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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 14, 2010 - 03:10am PT
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Showed up in SF late. Drove in from the LA cesspool. My brother in law has extra points at a hotel downtown. Got us a room. Should be helpful, relaxing before the tests. But traffic and trollys and people and doormen and city BS... Where the hell are we? After being in the desert and woods for weeks, this place is nuts! We are not impressed with congestion and pretty lighted towers. So hope we can chill in this room now.
Tomorrow is the all day loop around San Fran medical appointment day. Could still be rejected for the trial if blood tests, etc. aren't just right. Nothing seems easy anymore.
HOPE????
HOPE, DAMN IT!!!!!!!!!!!!!
Grip slipping, holding on,
Paul and Ruth
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nita
Social climber
chica from chico.. I shall call you..mini moo.
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Oct 14, 2010 - 03:33am PT
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Paul,
Sending out wishes, hope and prayers....
Lighting a candle for you tonight..
Saludos..=..best wishes
nita.
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Crimpergirl
Sport climber
Boulder, Colorado!
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Oct 14, 2010 - 10:33am PT
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Best wishes. Keep us posted.
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 14, 2010 - 11:31am PT
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Sitting in the hospital with my butt hanging out of an examination gown. Let the madness begin!
Oh, yeah. Lost my wallet last night. THe thrills never end.
Probing on,
Paul
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martygarrison
Trad climber
The Great North these days......
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Oct 14, 2010 - 12:18pm PT
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Good luck and Gods speed
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ncrockclimber
climber
NC
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Oct 14, 2010 - 12:23pm PT
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My thoughts are with you. Hang in there!
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SCseagoat
Trad climber
Santa Cruz
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Oct 14, 2010 - 02:32pm PT
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You go. Be tough. Be a mutant thoughts are with you.
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Steve Grossman
Trad climber
Seattle, WA
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Oct 14, 2010 - 02:39pm PT
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Best of luck with your treatment.
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 15, 2010 - 12:15am PT
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After 7 appointments today, I find that there is something that lights up in my brain on the MRI. The tech doesn't like it. The Doc is worried. The trials coordinator is not happy.
I inform the doc that the spot was there over 3 months ago. The last trial tech called it odd, but not a metastis. That's the exclusion problem, cancer in the brain. It's only a guess unless removed. But it could be blood vesles, or remnants of my head injury. So the doc says he has ammo to get me on the pill. But I need to send the old report etc. One more HOOP!!!
Back in Santa Rosa at home. Tomorrow I track down the tech from the old test and get him to say what he wrote 3 months ago to the new doc. then it should be fine...???!!@@
Tomorrow we rise again.
DM
PS Ruth ROCKS! Drove from LA to SF, found parking at night downtown, got up and dropped me off at all appointments, found parking, got the car, picked me up, drove all the way home and is finally sleeping on the couch. I love her.
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Tony Bird
climber
Northridge, CA
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Oct 15, 2010 - 12:26am PT
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thinking of you, paul--good luck in the medical maze.
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 15, 2010 - 12:41am PT
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Hey SCseagoat,
How did your doctor day go? Let us all know when you can.
Climbing with you,
Paul H
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 15, 2010 - 12:12pm PT
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Got up early and found the report I need to send to the doc to try and proove that there is not melanoma in my brain. I can't get the wonder pill if there is.
Found the report. I caned over to Office Depot to fax it. The fax woud not go through. I waited. I called the doc. The # was right. Waited some more. It feels like I am being turned inside out! Stress-tacular.
The fax went through! I called to confirm. The wording is good, but not definitive. So it could still go either way.... AAAAAAAARRRRRRGGGGGGGHHHHH!!!
Still waiting for the Roman thumb, up or down?
Limped home. Kept repeting to myself: "Can't collapse. Got to fight, muther f*#ker. Fight! Got to fight. There is no flight. This is the middle of the rock-fall. Got to reach the col! Then I can breath for a moment before the summit. Damn, got to fight!"
Paul
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 17, 2010 - 10:00am PT
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Can't sleep. Waiting for word on the PLX trial is driving me nuts. Sent off the info that I hope will let me on the test. But it is not cut and dry. NO word and now the weekend, so one more manditory waiting day today, I guess.
It seems rediculous to me that they have a pill in a building somewhere RIGHT NOW that is able to shrink tumors in 60-80% of people like me with a BRAF mutation, yet won't freely give it out. Spare me the clinical trials for the greater good argument. Real live people will be real dead soon if not treated with a substance that is known to work, but unavailible even as a compassionate use measure, because that company is afraid of legal / marketing implications.
The gene targeted approach to these new drugs, along with others, renders the traditional study system moot and out of touch. Basically, the system requires a certain number of sick PEOPLE to die to prove their point and patents. That's the real sickness.
I don't usually rant, but this is real an involves my quickly ending life if not treated. So I am nervous as hell as I await the signal from the medical experts on high whether I live or die.
Sigh,
Paul
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rlf
Trad climber
Josh, CA
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Oct 17, 2010 - 10:12am PT
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Hang in there. I can't imagine how difficult and frustrating this must be for you.
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 17, 2010 - 10:14am PT
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http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&emc=eta1Check out this NY times article. Heartbreaking!
This is a response to the nyt piece.http://www.huffingtonpost.com/loraine-boyle/heartless-science_b_732521.html
Clearly it's time the rules changed as newer and targeted drugs are being developed. If two new cars were developed and one buffered the driver in a crash 80% more than the other, would the public be expected to try their chances in the unsafe car just to prove the effectiveness of the safe one? It's time the FDA changed its rules so that the Brandon Ryans of this world don't die without having a fighting chance. I'm no scientist but from what I've read, PLX4032 sounds as if it works to prolong life with less pain even if it is only for a few months.
Think of how many beautiful sunsets and walks in the park you can enjoy in a few months. Maybe it gives the patient a chance to see his child take a first step or to graduate college. How do human beings in the name of science deny this?
A very good question.
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blackbird
Trad climber
the flat water trails...
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Oct 17, 2010 - 10:18am PT
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Thinking about you and sending you good thoughts and energy!!!!
All digits and limbs crossed and followed Nita's lead: there's a candle lit for you.
bb
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JOEY.F
Social climber
sebastopol
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Oct 17, 2010 - 02:16pm PT
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Sending good vibes your way, Paul.
I believe, after looking at the pics, I have seen you at Vertex.
Best wishes to you.
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Crimpergirl
Sport climber
Boulder, Colorado!
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Oct 17, 2010 - 02:27pm PT
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Each time I see this thread bumped, I race back in hopes to see you posting good news. Thinking of you. Cancer simply sucks.
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Disaster Master
Sport climber
Arcata / Santa Rosa, CA
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Topic Author's Reply - Oct 17, 2010 - 07:08pm PT
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Joey, yeah, you've seen me at VERTEX. Maybe I will go by soon to try and keep training.
Crimpergirl, I'm sick of complaining too. Wish there was good news. Might still be, though. Tomorrow I call the trials coordinator to try and push it through.
The interesting part for me is the part of my brain that is lighting up on the MRI and causing the trials roadblock is responsible for pain management and general conciousness. I have used meditation and yoga, along with other mind training techniques to manage my chronic back pain for 7 years....(Insert Twilight Zone Music)
C-ya,
Paul
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okaythatsme
climber
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Oct 17, 2010 - 11:14pm PT
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Hi Paul,
Checking in from Arcata and sending you encouragement. I know you are tired. -marcella
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