Last Days

The following morning, September 22nd, Dr. Nichols stopped by and visited us around 8AM. Mike was taken down for radiation mapping after that, and I remained in the room and slept. After getting 1.5 hours of sleep the previous night, I was exhausted and continued to sleep even after Mike got back and his family trickled into the room to spend the day with us. At 3PM I went with Mike to go get radiation to his spine with Dr. Fairbanks, who was his original radiology oncologist in Spokane for his hip bone. It was a painful process for him to get radiation because he had to be lifted from his bed onto the radiation table and then lay in a flat position on a hard surface. It was hard for me to watch. Back in his room afterwards, the nurses put a new mattress on his bed that shifts air around to relieve pressure. Mike asked for oxygen again as well as an order for Ativan, which helped with the anxiety and frustration of not being able to breathe well. It put him to sleep right away and he was basically out of it until 9PM that night.

During that time, some of Sue’s family came to see Mike. It was great to see that his grandma and uncles and aunts and cousin were there in the waiting room for some time before gathering around Mike’s bed to pray while he slept through it all. But the prayers started to give me anxiety. They revolved around things like, “If it’s your will, God, take Mike home,” and “Welcome Mike into heaven, Lord.” I understood this perspective, but it wasn’t the Biblical perspective that Mike and I had chosen to take. We were hanging onto the perspective that all things were possible for those who believe. I started to get flushed and panicky. After everyone said what they had to say, I threw in, “and we know that all things are possible and God is able to do exceedingly abundantly above all that we ask.” Everyone nodded and “Amen-ed” in support but they probably thought I was nuts for still thinking Mike was going to be miraculously healed.

That evening the nurse let me know I could pick between two suites at the end of the hall that had opened up and were available for our family. I chose room number 1120 and moved all of our stuff down there, including my little rolling twin sized bed that was a couple inches off the ground. The new room was huge and probably meant for two patients since there were two hospital beds and TVs, but we had it all to ourselves. Mike woke up for a little while late that night, confused about where we were since the room looked different, then we watched X Factor. Tom and Sue slept in the other hospital bed and Trisha lined up chairs in the room and slept across those. Mike woke up a few times throughout the night wanting a drink or to change positions. Trisha helped me clean him up and change his bedding during the night. I was able to sleep a little better knowing I had other people there throughout the night with us.

The following morning, September 23rd, Mike was feeling a bit panicky because he couldn’t breathe so they gave him more Ativan which just put him to sleep. Dr. Nichols stopped by and agreed to give Mike some IV albumin, a protein, to help draw fluid out of his limbs and into his blood, and then a diuretic to hopefully eliminate some of that fluid in the urine. I think she was just mainly doing it to make me feel better. I wanted to do anything we could to make Mike more comfortable and prevent other complications in his body, because, of course, he was going to be miraculously healed at any moment. Dr. Nichols also said the reason for Mike’s shortness of breath was his liver was so enlarged, it was compressing his lung space, and therefore they would have Dr. Fairbanks do a few radiation treatments to his liver in hopes of shrinking it down. One of Mike’s best friends, Jordan, came to visit and while he was in the room with Mike, I went in the hallway with Dr. Nichols and she gave me a pamphlet on “5 wishes” which were end of life decisions she wanted us to consider. She hugged me and told me how very sorry she was that this was happening, and how wonderful of a person she knew Mike was. I cried and cried as she held me and told me to never give up hope for a miracle. Then Jordan came out, undoubtedly shocked after seeing Mike, and hugged me while we both cried. After we pulled ourselves together, we went back in the room with Mike and Laura and sat and visited for a long time. Mike really wasn’t able to say anything to Jordan except a struggled whisper, “How’s it going, man?” It was nearly impossible for Mike to talk anymore. Occasionally he’d wake up and give a little smile or ask for water or signal for the bed to be angled up more to help him breathe better in a whispered word or two. He also had these little sponges on a stick that we’d soak in water and put up to his mouth to suck on because his mouth was so dry and he was so dehydrated. Sometimes he’d ask for chapstick on his lips.Jordan and Laura stepped out for a few minutes when Mike’s grandparents and aunt and uncle stopped by to see him. After Jordan and Laura came back, I called room service and ordered a salad with no tomatoes. Mike awoke for just a split second to say, “Tomatoes on the side.” I couldn’t help but laugh, and changed my order to tomatoes on the side to humor him, although, of course, he wouldn’t eat any of them. In our old life, Mike was my garbage disposal, finishing anything I couldn’t eat, not wasting a bite.

Mike’s other aunt and uncle stopped by, then after they had left and Jordan had left, we went down for radiation. When we came back, Mike’s brother-in-law Erik was there. Then Tom arrived with Mike’s uncle Chris who flew in from Whidbey Island, then Trisha and Dan and the kids, and then Tom’s other brother Wade, Mike’s aunt Jill, and cousin Adam. They spent most of their time in the waiting room, because Mike had a hard time with too much company. He got exhausted and irritable because he couldn’t talk and I think he also didn’t like people seeing him that way. But surprisingly, he told me he wanted to get in a wheelchair. After making sure I’d heard him correctly, I went and enlisted Tom, Dan, and Chris to help me get him in a wheelchair. It wasn’t the way it used to be. He couldn’t use a slide board and independently get himself into the chair with little assistance. His legs had no function at all. Under Chris’s direction, since he is an RN, the 3 men literally picked Mike up from a seated position and set him into the wheelchair. Mike had oxygen and IV tubes that had to be carefully maneuvered and pulled along with us. The nurse on duty walked into the room and immediately started to tell us it wasn’t a good idea. Chris jokingly told her to look the other way and proceeded to carry on with the operation. We wheeled Mike out into the waiting room to see everyone. Trisha had me go find Jessi out in the hallway because she was crying by herself. We talked and cried for a few minutes about Mike and I told her she has always had a special place in Mike’s heart because she’s the oldest. We joined everyone else in the waiting room to take a picture, and even in his condition, Mike still took the camera and figured out how to turn off the flash because the pictures were turning out too bright. But he was really drowsy and short of breath so I asked if he wanted to go back to bed and he said “yes” so Dan and Jessi pushed Mike’s wheelchair back to his room and the men helped return him to the hospital bed. That night Sue and Laura slept in the other hospital bed, Trisha across the chairs again, and Tom in a recliner. Throughout the night, Trisha occasionally pushed Mike’s PCA button for him so he didn’t wake up in pain and I didn’t have to wake up as much.

The next morning was Saturday, September 24th. We all slept in until a new oncologist showed up, since he was on duty for the weekend. I won’t name him, but he was incredibly unpleasant, uncaring, and offered no empathy or even friendliness. He asked us to all meet him in a little waiting room down the hall because he insisted we discuss end of life decisions. I understand the need to do this for legal reasons and so there is a plan in place before it’s too late. But the way he went about talking to us was incredibly insensitive. He brought up that Mike’s code status was currently listed as “full code,” meaning if he stopped breathing or his heart stopped, the hospital staff would be required to perform CPR and any other necessary measures to prevent death. For a normal healthy person, this makes sense, but from his perspective, Mike was on his deathbed and there was no point in trying to resuscitate him if he died naturally so he recommended against CPR, life support, and ventilators. He kept asking if he could write that order in his chart to change the code, but I insisted I wanted to talk to Mike about it first and go through the “five wishes” pamphlet that Dr. Nichols gave us. I was angry for a number of reasons. First of all, this doctor’s attitude was all wrong. He shouldn’t even be an oncologist if he can’t conjure a sense of empathy and a decent bedside manner. Secondly, this negativity of planning for death was going against my mentality that Mike would be miraculously healed, and lastly, his pushy attempt to force us to make Mike “No Code” was taking away from my time with him and I felt like this should be decisions Mike made, not ones we made for him. I just hadn’t had a chance where he was lucid enough to discuss it with me yet. In hindsight, of course it should have been done much earlier so Mike was coherent enough to talk about it and I understand the doctor’s eagerness to get it decided. The doctor kept pushing to get the code changed saying, “Things could go downhill really quickly. It could be a day from now, a week from now, even an hour from now.” I interrupted by standing up and saying through my tears, “Or like right now, and I’m wasting my time not being with him right now,” and I slammed the door behind me and hurried straight back to Mike’s room. My heart was pounding; I was crying and breathing hard. Mike was sleeping but I woke him as gently as I could, saying through my tears, “You wouldn’t want CPR would you?” He responded in a half sleep whisper, “I don’t think so.” I wrote on the paper that he wouldn’t want CPR, life support, or ventilation, but that he would want antibiotics, transfusions, and dialysis. I put the piece of paper in front of Mike and put a pen in his hand and he scribbled his signature, then since his uncle Chris was in the room with us, I had him sign as a witness. I don’t remember exactly how it went, but I think I walked up to the doctor and rudely handed him the signed paperwork and made some smart ass remark. Probably not my best moment.

Shortly thereafter, Dr. Fairbanks showed up to take Mike to radiation, calling himself “the transport.” Uncle Chris, Tom, Sue, and I all went with them to radiation but as soon as we had Mike on the radiation table, he was in too much pain to lie flat and he couldn’t breathe well enough. Mike was often asking to sit the bed up more because it seemed to help him breathe better. This was one of the most painful moments I can remember because Mike seemed to panic from the pain and inability to breathe. Uncle Chris ran to get an oxygen mask for him and Mike was holding both mine and Sue’s hands so tight from the pain, we both started bawling. Dr. Fairbanks ran and got Mike ice chips and water and was feeding him ice chips. That’s when you know you have a great doctor. He was there on a Saturday, with no support staff to give Mike radiation, so he came as the transport person and also fed Mike ice chips because his mouth was so dry. Mike asked the doctor if we could postpone the radiation because it was so painful to lie there and Dr. Fairbanks said he would work on a plan to perform the radiation later with Mike in a seated position. We all lifted Mike back to his hospital bed and felt a huge relief to have him more comfortable.

When we got back to our room, someone had accidentally hit a code button and there were tons of people in our room trying to figure out how to turn it off. There was a lot of commotion and noise, and I realized that my mom and little brother were there. My little brother was crying after seeing Mike and all the panic in the room with the alarm going off. After it was turned off and things settled down, my mom came to see Mike and through tears, told him not to worry about trying to talk. She just wanted to tell him that when he married her daughter, she knew she’d never have to worry about me again because she knew he’d take care of me and that he was the best son-in-law there ever was. It felt like my heart was being physically ripped out of my chest. I hugged my mom and brother goodbye and they left.

Mike’s other uncle, Jimbo came and visited him. Mike was able to muster a couple smiles but was unable to say anything. He was exhausted and just wanted to sleep after the pain of radiation and all the commotion in the room. My best friend showed up, beautiful and pregnant, only 3 weeks away from her due date. She hugged me outside the room for the longest time and cried with me, saying as long as she wasn’t in labor, she’d drop everything at any moment to come see me if I needed her.

Throughout all this, I’d stayed in touch with the pastor who had been something of a spiritual mentor to us during Mike’s cancer battle. He was the one who’d baptized us and encouraged me to believe and expect healing for Mike. He was there all of a sudden, probably because I’d told him I needed him to come. I needed someone who shared my same conviction for Mike’s healing to pray and be there. I felt like I needed to utilize every resource possible to make sure Mike had the best chance possible. We were alone in the room with Mike, when the pastor started praying in tongues. Only the second time I’d heard such a thing, it was foreign and confusing, and I still don’t understand it or know if I believe in it. But at the time, I felt so much hope and spiritual power in that room. He paused for a moment while a nurse came in and administered more Ativan and then resumed praying and laying on of hands after she’d left. I had to turn other people away who tried to come in, and I felt badly about it, but I felt like this moment was important and essential. Finally, we agreed we’d taken up enough time and the pastor should go. Everyone had been waiting in the waiting room, so I explained that the pastor has a healing ministry and deals a lot in faith healing, and that was why he was here.

A while later, Mike insisted, “Get me up.” After asking a series of yes or no questions, I determined Mike wanted to get in his wheelchair, so four of the men helped pick him up and get him situated in the chair. Mike didn’t want to be wheeled around; he just wanted to sit there. So I opened the blinds for him and he sat there, half asleep, and labored to breathe. Dan stayed with us and sat quietly, then said, “Jessi says she loves you, Mike.” Mike whispered back, “Tell her I love her too.” Soon he wanted back in bed, so everyone came in and helped move him back. Mike went to radiation again later that evening and Dr. Fairbanks had rigged it up so he had an angled board to sit back against. He basically slept through radiation but kept reaching up in his sleep and pulling his oxygen mask down so it was delaying the radiation because he needed to hold still. I had to go in there and switch it out for a nasal cannula and jokingly told him, “You need to be good and keep it in there.” Dr. Fairbanks eventually got the radiation done. At this point, I don’t even remember what he was radiating. I assume it was his liver to shrink it so he could breathe and have more comfort, since we were told his liver was more than twice the size of a normal liver.

That night we all stayed the night except for Dan, who went home to stay with Griffey. The rest of us took shifts waking up for certain periods of time, although I typically had to get up at some point during each shift because Mike would start whispering, “Hun!” urgently whenever he needed something. He’d ask to be leaned forward then he’d urgently whisper, “Put me down!” I think he was just desperate to breathe better and he wanted to try different positions that never really worked. We’d offer him ice chips, sips of water, the wet sponge to suck on, and chapstick. Sometimes he’d nod that he wanted something, then when you put it up to his mouth, he’d sharply turn his head away and refuse it. It was so hard to communicate, sometimes we’d just keep guessing what he wanted and he’d shake his head in frustration, and I’d just say, “I’m so sorry, baby, I just can’t understand you.” It was that day that he last whispered, “I love you too,” after I said it to him when we were alone for a few a minutes.

Sunday, September 25th, I was awoken by Griffey jumping on me in my little bed on the floor. Dan must have brought him back with him. A bit later, that hideous doctor that we didn’t like stopped by and said that Mike’s potassium levels were too high and asked if we wanted him to receive sodium bicarbonate and insulin to bring it back down, although it was obvious he was trying to discourage us from doing anything. We all said yes, we wanted that ordered. Mike seemed a bit more agitated and frustrated that day. And people were constantly coming and going. At one point, it was just me, Trisha, and Laura in the room. Mike was frustrated and wanted to sit up so I sat him forward in bed. He was trying to say something that we couldn’t understand. Laura said, “Did you say ‘leave me alone?’” Mike reached up and pulled out his bottom lip to help himself speak and clearly whispered, “Let me go.” We were all a bit stunned and saddened, and kind of looked at each other like, did he really just say what I think he said? Had we been saying things while we thought he was asleep that prompted this? Was he tired of us fussing over prolonging his life and hoping for a miracle? He had nothing more to say after that. And we all just sat in stunned silence.

Tom, Sue, Dan, uncle Chris, and I went with Mike to radiation that afternoon. He was a bit more uncomfortable this time. Dr. Fairbanks said tomorrow would be his last treatment and then Dr. Nichols wanted to get started with his chemotherapy regimen. Looking back, could they have been just making that up? They’ve seen enough cancer patients to know when the end is near. Mike wasn’t well enough to handle chemotherapy. But we thought it was hopeful and it made us feel like there was a plan in place. We all thanked Dr. Fairbanks for all he’d done for Mike. That was the last time we saw him.That evening Mike was growing increasingly agitated. He was moving his head back and forth from side to side and his face was contorted in pain. Tom was on one side and I was on the other and we were holding his hands. Sometimes he’d squeeze them in pain; other times he would rip his hands away from us. A new nurse came on duty that evening named Jennifer. She was incredibly sweet and we felt really lucky to have her. She increased Mike’s pain medication as well as his Ativan dose so he could relax. Uncle Chris came in and played some music for Mike, held his hands, and told Mike how much he loved him. After around 9pm, Chris left and Laura left. Mike was finally resting comfortably, taking slow, shallow breaths far apart. The nurse promised she would come in and give Mike more Ativan frequently so he could rest and we could all get some rest as well. She was such a blessing. Despite the fact that Mike was asleep, his eyes remained mostly open and his mouth open and extremely dry and chapped from dehydration. We all slept soundly that night. There was one point when I thought I heard Mike wheezing or gasping for breath so I sat up suddenly in bed and looked over at him, but his chest was still moving with each breath like normal so I went back to sleep. Tom, Sue, Trisha, Griffey and I slept better than we had in a long time thanks to the nurse who promised to keep a constant watch on Mike all night. But at 2:20 AM, she woke us up.