Coming Home
September 16th, the day after Mike was re-admitted to the 6th floor at UCLA, for the umpteenth time, he was transported back down to the radiology department to see Dr. Percy Lee, the radiologist, and get mapped for radiation of his spine at T3-T6 since that was the new area of growth. Three hours later, he had radiation. I passed the time by reading “Christ the Healer” and playing Angry Birds on our iPod. Mike’s parents and sister, Trisha, spent most of the day in our hospital room and then in the afternoon they went for a walk to a popular ice cream shop where you custom order ice cream sandwiches with different kinds of cookies and ice cream filling. They brought some back to Mike and he devoured them. The basis of his recent diet, Ensure pudding and Ensure smoothies, weren’t quite hitting the spot adequately. While they were walking around Westwood a couple blocks from the hospital, everyone had noticed that the movie premiere for “Dolphin Tale” was being set up at the Westwood Village Theater.
The next day, Mike woke up feeling the need to communicate with everyone who had been so supportive over the past few months via our CaringBridge website. He sat up in bed with my laptop and quickly typed a journal entry up:
Hello everyone this is Mike! I woke up kinda early this morning in the hospital and decided to get on here and write a quick little something myself. I don’t have much to say but for some time now I have wanted to get on here and express to all of you how greatly appreciative I am to have all of you in my life. This whole experience has been the hardest thing I have ever had to deal with and I couldn’t do it without all of the support I have received from everyone. From the bottom of my heart, thank you so very much for your incredible support. I love you all! Now we shall continue to fight this thing until I am completely healed! Thank you and God bless! Mike
Then Trisha, Sue, and I left Mike and Tom for a couple hours and walked down the street to watch the red carpet event to see Morgan Freeman and Harry Connick, Jr. get out of their limos. Two girls walked up to us with a bunch of tickets and asked us if we’d like to go to the premiere for free. We happily accepted, maybe a little guiltily that we’d be gone for so long, but also excited for a short distraction and free popcorn, pretzels, and soda along with the novelty of viewing the movie in the same theater as the stars that were in it. The audience really gets involved during movie premieres. People were cheering and clapping throughout the film and there were a number of people with prostheses in the audience as well, keeping with the theme of Dolphin Tale. Afterwards, we hurried back to the hospital and to reality.
The following day, September 18th, Trisha left early that morning and later Dr. Ribas came by to visit. He told us he had no doubt that the PLX/MEK inhibitor combo was no longer working for Mike. I had asked him about what Plan B might be via email, but he’d neglected to answer me. Now, at our visit that day, he let us know that Mike did not qualify for any more studies because he was no longer ambulatory. Apparently being able to walk was a requirement of all current available studies. Looking back, I realize Mike was too frail to try any other therapies. I understand what Dr. Ribas saw. But at the time, it was a race against time. We were desperate to delay or reverse the cancer to have a chance at Mike surviving. It’s not something you easily give up on. It meant whether or not Mike could have a chance at seeing the rest of his life or not, the chance for me to share my life with my best friend versus being alone.Dr. Ribas ultimately recommended we go back home to Spokane and try a traditional chemotherapy like CarboTaxol. The drug I’d been holding out hope for, ipilimumab, he said causes so much initial inflammation that it could cause compression of Mike’s spinal cord and stop his breathing. This was incredibly depressing news, and I felt hopeless once again. I knew there was no hope in traditional chemotherapy and I suspected it was just a suggestion to placate us, when we really didn’t even have enough time for it to come to fruition. After Tom and Sue left for a little bit, I cried and cried. Once again, Mike reminded me to have faith, saying, “It’s in God’s hands now. We always knew it might come down to this.”
When they got back, we strapped Mike into his brace and transferred him into the wheelchair, but not without incident, as his legs slipped out beneath him and all of us had to catch and hold him up until we were able to maneuver him back up into the chair, then went we down to the cafeteria. Mike craved everything. So we loaded up our trays with lasagna, clam chowder, vegetable pasta soup, pecan pie, and a bear claw. Mike had little bites of each then Tom finished off what was left. After the employees told us they were closing, we went outside and sat and laughed at Tom and Sue’s failure between the two of them to figure out how to take a cell phone picture and text it to Trisha.
The next day, Mike had his second radiation treatment, then Dr. Ribas came by to visit again. We told him we were convinced Mike needed TPN (Total Parenteral Nutrition) through an IV because he was unable to eat anything substantial and he felt he was starving. Dr. Ribas was resistant to the idea but finally conceded. After doing my own research, I learned why so many of our doctors had brushed aside the idea. There is only a 50% survival rate at 6 months after starting IV nutrition and the rate of mortality from sepsis (systemic infection) is quite high. It also worsens liver function, an area that Mike was already significantly compromised. So I changed my stance a bit and was more hesitant about Mike getting it. At first I thought, what could possibly be the downside to getting IV nutrition? Mike would gain weight, possibly get some nourishment that would boost his immune system and energy. But now, doing more reading, I realized the risk of infection is a serious concern. So then I was trying to convince Mike NOT to do it. He read the material I presented him and still felt it was worth the risk, and was annoyed by my negative attitude towards it. That night, I slept in his hospital bed next to him, getting up every couple hours to roll him from one side to the other. Nurses came in around 1AM and started his TPN. He was barely awake for it, his eyes half open, rolled back, his mouth open and dry.
The next morning Mike had radiation again and a second bag of TPN. He mentioned that he felt like he had a little less sensation and movement in his legs that day, which I tried to brush off as just his imagination. I ran back to the apartment around noon and came across Dr. Ribas on the other side of the street just in front of the hospital. He motioned for me to wait for him until he crossed the street. I don’t remember everything he said to me except to tell me I was very brave and I started crying. I cared about Dr. Ribas so much. Just a short 2 months ago, he’d been a ray of hope, an answered prayer. And now he was sending us home with nothing more he could do, as he probably had so many other patients before Mike. It felt like the winding down of a book but the end wasn’t resolving quickly enough to avoid being tragic. At the apartment, I showered and brought Griffey down with me to the laundry room to take care of all the laundry that had piled up over the past couple months, then packed our suitcases, throwing all nonessentials in garbage bags. We really had no idea how we were going to get everything back from California. Mike had me bring him back some marijuana tincture and some Pedialyte popsicles. I went to the apartment manager and wrote something up declaring our intent to vacate.
I got back to the hospital to find Mike had ordered a grilled cheese and tomato soup. He was chewing up the bites and then spitting them out and then licking the soup off the spoon. We also got some compression socks for him hoping they’d help with his swollen cankles. The fluid accumulation in his body was starting to get worse. It would shift depending on his position. If he was in the wheelchair, his feet and ankles were huge; if he was in bed, it seemed to settle in his abdomen, which worsened his distention pain. So we often angled the bed down so there was a slight incline and the fluid would go to his legs instead.There was a sense of urgency to get us home, but I wasn’t willing to acknowledge why. Dr. Ribas seemed determined to get us back as quickly as possible and the hospital was working to coordinate with Dr. Joni Nichols, our oncologist in Spokane, to get Mike’s radiation and chemotherapy in place for when we got back. The case worker at UCLA was also presented with the problem of figuring out how to get us back to Spokane. It had become increasingly clear over the past day or two that Mike was no longer safe to fly on a commercial flight. We couldn’t grasp how we would transport him or seat him on a flight without his ability to walk. It’s hard enough getting on and off a plane with all those people and luggage when you’re not paralyzed. While I’d been gone to the apartment, the case manager had come and discussed the option of an “Angel Flight,” which is a medical flight with a hefty price tag of $16,000-$18,000 and not typically covered by insurance. The hospital we’d be transferred to would be Deaconess in Spokane since Mike would continue to need radiation and that was where his previous radiologist, Dr. Fairbanks, practiced from.
That evening, Mike found himself with increasing pain from abdominal distention. He requested an order for IV Dilaudid, rather than his oral pills. Anytime he’d needed breakthrough pain medication, it took so long for the hospital staff to get it, we’d just stopped asking for it and sneaking him doses of our own meds. You’re not supposed to do that but I didn’t care. The doctor OK’d a one-time dose of it through IV, which afforded Mike a couple hours of rest, and then his parents went back to the apartment.
But around 10PM, Mike started experiencing far more intense pain in his spine and abdomen. He began sweating profusely and his bed sheets were drenched. His pain was approaching a 10 out of 10, he told me, which hadn’t happened since he’d awoken from spinal surgery. I called the nurses’ station and told them to page Dr. Le, the attending, right away and that it was an emergency. The doctor and a nurse came and gave Mike another dose of IV Dilaudid, which couldn’t come quickly enough for either of us. Mike’s pulse was in the 140s so they hooked him up to do an EKG, momentarily considered doing a repeat CT scan of his abdomen, but ultimately couldn’t figure out what was wrong with him so suddenly. I was crying, holding his hand, and silently praying a desperate prayer while they ran around feeling a bit helpless and Mike agonized in this strange, sudden, intense pain. The IV pain medication took action, and Mike seemed to drift into a state of drug induced sleep, my panic subsided, and I read my Bible by his side with determination, because I had to do something.
At one point a while later, Mike woke up and we were mid conversation when he realized he no longer had any sensation in his lower body or the ability to even wiggle his toes. The nurse, Paula, who came by to check on him, had the thought to check his bladder with an ultrasound and found that sure enough, it was completely full but Mike couldn’t feel a thing. They catheterized him and emptied it out. Prior to this, he’d been able to use a urinal whenever he felt the urge. The nurse notified the new attending physician, a woman with funny glasses, who came and did an exam on Mike, confirming he could not move anything below the waist, which really freaked Mike out. It seemed in that 15 minute episode of pain, we had literally witnessed the growth of a spinal tumor closing around the spinal cord and causing irreversible damage. Mike accepted the permanent paralysis, mentioning his sadness that he’d never golf again, and then expressed fear that it would move farther up the spine causing loss of function to his arms. The neurosurgeon on duty was notified, and Mike was sent for another MRI around midnight. I slept for an hour, awaking only to find that he was still gone. When he returned, Mike said the MRI had lasted a full claustrophobic two hours and with his intense fever and sweating, he feared he was going to have heat stroke and die in there. Around 3AM, we were able to sleep for a couple hours, Mike’s eyes rolled back, his mouth open, sweat dripping off his face and his pulse racing.
The next day, September 21st, Tom and Sue arrived in the morning and then Mike and I left for radiation again. I cried a bit in the waiting room while he was gone. While we sat together waiting for his transport back to the room, a nurse named Alice who’d been incredibly sweet to us, told us that if it was required to have a nurse go along with Mike on his medical flight home, she’d be happy to go along with us. I cried even more.
Back in our room, Mike’s catheter urine was incredibly dark, although he was trying to drink as much water as he could. He felt so dehydrated but his abdomen just couldn’t fit much in there. Mike said, “Each drink is worth a million dollars. I wish I could chug a gallon.” Soon, everyone involved in Mike’s care seemed to be in his room: the residents and attending doctor, his case worker, Mimi, his sweet nurse Lynn, and Mike’s parents. Mike told us he was feeling short of breath and asked for oxygen, which broke my heart a bit. Another step in the direction of loss of independence and another organ losing function. But he said it in a professional way like he was working on the ambulance again, like he was asking for it for someone else. He was observing his physiologic deterioration but separating himself from it. They provided him a nasal canula which he put on himself. The doctor told us we could go home to Spokane that day if we were ready. The price of the Angel MedFlight would only be $12,000 which was significantly less than we had anticipated. Me and Mike’s parents agreed to split the cost and then hoped our insurance would reimburse us for it after the cost was submitted to them. After everyone left the room, Mike asked his nurse for a water enema to reduce some distention, saying, “Don’t worry, I can’t feel a thing.”
Tom and I walked back to our apartment through campus and through the botanical gardens, talking the entire way, fearing the end. He said, “I just feel lucky to have had 27 great years with him.” I told Tom I just couldn’t imagine life without Mike, not waking up and talking to him in the morning, and how I’m not ready for him to go. I stopped and started bawling my eyes out and Tom wrapped me in a hug, tears in his eyes. Back at the apartment, we packed up a few more things, I paid the last prorated amount of rent, and then we walked back to the hospital, again stopping for Tom to hug me while I sobbed. Mike was asleep in bed when we got back, however the enema had taken effect and the angle of the bed had resulted in a mess requiring immediate attention. A new nurse said she’d take care of it, assuring me she was an “expert” then hastily rolled Mike over the lump of bedding, hurting his spine in the process, and leaving the new sheets awkwardly bunched up so Mike was uncomfortable, then acting annoyed when he asked if she could fix them. He told her it was fine, never mind, then we fixed them after she left.
We were scrambling to get everything in order to fly Mike home that day. We cancelled the cable at the apartment, scheduled for someone to pick up the medical equipment we’d rented and the TVs. We called a taxi to take Sue to the airport with one of our bags. The medical flight could only fit two extra people so we all decided Tom would go with us. The doctors took Mike to get a lung scan to make sure he didn’t have a blood clot, since he was having new shortness of breath that day. I cried in the room while he was gone and the sweet nurse, Lynn, came in. She asked if she could pray with me, and sat next to me and hugged me. She asked about Mike and I told her about him before he had cancer. I showed her pictures and described how amazing he was. She agreed; Mike was perfect. Then the female oncology doctor came in and started talking to me, tears in her eyes as she listened to me ramble on about how incredible Mike was. When Mike got back, we were alone for a while. I told him about how much his dad had been there for me the last couple days and how scared I was. I’d been so afraid and hesitant to express that to Mike. I didn’t want to scare him. But I couldn’t hold it in any more, and I sobbed and sobbed until I could barely breathe. Mike told me regardless of what happened to him, he just wanted me to be happy. He was giving me his blessing to someday move on. He also told me he wanted me to be there for his parents because they would need me.
Tom came back after sending Sue with a couple of our bags to the airport. He brought our small suitcases with clothes and things that we’d need when we got to Spokane, I ordered one last meal from the hospital while Tom went back to the apartment and got Griffey. Soon, two local EMTs arrived to transport Mike by ambulance. They had also brought the Angel MedFlight paramedic and nurse with them from the airport to accompany us. They were truly amazing. The paramedic was so attentive and involved with Mike’s care. He gave him more pain medication to make him even more comfortable. We climbed into the ambulance, Tom up front with the driver, Griffey on his lap in his carrier, me in the back with Mike on a stretcher being monitored by the paramedic and nurse. Mike was hooked up to a monitor of his pulse and respirations. The entire drive to the airport, with lights and sirens blaring, I was obsessively watching Mike’s breathing which occasionally seemed to stop. His respirations per minute had dropped so low, I was concerned they’d overdosed him with his IV pain medication.
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