Apartment Living

Around 12:30 AM, Mike’s parent’s arrived in our car. They had been driving nonstop from Chewelah. We took the elevator down to the parking garage below the apartments and opened the gate for them and they parked in our tiny little parking spot that required major skills to get in and out of. We carried some of the stuff they’d brought us up to our room and threw the sheets and blanket on our bed and went to sleep. Tom and Sue slept out on the couch and big chair in the living room. Griffey always wanted to sleep out in the living room with them.

The next day, Sue and I made a trip to Ross and the 99 cent store to get everything we needed in the apartment (towels, dishes, silverware, etc.). When we got back, Mike was having a bit of an emotional anxiety episode. I think his nausea medication was contributing to his anxiety and restlessness too. I lay down with him on the bed and listened to him talk. In a way, I dreaded these times because it hurt so much to hear him express any sort of emotional discomfort. My being gone shopping for a few hours had made him feel very alone, depressed, and jittery. He said he loved me and needed me so much, and that he knew I was put in his life for a reason, because he couldn’t have gone through this without me. The only reason I remember this conversation is because I’d written it down in my journal at the time.

Next, to ease Mike’s other stress, I had to call Ike and ask him to come take the TVs because they couldn’t be used for the main purpose Mike had wanted them and asked if he had one that would work. He said there’d be a $185 delivery and pickup fee. It was the one time I remember really losing it when Mike was sick. I started crying on the phone telling Ike that my husband was sick with cancer and he just wanted to play his frickin’ Playstation and I didn’t have a lot of money. Any relatively newer, decent TV should have an HDMI hookup. He told me he’d bring us a newer TV and we could pay him whatever we felt was fair. So I gave him gas money.

The next day, we decided to be tourists and take an impromptu Starline Tour, so I drove everyone (including Griffey) to Hollywood. We parked and took the escalators to the square around Grauman’s Chinese Theater, the Kodak Theater, and the Hollywood Walk of Fame. We bought our tickets from a little kiosk and Mike and I shared a lemonade. Our tour bus driver led us on what felt like a 2 mile walk to where the bus was and Mike had to hobble along slowly, getting very tired and frustrated in the process. We then realized the bus was an open top bus where the hot sun was beating down on us the whole time, so eventually the driver had Mike sit up front with him where there was a roof and kept referring to him over the microphone as his “co-pilot.”

The tour was torture. We drove around in the hot sun forever in the Hollywood Hills, Beverly Hills, Rodeo Drive, etc. basically stalking celebrities. It was incredibly pathetic. I was embarrassed for us. The tour guide was obsessed with spotting celebrities, so every time an expensive car would drive by, he would say something like, “Nice Jaguar to our left, everyone get a look at the driver and see who it is!” And Mike would roll his eyes in disgust. Mainly I was concerned about Mike’s discomfort the whole time. He was so miserably restless; he just desperately wanted to get out of the vehicle. And Griffey was hot and panting so I was trying to shield him from the sun. Aside from the superficial, celebrity-obsessed nature of the whole thing, I would’ve probably enjoyed the whole thing as far as just getting a tour around LA, or seeing where certain icons had lived if I’d been by myself.

When we got back, we decided to take Mike off the Compazine, the new nausea medication that he’d been prescribed in the ER. It was working really well for his nausea (he’d gone days without throwing up), but tormenting him with restless anxiety, so he didn’t feel like it was worth it. And now Mike was contemplating going to the ER for his abdominal distention. We didn’t know what was causing it and he was so uncomfortable until he’d use his vaporizer.

The next day we did go to the ER. It took forever but after hours the doctors just reviewed previous PET scans and said the pain was due to his enlarged liver and was to be expected with his degree of cancer metastases. They did an ultrasound of his gallbladder and said it wasn’t blocked. There was nothing they could do, which frustrated Mike. Then he puked twice while we were there, which was the first time in almost a week and it was because we’d stopped the Compazine the previous day. We just couldn’t win.

The next day Mike was homesick. He wanted to be back in Chewelah. He said he needed trees and mountains to look at, not pavement and buildings. For some reason, I felt happier there in California but he felt happier back home. I guess for me, the weather and the bustle of a city, the newness of it all, was a distraction. For Mike, he just wanted the familiarity and comfort of home. Mike’s mom made him a concoction of baby food and yogurt that was easy on his stomach and he kept it down. So for the next few days, Mike was eating baby food. We all went down to the apartment pool that day. Mike really liked the feeling of buoyancy and weightlessness; it eased his pain. I towed him around the pool piggy back-style like a little kid as we laughed. We took some pictures in the pool, and after I took one of him with his parents, Mike teared up a little bit and hugged me, then told me how much he loved his parents.

Later Mike said he was feeling depressed so I suggested he call his Uncle Chris, who had been a strong Christian influence during the past couple months. They were on the phone for over an hour talking about the Bible, Jesus, praying, and discussing things that made my heart so incredibly full and put Mike in a much better mood. Then I got on UCLA’s website and was reading some testimonials of people who had had astounding results with their melanoma after clinical trials with Dr. Ribas. That encouraged Mike too.

The next day, August 15th, we left Griff in the apartment and all went to Mike’s appointment with Dr. Ribas. I can’t emphasize enough what an amazing man he is. He took his time answering lots of questions, told Mike to just eat little tiny portions as frequently as he could, told him he would write his medical marijuana prescription for California if we needed, and that the MEK inhibitor would take about one week to start showing a response. He told Mike his anemia wasn’t bad enough to require a transfusion. He brought up Mike’s most recent scans and told us we could see them “if we wanted to be scared” but we all agreed we didn’t want to see them. It would only freak us out. So Dr. Ribas said, “It’s not important what the scans show us now. What’s important is where we’re headed.” What an amazingly positive thing to say. Even if he was wrong, I still appreciate the hope he gave us, unlike most of the other doctors.

Since Mike didn’t require a transfusion, we hurried back to the apartment, bought airline tickets on our computer for THAT day to go home to Chewelah with Mike’s parents for his benefit. We’d really been hoping we’d be able to go, but didn’t want to plan for it unless Dr. Ribas said it was alright for us to leave. So quickly I packed, we called the Super Shuttle to pick us all up, and Mike, Griffey, and I caught a flight out of LA just 15 minutes apart from his parents’ flight. Mike told me this was the most comfortable and pain-free of a flight he’d had yet, as he chatted away with some lady next to us the whole flight to Seattle, ordered a cheeseburger, and used his marijuana tincture drops occasionally. He still puked when we landed and during his transfer to the next gate though. On the next flight, when the hippie girl across the aisle noticed Mike using his tincture drops they proceeded to have a conversation about the merits of medical marijuana in its various forms. We arrived in Spokane at roughly the same time as Mike’s parents, then Mike drove us all home in his parents’ car because he was bored.

We had noticed after flying that Mike had some swelling of his feet and ankles. Then, when we were back home at his parents’ house, I was in the bathroom brushing my teeth and happened to look over and see Mike while he was standing there peeing. He wasn’t wearing a shirt, just shorts, but I noticed this “ring of puffiness” around his waist. He was so skinny that he really had no butt at all, so his shorts were just barely hanging on, but it looked as if his butt was above his shorts on his lower back. It absolutely freaked me out. I don’t know if I even told Mike about it, but I know I didn’t tell him that I emailed Dr. Ribas in a panic. He answered me quickly saying it was probably fluid shift from flying, and not to do anything about it, it should go away, which it did. But it didn’t comfort me knowing that was the first time this had happened. Something was changing. We made a bed on the floor and fell asleep upstairs catching up on old DVR’d TV shows.

The next day in the afternoon, Mike said he felt pretty good, and wanted to go down to town. So I hurried and got ready, came back upstairs, and by then, Mike had grown nauseous and too tired, so he just took a nap instead. But the following day, August 17th, was the last “adventure” Mike and I ever went on. It was the last time he ever got to be himself and do something he loves. He felt pretty good and told me we were going on a journey. Mike wanted to drive his truck so I quickly got ready and made him a protein smoothie, and then we went to Chewelah and visited the coffee shop. They were displaying some of Mike’s photography on the walls, which would be auctioned in a couple days at the benefit. I got a chai tea and cinnamon roll and we thanked the owner, Sally, for all she’d done for us. Mike got gas then drove out into the mountains on some old logging road; I can’t even recall where we were. He was himself again for that short period of time, flying up the mountain and skidding around corners while he laughed, but slowing down to puke every now and then. At one point he puked up his MEK inhibitor (we stopped and looked around in his puke to verify that it was in there) so he took another capsule (not the puked up one). It was good to see him having fun and being reckless. We parked at the top of a hillside with a mountain view, laid a blanket in the back of Mike’s truck, and I sat in the back to eat a few bites of the snacks we’d brought. But Mike lacked the energy to climb up into the back of the truck, and the sun was a bit too hot for him, so we left after just a few minutes.

We all spent the next couple days preparing for the benefit: folding t-shirts we’d had made, numbering items for the silent auction, and sorting through pictures of Mike to display. On August 18th, Mike’s first trial medication, PLX4032, was approved by the FDA. It was given the brand name of Zelboraf, generic name, vemurafenib. For a lot of people, it had extended their lives, and for a select few, it had given them an indefinite, potentially long life after being given less than a year to live. At the time, it felt monumental and an honor to have been part of a life changing drug, even if it hadn’t had miraculous results for Mike.