Malignent Melanoma Survivors who climb

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Messages 1061 - 1075 of total 1075 in this topic << First  |  < Previous  |  Show All  |  Next >  |  Last >>
gf

climber
Jan 21, 2013 - 01:47am PT
Very kind of you to share this sad news with us-condolences
neebee

Social climber
calif/texas
Jan 21, 2013 - 05:52am PT
hey there say, yllw2lip...

once again, thank you for sharing...
my condolences to you, and to her family and loved ones...

:(
Jan

Mountain climber
Okinawa, Japan
Jan 21, 2013 - 06:14am PT
If people can choose the timing of their death, that surely was the case here. Together in life,
together after death, in another dimension. We miss them both but the important thing is that they journeyed together.
T Hocking

Trad climber
Redding, Ca
Jan 21, 2013 - 09:40am PT
Thanks for the update Anna.
Very sad indeed, condolences to Ruth and Pauls families.
May their spirits soar together in the afterlife!
Tad
eKat

Trad climber
Less than a second shy of 49 minutes
Jan 21, 2013 - 10:41am PT
This is incomprehensible!

I am so very, very sorry.

:-(
SCseagoat

Trad climber
Santa Cruz
Jan 21, 2013 - 12:45pm PT
More info about a horrible chain of events. Hard to believe


http://www.supertopo.com/climbing/thread.php?topic_id=2022458&msg=2022949#msg2022949

Susan
donini

Trad climber
Ouray, Colorado
Jan 21, 2013 - 12:50pm PT
I have fond memories of Paul and Ruth from time spent at Indian Creek and at our home in Ouray. They epitomized the word...class.
yllw2lip

Social climber
Orange, CA
Feb 10, 2013 - 08:42pm PT
Thank you for everyone's condolences. This is a very sad event in my life, to lose my brother Paul and his lovely wife Ruth. They were two amazing people. RIP
kennyt

climber
Woodfords,California
Feb 10, 2013 - 08:50pm PT
I was just reading through some of Pauls stuff today. my up and down life, I'm sorry I never had a chance to meet him.
yllw2lip

Social climber
Orange, CA
May 22, 2013 - 01:48am PT
http://www.firstgiving.com/fundraiser/paulandruth/annadwingersfundraisingpage

I have set up a donation page to Melanoma Cancer research in memory of Paul and Ruth. I am training to run a full marathon and I would like to raise money for every mile I run. My goal is $40 per mile for the 26.2 long run. If you would like to donate please click on the link. Thank you!
SCseagoat

Trad climber
Santa Cruz
May 27, 2013 - 12:13pm PT
Bump for Paul and Ruth on Memorial Day.
He got me through some of the darkest days of my life.
Drinking my cuppa tea, as always, dear Paul and Ruth
Susan
yllw2lip

Social climber
Orange, CA
Dec 14, 2013 - 10:48pm PT
In memory of Paul and Ruth I wanted to post this letter he sent to his family about fighting melanoma. He was a fighter. He was strong. He was loved. RIP Paul.




Aug 21, 2010





It is not always possible to put on a happy face... “Buck up camper, it's OK.” Sometimes it is simply

not OK. I have been genuine in my notes to everyone as far as my emotions go. I really do have a lot

of verve and fight in me. But I must Deal, and those times can be dark. I must deal though, not just for

my sake but the one I love, Ruth. I need her smile. But my anger is bubbling over. I don't want to scald

those I wish only to embrace.



So I am opening up the dark cupboard in the back of my mind. Perhaps that will let some light in. Here

are my thoughts I wrote down this early morning...



-*-

I'm trying to figure out the cause of my angst, my anger. Or at least the version I feel in this moment...



Perhaps This:

When I shattered my back in 2004 the pain was all encompassing. I swam in pain. I swallowed it,

nearly drown it it, and wallowed in a sharp swamp of nerve endings. I could not fathom a normal

lifespan feeling the constant over-stimulation of Pain.



See, the fall hadn't killed me, and it wouldn't. At the time, I began to wish it had. Instead it turned my

nervous system into my personal bully, a Ghost-Siamese-Twin that I can't cut off or kill or poison. It's

just there. The bargain of Life seemed too costly.



But, wonderfully, I wrestled my mind back, and made peace with my Pain. I don't think I “Accepted”

my diminished body, but I made a comfortable enough, livable agreement: I'll learn the difference

between real pain and mere sensation. Pain will teach me where my true limit is, the line between

discomfort and injury. (It makes sense to me, but the words are not invented yet to explain.) I never

thought I would be, but I am perfectly OK with Pain. Bring it on.



I realized at 5am today that the bargain on Pain's part was to let me live on. Poke me, prod me, kick me

in the balls, Pain could do that. But it could not kill me. That was our bargain.



This morning, one leg is swollen with lymphadema, I haven't slept much in days. The “Poison for the

Cure” route of experimental drugs seems to not be working. And the litter of alien puppies in my gut is

filling me up. I think I could live with that, if the cancer would simply let me live!

Why have I learned the hard lesson of Pain? What was the point.



“Life is Suffering” said Buddha. He didn't mean “Life sucks” He meant “Get over it and move on.

Move Beyond.”

OK I get it! Give me the f#*%ing time.



I'm not sold on this come-back-again-to-finish-figuring-things-out philosophy. Science and school

trained me too well to be a skeptic.



I might not have the time I need to become the man, the Human, I know I can be. I stumble, like we all

do, and obviously I fall. But for some belligerent reason, so far I've gotten up again. Will I rise one

more time?



Time.

I did not want it when I thought it meant morphine and blackouts and an invisible whip in my spine. I

want it now. I learned to want it no matter what. Checking out is a cop-out. Yet I am tired.

I am not done

Becoming yet. I don't want my hard won improvements to disintegrate into dust.

And my mind only knows that it doesn't know.



So my fear, I realize, is of a Life uncompleted. Who knows how long it takes to learn to be complete? I

wish that Satori moment for myself, the dream of Completion in an instant of Realization. Well, I'm

realizing new things right now, yet the drama plays on. A moment, a day, a year, a century....

Dead is natural in the end. But I am still

Inhaling! I'm not ready to exhale into the night until I have

tempered myself enough to only show Love to the world. I'm not there yet.

I'm pissed.

-*-



7am now and attempting to deal.



a poem:



...So let us embrace

each other, all of Us.

Let our arms intertwine

as beautiful serpents.

For we are not so different

as it is often supposed.

We can put more than

our heads together.

And love is not

confined between our legs.

LOVE is not confined at all.

We walk through it every moment,

Breath it in with every breath.

These forms we preen,

fuss over and cover

are less solid than lace.

Not such a barrier after all.

So let our serpent arms entangle

and the wind blow in

through lace curtains...

The Sun is coming up.





Attempting to Master on,

Paul.

Please donate on my page for the Melanoma Cancer Research Foundation if you can: http://www.firstgiving.com/fundraiser/paulandruth/annadwingersfundraisingpage

Thanks, and God bless you!
Anna

yllw2lip

Social climber
Orange, CA
Dec 14, 2013 - 11:06pm PT
Here is a letter Paul wrote about the trial he got on that actually shrunk his tumors for a while, giving him the ability to climb one more time.

DISASTER MASTER Climbs back

Paul David Humphrey

October 30, 2010



The last time many of you heard from me I had ended my involvement in the YM155 clinical trial for my stage IV Metastatic Malignant Melanoma. The drug combo they had me on, especially the decarbazine chemo component, crippled me further. My leg swelled with lymphedema, to the point where I could not take the heated room for yoga and work. Hurt too much. My options did not look good. One new drug, PLX4032, was on the nightly news one day. We followed up and were referred to UCSF Mt. Zion Melanoma Center to see if I might qualify.

After a wait…we got an appointment. The place is a ZOO! Long wait for the doctor…then, BAM, a whirlwind! Prodded, poked, weighed, pressure tested and then consulted by at least four fast talking specialists about best option, next option, etc. Damn. The lead, DR. Daud, was obviously on my side but hyper over worked. He said test me to see if I have a B-RAF gene mutation. OK… The dermatologist took four samples from a tumor on my collarbone. Deep cuts. I was blood tested, etc. then kicked back out the door with a “We will rush this through.”

A week later we get “the” call. We thought. Instead we are told that the sample was not usable. “What?”

“There’s no melanoma in the sample.”

“Excuse me, so I don’t have melanoma?”

“No, you have melanoma, just not in the tumor we biopsied.”

“I don’t get it.”

“Yeh, it’s odd.”

That was an understatement. What was going on here? I called and called. But getting the Doc there is like ringing up Obama, ain’t happening. New appointment instead in a few days. Ruth and I were very confused. No answers for a few days though, and I don’t wait well.

We finally got to UCSF. I do have melanoma. But they biopsied a lypoma. They need another sample to start all over again. Another wasted week! I was pissed. Ruth was frazzled. They biopsied another tumor on the other collarbone. They looked at it this time to ensure it was melanoma cells. Then off it went to Roche Labs, the drug company that makes the pill. More waiting…

We decided that if I waited in the RV in Santa Rosa, I would fade away. So new plan, on the road. We decided to go traveling while awaiting the news of whether or not I was a mutant. I wrote about much of it on supertopo.com, a climbing (sort of) web-site and forum. Never thought I would be posting to a place on the web regularly. But here it is. My ID on the site is my nickname, DISASTER MASTER. Check it out for more info.




Malignent Melanoma Survivors who climb

http://www.supertopo.com/climbers-forum/1239624/Malignent-Melanoma-Survivors-who-climb


Trip Report

My Up And Down Life, Disaster Master

http://www.supertopo.com/tr/My-Up-And-Down-Life-Disaster-Master/t10807n.html

Ruth and I stayed in a cabin in Wawona, inside Yosemite NP. It was lent to us by a yoga student and dear friend. That was perfect, since I was cane bound and could barely walk, let alone climb. We saw Wawona grove of redwoods. Walked up the hill. Paid for the shuttle ride down. In the handicapped section, no less. We got little Walkman’s to listen to a John Muir impersonator. Tourists.

It took me a while to shift from always road trip to climb mind to just have a good time mind. Strange. I used to poo-poo the tourists when I went rock-climbing above them. Now one of them, I regret that. Even BS like cancer can widen your view. So cranky but curious, we left Yosemite for Utah. Over Tuolumne pass past mono lake and across the lonely highway through Nevada.

I had RSVP’d us for a party called “Sushi Fest”. It was a sushi all-you-can-eat dinner in the desert, near Moab, UT. I know, sounds weird. The chef was an old acquaintance from climbing and collage, Doug Lafarge. He loves sushi. And he makes it at climbing areas through these internet-notified parties at world class rock climbing areas. Still strange? IT was great! Stuffed myself on excellent raw fish. Ruth is not a sashimi girl, so less for her. Many people were there including Jim Donini, a world renowned climber. He and his wife invited us to their house in Ouray, CO.

After climbing ”Supercrack of the desert” hard 5.10 crack climb at Indian Creek UT, we wandered the Moab area for a few days. Then off to CO. This no plan road trip was working out. I was getting weaker daily, though. And Ruth had to do all the driving, and put up with my pain and mood swings. She is remarkable!

Jim Donini was off to climb in Yosemite when we got to Ouray. But his wife, Angela was there and a great hostess. We were given free reign of the guest studio over the garage with a view of the mountains. And assess to the hot tub. Ruth loved that. There was mineral hot springs in the town of Ouray. So we checked those out. They felt great on our tired bones. Went climbing in the park near the pools. Not a very stressful spot to live. Called the Switzerland of America.

I kept getting sicker, though, and spent several days lying on the futon mattress on the floor of our hosts’ cabin. Nice view, though. The fall in to place nature of this trip was fantastic. We seemed guided along the way, every day. Good weather. Strangers turned friends in minutes. Amazing views. But I was dying, still.

I had begun to make my peace with that when, RRRIIINNNGGG…..a call.

I AM A MUTANT!!!!!!!!!!!!!!!!!!!

The test came back the right way. I was BRAF positive. This means that the drug PLX4032 would likely work for me, attacking cancerous tissue, but not the rest of me like the last chemo component of treatment. Wow. Unbelievable. Yet my mood darkened….I am too used to body-slaming-blind-sided disappointments of late. I dared not believe. Not yet. So to the annoyance of Ruth, I sulked with her to LA to see relatives on the way to appointments at UCSF in San Francisco. Family was fun, but my mind still lurked in the shadows of uncertainty. Would this end up being another waste of our time? I did not have much left, and did not want to spend any good time as a guinea pig. I wanted back on the road.

But onward to SF and scan land.

I lost my wallet, my ID, cards, medical info, hundreds of road trip dollars from my mom’s account that my sister got when mom passed. Worse mood for Paul. Near breaking point for Ruth’s nerves. She still drove all the way from La to the Bay. What a woman! Then parked in downtown SF at night….Ay, yie, yie.

Up the next day for testing. The dos are excited. Ruth is excited. I am….numb. I won’t believe it until the pill is in my hand. Everything goes well until… late in the day we talk with the doc. He says that something is lighting up in my brain on a scan. It could be melanoma, which would disqualify me, not only for this trial, but most others as well.

“It’s not a cancer!” I insisted. “It was there three months ago and was noted on other scans as unlikely to be Melanoma. It could be a malformation, or evidence of my past head injury, or evidence of pain management.” (The part of my brain lighting up controls pain signals and consciousness. Interesting…???)

The Doc’s face lit up, really lit up. He said that could be the ammo he needs to convince the drug company to let me on the trial. He needs the old reports, though. Otherwise I will likely be rejected. AAARRRRGGGHHHH!!!!

Back to Santa Rosa. I found the scans and reports and faxed them off. The weekend came. No word. Four more days of waiting… Ruth and I almost gave up hope. After all, the company wants clean numbers. I have a variable they don’t need. And there must be many people vying for this treatment.

Then the word…I’M IN! They just need to book a room at the hospital to start. Just a few more days. Ruth is smiling for the first time in a long time. I am still guarded. The pill is not in my hand yet. What a rollercoaster.

Finally we get it, October 20, 2010, 10:45 AM. Pill Swallowed. I sigh, yet the crankiness remains. I just don’t believe anymore, not in anything that might cure me. It all seems too late, a long shot, a pipe dream. The trials coordinator tells us I was the last one admitted to the study. Other people in the building right then were being told the drug would not be available to them. A cruel victory for me.

We left with a bag of pills, a schedule of appointments for the next month, and a weird off kilter feeling. Down the rabbit hole again. One pill makes tumors smaller… two????

I have been taking the wonder pills for 7 days as of this writing. I am beginning to believe in miracles! My energy is returning. I was able to do a complete hot yoga class, the first in 2 months. My cane is forgotten more often than not.



AND THE TUMORS ARE SHRINKING!

I know, incredible. It seems to be true. The ones on my neck and front torso are smaller for sure. Some on my back too. Most important, the main large masses in my groin seem better. My leg pain is less. The swelling is down…. I can barely believe it. But it is true.

If all goes well I will try and teach a little yoga again, then climb in Joshua tree NP next month.

This dreadful disease Melanoma, so down-played still by most, is a drug resistant bastard. The tumors may grow again. But for now, I seem to be a step ahead of cancer. It bites my heels, so I gotta run.



Mastering on,

Paul

Missing Paul and Ruth today.

Anna

http://www.firstgiving.com/fundraiser/paulandruth/annadwingersfundraisingpage
nature

climber
Boulder, CO
Dec 14, 2013 - 11:47pm PT
Credit: nature
yllw2lip

Social climber
Orange, CA
May 1, 2014 - 03:58pm PT
Bump for Paul and Melanoma Awareness Month May 2014
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