DISASTER MASTER Climbs back
Paul David Humphrey
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
My Up And Down Life, Disaster Master
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.