LA

On August 1^st, 2011, Mike’s sister, Laura, took us to the airport for our move to LA. When we got there, Mike barely had the energy to even walk into the airport. He was becoming incredibly exhausted with a tiny bit of exertion lately. So I pushed him in a wheelchair, checked our two rolling suitcases, and had Griffey in his doggy duffle bag hanging off my shoulder. We were always able to get to the front of the security line with Mike in the wheelchair and board early, which was a notable “cancer perk.” Flying with Griffey is an interesting experience. He pants and shakes and whines. If I could just hold him on my lap, he would be fine, but dogs are supposed to be kept under the seat in front of you. So I was constantly putting my fingers in his little bag and “shushing” him to keep him calm. In Seattle, there was an airport agent with a wheelchair waiting when we exited the plane. When you buy your tickets online, and select “need wheelchair assistance,” the airline automatically has someone waiting for you when you get off the plane and then ready at the gate to take you to the plane for departure. It’s pretty awesome. I never knew whether I was supposed to tip them like a porter or whether that would be inappropriate. Even now, when I get off a plane and I see agents waiting with wheelchairs, I get a little anxiety from the déjà vu.

 

During our layover in Seattle, I took Griffey to pee on a potty pad in the family restroom then Mike and I shared a couple bagels. I think Mike ate a pot cookie too because he ordered a snack pack on the next flight to LA and never threw up the entire day. How did we not have anxiety flying with pot cookies and his vaporizer in his backpack? I have no idea. Too much other shit to have anxiety about, I guess.  When we arrived to LAX, we took the Super Shuttle to Hotel Palomar in Westwood. It was a beautiful, trendy hotel on Wilshire Boulevard. When we arrived, they had a dog-shaped black board out front that said “Welcome Furry Friends” with all the names of the dogs staying at the hotel. Sure enough, Griffey’s name was on there in anticipation of his arrival. At check-in, they even gave us a welcome basket for Griffey. That night we got settled in and watched the Bachelorette Finale. Taking Griffey outside to go potty involved walking him down the hotel hallway, taking the elevator down 14 floors to the lobby where Griffey would prance through like he owned the place, then we’d walk along busy Wilshire Boulevard. On our way back to the room, we’d run down our hallway as fast as we could as long as nobody was around. Then he would perch in his plush chair by the window and watch the bustle of the city down below.

 

The next morning, we requested the hotel car to take us to the Eye Institute at UCLA. The study required baseline and follow up eye exams because the MEK inhibitor medication had a potential side effect of affecting vision. We arrived at the eye clinic and were told the doctor we were scheduled to see was out of the country this week and our appointment was next week. I panicked. Did we fly all the way down here the wrong week?! Mike was having such a difficult time walking he was almost collapsing. In the last few months I’d never seen him so easily exhausted; it was giving me anxiety. So we slowly walked across the street to a patch of lawn near Dr. Ribas’ office and I left Mike there while I ran up to his office and had his assistant, Jackie, paged. She confirmed we were there the right dates, and wasn’t sure how the eye appointment place had gotten the date wrong. I explained that Mike was down lying in the grass because he could barely walk. So she got me a wheelchair and I went and got him. I brought him up to the medical office where they drew his blood to check his hemoglobin. Sure enough, it had dropped down to 7.8, so he would need a blood transfusion. Jackie was also desperately trying to schedule a PET scan for Mike that week since it was required before starting the clinical trial, but there were no available times to get him in. They said the easiest way to get both the transfusion and a PET scan done ASAP, was to go to the ER. So hospital personnel transported Mike by wheelchair to the ER on the other side of the medical complex through long hallways and parking garages. Finally we sat in the ER waiting room with Mike’s back killing him since he had to sit for so long, then finally made it back to the ER and he got to lie in a gurney in the hallway of the ER for another couple hours. Finally a nurse, Sophia, I think her name was, attended to him. Watching her try to place Mike’s IV like she was sewing through leather was one of the most painful things I’ve ever witnessed. When everyone over the past few months seemed to have a fairly easy time getting it started, this was like mutilation. At one point she asked, “Is it normally this hard for them to get an IV started on you, or is it just me?” In my horror of watching her digging around in his arm with a big needle, I blurted out, “No, it’s just you!” I felt bad, but I couldn’t stand to watch her torture him anymore. I wanted to reach over and smack her. We made jokes about “hopefully we don’t get Sophia again,” after that.  

 

I hadn’t brought any of Mike’s pills with me since all we thought we were doing that day was going to an early morning eye appointment. Since I knew it would be a while before anything got taken care of, we agreed I should go back and see Griffey at the hotel and get Mike’s PLX pills, so I walked back to our hotel which was about a mile away from the medical center. I took Griffey outside and spent some time with him while I looked up directions to the apartments we were going to be moving into. I walked to the apartments, which was just about a block from the UCLA Medical Plaza. It was an older complex along the same street that ran right in front of the medical complex with a gated parking garage and a pool out front. I met the manager who was a bit rude until I told her why we were staying there, and then she became extremely sweet and accommodating. Cancer perks. She showed me our ground floor apartment which was already furnished with a bed, dresser, couch and chair, coffee table, accent tables and lamps, a round glass kitchen table and chairs, bar stools at the kitchen counter, and a TV and stand. It was a perfectly comfortable space, although dated with white plastic blinds, a brown air conditioner, and gold trim around the mirrors. We didn’t care. I paid the deposit for the apartment, which was something atrocious like $2,800. The monthly rent was like $2,500. The same place in Spokane would probably be $600. 

 

I walked back to the ER and found Mike in an observation suite. He’d already had a brain MRI and was drinking contrast liquid for a CT scan next. He kept it down, and then went for the CT scan. I ordered us dinner from the cafeteria then lay around watching House Hunters on TV while Mike slept waiting for the blood transfusion. Around 10 pm, I figured I’d better get back to Griffey; he was staying alone in the hotel room after all. So I said goodbye and called the hotel to send someone to come get me in the house car. I felt awful leaving Mike alone overnight.

 

The next morning I called Mike on the hospital phone then got a ride to the ER. He’d gotten a transfusion over night. When I got there, he’d ordered me French toast for breakfast. We napped until he was discharged around noon then got a ride back to the hotel where Mike slept again while I went to a pharmacy and picked up his new nausea medication prescription and got some groceries at Whole Foods. Mike didn’t sleep at all that night. I woke up at 5 am to him still reading the book of Matthew in his Bible.

 

The next day, we took a taxi back to the medical plaza for Mike’s scheduled PET scan. Afterwards, thanks to the transfusion improving his energy and oxygen capacity, he felt up for slowing walking to Yogurtland on Westwood Boulevard, which began my love affair with self serve frozen yogurt. We shared a Jamba Juice as well, then tried to take a cab back to the hotel. The cab driver we asked was reluctant at such a short trip, so we walked away. Seconds later, another cab driver pulled up next to us and told us to get in, he would take us. When he dropped us off, he tried to not let us pay him but we insisted. There is still hope for humanity. That night we went to dinner at the hotel restaurant. It felt like old times, as if we were on a date, enjoying one another’s company, not talking about cancer. Then we slowly made our way back to our room where Mike immediately puked up his dinner.

 

 

 

The next day we felt adventurous (a relative term during this time), so we walked out the hotel and caught a city bus. I had studied a map prior to our bus hopping, so we kind of knew what we were doing. We got off the bus and walked quite a ways to the Grove shopping area, stopping at a random camera shop along the way. We got some food, Mike bought a smaller t-shirt to fit his shrinking frame as well as some smaller shorts, that even at waist size 28, were still falling off of him. We walked a very long way to some famous tattoo shop, because we were still considering getting some sort of significant tattoo while in LA, and then we walked back to a bus stop to take us back to the hotel. Sitting on the bus, I was rubbing Mike’s arm and noticed little lumps under his skin. I tried not to acknowledge it, but I suspected the cancer was cropping up in more and more spots. That day was probably the best Mike had felt in a long time, perhaps the entire time. He had less pain, never threw up, and had a surprising amount of energy.

The next day I walked to Westwood Village and shopped around a little bit, gave some money to a couple bums, and got a pedicure while Mike slept. The movie premiere for Glee was about to start so there were streets blocked off and red carpet rolled out, so I detoured my way around the neighborhood, picking up a few cute clothing items in the process, which still give me memories of that time when I wear them. I desperately wished we could have been there on different terms. I would have had so much fun with Mike if he’d been well. Those times when I got out by myself for an hour or two were blissful but guilt ridden. It allowed me to be distracted enough that I felt a little peace for a short period of time.

 

 

 

 

 

The next few days consisted of walking short distances to Yogurtland, Noah’s Bagel, and a nearby church service on Sunday that Mike slept through. He couldn’t seem to stay awake for anything. It didn’t matter where we were (in public or not), what time it was, what position he was in, if we were having a conversation or not, Mike’s eyes would close then he’d fall asleep and slump over to one side. Mike’s nausea seemed to be a little bit better with his new medication, Compazine. His transfusion had eliminated the necessity of a wheelchair, but his pulse still thumped in his neck. Mike had to spend a full day at the infusion room having blood draws every two hours for a total of eight hours prior to starting the study as well as an EKG. Then he had to see the dermatologist also involved in the study, Dr. Lo, who we asked about all the lumps we’d been noticing under Mike’s skin. He said some of them were cysts, but the deeper ones were melanoma. That was depressing. The PLX did seem to have some side effects like hair thinning; Mike’s hair was a bit thinner and his eyebrows and facial hair little more sparse. And besides some cysts under the skin, he had a lump starting to grow under the skin on the edge of his upper lip which would continue to get a little bigger. One night we ordered a pizza and Mike used his vaporizer. He ate an entire half of a pizza without throwing up. He was so tired and out of it, he was kind of eating it in his sleep. The next day was almost the most miserable I’d ever seen him. He was so bloated and uncomfortable all day, he didn’t eat at all. He started the first dose of the new study medication, the MEK inhibitor the morning of August 9^th, which would consist of four capsules once daily for 14 out of 28 days each month. Again, he had to stay for blood draws every two hours. They were stealing so much blood, it felt like the transfusion he’d just had was essentially worthless. Since this was a Phase 1 trial, he was a guinea pig for the researchers to determine the safety, tolerability, kinetics, and correct dosing for the combination of the BRAF and MEK inhibitors together. But we were fortunate to be one of only about ten patients accepted into this study at UCLA.

 

After we made it back to the hotel, Mike told me he was having a hard time. By that he meant he’d been thinking about the reality of our situation and was having his doubts. He was scared. When he got scared, I got scared. It put a knot in my stomach and an increased constriction on my chest. He wanted me to write him some motivational Bible quotes. Mike was very into lists; he obsessed over things and needed a constant reminder of things to focus on to relax. I spent the night leafing through the Bible writing encouraging promises and comforting verses for him to carry around and refer to.

The next day our apartment would be ready for us and we’d be “moving out” of the hotel. We’d been there for ten days. Mike’s parents would be arriving with our car and more of our stuff as well. Despite the fact that the study had a schedule for us all laid out, and our lives should have been predictable, nothing was ever what we expected and things would continue to change unexpectedly. Our time in LA was a roller-coaster.

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