Jack and I were determined to have a beautiful summer. He’d recovered well from his brain surgery in early March when kind Dr. Girgis had removed an orange-sized tumor from his frontal lobe. Dr. Fragoso, his radiation oncologist, had confirmed that the tumor was a second cancer, melanoma, yet he gave him two thumbs up when he looked at the brain MRI we’d had done in early June. He said the extent of healing was almost miraculous. Jack was still tired from the chemo treatments the previous year, but he was able to drive again and be active on the farm.  In mid-June, he even drove us to Truckee to celebrate over lunch with a friend. We went to our favorite taqueria and toasted the fact that he was going to get his life back.

Jack driving to Truckee on June 18th.

One morning a few days later, Jack woke up with extreme back pain, barely able to move.  I started scolding him for overdoing it in the garden. Every summer, at the entrance to our garden, he put two tarps up over an old carport frame. We call it the palapa. We lace bamboo screening around the sides, bring the Block Rocker and some deck chairs out. I plant lots of flowers around the periphery. I fill up my cold plunge. Predictably, we put up some prayer flags. It is one of our favorite outdoor summer living spaces. This year it was bugging him that the palapa’s roof wasn’t up. The day before he’d gotten the ladder and done half of it with his tricky Navy rope knots. The whole time he was doing it I was begging him to stop; I was afraid he’d fall or hurt himself.

The pain got worse instead of better the next week, and we began to think it was something more than a badly pulled muscle. I called down to UC and we made an appointment with our oncologist’s PA. Our oncologist, we’ll call him Dr. Albertson, was not available. We’d last seen Dr. Albertson in mid-March when he told us not to worry about the brain tumor being a different cancer—melanoma, not sarcoma. He was sure that this was a false alarm. At that appointment, Jack had asked why we couldn’t talk over the phone when no tests were scheduled. Dr. Albertson said it was crucial he laid eyes on his patients, and that phone calls didn’t do the trick.

Jack was in so much pain when we got to UC mid-June that they gave him a shot of Dilaudid and a pre-warmed blanket. The PA switched him from Norco to Dilaudid and added Gabapentin, although she forgot to include any directions for titrating up, so he, feeling no effects, stopped taking it a few days later. She ordered a full body PET, which took a few weeks to get since Blue Dagger likes to deny scans the first two times they are ordered. By the time I got him to Marysville’s Rideout Hospital for the PET, he was even worse. In late June we took a trip to the local ER. A CT scan of his back was normal. The ER doc asked us if we’d had the “end of life conversation” with our oncologist.

These days were anguish for him, day and night. He couldn’t comfortably sit or lie, and every step brought a grimace to his face. “This hurts more than anything I’ve ever experienced,” he would say, and that’s something coming from my adrenaline junkie. Then one day he said, “Carolyn, something’s really wrong. This is not just a sore back.”  I called UC and begged for help. I got it. The nurse arranged for an ambulance to transport him on the two hour drive, and for him to be directly admitted to the oncology wing. This is rare, and it certainly caught the attention of the admitting doctor, who’d never heard of such a thing. We got him as comfortable as we could and waited for the MRI. I asked if they were going to do an MRI of his brain as well. No, they said, because he’d had a clear MRI of his brain a month prior.

At dusk, I went nearby to my friend Stephanie’s house. When I returned around dawn Jack was agitated and in pain. They’d taken him for his MRI in the middle of the night, but he couldn’t lie still long enough for both cycles of the scan.  By then we’d met our doctor, a green intern I later learned had been practicing medicine for a couple weeks. Practice is a good word. He came in that morning and told us there was no detectable cancer in his back, which shocked us. He said his back showed the normal degeneration of a man his age, but there was no reason for the pain he was having. They left us alone then, not sure what to do with us.

I called across the street to the cancer center. Would they be coming? “We are watching the case from here,” the same nurse who’d helped me said. Her tone was much different than when I’d called her for help. “Dr. Albertson does not feel the need to send the team over there.” I flashed back to his “gotta lay eyes on the patient” speech. In my harried state, I forgot to ask her if the brain cancer was in fact melanoma, or the previous sarcoma he’d been fighting for two years. At dusk, I went back to Stephanie’s.

When I returned in the morning, I found Jack on his side in a fetal position, silent tears falling down his cheeks.  “Haven’t they given you anything for pain?” I asked, and while he shook his head I pressed the red button to call for his nurse, who’d been both sweet and savvy the day before. I was glad she was back. But she too had changed her demeanor. “The pain meds are as needed,” she said sternly. “He didn’t ask for anything.”

“If you look in his chart you’ll see he has a brain injury due to surgery and radiation last spring,” I said.  “This affects his decision making. He may be unable to ask for help.”  She shrugged and repeated the policy. “Are you in pain now, Jack? Do you have something to ask me?” She went to get him his Dilaudid. “She’s become combative,” Jack noted.

A couple of hours later the intern came in, breathless.  “I took a closer look at the MRI, and I found something!”  His excitement felt inappropriate in the room. “You have one herniated disc, that must be what’s causing the pain.”  This seemed unlikely to us, having known people with herniated discs, but we took it. “Since this isn’t cancer, we’ll need to discharge you,” he said.  I asked him what Albertson’s team thought. He said they weren’t involved, and he wasn’t even sure they knew Jack was in the hospital. I didn’t correct him.

“But he is so weak now, how can I take care of him?” I asked. Suddenly I was afraid.

“If you can’t take care of him, we’ll transfer him to a nursing facility down here,” the intern said sternly.

I took a deep breath. “I really feel done with this hospital,” I said.

“That’s a shame,” the intern replied without a trace of sincerity in his voice.

“There’s no way I’ll ever put him in a nursing home,” I said, my courage returning. “Let’s get ready to get the hell out of here, Jack.”

Thanks to the kind workers at the front entrance to UC and their hydraulic lift, we got Jack in my Runner. The trips home from the hospital were usually easier since he had more drugs and better drugs in his system. The intern put him on a very small dose of long-acting morphine and some Tylenol as well. On the way home I told him of my new, two-pronged plan. First, I had to get him PT for the back issue, get him out of the pain cycle. Then I was going to find an oncologist who gave a shit and practiced telemedicine. We tried to rejoice in the fact that the cancer hadn’t gone into his back, but the circumstances were still too daunting to warrant celebration.

I got him out of the Runner and in the house, settled in his chair with his walker nearby. “I noticed the morning glories need water, and the hose is right there,” I said. “I’ll be right outside.”  He nodded.

I walked the fifteen yards outside and started watering my first pot of thirsty flowers, my mind racing with my new agenda. Then I heard it. SLAM! My mountain man had collapsed on the floor. I dropped the hose and ran to him, cursing the fact that I’d need to call 911 the very day I got him home.

I’d never felt more alone.

Friends have created this GoFundMe to help CC with Jack’s medical expenses.  We are 2/3 to our goal. Please share and contribute if you can.