June 29th, the day after the CT scan, we checked out of the Seattle Cancer Care Alliance Hotel and went to our appointment with Dr. Thompson at Seattle Cancer Care Alliance. That day we were to receive the results of Mike’s one and only CT scan since beginning PLX only a month and a half ago. I was incredibly nervous while Mike and I sat in a different exam room from the one we normally were in, waiting for Dr. Thompson. When he came in the room, he had already seen the results of the CT scan but didn’t give much away. He began asking us questions about how Mike was feeling lately. Mike insisted he felt good, or at least better than when he started PLX. Dr. Thompson asked us how he felt compared to our last appointment when the PLX was working and Mike seemed much improved. I was hesitant to admit what I’d been thinking for the past couple weeks: that things were starting to get a little worse. Mike seemed to want to convince Dr. Thompson that he didn’t feel any worse, as if his believing it would make it true. I didn’t want to contradict Mike, but I had to suggest that I thought he seemed to feel a little worse lately. His pain had been a little worse and he’d had some low grade fevers creeping back.
Dr. Thompson pulled up the CT scan results on his computer and began telling us what I couldn’t bear to hear. My worst fears were confirmed. It was like I was outside of my body hearing what I had known deep down but couldn’t acknowledge. I started shaking and trembling the way I always did now upon receiving devastating news. If I’d opened my mouth, the chattering of my teeth would have been audible. My heart started pounding and my stomach knotted up tighter, if that was even possible. There were mixed results shown in the CT scan, he said. Some tumors had barely changed, but overall, most had grown and there was progression to new areas. Mike’s anemia had worsened significantly as well. Dr. Thompson clearly didn’t believe PLX was working for Mike anymore, the way it had when he’d first started it. He said there may be another clinical trial in Tacoma utilizing a MEK inhibitor, another experimental drug targeting a different point in the signaling pathway in melanoma cell mutations. However, he had no idea whether Mike would even qualify for the study or if there was a washout period between studies where Mike would have to go without any cancer treatment for a month before starting the clinical trial. I’m no expert, but having seen how quickly Mike’s cancer had progressed over the past couple months, the thought of a month with no treatment sounded like a death sentence to me. Dr. Thompson said he would send Mike’s chart to the Tacoma trial and find out what the requirements were. Dr. Thompson exited, I started crying, and again, Mike comforted me. Dr. Thompson’s nurse came in and hugged me and told me everything was going to be okay. After all the melanoma patients she’d worked with, she must have learned to be a really good liar.
We somberly left the clinic and went back to the SCCA House and parked outside, pulling out my laptop to hijack their free WiFi. Mike used his vaporizer while I looked up directions to get to Cannon Beach, Oregon. I don’t remember when we made the decision to go to Oregon, but we had been talking to a particular alternative medicine doctor from Hawaii for some time, trying to coordinate a time to meet when she’d be on the mainland. She was going to Portland for something within the next few days, so we planned on meeting her there at “some point.” It was all very haphazard and unsystematic. We were basically killing time by going to Cannon Beach until she arrived.
I drove us the almost four hour drive to Cannon Beach, my vision blurred by tears most of the way there. Mike spent some of the car ride sleeping and the rest of the time reassuring and comforting me. Somehow, he had taken the news remarkable well, whereas I was a blubbering mess. We arrived to the quaint tourist town on the coast with no plans of where to stay. We happened to drive by a Visitor Information Center so I grabbed a hotel directory and started calling around to find vacancy. Most of the places were booked, but ironically, the place we ended up was the lovely Hallmark Resort, the same place we had stayed four years earlier on a little road trip we’d taken with our dog, Griffey for spring break while I was in pharmacy school.
After we settled into our ocean view room, Mike took a nap while I bawled my eyes out some more writing my CaringBridge update to everyone, reporting on the days turn of events. I was afraid I was being such a downer, it would drag Mike down with me, but he seemed to be upbeat and positive. When he woke up we went and sat in the hot tub while he snacked on an apple then puked it up right when we got back to our room. I went to bed with a heavy weight on my chest, panic in my gut, and deep heartache so I prayed for nothing but to have a feeling of peace and joy come over me. We slept that night with the window open, the cold air merging with the heat from the crackling river rock fireplace, and the rhythmic sound of waves down below.
The next morning I woke up strangely happy with a renewed sense of hope. I don’t know where it came from, but at the time, I attributed it to a direct answer to my prayer the night before. We used the hot tub and sauna again, then Mike used his vaporizer while I got ready. The sun came out, in contrast to the cold rainy weather the day before, and we went into town and walked around, with the intention of sampling the food. We shared a couple of crepes, which you may know is my favorite food on the planet, then Mike wanted a piece of pizza. With our “organic raw diet” already shot to hell anyway, we each got a second dessert crepe on our way back to the car. Mike had to use his vaporizer to keep it all down. We went to a convenience store where Mike insisted he had to buy a bag of Sour Patch Kids. He wouldn’t stop eating them so I had to stash them in a drawer at the hotel room so he couldn’t eat them all at once and make himself sick.
Back at the hotel, Mike took an afternoon nap while I walked the enormous length of Cannon Beach in front of our hotel, Haystack Rock looming beautifully before me. For an hour or two by myself, I alternated between crying, watching wiener dogs chase one another up and down the beach, and audibly praying.
Mid prayer, I stumbled up something written in the sand that clearly said my name, but I couldn’t discern the rest. I stood there for the longest time trying to read it, as if it were a “sign” of divine origins and the importance of receiving the message was critical to our battle, but I couldn’t, for the life of me, figure it out. So I took a picture and hoped after staring at it long enough, it would come to me, but it never did. So if you can figure out what it says, let me know. After all this time, wondering if it meant something, it’s probably just some vulgar reference or something.
We slept with the windows open, fire burning, and waves crashing for one more night. I felt a sense of anticipation. The next day we were to see Dr. Nadia Linda Hole, the holistic “healer” and MD from Hawaii. Although skeptical, we had high hopes that this could be a turning point. We chose to think of it as a door opening when one had just closed on us. Sometimes good things come from something in a totally unexpected way.
Well, hello there!
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