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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 6, 2010 - 04:50am PT
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Went to Jim Donini's show in Berkley. Good stuff.
Met a few STers there including SCseagoat. Great to see ya! Don't sweat hair and chemo thing. Tell people you are shenade o,connor (sp?). Really, though, keep going.
Ruth and I popped in, watched the show, and popped out. Not much mingling. Ruth teaches yoga at 7 am the next morning and my feet are killing me from drug side effects. Fun, fun... Got home, too much rock in my head, can't sleep.
I wondered how I would feel going to a slide show about climbing. They usually rev me up to get out NOW. With my condition, I can't run out and climb. I left inspired yet a little melancoly about missed / rejected oportunities in climbing.
My skin is gettting scalier and itches like crazy. the pads on my feet seem to be impaled on nails when I stand, and ache when I sit. Poor me. Its like having poison oak and standing on tacks. Wierd side-effects.
Tumors are smaller, that's why I am putting up with this crap. But the number of pills in my box increases instead of decreasing. I am what I eat.And what I eat are chemicals.
Feel like I am starting to live up to the mutant thing. It is like I m in the middle of the Disaster Master mutant origen story. Comic on a news stand near you soon.
itching on
-Paul
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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 9, 2010 - 08:42pm PT
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What's up with cancer ribbons anyhow? Especially Melanoma. The color for melnoma is BLACK! Let's just put a mourning armband on. That's supposed to give me hope?
what's your cancer color?
Cancer Awareness Ribbon Colors:
Bladder Cancer
Yellow
Bone Cancer
White
Brain Cancer *
Gray
Breast Cancer *
Pink
Cervical Cancer *
Light Teal
Childhood Cancer *
Gold
Colon Cancer *
Blue or Brown
Esophageal Cancer
Periwinkle
General Cancer *
Lavender
Head & Neck Cancer
Red & White
Kidney Cancer *
Green
Leukemia *
Orange
Lung Cancer *
White/Clear
Lymphoma *
Lime Green
Melanoma *
Black
Multiple Myeloma
Burgundy
Neuroblastoma
Gold
Oral Cancer
Red & White
Ovarian Cancer *
Teal
Pancreatic/Liver Cancer *
Purple
Prostate Cancer *
Light Blue
Stomach Cancer
Periwinkle
Thyroid Cancer
Teal, Purple & Pink
Uterine Cancer *
Peach
I looked up why melanoma is black:
"Why The Black Ribbon?
Melanoma means "black tumor"
Black is the color of the warrior's mood when going into battle and the melanoma patient is in the battle for life.
Black is our rage when we consider the lack of progress and lack of research funding going on after 25 years of the so-called "War On Cancer"
Still don't feel any happier...
The side effects got so bad I called the Doc. He said stop the pills and come see him. Just got back tonight.
My feet hurt like I've pounded out 40 miles in bad shoes. The rash is now body-wide. Looks like chicken skin. (Sigh)
He wants me off the drug for around a week to see if the rash and pain go away. Then hopefully an adjusted dose. Such a roller coaster.
Fairly down. Don't want to give the cancer a chance by stopping the pill, but, God, the side effects suck! We will see. The docs are more hopeful than I am.
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SCseagoat
Trad climber
Santa Cruz
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Dec 10, 2010 - 11:13pm PT
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My thoughts are with you. Just got back from chemo, tired, but jagged up on the pre med steriods. I hope that your docs are able work with your side effects and make them go away or minimize. They sound just horrible. And yeah, I'm not impressed with why melanoma awareness is black...although black can be a very powerful color... Black Ops; Ninja gees; good color for power clothes....so I guess go with the stealth and powerful nature of black. Susan
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Jan
Mountain climber
Okinawa, Japan
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Dec 10, 2010 - 11:48pm PT
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Paul-
The one main thing I learned from my friend's battle with leukemia is never to give up hope. At one point he had twice the fatal amount of white blood cells, total liver and kidney failure. All but one doc had given up on him, yet he survived and 8 years later is fine.
As for your mental description, it sounds like another version of the guilt of the survivor. I went through it when my husband was killed but I didn't know until now that one could go through it on one's own behalf as well. It does make life more serious as one can't help but think we were spared for some bigger purpose. It too takes a long time to get over.
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okaythatsme
climber
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Dec 14, 2010 - 02:49pm PT
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Hey Paul,
Don't know if you've been getting my e-mails but thought I'd drop a line via this forum. I check here to see how you're doing. I'm sorry to hear about the side effects. Continuing good thoughts and hope sent your way. I'd like to send you some photos I have (prints / cd) of you and your siblings if you'd like -- just need to know where to send. If you get a chance send me a note. Lot's of people up north thinking of you and sending their love. -mh
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nature
climber
Tuscon Again! India! India! Hawaii! LA?!?!
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Dec 21, 2010 - 11:49am PT
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Hey Paul.... what's the latest with you.
Give us an update, please.
peace brother...
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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 21, 2010 - 01:09pm PT
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Return of The Yogi.?!
(THE FOLLOWING IS EXCERPTS FROM MY JOURNAL, AND ATTEMPTED E-MAILS THAT NEVER WERE SENT. IT MAY SOUND JUMBLED TOGETHER, BUT SO ARE MY THOGHTS AT THE MOMENT.)
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“RO5185426.”
“What?”
“RO5185426. The drug formally known as PLX4032. It's effects rule my life right now.” (Let's back it up a little bit...)
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When we last left our attempted hero, he was in the throws of mutation–driven experimental drug therapy for Stage IV Metastatic Malignant Melanoma. (Quite a mouthful.) Earlier non-targeted chemo and mystery molecules had failed to shrink the tumors, instead shrinking Paul down to an astoundingly svelte 128 lbs. He was becoming the “Almost Invisible Man”. Not a good thing.
Despair, and delayed-onset-teen-age angst, (entirely appropriate for a hero origin story),conspired to crush his spirit. His constant companion, Ruth, continually buoyed Paul's mood and braved the mental anguish of witnessing the grotesque and loudly painful transformation. But all seemed inevitably lost.
...Then the moment, we thought, the spider bite, the Gama ray burst, the whatever comic book moment came (and went): RO5185426. A pill so highly promising it was virtually on a pedestal. Doctors got that 16-year-old-girl-with-a-crush look in their eyes when discussing it. And patients felt a strange near-forgotten emotion...Hope.
The drug worked. It seemed almost miraculous! The mutation was nearly complete. The tumors were very small, perhaps even gone. Body weight was up to 143 Lbs. The sun was dawning a bright color indeed...
Then it burned him. Rashes and bumps appeared, first on the scalp then spreading down, like a colonizing horde of chicken skin nodules, all the way to the feet. Each swollen pore seemed to contain a needle, pointed at a nerve. (Itching is not the strong word needed for the sensation.) Then, insult to injury, the pseudo-hero was hobbled again.
Side effects, they wreck the party. They are the kriptonite of pharmacology. The needles turned to nails in his feet, demanding he sit each time he tried to rise. Pain soon had him pounding his sad head against a metal door, and slamming his fists against the floor.
RO5185426. Withdrawn. Transformation on pause. The side effects are too strong. Now denied the wonder-pill , our mopy-marvel waits for his skin to clear, even as his mind grows foggier...
(to be continued...)
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So that's your friendly neighborhood mutant update.
Life is problematic right now, a bit confusing. I seem to be riding a medical wave. I have access and respond to treatment well enough to surf along until the next drug / therapy. I might not be healthy, but I might be around longer than I thought.
Strangely enough this creates a disconnect in my mind. I just got used to the idea of this being my final fight. I was on my way out. Without the treatment I am going through now, I believe I would not still be here. Good news, right?
Yes, Of, Course!
But now my mind must adjust again, to a life as a perpetual Guinea pig. The treatment of melanoma is not a done deal by any means. New things are happening RIGHT NOW. But now my mind must adjust to the long term again, along with a constantly changing eyes-wide-open view of mortality and lifespan. It is one hell of a ride, emphasis on hell.
Life is a sludge I push through , right now.
Don't worry, I am fundamentally fine. But it would be only BS to say this is anything other than a chore. I must carry on, though. Thank God I am not alone. Somewhere in between the tantrums and the laughter is a peace to be gained from this. Haven't found it yet, but I am on the trail.
If I can get this nerve pain and rash to subside I will return to a slightly lower dose of RO5185426. If only my feet will heal so I can walk, I could put up with the rest. I see a podiatrist today for advice.
Above all, it is the love of those near and far that help. Most of all Ruth. She witnesses and co-experiences all the madness of this disease right next to me. Everyone should be so blessed with such a partner. And no such partner should ever be cursed with having to endure their lover's curse.
Much hope and love,
Paul.
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Took a nap. Woke up and the tumors are growing. (Shit!)
The one on my neck I use to gauge the progress had virtually disappeared. This morning, not there, this afternoon... it's baaaaack! What is going on? Am I doomed to choose between types of discomfort. Alive and crippled ...or dead? What a choice... if those are the only choices.
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(Days passed...)
My feet have been x-rated. It's “only pain”. No bone spurs, no nothing. I devourer the shoe department at Big 5 to find shoes to help ease the foot pain. I leave with new shoes, a wake of boxes and strewn rejects behind me on the floor.
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Kriptonite of the Mind...
With the pill retracted, our hero's mood darkened further. The cancers had puffed back, like they simply woke up , stretched and got back to it.
“Screw it!” He was overload, and his mind played down the self destruct sequence...7...6...5...4....Dark images rushed though the Conquered Crusader's mind like the hot beam of a laser of despair, burning out not the cancer but his resolve.
He shook with the struggle.
Who is this foe inside him? Has he turn against himself? In other words, What The F*#k Is Going On? Even sleep offers no refuge.
(to be continued)
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The only way to it is through it.
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I think about my mind, as a child, as a field of view, reaching out in 360 directions simultaneously with a smile on my face. Then I see me now, my mind entrenched, mostly blacked out, lighting up only what I believe I can handle.
I remember a time when it felt as if I could handle it all. Each breath was an adventure. Every new thing was a shock, yet a pleasure, all at once. Why do I shake when remembering these days?
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They gave me back the pill, at a slightly lower dose. Five days in and the tumors are not shrinking again yet. I hope they will. The Docs say they will. I get scanned in a couple days to see where its at.
It's crazy. My nerves make me quiver trying to process it all as I type. The only thing that helps is pranayama, the breath.
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I just got an e-mail from my good friend Tom. He will be in J-Tree over the New Year. My Dad and his wife Marilyn live in Joshua Tree now. Ruth wants me to get there and decompress, even if she has to work. But we will see.
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That's the unorganized cut and paste ramblings of back against the wall Paul. Don't worry too much. Not done yet.
Here is something I remember writing on the Pacific Crest Trail that might explain my ultimate view...
Body And Sole on the PCT
Blisters.
Sores on these damn feet.
I am hobbled
by my own Ambition.
There's a knifing pain
in my damned right knee.
The tendons are rebelling.
I have but ten more
to go today.
10 miles of hills and heat.
Damn feet.
What I need is shade,
and freedom from flies.
And at last it comes,
under creek-side oaks,
past the poison kind,
near a cool, cow visited
seasonal trickle.
Long droughts pass the time
as I hide from high noon,
sweat drying to salt
on my lips and in
the corners of my eyes...
Damn feet,
time to go.
Got 4,000 feet
still to climb.
4,000 feet of
sage brush and buzzworms,
of hills and heat.
There's got to be a tree
up there somewhere...
Look at that!
The land drops away
in waves of shimmering heat,
down from this
blessed tree I've found,
to a vast barren
granitic desert....
I wonder what's up ahead?
Clutchin' & Clawin' on,
Paul.
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Fritz
Trad climber
Choss Creek, ID
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Dec 21, 2010 - 02:41pm PT
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Still thinking positive thoughts for you Paul.
Keep on Clutchin' & Clawin' on,
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scuffy b
climber
Three feet higher
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Dec 21, 2010 - 05:19pm PT
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Thanks, Paul.
You amaze and inspire me. I'm really sorry you have to go through such
hardship.
The gift of your writing is enormous.
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Seamstress
Trad climber
Yacolt, WA
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Dec 21, 2010 - 05:23pm PT
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You are the Master of a disaster. Best wishes for happy holiday.
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SCseagoat
Trad climber
Santa Cruz
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Dec 21, 2010 - 07:35pm PT
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thank you Paul. Your writing creates great poignancy and texture. Not much else to say...fellow CRACer! Susan
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Peter Haan
Trad climber
San Francisco, CA
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Dec 21, 2010 - 08:53pm PT
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This is one Trip Report where no one will be asking for current photos, I am sure. Sorry Dude it is so tough.
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sallyclimbs
Sport climber
new zealand
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Dec 21, 2010 - 09:20pm PT
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I live half a world away, but reading this, and having a friend find a mole she had removed for vanity reasons was malignent ,in the same week had me down the doctors for a check up. Got a mole removed yesterday. I'll be telling my friends to get a check up too. Thanks for the reminder to keep an eye on things
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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 22, 2010 - 10:41pm PT
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Ruth has prodded me off the couch and out to J-Tree. My friend Tom will be there, will YOU? Last week of the year or so. I am trolling Craig's list for a floppy pair of climbing shoes for my cinder-fella feet. They ache too much for my tight ones. (The Doc told me I shouldn't "Climb or do that rope stuff or anything strenuous". Ruth reminded me that I could climb at les than max. That counts, right?)
We trekked to UCSF MT. Zion to see the Doc again today. 1/2 day of the run around and more tests. For now I continue on a 3/4 dose of the wonder pill. One more potential trap tomorrow when we go back again to get me scanned. At least we will have visual evidence soon.
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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 23, 2010 - 11:16pm PT
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Got scanned today. Bad news: still got cancer. Good news: not as much.
This is one Trip Report where no one will be asking for current photos, I am sure. Here are some comparative scans from the past number of months:
A side view comparison:
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nature
climber
Tuscon Again! India! India! Hawaii! LA?!?!
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Dec 24, 2010 - 12:01am PT
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smaller is good.
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SCseagoat
Trad climber
Santa Cruz
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Dec 24, 2010 - 05:38pm PT
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OMG I don't do well with trying to figure out scans and ultra sounds and stuff like that...When the docs point out something like "this is your liver" I go "uh?, that gray shadow?" But I can actually see the the incredible difference in your scans. I've always wondered where it goes too...like we absorb it then pee and poop it out? Well anyway, it really looks like the pill is working on the tumors, now how to tame the side effects so you get survivorship with a reasonable quality of life!
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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 25, 2010 - 11:01am PT
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I can actually see the the incredible difference in your scans. I've always wondered where it goes too...like we absorb it then pee and poop it out? Well anyway, it really looks like the pill is working on the tumors, now how to tame the side effects so you get survivorship with a reasonable quality of life!
It does seem to be shrinking, so for that I am grateful. But the feet, skin, mood side effects are not that great of a trade off. I just hope my feet will allow themselves to be stuffed into little shoes. I hope I remember to re-aply sunblock so I won't blister in the Sun.
Details, details.
I just have to remember that , right now , at least , I don't look like this inside:When the future seems so un-nerving, it seems ignorance is inded bliss.
I put up a route years ago called "The Curse of Conciousness". Sometimes it feels that my route names turned out to be prophetic. "The Grounded Visionary", "My Up and Down Life."
Got to get my hands on my new D5 Hammer so I can go put up my next routes: " Out, Damn Spot!" and "Infinite Ascention".
They will be classics. I already know where they are...
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nature
climber
Tuscon Again! India! India! Hawaii! LA?!?!
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Dec 25, 2010 - 12:16pm PT
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Stay Strong Brother....
Merry Christmas to you and Ruth!
much love,
doug & tina
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Disaster Master
Social climber
Born in So-Cal, left my soul in far Nor-Cal.
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Topic Author's Reply - Dec 30, 2010 - 12:02pm PT
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Happy almost new year.
Ruth and I are in Joshua Tree. The weather is windy and cold now, but I managed to haul myself up a few routes before the weather changed.
Perhaps we will get to do some more before going home in a couple days.
The damn side effects are starting to flare again. My feet are a mess. But on we go.....
Paul
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