"Palliative" Therapy • My Feet Will Lead Me

On the Fourth of July, just a couple days after we got back from our meeting in Portland with the alternative medicine doctor, Mike and I watched fireworks at Waitts Lake with family. Mike ate a plate of food, puked up his food, and then ate a hot dog. The idea of refraining from using his vaporizer for “emotional” reasons was becoming less and less desirable. Mike tried the prescription capsule form of THC, called Marinol, but it didn’t really benefit him in any specific way that we could tell. So the vaporizer was making its way back into use because, otherwise, Mike literally wasn’t eating or keeping anything down.

On July 5^th, I went to Spokane by myself for my own doctor’s appointment. I was so happy for Mike for the awesome morning he’d had by himself while I was gone. He’d read some of his Bible, made himself eggs, and sat at the table and read the paper. That was an incredibly productive morning for him. I came home and was putting groceries away when Dr. Thompson, his melanoma doctor from Seattle called. Last time we’d spoken in his office less than a week ago, Dr. Thompson had told us that the study drug, PLX wasn’t doing enough to treat Mike’s cancer. He was going to send Mike’s information to a clinic in Tacoma for a different clinical trial with a MEK inhibitor, another study drug in development to target a different part of the pathway in melanoma cell replication. So this phone call from Dr. Thompson was much anticipated.

I am a high-strung, high-anxiety, nervous, neurotic, psychopath by nature. I worry about everyone and everything around me and I’m a bit on edge. So multiply this by a trillion and that’s how I lived for 6 months from the end of March to the end of September, 2011. I can’t even imagine what it must do to people who have to live like this (in the midst of a cancer battle) for years and years, always uncertain, waiting anxiously, their lives on hold, wondering if they’ll live or die. I was very jumpy at that time. Getting the results of anything made my heart beat so fast, I sometimes wondered if my heart would just give out from over-exertion.

So the second I recognized the phone number on Mike’s caller ID as Seattle Cancer Care Alliance’s phone number, my stomach was in knots and my heart was thumping loudly in my chest. I answered Mike’s phone as I always did, having taken up the job of his secretary and medical coordinator since he’d been diagnosed. I put the phone on speaker phone, since we knew this was an important call. Dr. Thompson told us the trial in Tacoma required a 30 day “washout period” which meant no treatment for 30 days before being allowed into the study. He felt this wasn’t an option for Mike; he didn’t have 30 days to spare. I asked if Mike could just continue to take the PLX for those 30 days but not tell the trial coordinators for the Tacoma study, and he said no, it doesn’t work that way. He suggested using the old traditional (and worthless) chemo drug that Mike previously received one dose of, dacarbazine, for palliative therapy. I nearly passed out when he used the word palliative. Literally. I started trembling and twitching and chattering like I was freezing or having a seizure or both. The definition of palliative is alleviating pain or symptoms without dealing with the underlying cause. In Mike’s case, it meant preventing suffering and “cushioning the dying process.” For me, it was on par with hospice. Terrified of the answer, I asked Dr. Thompson, “Then what?” His answer: “Then nothing. Who knows, maybe Mike will surprise us all and do really well on regular chemo.” We all knew that wasn’t even remotely likely. Seeing the panic in me rise, Mike kept whispering to me, “Trust in God. Trust in God.” He was so calm.

Mike chimed in over speaker phone telling Dr. Thompson he was feeling pretty good lately on the PLX and Dr. Thompson said maybe staying on it was an option just to see how it goes. We asked Dr. Thompson for names of melanoma specialists that he’d recommend in getting a second opinion. He listed a few names from UCLA, Boston, and Houston. One name in particular jumped out to me: Doctor Ribas. At the time, since I was constantly writing on the Caringbridge website, I also followed other melanoma patients at the same time. When their health would start to fail, I had to stop following their story; it gave me too much anxiety and deflated my hope. But one woman in particular, I didn’t stop following because she continued to get better and better. She also had stage 4 melanoma and was on PLX through a clinical trial at UCLA with Dr. Ribas but she was having miraculous results. All the cancer was gone and somehow she was defying the typical PLX resistance that seems to occur for most patients after a few months. It’s now been years that I have kept up with her story among others on Caringbridge, and she still has no traces of melanoma. She is now the poster child for Zelboraf (PLX).

So of the few names Dr. Thompson rambled off, I knew instantly who Dr. Ribas was and I wanted him. After having Dr. Thompson spell out his name for me, we hung up and I started crying. Mike comforted me, once again, reminding me that our faith had to be in God first and foremost. We went outside and relaxed on a blanket with Griffey and Mike cooked some elk sausages on the BBQ. Whether or not he was able to eat any, I don’t recall. We refocused our energy spiritually and regained a sense of optimism. I searched the internet until I found Dr. Ribas’s email address and I emailed him Mike’s story, telling him about how he was currently on the PLX through Seattle Cancer Care Alliance but it seems to not be working as well now and we were told we were out of options by his doctor. Dr. Ribas responded almost immediately and said he was doing a trial that combined PLX and a MEK inhibitor and he could see us on Friday morning. It was Tuesday night. Sometimes when one door closes, another one opens. We were ecstatic.

The next day we went into Spokane for Mike to have a checkup with Dr. Nichols at Cancer Care Northwest. She and Dr. Thompson had been communicating throughout this whole process so she knew before seeing us that Dr. Thompson had suggested palliative therapy. She greeted us sadly and empathetically, expecting the same emotion from us, but we excitedly told her about Mike’s upcoming appointment in LA. She was happy and surprised we’d found another possibility so quickly, and said we were so charming together, Dr. Ribas would just have to let Mike into the study. Mike’s anemia had surprisingly improved a little bit and he got an infusion of Zometa, a bone strengthening medication.

Thursday morning I booked our flights, booked our hotel, did laundry, and packed, all before Mike and I drove to Spokane then flew out for LA in the afternoon. Mike threw up getting off the plane in Portland for our layover and then on the plane when we landed in LA. Thank God for those little barf bags they provide in the seat pockets. Mike flew with his vaporizer in his carry-on, which, to our relief was not an issue. When we arrived in LA, we were picked up at the airport by a couple of good friends from back home who had been living in LA for quite some time. They greeted us with hugs and a couple of marijuana buds to get Mike through the next couple days. They delivered us to our hotel I had booked called the Tiverton House. It was a hotel right across the street from the UCLA medical center for patients and their families. It was pretty late, so our dinner was in the form of chips and snacks from the hotel’s vending machine. We were nervous and anxious for what our appointment in the morning would lead to. The opportunity to come to LA on a whim seemed like a serendipitous sign from God. Our new adventure felt completely right and gave us hope. I have no regrets about the decision to come to LA.