The Struggle

That night of our first full day back in the apartment, Tom, Erik, Mike, Griffey, and I went for a walk all through UCLA’s campus with Mike in his new snazzy wheelchair. Erik pushed him along all the handicapped routes the whole way. We were gone for about 2 hours, walking past fountains, the beautiful campus library, gardens, sororities, and the entire campus was still abuzz late into the night. Mike’s ankles and feet were very swollen from sitting in the wheelchair for so long and they were freezing cold from not being able to move at all. Mike ate a Lunchable and some Pedialyte pops along the way, and then used his vaporizer for the first time in days when we got back to the apartment. The vaporizer made him able to eat a salad and a couple bowls of lentil soup and when he got back in bed, against my warning, he indulged in some Skittles and Sour Patch Kids then passed out. Throughout the night I set my alarm every two hours to get up and rotate Mike from side to side so he wouldn’t get sore from being on one side too long, which he often did, and to give him more pain medication. Every time my alarm would go off, I had to force myself to get up,

Later that day, Tom and Erik left and Mike’s other brother-in-law, Dan, showed up. After getting settled in, Dan went to the store and got groceries and made a lovely mashed potato and veggie dinner, some of which Mike was able to eat. Then we got Mike strapped into his brace and into the wheelchair and we cruised around the neighborhood behind our apartments looking at all the beautiful houses and landscaping until about 9pm. When we got back, Mike was comfortable in his wheelchair so he stayed in it and started wheeling himself around in the kitchen looking for snacks in the cupboards, but felt too bloated to eat so he settled on feeding treats to Griffey. Then Mike decided to try out his commode next to the bed. After sitting there on the hard plastic seat for a long time, he realized with his dwindling body fat, he no longer had any padding and was extremely sore and uncomfortable sitting there on his bony butt. At this point, since Mike was sleeping out in the living room in his hospital bed, I was sleeping on the couch so I could get up through the night with him, so anyone staying with us was sleeping in the bedroom. This worked well, because throughout the night, every couple hours I had to get up and roll Mike from side to side, and we were often up till the wee hours of the morning dealing with the aftermath of so many laxatives. I was hardly sleeping anymore.

Laura arrived the following day for her “shift” to help and keep us company. The home physical therapist came that afternoon for the first time. She had Mike stand up at the kitchen counter with his legs completely straight to stretch them out, which was incredibly painful because of not using those muscles for so long. Mike got tired quickly from supporting himself at the counter, but the physical therapist made a promising statement, that she thought he’d be able to walk again on his own someday. Wow, what an encouraging thing to hear! Then the home health nurse came after the physical therapist left and suggested that Mike may need IV nutrition. Mike was feeling so frustrated by his abdominal distension and pain, we all agreed to take him to the ER that afternoon. Dan pushed Mike in the wheelchair and we all walked the two or three blocks from our apartment to the ER, pep talking each other the whole way that we wouldn’t leave until we got this issue definitively resolved and the doctors actually did some imaging to find out what was happening in his abdomen. After a few hours of being there waiting, and no imaging or diagnostic tests, the attending doctor “diagnosed” Mike with paralytic ileus from narcotic use and sent us on our way, adding that Mike needed to establish with a primary physician here. We felt like we’d been brushed off and placated with a typical diagnosis that wasn’t correct. Mike was shitting his brains out for God’s sake. He didn’t have a paralyzed bowel.

Dan left and the next day me and Laura had to figure out how to get Mike to his follow up appointment in Santa Monica at Dr. Holly’s main office to have his staples in his back removed. I’d reserved a handicapped accessible cab to come get us but they didn’t show up in time to make the appointment so we hurriedly got Mike in his wheelchair, down to our car in the garage, and it was quite the task getting him from the high wheelchair to the low car seat. We used the walker and then left the wheelchair at home. Then when we got to the office and parked, we had to borrow a wheelchair from the office, and use the walker to get Mike out of the car and into the wheelchair. It was one of the more horrifying moments of the whole ordeal because Mike slipped out of the car onto the side of the street and Laura and I couldn’t lift him back up and Mike couldn’t use his legs to help us. And we were running late for our appointment. It was one of those moments you just wanted to melt into the ground and disappear. Or have someone who knew what they were doing come to the rescue. Finally with one of us lifting and the other pulling from inside the car, we got Mike back into the car and he successfully used the walker to get into the wheelchair. Laura and I felt so terrible, and Mike wasn’t too thrilled about the ordeal either. At the appointment, Mike had his staples removed, but I don’t think we even saw Dr. Holly at that visit.

The next day, we got Mike ready and pushed him in the wheelchair back to UCLA. I was sweating by the time we got there. This time, we were going to the urgent care/primary care office to get Mike established with a primary care physician, since that’s what the ER doctor told us to do regarding his abdominal distention. After meeting with a resident and attending doctor, they felt his abdominal distention was significant enough that they wanted Mike admitted to the hospital. But in order to get scans taken quicker, they sent us to the ER again. Around and around we went. At 10pm Mike was finally taken for a CT scan and Laura stayed with us until the results came at 1am. Results: a large abdominal mass was pushing into the abdominal cavity causing the distension and “full” feeling. Laura took our car back to the apartment to sleep and I stayed up with Mike until 4am when I finally fell asleep beside him in the hospital bed.

There was talk of transferring Mike to the Santa Monica UCLA hospital for some reason. I think it was because they had a better cancer care wing. But the problem was the current location in Westwood had a better spinal center. So Santa Monica oncologists didn’t want him transferred there unless his spinal tumors were stable and he wasn’t going to need another emergency spinal surgery. So they required a spinal MRI to see what was going on in there. While I went to the cafeteria to grab some lunch, Laura left to go home and Tom, Sue, and Trisha arrived. A couple hours later, the medical team said the MRI they performed only covered the lumbar region and they had to repeat it to get the thoracic region of the spine. Eventually the neurosurgeons returned to say there was an area of new concerning growth higher than the surgical region near T3-T6 and he’d require either surgery or radiation to that region. They left a message for Dr. Holly who said radiation for now would be appropriate since Mike was not showing symptoms from the tumor growth. So with these new developments, they decided to admit us to that hospital again, since the Santa Monica location apparently doesn’t do radiation. So it was back to the 6th floor again. I made a list of things for the nurse to stock our cupboards with, I put Mike’s softer bed pads on the bed and gave him a sponge bath, and then we got him in the wheelchair and walked around looking at the polar bear pictures on the walls and reading their descriptions again.

Mike told me he was having fun with me that night. He was rather chipper. But I got an email from Dr. Ribas who had been notified of the spinal growth. He said that it seemed the MEK inhibitor was no longer working, despite our continued use of it, and the MRI didn’t look good. I was emotional about it and Mike reminded me to take things one day at a time and keep the faith. We went to bed around 4am. Mike got too hot with me lying next to him so I got relegated back to the hard couch.

After almost two months of living in LA, I think we’d spent more time in the hospital than not. Mike had never even showered in our apartment shower because we hadn’t been there enough. His family stayed there more than we had. I’m so glad they were there for the support and to help with Griffey so I could be with Mike all the time. Each time we thought we’d be going back to our apartment to “live” and for Mike to “recover,” we’d end up right back in the hospital. So there we were again, in our familiar routine of frequent nurse visits and vital sign checks in the midst of their rotating shifts and unpredictable personalities, glances of pity and words of encouragement, and the constant fear of doctors entering with doomful expressions and devastating news. And through it all, Mike’s heart wrenching smile and sense of humor endured.