Waiting Period

Sorry it’s been so long since I’ve written. I’ve just been busy, no other excuses than that. Picking up where I left off with my last post on our first trip to Seattle… 

The next period of time was quite unpleasant. We went back to Chewelah to wait for Mike’s biopsy sample to be tested for the genetic mutation that would determine what the treatment plan was. In general, Mike was feeling awful. He slept almost all day, threw up multiple times on a daily basis, lost a lot of weight because he couldn’t keep anything down, and he was in a ton of pain. Mike would lie on the couch at his parents’ in his sweat pants, sometimes with Griffey curled up next to him, and I would either read or watch TV. We’d watch the Price Is Right in the morning like an old retired couple. He’d sleep most of the day, only waking up when I would give him his different medications throughout the day and night. The Ativan that he would occasionally take for nausea and anxiety would make him babble and reach for things in his sleep, and suddenly respond to an outside conversation with gibberish that didn’t make any sense whatsoever. Mike’s parents and I had some good laughs at his expense. He would be in a drugged, half-awake state of existence much of the time. He’d literally be falling asleep at the table between bites of food. His eyes would close, his fork or spoon would hover mid-air for a few seconds, then Mike’s eyes would pop open and he’d realize he’d fallen asleep, and sheepishly smile at me. I’d be frustrated because I just wanted to get him to eat as much as possible and it would take him so long to do anything since he couldn’t stay awake to do it. In the middle of the night one time, he was saying things in his sleep that were so absurd I carried on a fake conversation with him, responding to each thing he said, just so I could write it all down in a notebook and tell him what he’d said the next day. 

I also felt incredibly lonely because Mike wasn’t really “there” at the time. He was just barely awake, trying to stay out of pain and make his existence more bearable. I desperately wanted to have meaningful conversations with him, to express how scared I was and what my fears and thoughts were. I needed my best friend but he wasn’t there. I’d be sitting next to him on the bed telling him how I felt, only to realize his eyes were closed and he hadn’t heard one word I’d said. I’d lie there next to him crying, but he was too zonked to hear me. Sometimes I felt sorry for myself. Which in turn made me feel horribly guilty. He needed me to be strong; he was the one who was entitled to feel sorry for himself, and there I was bawling my eyes out trying to get his attention. There’s nothing anyone else could have done; I just needed my husband and no one else. Mike also started having strange insomniac bouts. He’d sleep all day then wake up in the middle of the night and not be able to sleep. So he’d wake me up during the only time I didn’t want to have a conversation, when I was desperately tired and needed to sleep.

As Mike’s personal pharmacist and secretary, I began keeping track of everything in my pocket-sized notebook and carried it around everywhere we went, writing down the times of every medication administration, for which the alarm on my phone would go off every couple of hours alerting us to one med or another. A rather large Tupperware container full of drugs became Mike’s sustenance. It and the little orange notebook went everywhere with us. I’d also keep track of how many times Mike threw up, what he ate, his weight, how much pain he was in, sometimes even if he went to the bathroom or not that day. I wanted to keep track of any progress (or deterioration). Each night we’d go downstairs to his old childhood bedroom at his parents’ house to sleep and I could gauge how he was doing based on how he went down the stairs. If he was in a lot of pain, he would take the steps one step at a time VERY slowly, and in my mind I interpreted that to mean he was not well. Things were bad.

Mike was having horrendous fevers. One minute he’d start shaking violently, his teeth chattering, and I’d cover him in blankets and wrap myself around him trying to get him warm. It would be so severe that it would terrify me, as if some sort of cataclysmal even was about to occur. Then a few minutes later he’d stop chattering and all of a sudden he’d be sweating so profusely that his side of the bed would be literally drenched and he’d have to throw off all the blankets and rip his clothes off and he’d want ice packs. The doctors called these tumor fevers. I hated those damn things. I kept a thermometer by the bed so that in the middle of the night I could check his temperature, although after a week or two of this, I hardly needed one. I was so used to feeling his skin; I could practically gauge his temperature by feeling his body. On a few occasions in the middle of the night his fever surpassed 105 degrees. He would awake in the middle of the night in severe pain, moaning and sometimes shaking it hurt so bad. We had to increase his Oxycontin dose many times, as well as increasing it to every eight hours instead of every twelve. I set my alarm to go off every 4 hours throughout the day and night so I could give Mike his breakthrough pain medication so he wouldn’t wake up in excruciating pain. If I accidentally slept through my alarm, like I did a couple times, Mike would wake up a couple hours later in agony. It was too difficult for him to get up in the middle of the night to urinate so he’d pee in this giant plastic McDonald’s cup that sat next to the bed, then I’d go dump it out. It was difficult to get him to shower during that time because it hurt to stand for that long. I had to coax him to do it. He would sit on a shower chair while I showered with him and helped him. It was by showering with him so often that I would eventually notice how much weight he was losing and how his body was starting to change.With his weight loss, his arms and legs slowly started to get skinnier and less muscular and defined. His shoulders and chest became narrower and his shoulder blades began to stick out.

Because traditional chemotherapy can lower a person’s white blood cell count, we were very cautious about preventing infections. Mike only received that one dose of dacarbazine, which in hindsight probably had no effect on his immune system, but as with all things in our lives, we were neurotic. We had hand sanitizer all over the house, washed our hands often, drank purified water, and didn’t allow visitors in the house. The one time we went down to visit his sister, Trisha and her family in Chewelah, we wore face masks. We were told to see a doctor at any signs of infection, which included fever, so we were constantly on edge any time his fever spiked, which was often. It was always a toss-up whether we should go to the doctor’s office or not. I think maybe we were a little over the top about it all, but we didn’t care. Better safe than sorry.

About a week after Mike’s dose of chemo, we drove the vehicle we’d borrowed (to get back to Chewelah last time) back to Seattle. Mike had an appointment with the female doctor, Dr. Margolin, who was the head of the clinical trial. She went over all the protocol and side effects, and anything else in preparation for if he had the mutation. The next morning Mike’s parents, Tom and Sue, drove our car to Seattle and picked us up from the SCCA House (cancer hotel, for lack of a better term). The weather was beautiful in Seattle that day. Mike insisted we go to the Nike store. My panic and annoyance rose with each passing minute because Mike continued to find more and more clothing he thought he needed. He got shoes, socks, shorts, t-shirts, and yellow Livestrongwristbands. I was having a pathetic moment of selfishness, I suppose. I found it ludicrous that Mike needed all this stuff. I felt like this cancer experience had and should have made him feel less like life was about material things, but here he was spending hundreds of dollars on clothes. He later explained to me that the Livestrong clothes were more to him than just clothes. He felt like it gave him strength and power, and it meant something to him. How could I argue with that notion? Anything that made him feel strong was a positive thing, so I shut up. Looking back I feel horrible that I was bothered by it. 

After that, we went downtown to the Seattle Center and parked. With Mike’s back and hip pain and Sue on crutches from her knee injury, we were a slow moving bunch. But we eventually passed the fountains by the Space Needle where Mike had proposed to me seven years earlier, and made it to Mike’s intended destination, Memorial Stadium, where the Huskies had a scrimmage game that afternoon. We climbed the bleacher steps and Mike and Tom both spotted Jake Locker in the bleachers just above us. He was the quarterback for the Huskies the last four years and was about to enter the NFL draft. 

Mike had a number of sports heroes in his life. The first and most beloved was Ken Griffey Jr. That is a love affair that began as a small child and never let up. His room at his parents’ house is still a testimony to that with posters on every wall from childhood. As a child, Mike met Ken Griffey Jr. and Sr. at a golf course in Spokane when they came to play a celebrity fundraising event. It was a moment of true fulfillment. His second favorite athlete was Brandon Roy. He followed his basketball career at the University of Washington and then his promising career start in the NBA as a Portland Trailblazer. Mike and I never missed a Blazer game and we went to Portland for a couple of them. When Brandon Roy was the professional basketball guest at the Spokane Basketball tournament, Hoopfest in 2008, we were stoked. We met Brandon Roy and had him sign Husky and Trailblazer hats, and I told him he was the reason my husband insisted we had to buy NBA League Pass every year. Mike’s likely third favorite athlete was Jake Locker, even just as a college player. And here he was, currently awaiting the draft, sitting in the stands enjoying a Husky scrimmage as we were on that beautiful day. 

Mike and I sat on the hard stadium seats with Tom and Sue. Then Tom got up and climbed a couple rows and sat down by Jake Locker and a couple of older men, one of whom must’ve been his dad. A couple minutes later Tom came back down and told us to go talk to him. So we got up and climbed the steps, both shook Jake’s hand and introduced ourselves, then took a seat next to him. They were all wearing Carhartt pants and sweatshirts and camouflage hats. These were Mike and Tom’s kind of people.

Jake alluded to the fact that Tom had already told him about Mike’s cancer and said, “So did they catch it early?” He asked optimistically, trying to make conversation. “Not really,” Mike replied, in sort of an apologetic way, as if he was sorry to be the bearer of bad news. Mike and Jake chatted a little about the upcoming draft, and then I got a picture of the two of them, Mike grinning like a kid in a candy shop. We said goodbye, went and watched the rest of the scrimmage, then walked back to the car. How deeply satisfying, that Mike literally met all of his favorite athletes in his lifetime.

Mike wanted to drive for some ridiculous reason, and despite my reservations and overprotective nature, I was excited that he felt up to it. He had a great sense of direction, so he had no problem finding his way back to the freeway, and he was was doing great for a while, until I noticed he was drifting slightly from side to side in his lane on the freeway. This wouldn’t have normally made me that nervous except that I knew he was on high doses of oxycodone (this is not advisable or legal, by the way) and he fell asleep so easily during that time. So after a number of promises that he was fine, more drifting, and me frantically demanding he pull over, he finally switched with Tom and got in the back seat with me for our drive home.

The next week was characterized by worsening pain, worsening anemia, cookie cravings, barfing fits, popsicles, and blended ice in a cup with a spoon when that became the only thing he could keep down. There were some days where Mike would vomit a dozen times. He used the little plastic blue garbage can from his bedroom with a garbage bag in it. It went everywhere with him in the house or the car. We’d bring a roll of garbage bags with us everywhere we went. First thing in the morning, I’d wake up with a knot in my stomach, we’d sometimes pray together in bed, and then Mike would go upstairs. I’d come upstairs after showering and he’d usually be sitting in his dad’s recliner holding the garbage, usually already filled with bile. After he’d throw up, I’d tie off the bag and throw it away. 

On May 3^rd, we finally got a piece of good news. The doctor’s office in Seattle called and told us his genetic testing results were back, and Mike did in fact have the BRAF mutation! We were ecstatic because he could now qualify for the clinical trial, and our treatment options suddenly expanded. And the treatment couldn’t come soon enough. If I was being honest, I felt like Mike’s health was declining rapidly. There was a definite sense of urgency, and the need to do something fast. This ushered in a new “era” in our journey. 

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