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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 - Jan 12, 2011 - 07:43pm PT
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I got side tracked by starting another thread the other day. http://www.supertopo.com/climbers-forum/1375736/AAAAAARRRRRRRGGHHHHHHH Bringing it back home now.
We just got back from UCSF Mt. Zion. It was time to start round 4 of the RO5185426, the pill formerly known as PLX4032.
The Doc and the study advisor both came in to see me. They looked happy. The latest scan from a couple weeks ago were in. They showed a 50 percent decrease in size of the tumors over all. What they did not know yet was that since then the main mass in my groin had grown. Another active tumor in my neck seemed larger too. I told them.
Their faces dropped. I felt like a fart hanging in the room. I explained how I had an infection and a tooth pulled on New Year's Eve and my Doc in Santa Rosa gave me antibiotics. They did not seem to help the pain.
After an exam we talked ideas. The tumor in my groin was bigger than the scan. My disease was progressing again, but maybe not to the level yet that I HAD to get of the trial. But the Doc's oppinion was that the drug has stopped working for me and the illness will likely continue. I asked to stay on the drug another week at least while I weigh my options.
One is interlukin 2, a hardcore in the ICU for 5 days therapy with bad side effects. Another is an experimental trial that includes CHEMO. I had chemo. I hate chemo. Other than that, localy, there is not much else. Lots of things "on the horizon", just not in reach for me, yet.
So...Good thing I took this pill. It shrunk the cancer and gave me back a lot of strength. Damn that pill for quiting on me.
I am healthy enough to start new treatments. But those treatments will sicken me in the short term at least.
None of the options carry better odds than 15 percent. At least it's not zero.
I could just accept my time is near. Perhaps the point of getting ill is it is time to die. Hope not...
I am left on edge, run out, pumped and out of gear. Oh, dear.
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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 - Jan 13, 2011 - 12:17pm PT
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Here is the real reason I keep posting here:
bmacd
Trad climber
Grade V, Level III certified Kook 100% Canadian Sep 22, 2010 - 03:45pm PT
Paul, go easy on yourself man. I'm making an appointment to get a few things checked out because of your thread.
Nature wrote: I don't have any moles that I'm aware of. but dam.... I might look again,
silentone
Mountain climber
wisconsin Jan 9, 2011 - 04:46am PT
Paul,
I had a malignent melanoma removed about 10 years ago and have recently noticed some odd looking moles. You have inspired me to get them looked at this week. Sometimes I don't want to know what might be wrong with me I'm stuborn and prideful but I want to live. I have so much left to do.
rincon
Trad climber
SoCal Aug 11, 2010 - 09:11am PT
Hey Paul,
I've had skin cancer too, though I am very lucky that it hasn't come back. They used some kind of hot scraper tool to scrape off the skin, now there's just a small white scar there. Had other cancer too...NHL has been f*#king with me since '03, been through the chemo and like you, I still climbed. Currently, I have my fingers crossed, hoping the monster inside me, doen't rear it's ugly head again.
zeta
Trad climber
Berkeley Aug 11, 2010 - 09:22am PT
Paul,
thanks for the reminder, especially as we all spend so much time outside. I used to be way too casual about sunblock, but now--after two basil cell carcinomas--I am super careful!
SteveW
Trad climber
The state of confusion Aug 11, 2010 - 11:56am PT
Paul
I've lost a number of friends to melanoma.
I certainly hope you beat the odds.
I'm smarting today, just had a couple of biopsies done on
my lower lip that may be cancerous.
Mungeclimber
Trad climber
sorry, just posting out loud. Aug 19, 2010 - 11:14pm PT
Paul,
Thx for the post. I have a mole I've had since a kid on my leg about short length too. Worthwhile to check it out.
Seamstress
Trad climber
Yacolt, WA Aug 23, 2010 - 05:09pm PT
Best wishes.
I had cancer removed from my hand and from my face just above the lip. These are places that I did not formerly slather with sunscreen. Somehow the arms always ended at my wrists. It's time to go get checked again.
crøtch
climber Oct 5, 2010 - 10:12am PT
Hey Paul,
Your attitude is an inspiration. I got a mole removed today. Thanks for the motivation to go to the dermatologist.
Blackbird wrote:I am one of the truly lucky ones: both of mine (uterine & ovarian) were caught WAY early. I shunned "new" meds (chemo/radiation) in lieu of alternative therapies and lifestyle changes. It's amazing…
PLEASE, folks, if you're not already so, become acutely aware of your own bodies and what they are trying to tell you. Subtle changes in skin tone, moles, hair texture and even your smell can indicate some serious health issues. And to repeat the message: when in doubt, check it out!!!
dougs510 said: I sit around here, feeling sorry for myself, with moles and sh$t popping up all over me. I say to myself, "I don't want to know, besides, I got no insurance". Truth is, I'm scared of knowing. Sheeeewwwwww..... Man, I'm so glad your posting up here, it's really giving me a reason to push forward
Jan
Mountain climber
Okinawa, Japan Nov 25, 2010 - 07:03am PT
Happy Thanksgiving to you too! You have certainly reminded us of what's important in life and what we need to be thankful for
sallyclimbs
Sport climber
new zealand Dec 21, 2010 - 06:20pm PT
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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Dick Erb
climber
June Lake, CA
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Jan 13, 2011 - 01:13pm PT
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Thanks Paul, for producing the most helpful stimulating and interesting thread I have seen on this forum. It is so inspiring to see the true energy of creation flowing through you at this time.
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Gal
Trad climber
a semi lucid consciousness
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Jan 13, 2011 - 01:48pm PT
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I am in the same late jumping aboard boat as Jeff, and in total agreement with Dick Erb, and admire everyone on this thread, it has touched my heart, but especially you. I wrote this last night... don't know why I hesitated, I suppose because I'm a self conscious writer, but here it is:
Paul, you don't know me, but today I read your JTree trip report. I was going to post something, but then I thought maybe what I would write would be trite, cliche, or not properly express what I would want. But then I read this whole other thread of yours, describing everything you've been experiencing, and realized that even if I can't explain what is in my heart, it might come across, even if a bit blurry. This is what I wrote about your J-Tree trip report, and this thread that I have now read from beginning to end. I cried, I soared, and I am still hoping strongly for you! The pills should keep working, they were working and shrinking tumors and I hope they will work again as you take them for another week.
Here is why I find you inspiring-the bravery to go through this in a public way, and to be completely honest about your situation. I have learned a lot about endurance, tenacity, and human nature based on the interactions from this thread. I have also learned a lot about what going through cancer can be like. You have a creative soul in your writings and the way you are expressing yourself, and getting comfort from a wonderful support system. I have learned the thought process and emotional roller coaster that is involved when you are facing such a harsh situation. I have learned to try to be preemptive if my body tries to tell me something, or show me something. You are being REAL, and that I always highly respect. A lot of times people waste a lot of time posturing about things that don't matter at all-you face it down full force! Your J-Tree trip report was meaningful in the way it weaves the love of climbing into the bigger picture of life and it's hardships. It shows that while people are connected here at ST based on climbing, they are connected at a deeper human compassion level-I'm proud to see it, when we often don't in life (NEVER expected something deep could come from an online climbing forum-never say never, obviously). I'm feeling the love everyone is directing your way, it's a wonderful thing. I'm glad you went on your trip to a place you clearly love, JTree.
I hope that during your week back on the pills, you will be envisioning shrinking again the cancer so you can continue taking the medicine and kick that cancers ass!!! Thanks for your openness-I feel like I have a window into who you are as a person-you are awesome! Ruth is an angel. So glad you two have each other to lean on. Sending good & healing thoughts your way. Keep fighting! You are strong and there is hope! As long as you're alive, there is HOPE!
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okaythatsme
climber
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Jan 13, 2011 - 05:33pm PT
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Your unexpected teaching of the yoga class was wonderful. I am constantly reminded of what the body and spirit are capable beyond our own predictions. Energy is transported into the words you write and has helped others. I hope you may feel the strength, love and energy of those sending you encouraging words back. -marcella
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SCseagoat
Trad climber
Santa Cruz
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Jan 13, 2011 - 07:19pm PT
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thinking of you Paul. Susan
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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 - Jan 13, 2011 - 07:36pm PT
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Good to hear from all in cyber-land. My nerves are shot at the moment. But I always get to the other side. Worn out now, but I will be OK in the end.
I just feel on edge constantly, like I am posessed by a demon chiuaua. Ggggrrrrrrr. :)
Off to try and rest for a while. Update y'all later.
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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 - Jan 14, 2011 - 12:57am PT
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Don't be afraid of a bone marrow transplant if it presents itself
Could you explain?
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John_Box
Ice climber
Bellingham
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Jan 14, 2011 - 02:07am PT
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Demon Chihuahua my ass that's a Chupacabra if I have ever seen one. I've followed this thread for a long time, and have learned a hell of a lot more from this than anything else on the forum. Thank you everyone that has shared to make this what it is.
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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 - Jan 17, 2011 - 07:17am PT
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Paul here.
Man, emotions are a trip. Sometimes dispite my best efforts it is still hard to deal...
So friday I got up and called the doc. She said she could see me soon. Ruth had the truck, though and would not be back in time. So I hopped on the Harley and motored toward the doc. I forgot to check the fuel, it was on reserve. I ran out of gas 1/4 mile from a gas station. I am already upset and that did not help. After pushing the HOG and gassng up, off to the doc.
Nerves shot. Can't get through the jitters to the point I need to in order to deal and make good decisions. So I got some temporary fix anti-axiety meds, Don't like solving problems with pills. But sometimes you need to use different tools.
The tumor in my groin is bigger and more painful. I have an apoint. in UCSF middle of this week. What is next???? Anything???
On the fun front, I went along with Ruth and a group from our yoga studio to the "USA YOGA Northern CA Regional Yoga Asana Championship in Stockton, CA." It's a exebition / comp where participants demonstrate 4 standard yoga postures and two "Freestle" postures of their own choosing. Sounds odd, but the point is to see a lot of people in certain postures to learn and be inspired by them.
Ruth coached the three entries from our studio, Ian, Barb and Craig. Ian won second place and will go to "Nationals" in LA in a month. Ruth is psyched.
Other than that, it is all about choices as to what to do next cancer wise...
Mastering 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 - Jan 17, 2011 - 10:09am PT
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Forgot...
I saw Naveena Bird at the Yoga thing. She is the Instructor who taught me my first yoga class. I was broke and broken and did not think I could afford it. She asked me if I could scrape together $100.
I said if I tried real hard, yes.
Naveena told me " Give me $100 and I will give you 100 classes. The catch is you have to come every day. If you miss a day I keep your money and you start all over again at a higher price."
"Uh,....OK."
Here is an excerpt from a story that includes her:http://www.supertopo.com/tr/My-Up-And-Down-Life-Disaster-Master/t10807n.html
Friends told me about this crazy place where they did yoga for over a hour in a room heated to over 100 degrees. They called it 'Bikram Hot Yoga'. I thought they were nuts. They thought I was if I didn't give it a try. So one morning I walked into "Sacred Palace," a tiny storefront in downtown Eureka, CA. My face was a mess. I shook from nerve pain. I had electrodes & cords hanging from my back to shock spasming muscles into submission. I was taking eight morpine pills a day & wore a large three-day fentinyl patch. That's a lot of opiates.
The instructor gave me a towel & mat to use. There were around seven others in the hot room chitchatting and stretching. Then class began. Wow, it was difficult. I couldn't keep my balance, my mind was swimming in heated up opiates & I was sweating like I'd never sweat before. This stuff was crazy; far removed from my image of yoga. You know, sitting around trying to be calm. That Bikram guy must be intense. I left with the same buzz I got from climbing.
"Fun.”
That evening it dawned on me that I felt a little better than usual. I wanted more yoga. But I couldn't even balance on one leg with the amount of pills I took. I was at a fork in my mental road. I could not take both paths. So I cut my pill doses in half & made hot yoga my number one priority.
Boredom breeds despair in me & when I despair I wish only to be numb. Now I decided to embrace the pain. I set a goal to get off painkillers by my 100th yoga session. I treated it as my job. I would go every day, rain or shine, arriving by bus, car, thumb or bike. Less than 30 days later I threw my painkillers away. I still lived with constant cramping, but I was exploring it now, not cowering from it. And I had my brain back.
It soon got to the point where I could feel a definite improvement after a morning session. Pain was still always with me & cramps would be back by afternoon. Instead of giving in & popping a pill I began doubling up on daily sessions, sweating in the morning & the evening, three hours a day. I did my 100 sessions in around 75 days. A little obsessive? Sure, but it was working. I realized that I could rise to the level I sought before my tribulations. I would just have to be twice or even four times as strong as before to get there.
Everyday I did my yoga. Little by little I felt my body strengthen. Bit by bit my mind stabilized. I began to make peace with my pain. The trick with anything is doing it, practicing it; not just talking or planning. Armchair climbers read books & mags, then evaluate others' achievments. Practicing climbers accomplish goals; then push their mark forward.
I went from this:
to this:
NOW IF I CAN JUST FINISH KICKING MELANOMA'S ASS, I CAN GET BACK TO IT.
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SCseagoat
Trad climber
Santa Cruz
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Jan 17, 2011 - 01:16pm PT
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Thanks Paul for the update...looks like it was enjoyable. Before I got sick I did Bikram Yoga at least twice a week. I loved it. I don't think I could tolerate it at the moment. I am going to gentle yoga and restorative/healing yoga classes at the moment. I was blown away by some of your previous pictures doing some Bikram postures even during your current treatment. I think it was the cobra posture and how high up you had your legs/tail. Even at my strongest it seemed like my cobra legs/tail was only inches off the ground! Thoughts with you this week as you visit your doctor. And props to Ruth for her coaching! Susan
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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 - Jan 18, 2011 - 03:14pm PT
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I am in a lot of pain. I took more drugs than ever for it today. Fell into a sleep. Dreamed and woke up. Wrote it down. Here it is.
Dark seas, swirling,
seem to cry
againt death's unfurling.
The surf is high
and I look down
half-drowned
yet defiant.
Tall trees, greening,
grow where I
dream of leaning;
seated way up nigh
in the crook
of the arm
of a Giant.
Large stones, warming
like eggs, lie
with swallows swarming;
nestled in the sky
near the apex
of slopes
velvet and verdant.
-Paul Humphrey
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SCseagoat
Trad climber
Santa Cruz
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Jan 18, 2011 - 06:00pm PT
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Again, no words can express what I felt when I read it. Rest as best you can. Susan
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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 - Jan 18, 2011 - 10:08pm PT
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Glad you liked the poem, Susan. I thought it came out pretty well.
Remember, everyone, I like to hear from you. Don't be afraid to stop lurking and get an account so you can post back.
I know you're out there...
Climbers Rise Above Cancer: I am still trying to put together a logo t-shirt / card art idea. I found some clip art that would be a good start for a logo.
Here is a cartoon cancer. Thought of the climber climbing above the monster. Needs a face though.
Posted another cartoon at the start of the thread, here it is:
Off to the Doc tomorrow. They will likely kick me off the trial. The alien puppies are growing..
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donini
Trad climber
Ouray, Colorado
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Jan 18, 2011 - 10:14pm PT
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Paul, I'm in Coyhaique on my way home from Patagonia. I've been thinking about you and Ruth and what a pleasure it was to meet the two of you. You truly inspire me- hope to see you soon.
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blackbird
Trad climber
the flat water trails...
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Jan 18, 2011 - 10:54pm PT
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My thoughts and prayers are with you...
Samantha
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ncrockclimber
climber
NC
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Jan 18, 2011 - 10:54pm PT
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Thinking of you!
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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 - Jan 18, 2011 - 10:56pm PT
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I have ignored calls and mails from many I should not. It has just been too hard to say the same thing each time to each person. Hence the supertopo blab.
Keep shouting out. I will give news from the doc tomorrow.
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stilltrying
Trad climber
washington indiana
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Jan 18, 2011 - 11:58pm PT
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Your insights are incredible Paul. I have carried on a battle with heart disease for 17 years and I will turn 59 in March. I am eligible to retire in May after 30 years of Goverment work (4 military, 26 civilian) Strange thing is that I know what "I" want. I have a pacemaker (100% dependent) a defibrillator, a stent and am in permanent a-fib. Somehow I can still Mountain bike, road bike and climb but I want to do it FULL TIME while I still can. You are a brave soul and I can tell you that you are more vibrant and alive than 90% of the young folks inhabiting the cubes where I work. You certainly make me see the REAL world and not the game of just existing. Hopefully I will follow your lead and walk out that door in 120 days. You are in my thoughts.
Mike T.
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