June

June continued with optimism and the assumption that we were moving in a positive direction. It would be no time before Mike was feeling well enough to start doing some of his normal activities. Or so we told ourselves.

When Mike and I got back from Seattle and our visit to Whidbey Island, we had a few highlights through the month of June. We went to his cousin’s wedding in Spokane where we got to see family and friends. Mike ate two plates full of food, went out to the car and barfed it all back up, used his vaporizer, then went inside and ate a plate full of cake.

We went fishing at Brown’s Lake with Mike’s family where Mike and his dad told Wyatt (Mike’s little nephew) legends about “Sarah,” the underwater ghost who lives under the log in the lake and grabs boaters as they go by, terrifying Wyatt. Then we made hot dogs and s’mores around the fire.

We went out to dinner a few times here and there, and I was pretty happy to see Mike actually eat a meal and keep it down once in a while. Everywhere we went, he started taking a couch pillow with him to sit on because his back and hips hurt.

I ordered an obscene amount of wristbands to sell for fundraising for medical costs. They were camouflage and said “Team Carp – Faith In Healing.” We sold them at local Chewelah businesses over the next few months. Before I knew it, we’d sold out and I had to place another big order. I still have a number of friends and family who still wear their wristbands today. When I see someone wearing one, it deeply touches my heart, makes me feel extraordinary gratitude, while simultaneously bringing back painful memories.

One of Mike’s passions was golfing. He was a natural at it. Every day he longed to feel good enough to golf. Only once while he was sick, did he muster up the energy to go to the Chewelah golf course and chip and putt while snacking on a carrot in June. We chipped in the backyard at his parents’ house once or twice and attempted a toned down game of Frisbee.

During that time, we spent most of our time at home. I’d occasionally escape for a couple hours and drive to town and get groceries or drop off more wristbands at businesses and collect money for those sold. It was strange leaving Mike’s side, even for a couple hours. I could never forget, or leave the fear and anxiety behind, but for the time away, I could almost trick myself into believing he was feeling better than he really was. I would imagine him at home feeling good, and I’d come home expecting him to tell me what a great day he’d had and how much better he felt. But when I’d come home to a garbage can full of puke and Mike lying in the same spot on the floor, my delusions would come crashing down.

I also was on disability so I felt like I was constantly going to the doctor’s office to have my disability paperwork filled out. If you’re curious about the logistics of my time off from work, it worked like this: through Walmart I was able to take 6 weeks of salary continuance to care for an immediate family member. 6 weeks is great, but I certainly needed more. The only way to do this was to take a medical leave for myself. I received disability through the company that provides it through Walmart, citing depression and anxiety – which was hardly a stretch. I was able to get about 50% of my salary from that disability policy during my leave of absence. In addition, just a few weeks before Mike got sick, I had signed up for a supplemental disability insurance policy, prompted by Mike’s mom’s knee injury skiing that put her out of work. It just happened by chance that her injury inspired me to sign up for the supplemental plan in case something similar happened to me. It provided an even smaller percentage of my salary during my leave of absence, but every little bit helped. The thing with disability policies is they usually have a lifetime maximum benefit for disabilities pertaining to mental health. I just about exhausted mine. So if I ever lose my mind or have a mental breakdown, I’m kind of shit-out-of-luck. So don’t drive me crazy, people!

Our health insurance through Walmart was pretty decent too. We had a family out-of-pocket maximum of $10,000 which was met very quickly, of course. Without it, our medical bills would have easily totaled $500,000. Walmart, believe it or not, was incredibly helpful and accommodating during my time off and return to work. Truly, to have something like this happen to us, I am grateful it happened when it did. Had it been a year earlier, I would have been in pharmacy school with crummy insurance and definitely no paychecks, let alone no ability to take a leave of absence. Had it happened a year later, Mike would have been in the middle of PA school, making it even more stressful. A few years later? Maybe we would have had kids, and that would, of course, have made it so much more difficult. I can’t even imagine how people with small children go through something like this. My heart just breaks for them.

Once in a while, Mike would wake up feeling particularly sick, and it would scare him. A couple of times, a truly heart wrenching conversation ensued. One of those particular days, June 17th, Mike was in more pain than usual and had to use his breakthrough pain medication for the first time in a couple weeks. That day, Mike was so consumed with talking about death and funerals, we didn’t get out of bed until the afternoon. I tried to engage in the conversation in the same way I would have if he wasn’t sick, talking about it as if we were a healthy couple hypothetically discussing each of our individual wishes if anything were to ever happen to us in the distant future. We talked about what we’d want the other person to do after we died, about burial versus cremation, and what we’d want done with those ashes. As I’ve said many times, we were determined to maintain faith in a positive outcome, but with days like that, it was hard. We’d both be crying and terrified, but I tried to be strong, confident, and reassuring. If my internal rock wall crumbled, I felt like his would too. And it didn’t benefit either of us to be consumed with fear. The concept of the worst case scenario was too painful to even face. I couldn’t even mentally go there for more than a second; it was too crushing. These conversations were so exhausting that I felt the weight literally lift off my chest when Mike would finally smoke some pot. He’d not only feel better, he’d become his funny lighthearted self again. He no longer had any desire to continue a “deep” conversation.

Mike had a check up appointment with his Spokane oncologist, Dr. Nichols in the middle of June. His lab work came back a bit of a disappointment. Mike’s anemia had worsened again. His anemia could be considered an overall snapshot of how Mike’s cancer was progressing. Anemia is often a result of chronic disease as well as advanced cancer. Mike’s bones were full of cancer, which affects production of red blood cells. Being in medical professions, we obsessed over his lab work, his symptoms, everything. We wondered what EXACTLY was causing the anemia? Was it the bone metastases? Was it simply because cancer slows down the body’s ability to replenish red blood cells? Or was it because Mike was having blood loss somewhere (like the cancer had spread to his stomach or colon)? One of Mike’s vital signs that I obsessed over was his pulse. I mentioned once before that I could gauge his temperature by just being next to him in bed. Well, I could also predict his red blood cell count by his pulse. That sounds far fetched, but in a round-about way, it’s true. Because of his anemia and decreased oxygen capacity, his pulse would be high, a compensation by his heart trying to oxygenate his tissues. I would lie in bed and I could feel his pulse everywhere on him and hear it thumping loudly. He would literally be pulsating and I could look at his neck artery and see it so prominently pumping; it terrified me. For the few weeks after starting PLX, that nearly went away. His pulse went down to an almost normal range in the mid 80’s and his red blood cell count was maintained at a sufficiently high level. Towards the end of June, I started hearing and feeling the pulse again and it went up into the 100’s. His pulse literally corresponded with his red blood cell count, which corresponded with his disease state. But now his anemia was starting to worsen again. This didn’t make sense, he was supposed to be getting better.

June 18th Mike was in significantly more pain than he’d been in the last couple weeks. He spent most of the day lying on his back on the floor in the living room, his eyes closed, trying to relax. I had started reading a book to Mike about victory over trials, a Biblical book, but he started falling asleep a few minutes into me reading to him every night. That particular night Mike told me he’d had an epiphany that day. He said, “I’ve figured it out. If anything ever happens to me, I will watch over you and be your guardian angel.” I cried.

I had started to accidentally hear and read information about PLX, the “new breakthrough melanoma drug.” Not only were people telling me they heard about it on the news, I would briefly allow myself to read a quick article about it on my computer now and then, despite the heart palpitations it gave me. The two things I picked up from this information was first: PLX was a game changer; it was the first drug used in melanoma in years that was actually making a difference in survival with a large proportion of patients. Secondly, these results were only short-lived. For many patients, PLX doubled their survival time. On average, survival was about 16 months instead of 6-10 months. Yippee. I kept hearing snippets of the concept that PLX would work for a few months by either stopping or slowing the cancer growth, and then at some point, it would just stop being effective. Everyone had sounded so excited about this drug, which dumbfounded me. Unless it had the potential to cure my husband, I wasn’t excited. There were a few (and I mean like less than five) people in the studies who had unusual results with PLX of what appeared to be complete remission. Nobody knew what would happen or how long it would last, but at the moment, it was keeping their disease at bay for an extended period of time. I held onto hope that Mike would be one of those. 

When I look back at my “journal entries” from those days in the middle to end of June, I see a trend of mentioning Mike’s pain getting worse. He seemed to be dry heaving a lot during the middle of the night and first thing in the morning. Tom and I were working on a big puzzle on the kitchen counter for days, but Mike couldn’t even work on it because he felt so crappy. He helped with maybe one or two puzzle pieces then would lie back down on the couch while we finished it. And when I look back at my little notebook where I recorded every medication administration and time, I see a trend of Mike’s breakthrough pain medication being used more than it had been for the few weeks after starting PLX. 

Mike had his appointment in Seattle for his first CT scan since starting PLX on June 28th. We attempted to change it up a bit and drove across the state on highway 20, north of Chewelah. We left in the afternoon of the 27th, having to pull over a few times for Mike’s nausea, and there was a lot of vaporizer use along the windy road. We stopped in Winthrop when Mike got tired and sore, getting a hotel with a hot tub so he could soothe his back. The next day we got to Seattle Cancer Care Alliance just in time for Mike’s CT scan appointment. He successfully drank the jug of contrast liquid, fighting the urge to vomit the entire time, then disappeared with the radiology tech to the CT room. I paced the hallway praying the entire time while I waited for him. The results of this CT scan would determine everything. I’d maintained a positive attitude, but there was a deep fear, and a denial that things were starting to get worse again. The next day, Dr. Thompson would give us the results of Mike’s CT scan and our course would change once again. 

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