Mike’s Benefit

August 19th was Mike’s benefit auction and dinner at the American Legion in Chewelah. His family brought all his pictures down to set up on display, Mike’s sisters and cousin and aunt worked incredibly hard organizing the entire benefit, gathering donations, and setting up while other friends volunteered in the kitchen serving food. The outpouring of volunteering and giving of people’s time, energy, finances, and love was overwhelming to Mike and I.

A couple days before that, two friends/acquaintances had stopped by Mike’s parents’ house to visit us. We chatted outside for a few minutes, and then as we said our goodbyes, a sealed white envelope was left on the plastic patio table. They were getting into their vehicle and backing away as I casually opened the envelope. My mouth fell open and I think my heart nearly stopped. Inside was a check for $10,000. I started sobbing. I showed it to Mike and he started crying. Now I’m bawling again just writing about it. I turned and chased down the car before they could drive away. The driver stopped and got out of the car, tears in their eyes as well, and hugged me, saying, “You weren’t supposed to open it yet.” Mike made his way over at his slower pace and hugged them as well, all of us crying; it was one of the most emotionally charged moments I’ve ever experienced. The gratitude I felt for this selfless, over-the-top gift, was more than I’ve ever felt in my life. It still gives me chills just thinking about it. I would never say who was responsible for this generosity, because I know they wouldn’t want credit for it. But for someone with a family and expenses of their own, to give away a huge amount of money like that, rather than choosing to spend it on something fun and exciting for themselves, I can never express what it meant to Mike and I. I literally spent the rest of the day crying about it. I can’t think about it even now without crying. That act was one of the main things that motivated me to donate to certain people and causes that Mike would have cared deeply about after he passed away. Paying it forward, remembering how people once helped you out tremendously when you needed it, and then doing the same for others when they most need it…that’s what it’s all about.

Mike’s benefit was tremendously successful. He drove his truck down, parking right behind the little covered booth we were sitting in to keep him out of the sun, and then he’d get in his truck occasionally to use his vaporizer. He ate a few bites of food, we walked around and looked at all the cool stuff people had donated for the auction, there was live music, and nearly everyone was wearing our t-shirts we’d ordered that said “Team Carp” on the front and “Live & Love as if Today is All You Have” on the back. We had an amazing time visiting with people, Mike never threw up, and he was alert and managed to last all night. We were one of the last ones to leave and the organizers handed us the cash box on our way out. As awkward as it felt to take, we took it home and laid out all the checks and cash on the kitchen counter. It was more money than we could have ever asked for or expected, although we wouldn’t have asked for anything. But it saved us. Or maybe it saved me. With the cost of our out of pocket maximum on our insurance, all the hotels in LA and Seattle, flights back and forth to each, the apartment in LA, and later, the private medical flight to get Mike back to Spokane, the costs were astronomical. So I am forever indebted to all of the family and friends who financially contributed throughout Mike’s six month journey.

Medical insurance isn’t something to go without. I know some people do, but I wouldn’t gamble like that. Anything can happen to anyone at any time. Without insurance, our medical bills would have added up to about $500,000. And that’s cheap considering both treatments in Seattle and LA were clinical trials so the costs of the study drug, lab work, and study related appointments were all free. Mike’s parents and I would have sold everything we own if we’d had to. Everyone should at least have some sort of catastrophic coverage so something like this doesn’t ruin you and your family’s life financially forever.

Life insurance. Get it. If you think you don’t need it, well, hopefully you’ll be right. If you think it’ll be motive for your partner to kill you, well, you should get a new partner. But seriously, everyone should have life insurance, even if they don’t have a family to support. Nobody should have to deal with financial burden at the same time as dealing with the loss of your partner, parent, child, etc. If you would like to see your spouse or loved one be able to take some time off to deal with their loss, pay off medical bills, possibly even accomplish some of their dreams, why not provide them with the benefit of even a little financial security/freedom after you are gone? Mike couldn’t get life insurance; he didn’t qualify because of the stage 2B melanoma on his leg less than 5 years before his stage 4 cancer. I guess the insurance company knew better than we did that he was a high risk case. But while he was sick, he kept saying he wished he’d been able to give me that. I told him, “Don’t be ridiculous, it doesn’t matter.” And I truly didn’t care, but if it had been the other way around, if I was the one dying, I desperately would’ve wished I could provide that for him too. I used to tell Mike, “If I die, use some of my life insurance money to take my ashes around the world and sprinkle them in all the places I’ve ever dreamed of going.” Instead, it was me taking Mike’s ashes around the world. Mike would thank you from the bottom of his heart, because by you taking care of him, you were also taking care of me.

A couple days after the benefit, Mike’s parents dropped us off at the airport to go back to LA. We had a good flight back, Mike only puked once and Griffey behaved. The shuttle dropped us off at our apartment and Mike had energy enough to go in the apartment sauna and then had a cup of tea (his new daily habit) and we shared a Cup Noodle before falling asleep watching Wedding Crashers in bed.

The following day was day 14 of the clinical trial and Mike had a full day of lab studies ahead of him. Every couple hours he had to go in and get blood work and EKGs done. We’d go back and forth from the apartment and UCLA Medical Center, sitting in the lab for hours. I’d always ask the lab tech for a warm blanket to snuggle up with. At one point, Dr. Ribas came and visited with us and said he thought Mike looked paler. They checked his hemoglobin levels, and sure enough, it had dropped to 8.6. Dr. Ribas scheduled for him to have a blood transfusion in a couple days. We now had completed the 2 weeks of MEK inhibitor and were beginning the 2 weeks off that the study called for. Automatically, I was scheming with ways to get more MEK inhibitor so Mike didn’t have to go without (which would have totally been against study protocol, but I didn’t care). The next day Mike had a PET scan. In the meantime, I called Dr. Ribas’s assistant, Jackie, who was the study coordinator. I asked her, hypothetically, how we could get more MEK inhibitor if Mike had puked some of them up or they’d been lost. She said she would contact the drug company and ask, but she didn’t think there’d be any way to get more. That afternoon, we drove to Best Buy and bought a GPS. I needed one for around LA. Then we used it to get to “Happy Medical Clinic” on Melrose Avenue, a medical marijuana prescribing clinic. It turned out we needed some proof of address with Mike’s name on it, so we couldn’t get it done that day and had to come back in a couple days. Mike paid some money to see a “doctor” there and got a recommendation card for obtaining medical marijuana in California. (I just learned, after googling the clinic name to make sure I had it correct, this clinic has since closed down, after an undercover NBC team sent a pretend “patient” in who had a medical exam by a guy named Steve but got a prescription signed with the name of a doctor nowhere near the premises. “Steve” turned out to be a massage therapist).

After a big lunch at a Chinese restaurant (which turned out to be our last meal out ever), we went to one pot shop, The Green Easy, who wouldn’t let Mike in because he didn’t have a California ID. So we went to another called Green Mile where Mike bought about $100 worth of brownies, cookies, and different samples of different strains to use in his vaporizer. Then Mike wanted to eat at Yogurtland.

Despite how awful it was, I sort of enjoyed our short time in LA because of the food and the weather. We were a bit gluttonous. And I loved taking Griffey for walks around the neighborhood behind our apartments. The houses were beautiful, the landscaping heavenly, it felt safe and warm. And literally right across the street from our apartment was this huge, 7 acre botanical garden owned by the university used to assist in teaching and research. It was the only thing that separated our apartment from the UCLA campus and Medical Center. The botanical garden was like the Garden of Eden. You could get lost walking the meandering paths through ecosystems designed to mimic the landscapes of deserts, bamboo forests, Mediterranean climates, Hawaii, Australia, and more. The pathways are designed to accommodate wheelchairs, there is a seating area called “The Nest” which is something of an outdoor classroom, there are bridges over streams with ducks and fish, and there are squirrels. I love squirrels, but I swear, these squirrels were possessed. They were angry squirrels. They’d gather in gangs in the trees above you and loudly and furiously heckle you as you walked beneath them. I was actually scared to walk below them because I thought it was possible that they’d jump on me and attack me. Griffey loved going over there. We’d walk all over the place. It was our haven.

Mike had felt increasingly sore the last couple days. We’d stopped giving him indomethacin, an anti-inflammatory pain reliever, because of its blood-thinning properties since he had a scheduled liver biopsy coming up in a few days. I don’t remember the purpose of this second liver biopsy. I think it was for potential future genetic testing or something. Anyways, Mike said his back was starting to feel similar to when he first got sick and the pain was excruciating. On top of that, his legs were feeling a bit weaker than usual and his feet and ankles were now permanently swollen to boot.

On August 25th, Mike got a blood transfusion, and the next day he had his liver biopsy. Both days he had an overly enthusiastic appetite and he threw up multiple times. I had to use the wheelchair that day as well; Mike was just too wobbly and weak. We didn’t know why, but he was increasingly having numbness and tingling in his feet and having a harder time walking. Mike had now been 3 days without the MEK inhibitor, and despite knowing it was not in his best interest, the study parameters had to be obeyed. The next day, Mike wobbled to the table to use his vaporizer, grasping chairs and countertops on the way to balance, I made us buckwheat pancakes, and then he wobbled back to the couch. We’d gotten past the point of jokingly comparing him to a newborn horse; his lack of coordination was starting to freak us out. I emailed Dr. Ribas explaining Mike’s inability to walk normally. I left Mike on the couch with some tea and a Cup Noodle, telling him not to move until I returned. I walked around Westwood running some errands, getting groceries and picking up some of Mike’s prescriptions. When I returned, he was in the same spot. We watched some movies then Mike wobbled to bed, bracing himself on the walls as he went.

That night, everything would change. Our optimistic road to improvement would take a final detour, resetting our path on a much more hopeless route. The “best case scenario” bar was set much lower and when we thought shit couldn’t get much worse, we realized it could.

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