9-1-1

The first time I ever called 911 was when I was in high school. My mom and younger siblings had gone to Florida to Disneyworld and I, feeling independent and mature, chose to stay home by myself. It was frigidly cold in the middle of winter and I was making an amateur attempt at using the wood stove. I was having a hard time getting the fire started on the first night by myself, so I was leaving the stove door open for a while to let the fire get some air. I saw a strange glow outside the kitchen window that resembled taillights so I went outside to investigate. The first thing I saw were flames shooting out the chimney. I ran back in the house, called 911, told them my address, and proceeded to throw bowls of water in the stove to put it out, despite a distant memory of hearing you weren’t supposed to do that for risk of cracking the stove. Cracking the stove was the least of my worries, so I disregarded the advice. I was desperately trying to get my dog out of the house in case it went down in flames, but my panic scared him and he wouldn’t come out even as I pleaded with him in the most normal voice I could muster. Within minutes I had fire trucks coming down the driveway but the fire had already gone out. It was rather anticlimactic. Then, for the next few days, I was too scared to use the wood stove, so I had every space heater in the house on, which caused a breaker to trip and the power upstairs to go out, and I couldn’t figure out how to turn it back on. It was so cold in the house, the microwave literally froze and the buttons wouldn’t work (even though there was still power downstairs). So I had no heat, no power, and no microwave. I’d never been so happy to see my mom come home.

The second time I called 911 would be that night in our LA apartment on August 28th, 2011.

Mike awoke at 1:30 AM needing to pee. I awoke to the sounds of distress. He’d made it to the bathroom by bracing himself on the walls, but on the way back to bed, he’d collapsed on the floor and couldn’t get up. I jumped out of bed and ran to him, terrified. He was scared too. After literally crawling/dragging himself back to bed and my desperate prayer, we decided to call 911. Adrenaline pumping, I threw clothes on and quickly packed a bag. When paramedics arrived, they called my phone and I let them in the building and led them to our bedroom. Mike was calm but worried. He seemed to be in a great deal of pain. His back was hurting far more than usual. We discussed Mike’s medical history and then the EMTs lifted Mike onto the stretcher and carried him out to the waiting ambulance parked in the street with its lights flashing. It was crazy to think, just a few months earlier, Mike was the EMT treating and transporting patients by ambulance. Who would have imagined, the roles would be reversed so soon?

I painfully left Griffey in the apartment by himself and climbed into the ambulance with them. Our ride to the emergency room was literally about 30 seconds. The entrance to the ER was only a couple blocks away from our apartment, but it’s not like we had a way to move Mike to get him there ourselves.

Once in the ER, a resident doctor examined him and noted his numbness appeared to extend to his belly button region. The doctor also did a digital rectal exam to assess for sphincter tone and help determine degree of paralysis. If you’re unfamiliar with this…you can Google it. The medical world is a vulnerable place. Sometimes, drastic situations call for being subjected to a number of uncomfortable treatments and situations. We were becoming more familiar with vulnerability by then; no point in resisting.

Mike puked up a little bit of the previous night’s mac ‘n cheese then went in for a spinal MRI around 5 AM. I nervously waited in his little ER hospital room, a knot in my stomach, heart racing, crying and praying. I checked my email and saw Dr. Ribas had responded to my email from the night before where I explained Mike’s new symptoms of essentially non-functioning legs, with, “Jessica, you should bring him immediately to the ER to get an MRI done of the spine.” After Mike returned, the ER doctor came in shortly afterwards. We were told the MRI didn’t appear to reveal any obvious major masses but a section of spinal cord in the thoracic region was a “hot spot” where signaling was interrupted. Mike would likely get surgery to remove some vertebrae to reduce pressure and have rods and screws put in. It was a little bit of a relief to hear that there was a plan or potential solution, although scary.

I called Mike’s mom, Sue, and told her of our less than ideal new development. She said her and Tom would probably come down ASAP. I walked home to our apartment in the morning heat. I took Griffey out and spent a few minutes with him, washed my face to freshen up, then drove the car back to the ER. After a while, an orthopedic surgeon came in. He totally reversed the earlier decision and said there would be no surgery now. With the risks outweighing the benefit (in other words, Mike was a terminal case so why waste time with a surgery to try to help with his paralysis when he likely has little time left anyway), they would just try steroids and radiation to the spine in an attempt to bring down swelling enough to reduce compression of the spinal cord. They had since consulted with Dr. Ribas on the situation and he was in agreement with whatever they recommended. I called Sue back and told her the new decision. They had already bought their tickets and were scheduled to arrive that night at 7 PM with Mike’s sister, Trisha. I was so relieved to not have to be alone anymore. I felt so helpless and scared. I wasn’t particularly happy about the decision to not do surgery, if I remember correctly. It seemed like they were taking the easy way out and making decisions based on Mike’s bleak prognosis, which I totally understand from a medical perspective, but from my perspective, Mike was going to have a miracle and be cured, so they better do all they could to fix his paralysis.

Mike was incredibly sore and receiving a lot of IV Dilaudid. He was eating ice and throwing it up minutes later. So many doctors came in and out performing neurological function tests. Mike couldn’t lift his feet or legs a fraction of an inch off the bed, although he could make his toes move almost indiscernibly. A young, female radiologist came by our room and explained in great detail how the radiation would work and how she was confident that between that and the steroids, Mike’s symptoms should be reversed within one week. That may have been true if the cancer hadn’t been growing faster than the radiation could work.

They got started right away by transporting Mike to the radiology department. This required a hospital lift team to lift him with the sheet from the hospital bed to a gurney. It was Sunday. They called in all their head radiology team to come in on their day off because Mike’s case was an emergency and radiation was incredibly time sensitive to prevent any further spinal compression. The UCLA Medical Center seriously rocks.

When we arrived to the radiation department with the transport team, the radiologist, a young, nice-looking, Asian man – his name just came to me – Percy Lee – appeared in the waiting room, looking casual like he’d said, “Fuck it. It’s Sunday. I’m wearing jeans.” I waited in the waiting room (probably playing Angry Birds or something as a distraction), completely eerily alone with no front desk staff and no other patients, since they weren’t open that day, while Mike was taken back to have an x-ray and his first dose of radiation to the front and back of T6-T11 vertebrae. Afterwards, the transport team was paged once again to come back, lift Mike up by the sheet and back onto the gurney and take him back to the ER.

While we waited in the ER for the staff to complete the process of admitting Mike to the hospital as an in-patient and transporting him to the admit floor, at least another three doctors came in and out asking Mike questions, doing neurological tests and discussing the plan for his treatment. I took that opportunity to go back to the apartment, walk Griffey, and wait for Mike’s parents and Trisha to arrive. When they did, we hopped in the car and went back to the hospital, finding Mike had been moved to his new spacious room upstairs. After visiting until late into the evening, they left and took the car back to our apartment to stay the night. I was so grateful to have someone there not only for moral support but to have more people spending time with Griffey. I felt awful leaving him alone so much but I’d feel awful leaving Mike even for half an hour to go walk Griffey. This hospital room had become our new bedroom and the hard leather bench was now my bed.

Everything changed from that point on. I can’t look back at any time period during those 6 months and feel the same as I do about this new “era.” From our back and forth trips to Seattle, to our days upon days of staying home in Chewelah and watching documentaries and the Price is Right, to riding around on the golf cart with Griffey and feeding the pony, to our road trip to Whidbey Island and Bellingham, summer evenings and campfires at Brown’s Lake with the nieces and nephews, our road trip to Cannon Beach and Portland, our family vacation to Orcas Island, even the beginning of our time in LA – none of it feels good – but it has a dramatically different feeling than anything from this point on. Mike could walk. He could relatively take care of himself. He had some independence and there was hope. We still had hope for a miracle, but everything was different now. It felt like time was slipping out of our hands and we couldn’t hold onto it. We were watching a battle being lost by the day, by the hour, and there was nothing we could do about it. Despite their care and sensitivity, you could feel and see the doubt from every doctor and nurse who came in: that hint of believing their efforts were pointless and it was just a matter of time. We were given that look of pity: poor young couple; life’s just not fair. I don’t have any pictures from August 24th (which was the day we shared a meal at a Chinese restaurant and drove around LA) to August 30th. Too much happened in those few days where I was a caretaker, a patient advocate, and a nervous, petrified wreck. I have no happy memories from August 28th till the end. I still took pictures and we smiled, but for almost another month I felt like my chest and heart were being squeezed, my stomach was knotted up, and I was on an adrenaline high. Internally, I was fighting harder than I can possibly imagine fighting anything, willing God to perform a miracle, willing Mike jump out of bed and be cured, but physically I could do little besides sit there and fret. I read my Bible and books on Biblical healing to at least feel like I was actively doing something, increasing the likelihood that we would have a miracle. Besides worrying about him dying from cancer, I was worrying about him living. If this paralysis was permanent, I had an entirely new set of future visions of pushing him in a wheelchair and taking care of him for life. But I desperately wanted that over the alternative of losing him. The night I called 911 was the beginning of the end. There were ups and downs of hope, but mostly fear, and desperation to fight the inevitable. Mike, through it all, was positive and loving.

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