UCLA

Once again, I fear you’ve likely lost track of where I last left off. My Peru hiatus threw a kink into my blog writing, as did the surgery on my eyeballs (which went well by the way, and I can now drive without glasses).

We last left off with Mike and I being picked up at LAX by friends (with marijuana buds in hand) and then delivered to the Tiverton House, a hotel for UCLA Medical Center patients right next to the UCLA campus in Westwood, Los Angeles. We had been given the “palliative care” recommendation from Dr. Thompson in Seattle only to be connected with the melanoma research badass, Dr. Antoni Ribas, at UCLA the same day.

So here we were, the morning of our appointment with Dr. Ribas on 7/8/2011. We prayed together in our hotel room then forced down some of the continental breakfast. Mike was very nervous. I reminded him that nothing anyone tells us could change the fact that he’s in God’s hands. Whether I really believed that or not, I’m not sure. We walked across the street to the campus, found the medical building where we were told Dr. Ribas’ office would be, got in the elevator, and there was Dr. Ribas himself in the elevator with us. I’d seen his picture online, but seeing him in person, I felt like I was in the presence of the man who could change our lives. We didn’t say anything, but followed him to his small waiting room and sat down after giving the receptionist our insurance card. The office was nothing impressive, this was a university campus, after all, and although he had patients, research was his primary focus. When we were taken back to a small exam room, Dr. Ribas came in full of energy and enthusiasm with a smile and kindness in his eyes. It was the most refreshing, positive experience we’d had in a long time. I could have wept with gratitude. From Spain, Dr. Ribas has a beautiful and sophisticated accent. He told us he disagreed with Dr. Thompson’s assessment that PLX wasn’t doing anything for Mike and told him to continue taking it. He humorously referred to Mike’s cancer growth on PLX as “Mickey Mouse stuff” and calculated based on his last two CT scans that he’d only had 7% overall growth, which was a relief. He spent a lot of time with us drawing diagrams of the mechanism of action of the two different drugs that his clinical trial involved (PLX and the MEK inhibitor). He said by itself, the MEK inhibitor isn’t that good (so the trial in Tacoma would NOT have been a good option), but with a BRAF inhibitor, the two are better than either one alone. Dr. Ribas explained that there were two options. Either Mike could enroll in the study right then as part of the first cohort, but he’d have to lower the PLX dose by 25% and be on a low MEK inhibitor dose and Mike would be stuck at that dose for the entire trial, or he could wait one month, staying on his present high dose of PLX, and then be eligible to enroll in the second cohort of the trial where patients were on a full dose of PLX and a higher MEK inhibitor dose. Since this was a Phase 1 trial, the researchers were still trying to figure out the correct dose, side effects, interactions, etc. between the two drugs. Therefore they had to separate groups of people into different doses and see which was better. Dr. Ribas felt the higher dose would benefit Mike more in the long run, so he recommended waiting for a month, staying on PLX in the meantime, and then adding the MEK inhibitor. We agreed, because we didn’t want him to get stuck on the lower, less effective dose. And since we had already picked up a month’s worth of PLX from Seattle, we just kept it and Mike would continue taking the four giant pink horse pills twice a day, even though he was no longer a patient in Seattle. Dr. Ribas explained another trial he was working on that could also be a possibility for Mike in the future.

We left Dr. Ribas’s office in high spirits, so excited about having more than one possible plan of attack, and having someone so hopeful and caring now taking charge. There are certain people you just instantly love and trust. Dr. Ribas was one of those.

We walked across the street to a Ralph’s supermarket and got a few snacks then back to the hotel for Mike to take a nap. All that walking took a lot out of him. That afternoon we planned to go to a vegan restaurant that was a few blocks away. We saw some taxis parked along the road with the drivers standing around so we asked one what it would cost to take us to the restaurant. I knew they wouldn’t like a short trip that barely made them any money, but Mike was hurting. The guy told us it was only a few blocks away, would cost $5 to get there, and we’d be better off walking. Well you don’t have cancer in all your major bones and organs, you jackass. But thanks for the ride. So we slowly walked the rest of the way. We shared some sweet potato taquitos and some fake chicken wrap thing then walked back to the hotel.

The following morning, we got up at 3AM for our shuttle pick-up and flight back home. But first, we buried Mike’s leftover bag of marijuana under some plants in the front yard of the Tiverton Hotel for future use. We never did put much effort into finding it again, so if you’re ever in the area…

On the flight home, our two seats were separated and I was one row in front of him. Mike was stuck between two people and we asked them if one of them would switch with us. They were reluctant and pretty much refused. I asked the flight attendant if there might be a couple seats together somewhere else, because Mike had a bunch of medications I had to give him throughout the flight, and she asked the people next to him if they would switch, they still wouldn’t because neither of them wanted a middle seat. Hey assholes, you might get puked on if one of you doesn’t switch us, but whatever. Finally the guy next to me took Mike’s middle seat so Mike could sit next to me. And Mike did puke when we landed in Spokane, which would’ve been classic had he been stuck between those two jackasses.

We arrived home during Chataqua weekend. For those unfamiliar, Chataqua is the annual carnival/craft fair/festival that draws large crowds to Chewelah the second weekend in July. We went down for some food and family baseball games. As I’m writing this, I’m referring to my journal I kept at the time, and I’m reminded that for some reason Mike played a few carnival games and won a stuffed snake in a game throwing darts at balloons. It’s been one of our dog, Griffey’s toys ever since, and I’d completely forgotten where it came from. Those are the things that get me: remembering the significance of something, or a new memory cropping up. The stuffed snake was so benign sitting in Griffey’s toy basket. It had no significance because I had no memory of it until this morning.Over the next couple weeks, we tried to pass the time as enjoyably as possible while feeling like we were idly waiting for the clinical trial in LA. Did we make the right decision waiting a month for the second cohort of the study? Was the cancer growing out of control while we sat here waiting? We didn’t speak of these things really, but how could you not wonder? We worked on a puzzle that friends sent us on the kitchen counter, but Mike could rarely stand or sit for long enough to accomplish much, so Tom and I mostly did it while Mike lied on the couch. Mike and I would relax outside on a blanket and watch videos that the alternative medicine doctor, Linda Hole, had recommended. The one on YouTube called “A Good Day” was one that inspired Mike to say it would be a good video to show at a memorial. So I tucked that little comment away in the “don’t acknowledge until you have to” corner of my mind. Mike continued to wear the silly little pressure points on his hands and the copper rings that Linda Hole had recommended. I spent hours researching apartments in LA near the UCLA campus. I ordered Griffey a “service dog” vest online (can you believe you can do that?) and got him a letter to be a certified emotional support animal so he could fly for free with us and live at an apartment that didn’t allow pets. Let’s be honest here, Griffey was Mike’s baby and he wasn’t moving to LA without him. Calling him an “emotional support animal” was no stretch. I continued selling wristbands at local stores and kept having to renew my Leave of Absence and disability paperwork every few weeks. I continued trying to feed Mike organic healthy food. His back seemed to hurt more than usual and he seemed to require more marijuana to eat than he used to. Our entire family planned a week-long trip to Orcas Island, which would prove to be a special time for all of us, as miserable as it was. And before long, we’d be living out the next chapter of the journey in LA.

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