in 90 days. That is, when the cancer in my tummy wakes up again, it’ll take about 90 days for me to die. Essentially, in my case, this is going to be death by starvation. No shit. Literally. Hahaha. I’ll stop there. Anyway, yeah, when it wakes up, I’ll probably die about 90 days later. After a year and a half of this shit already, I just can’t see lasting much longer than that. I mean, I’m pretty firkin’ tired out as it is right now. I’m currently getting my ass kicked by oral chemo. Almost a year of this particular shit so far.

In case you don’t know. Just imagine.

1 – Don’t eat for 24 hours.

-Next, take an emetic, that is, take a dose of something that is guaranteed to make you vomit. If possible, take something that known to be toxic to your health; this way, you earn bonus points. 

-try eating something. Anything. Just try to get it down. Do this as soon as you stop puking from the emetic, because otherwise in addition to starving to death, you’ll also have a splitting headache from not eating anything for a while. Wrap whatever it is that you choose to eat in aluminum foil first. Then eat it. (Ok, so you don’t have to actually eat the foil. Well you do if you want the full experience, that is, to feel exactly what it feels like to me as, say, crumpled up foil, exits the body along with the used food.  But, you could just chew on the foil for 5 minutes, and that’ll give you the input experience. Mmmm, food, tasty…..  just like aluminum foil).

-oh yeah. Forgot. Start your day with a nice healthy dose of morphine. Say, 45mg slow release. Don’t forget to slam a couple of percocets first, so that 4 hours from now ( when it’s 11 am), that mystery pain in your side that no one can explain to you, yeah, the scary one, take the perky percs (NOT!) so that pain doesn’t come alive.

-Now, where’s breakfast?

-repeat for 500 dayz.

Maybe you think being stoned 24/7 is the dream. Yep. It is. Enjoy.

 

On the other hand, maybe your profession, like mine, demands clear thinking.

 

so

keep imagining.

What are you going to do with your remaining 90 days? You feel like shit terrible (just imagine having the flu, every day for 500 days, 500 for real, not imagined, real days, 500 of them), you’re also always stupidly drugged up, and you face certain death in 90 days. How will you spend your time?

I read my “about” page earlier today. I thought, “hope to update once a week,” hahahahahahahahahahahahahahaha.

Now, keep imagining.

There’s a drug that’s so cheap, it’s like a weed, that’s how easy this drug is to create and maintain. If you had some, your symptoms of vomiting and puking and throwing up your lungs while praying to the porcelain god, those prayers would heard. But there’s a catch. It’s frickin’ illegal.

How are you going to spend the next 90 days?

Imagine that you see a tall building, like the Empire State Building in front of you.

The door to the stairs is magically open, and unattended, so you start climbing.

You climb 7 flights and think, shit, this is stupid. Remember, you have the flu, and doing something like climbing even a single flight of stairs seems kind of ridiculous.

You climb 7 more, and think, damn, this is dumb.

You climb 7 more and think, how many more flights are there?

You climb 7 more.

Etc.

You get to the top where the door to the roof is also magically open and unattended. You crawl over to the edge of the roof where, unbelievably, in this human society, there is no safety rail or fencing of any kind. Yet, you edge your way up carefully, to the very edgy edge, one more step, is that what it’s called when you’re crawling, and you’re dead, that’s how close it is. Feels good there, doesn’t it? Cozy-like.

You feel cozy because, for the first time in your life, you feel truly alive. From there on your edgy edge, stoned out of your mind, dead tired from climbing a million stairs, you can finally, clearly see the contrast between being alive and dead.

What are you going to do with the next 90 days?

Job?

Huh? Just stop that noise. I don’t have time for that. Seriously, don’t make me giggle. It hurts. You know, that mystery pain in my/your side.

Blog?

Don’t make me laugh.

Market a book?

Now, even I’m laughing. That’s my name, after all, Mr Laughter.

Smoke some pot?

Hmmm.

I think, I’ll go play some guitar now. How about you? Perhaps you’ll take a moment and thank god for your health.

 

ps- to earn extra bonus points, you can also mail me some weed because a)I need it and b)I don’t really care about marijuana laws anymore. I mean, what are they gonna do? Put Cancer Man in jail? Please. Anyway, just kidding about sending me dope. Really. Jeez. But, if you do, please package it in a mason jar so that it don’t stink up the post office and don’t put your real return address and don’t use  a heat seal plastic freezer bag thing because the heat of the machine burns off all the good stuff. Really, seriously here, don’t go out and break any laws. That would be frickin’ criminal after all.

pps- an hour later…

I just got back from walking my dog. He’s probably the reason I’m still alive; walking him every day, it’s exercise. This action requires me to descend a flight of stairs. Thank god I was high already or that would have been treacherous. And then… at the bottom of the stairs… by the mailboxes for the building…omg…i thot, “Sweet!” because the floor was littered with packages. Dang. None of them were for me.

Remember, if you actually mail anything illegal, it is a federal crime which will probably result in drones bombing your house or the fbi mailing your ass to guantanamo.

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door

door* by sal laughter

I am have become death Unto
I am Newborn
Dwelling as I am
on The Threshold
of Light &
blackness, no, darker
than that
I am Blonde,
Japanese-su Bronde-ah
Bearded
Hairless, Baby Mice, my balls
I am an ideal world
a door
with a port in my neck
here I am, ajar
purpose built as if for flies
seen from mirrors instead of eyes
touching with gloves instead of hands
are you hearing with headphones
who do you then there recognize
I Am the stuff
That you wish you could dream of
a Kissing booth in hell
red
The contents of Black &
White Horses
here I am standing beautiful, radiant, shining Son
the moon, Palomino
In The Night
The Dawn Where
I Dwell
Between Here & There
Lke Smoke,
or a door

 
*see photos or costumed actor

 

 

DF9G1N presents an LP’s worth of music: 5XS

I’ve been collecting recordings of my music from essentially day one, like 5 years ago when I first made a real commitment to learning to play music. From the get go, I knew that repetition and looping were going to be a big part of my sound, so along with the guitar and amp, I bought a few effects pedals that I thought would help. I use essentially these same pedals today, slightly different versions of the originals, but mostly the same functionality.

I use a wah, some dirt, some sparkle, a delay and two loopers. Into this chain, I feed guitar, vocals and a tiny synth, a Korg Kaossilator, to make music that comes out of two small guitar amps. One of the loopers has the capacity to record everything that comes through the chain, so I sometimes use this method to make a recording. Otherwise I use a laptop, a couple midi controllers and Ableton Live to do almost exactly the same thing. Slight differences appear between the two rigs, the one big one is that one is geared towards live work and the other, studio recording.

Anyhow, I’ve been treating learning the guitar as about a fifth of the the stuff that I need to know in order to make music. The pedals are about 20% and so are the midi controllers, laptop, and Live. Amongst this simple setup, I’ve always recorded myself to kind of keep track.

This past year I’ve played more seriously because of cancer taking me almost all the way down, and guitar is some kind of therapeutic and doesn’t require much physical strength. I think, as the disease progresses, and I become bedridden, I’ll probably take up slide, so I can play with the guitar across my lap. This set of recordings comes, with the exception of “Karr,” from this past year and directly out of cancer.

If you like this stuff feel free to download it and share it with your friends. Here’s a quick link to a zipped up version of the whole LP all together-  I can’t quite figure out how to do that yet…

 

Health update: I attended a daylong workshop called Surviving and Thriving, Pancreatic Cancer. There was an excellent intro talk, and then breakout sessions. I attended the sessions on mindfulness and exercise. One new addition to my cancer therapy program arose from these classes- they mentioned that 2000mg per day (for 8 weeks to onset of relief) of ginseng can help with chemo side effects, especially fatigue, which is for me, the hardest part of this whole deal. I’ve been on the ginseng for about 3 weeks now, and through one chemo week. I think I may notice a slight change for the better. I’d have to analyze my notebook to see trends in sleep patterns, exercise and overall well being, but I think, there’s a hint of relief here. And that’s great!

I continue to meet and appreciate many helpful people in my day to day existence, and I am so thankful for all of you. You’re the best!

Noodler’s & An Illustrated Life

Lately, I’ve been reading an excellent book entitled, An Illustrated Life by Danny Gregory who examines the private notebooks of designers, artists and illustrators. Gregory includes a section on Mattias Adolfsson. He mentions that he draws with fountain pens and uses Noodler’s ink along with watercolors. Adolfsson’s work strikes me as amusing and compelling. I love flipping through this work and looking at the pictures. Like an interview, the text includes a short bio about each artist and then a page or two of commentary interspersed with the drawings. I find interviews quite useful as a sort of validation. I love that ping that comes when another artist mentions something that I’ve thought about myself or even carry along with me in my bag of tricks.

Here’s a page from my current notebook that I’ve enjoyed revisiting many times, although it is only a few days old. Perhaps this is a little narcissistic. Ah. So:

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He has a big head, doesn’t he? :-)

My father wrote with Parker fountain pens. I’ve tried both his and other Parkers, never to be satisfied with any of them. Somehow, I never encountered a Parker that would reliably feed for me. Plenty of people have had good success with these pens, but for me, I prefer Sailor, Noodler’s and Namiki pens. Irregardless of brand, pleasure comes anytime I make a line on a page.

Cancer news- no news continues to be good news. And I remain exhausted most of the time.

Guitars

I recorded today. And I found myself moving into a slightly different direction and handling the guitar slightly differently. I am usually a very light handed player, but lately I’ve been exploring the range of dynamics available on my guitars. It’s a satisfying pursuit. Thank you  Zane for giving me this idea!

Anyhow, here’s the clip all me, all written on the fly, no post processing, no crop, totally live:

If this sort of minimalistic metallic psychedelic grunge is your kind of thing, I’ll soon be posting an album length work that you can download for free!

ON THE CANCER STORY- I had a CT scan the other day. Miraculously, it shows no changes. Also, the CA19-9 blood marker remains stable in the normal range at last blood draw. I am happy to still be alive! I hope this finds all of you doing well and coping as best you can with any problems as they arise. Remember, if you need someone to chat with, you can always call me. You’re in my thoughts and prayers, all of you. :-)

Another Pre-lim Drawing

Although I probably should feel more of a sense of achievement, I do not. My new (hahaha) book is now undergoing a final proof before formatting for Amazon. I feel drained, as far as writing goes. The only excitement I feel now is towards these fun parts, the drawing, the photos, the polish. It’s not even work: a thing done simply to do the thing is life, and it is also enlightenment; a thing done as a means towards an end is work, drudgery. I keep learning this lesson over and over. I hope I do, learn, I mean.

At any rate, I carry on, and here’s the latest in the preliminary drawings. I did this one while sitting in a cafe, people watching, enjoying a coffee and a bear claw. That’s my favorite, a coffee, a claw, some people. I need to get out more. :-)

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I love the feel of the tools in my hands, the pens, pencils and oil pastels. It feels good to draw, to make a mark, a line and others that hook together. Feels good.

 

Health notes- this last cycle of oral chemo kicked my ass. I finished it Monday evening, and I’m still recovering. I cannot believe I am still alive. I pray each day for help for everyone, all of you, and my dog, my family, my beautiful daughter and wife. I hope these small notes find all of you well and happy.

Revision and Editing Take a Long Time

Well, if you have a nice batch of cancer brewing in your stomach, the editing seemingly goes on forever. I kept track of my time:

9/19 10-1

9/30 1-3

10/1 10-12

2/6  2pm-3pm

2/7  noon-2pm

2/13 2-3

2/21 4-5

2/25 1-3

2/26 1-2, p.60

2/27 1-2:30 p.64

3/4 11:15-12:20 p.75

4/14 1:15-2:30 p.93

4/18 1:50-3:05 p.105

4/22 11-1:45

4/24 2-3.

start at p.106 or so, end of Telephone Call, continue line editing

5/6 2-3 p.110

5/7 1-2:35 p.125

5/9 4:14-4:37 p.130

5/12 12:10-2:17 p.132 middle (blog, cancer update)

5/14 12:23-2:46 p.142

5/15 12:38-1:43 p.149

5/16 11:15-1:37 p.162 (blog update, oed w3)

5/19 noon-1:08 p.173 (Random Access from Werewolves)

5/20 12:47-2:00 p.184

5/21 12:14-1:37 p.195

5/22 11:11-11:43 p.201

5/27 10:56-1:11 p.212

6/9 2:22-3:31 p.216

6/26 11-noon p.218

6/28-9 off & on afternoons p.222

6/30 11:10-1:10 p.228

7/1 1:45-3:10 p.233

7/2 2:37-? p.239

7/4 2:20-3:04 p.247

7/5 12:57-1:45 p.252

7/9 12:53-3:20 p.273

7/11 2:18-3:07 p.281

 

And that’s how long it took me to revise and edit Werewolves. Sharon is taking a proofreading pass, and as soon as those mistakes are corrected, it’ll be time to format for Kindle and post. I am thrilled. This book has been a lot of work, and I’ve never taken so long to finish anything before. Mostly, I wrote one short novel or about 10 short stories each year. About 4.5 years for a single book seems way too long to me. But there it is- A)Time be time, and things take how long they take and that’s that, and B)I really can’t think of anything better to do than write stuff like this, so this is how I’m gonna spend my life- making scratches in the sand. Seriously, it feels damned good to have finished this thing.