“You did everything you could
Changing his diet, taking him to Texas. Pushing moffitt
It was too aggressive it was too fast you did not have years like with mom
Don’t tell yourself anything different because it was out of your hands”
Those are the words I typed to myself on January 29th as I was sitting in the backseat of my aunt’s van, behind my dad in the passenger seat. We were driving him to Moffitt for the last time. I knew even then this would be the last time. I didn’t think we were bringing him home after this. After almost a month of bringing him to Moffitt, never leaving him by himself, panicking, worrying, crippling anxiety, not sleeping, and pain he woke up that morning and told Lori, “I’m going to die today.”
The road to even just January 29th was a traumatic one. I’ve been trying to unpack it. I’ve been afraid to. So much stuff happened and I keep reliving it. Some moments more than others. Over and over again. It never stops. The crazy thing is that my dad was fine over Christmas. Walking, talking, driving. Except he started having issues with his hearing and balance. Even back then I knew it was the cancer. I thought the lesions we had seen that were small had grown in a short amount of time. We were hopeful. I told him this was the year we were going to get our motorcycle licenses. Our tattoos. It all went downhill so quickly it makes my head spin when I think about it now. The first real problem was when I was told to call him because he wasn’t being honest with me. The left side of his face became paralyzed. I begged, and cried, and pleaded with him to please go to the hospital. He refused. I told him I was already down one parent. He asked me not to be mad. But I was. I was mad. “What if you don’t wake up tomorrow?” “I will.” “Dad, this is probably a brain tumor.” “No, I’m fine.”
He went the next morning on January 4th because he woke up with a really bad headache. One of his brain lesions was bleeding. I kept trying to make myself get up and get dressed. I kept trying to tell myself to pull it together. I waited until John came home, or at least that’s what I kept telling myself I was stalling for. I wasn’t. I was terrified. I was terrified that this moment would solidify what I had been dreading since May. That we were now on the downhill slope with enough momentum that nothing could stop it. They took him off the blood thinner, hopeful that this would stop the brain bleed. Did you forget my dad had a lung clot too? Because I would forget all the time because more fires kept popping up. He was discharged the next day. When I spoke to him I thought he sounded off to me. He seemed confused and not as with it as he was the previous day. He mentioned that Lori was looking at him oddly because he was acting loopy. The left side face paralysis was beginning to affect his speech now.
January 8th my Dad’s face on the left side was not only paralyzed but swollen. After I saw him I was in full on panic crazy mode. We talked about alternative treatments. We talked about going to Mexico. In my head I was thinking of all the places I could take him. All of the places I wished I had taken my mom. I was reliving one traumatic experience while currently living in one. We were so terrified about going against the status quo with Moffitt that if we fucked it up now, that we had no chance. He wouldn’t qualify for treatment. It would basically be hands off from them and all on us. We hadn’t been giving the “there is nothing else to be done” speech yet. He still needed radiation. We couldn’t get him to take the correct amount of steroids at the correct time. He was in so much pain. “I almost feel like things are going to start spiraling soon and I don’t know how much of everything he really understands or processes or how important it is to just take the steroids like he is supposed to.” That’s what I wrote the same day to Steph. I was beginning to worry about him more because I could tell he was scared and confused and shutting down.
January 12th he went back to urgent care to get some pain medication. The headaches were so much worse now. On the way back to his house he received the call from Tampa General about his MRI results. We were 90% sure he misheard the tech. He didn’t ask the guy to repeat himself. He hung up and just went silent. We wouldn’t get confirmation of the results until we saw the radiation oncologist again at moffitt. That was the day we decided he can’t be left alone anymore. He couldn’t walk around the house without grabbing at the walls, counters, and doors. I was on watch and only slept when he slept. I woke up at any change in snoring, any movement I heard from his bedroom, anything my brain thought was a change I woke up. I had my alarm set for midnight and 4am just in case I dozed off because he needed to take the steroids. I had work the next day. How I ever got through this time while balancing work I’ll never really know.
January 13th. They confirmed my dad heard the technician correct. He has twenty-one lesions. Twenty-one. 20 fucking 1 lesions. Even thinking about it now all the breath leaves my lungs like I was punched. I helped him to the car and put my hand on his back. His back tumor was now bigger than a golf ball. He needed to get whole brain radiation. No mapping needed anymore because they were all over. We had to go back every day for a week starting the next day. I was so scared his memory was going to start to go. I was worried we wouldn’t have quality time left with him. His hearing was really impaired, and it was hard to understand him a lot of the time.
Now comes the extremely frustrating part. The number of hoops we had to jump through to get my dad pain medication was absolutely ridiculous. How Steph and I came out of this time without murdering someone is a miracle. My dad was in immense pain. Because you know. Twenty-one-goddamn lesions in his brain. The radiation oncologist was going to write a script for him for 2 pain medications. He’d send it to the onsite pharmacy. They closed before we could get there. Okay no problem, we’ll be back tomorrow. He had enough to get him through the night. We went the next day while my dad was getting radiation done. Keep in mind my dad was out of it, in pain, and had to use a wheelchair. The pharmacist tells us there is nothing in the system. I ask someone to please contact the doctor because my dad will have no pain medication if we leave here. The doctor is out and no one else can fill out a script for a narcotic. His last pain pill was given to him at 7 in the morning because we expected to have a refill in our hands that morning. His pain medication wears off after 4 hours. Steph spent all god damn morning on the phone. Someone else was able to send a script. They filled it at Moffitt after we asked them to fill it in Palm Harbor because his next appointment wasn’t until 5pm. No other pharmacy near us has the medication available to fill. The pharmacist had to call other pharmacies because everything in their system showed zero available. We were able to get our hands on the pain medication after the biggest, most ridiculous run around.
January 15th – the tumor on his back was now the size of my hand. He was only receiving whole brain radiation. No other treatment even though the cancer had been in other parts of his body. No infusions. No chemo. No targeted radiation. He could only walk with a walker at home. His legs were very weak. They stopped the infusions completely when he was put back on the high dose of steroids. That they prescribed. And didn’t put two and two together so the last time I took him for an infusion was the day they told us he couldn’t get it because of the steroids. That they prescribed. It took two people to get him into a car now. Before my dad’s radiation we were supposed to see the radiation oncologist. They brought us back into a room. We waited an HOUR. My dad was in so much pain. He wanted to go home. I wanted him to go home. He needed his radiation first. I overhear someone outside of the door say the doctor we were waiting for had left. I think Steph and I felt anger in every single square inch of our bodies. She went off. With every goddamn right. And thankfully her than me because I can’t stop myself from cursing usually. They were lucky we didn’t start throwing shit around in that exam room. I ran to the pharmacy while Steph explained our frustrations only to find out the pain medications were still an issue. Did you know insurance won’t cover it if you have it refilled before the next window? If you didn’t, you do now. But they will let you pay full price. Thanks. To top that day all off as if it wasn’t shitty enough. As we were driving home there was a very loud popping noise from the van and we thought Steph’s door had broken. It was fine. Just a piece of metal that had been driven over, and then stuck to the underside of the car. I’m pretty sure I looked up at the sky that night and gave it two middle fingers.
January 17th. We were told that if the radiation doesn’t work my dad was weeks left to live. If the radiation works and the cancer doesn’t spread aggressively, the best case scenario is two years. Two years feels like a lifetime now. It didn’t back then. Weeks felt like seconds. There was no way this thing wasn’t going to spread aggressively. I was preparing myself. We don’t get that lucky. Back then I knew I would be bringing in my 28th year without my dad. I knew Thanksgiving and Christmas would be my last with him. I felt like such an asshole for thinking that. I felt like I was giving up on him. But I wasn’t. I was trying to prepare myself for a gut-wrenching, hole in the universe loss again.
I was spending more time at my dad’s than at my own home. I would sometimes do full days to have a little break to pack a new bag before I would do a night. The nights I was able to go home to sleep weren’t really any better. I would wake up in the middle of the night crying. The nights I slept at my dad’s I had sleep paralysis every night. I was terrified that I would be having an episode and be unable to get to him in time. To make sure he was taking his pain medication on time. To make sure if he got up that I would be able to watch him in case he fell.
January 27th. And then he did fall. I tried to give him some semblance of normal by not hovering over him every second. He came out to grab something to drink. That’s fine. He had been doing it this whole time. Except this time he went to turn with the walker a little too quickly, lost his balance, and fell on the kitchen floor. This was the wrong time to figure out I was too short to lift him to standing. I was in a complete panic. “Kylie, grab a chair.” I have no idea what I would have done if my dad wasn’t able to think because I couldn’t. I was able to get him into a chair and he was able to stand from there. He went back into his room after telling me he loved me. I had a full blown panic attack after he got back into bed. I was not okay. I was so mad at myself. Normally I am good in a moment of crisis. I am able to think. I am able to not cry. I felt like I fucked up. I know now I didn’t. I was back to living in two simultaneous timelines. The one where I had to pick my mom up after she fell through our glass table in the living room. And now the one where for a split second I thought my dad was going to fall into the glass table in the kitchen.
The next day I took just an hour to get out and just cry or be or whatever I was going to do. I thought about going home, and at the last second turned to go to Phillippe park. I sat down on a bench by the water feeling super defeated and like a failure. And then a corgi ran down into the water. If you know nothing else about me, this is very important, because corgis are my favorite dog and I have dreamt of owning one for almost 10 years now. I watched it play and then when it was done the owner and the corgi walked up right in front of me and it came over to let me pet it. I took that 100% as a sign from my mom because I needed that so much that day. I think it was her that made me second guess my decision on where to go. I wasn’t even looking for a sign that day to tell me it was okay. But it happened. Lean into signs whenever you can. That moment was the only reason I felt okay that day.
January 29th. This was the day I wrote that note to myself. The day my dad woke up and said he was going to die. The day that I didn’t think he’d be coming home. My dad couldn’t really eat because of the paralysis. It was difficult for him to drink. He was in so much pain it reminded us of when this all started. They wouldn’t do a whole body CT. They only did a head CT with no contrast. The doctor said they weren’t necessary. They wouldn’t see any improvement from the radiation this soon. They were going to send him home less than 20 hours later. They were sending my dad home to die and we knew it. We insisted on a whole body scan. We insisted on a CT scan with contrast. No we are not leaving. We want to see the doctor. Also, he can’t eat. The nurse legitimately looked at us and said “oh, I forgot about him not being able to eat.” I swear I wish I was making this day up. I wish I could tell you it got easier. It didn’t. We kept pushing and they finally took him to get more scans. They were going to admit him.
Now here is the real fucking kicker. They would not go over the results with just Steph and I without the doctor. We had to wait. The scan they only did because we insisted. The scan they weren’t going to do. The scan we wanted because less than a year ago my dad had fluid build up with pain so off the charts he couldn’t speak that led to brain surgery. That scan and a resident who took a second look, and had the guts to come back to talk to us told us he had such bad fluid build up in his brain that he needed a permanent shunt. He told us he couldn’t speak to the rest of the scan, but that yes. Yes, that giant fucking tumor on his back was more than likely pressing on his spinal cord and contributing to the issues with his legs. The tumor that wasn’t brought up for months. The tumor we kept asking about, talking about, wondering about. They were going to SEND HIM HOME before this. I’m sorry to every person that doesn’t have people to advocate for them. If it was just my dad he would have been sent home. The only thing I can tell you is to fight. To push. Don’t you dare accept something that doesn’t feel right. My dad probably wouldn’t have made it another two days. They weren’t going to give my dad a full body CT until February 14th. He would not have been alive.
On January 30th I went to therapy. I told Molly and Cailin I thought I wasn’t bringing my dad home. If I did bring him home it was to be comfortable and there would be no more treatments. We said it would be a miracle if he made it another month with the way his labs were looking. I was waiting around for my dad to be cognitive enough to ask him questions. To ask him about his wishes. We were now having to write things down on a piece of paper because he couldn’t hear. I remember having to write down to ask him ‘If you code do you want them to try to bring you back?’. If you have kids, please put something together now. I can tell you no one should have to write that question on a piece of paper to ask you what your last wishes are, but especially not your kids.
January 31st after almost a full day at moffitt we took a little break to grab dinner. My brother was driving us back, annnnnd we got rear ended. Because that’s just the kind of year 2020 was turning into even at that point. Everyone was fine. Car was okay. I laughed about it so hard I thought Ty had thought I was losing my mind at this point.
February 3rd. This day was the day we knew it was over. It was the first time I felt we were told the honest narrative about my dad’s condition. It was the first time I couldn’t stop the tears. We were taking him home under hospice care. I’ll never forget the look on my dad’s face as he read what the doctor wrote. The radiation wasn’t working fast enough. The shunt was a permanent fix for an issue that was beyond our control now. He told me he would fight it if he could, but he wasn’t getting any better and he couldn’t do it anymore. I told him ‘I know’. He told me how unfair this was to me and Tyler. I told him it was unfair to him. I didn’t expect it to end like this. I didn’t expect less than a year. As much as I thought I was preparing myself for bad news it still knocked the wind out of me.
On February 4th my dad was discharged. I rode with him in the ambulance in May 2019, so it only felt right that I rode in the ambulance with him to go home.
We were able to let people know with enough time to fly down to say goodbye. It was a revolving door for those last couple of weeks. Lots of figuring out his medication combination so he was alert but not in pain. A lot of updating and notes and trying to figure everything out. A lot of feeling like we were so far out of our depth that we weren’t sure we were right. Feeling like we needed more help. Feeling like I was failing at every single aspect of my life. Feeling guilty about everything all the time. Running a half marathon we did not train for one bit. Because I know if my dad knew we didn’t go because we were so worried to leave him he would have been mad at us.
The night before he passed was tough. I held his hand and laid my head down on the bed and just remember thinking ‘let go, let go, let go, let go’ as his breathing changed. Steph and I decided to put Rush on in case he could still hear something, or in case he could feel the vibrations. We all were in a never ending rotation of the living room and his room. I remember a few days before telling everyone he was going to pass on leap day. No one really thought he would make it two more days. But he did. I held onto a moment he had when still alert. I walked in to ask how his pain was and he was talking to his best friend. I walked in just as he said “we did a lot of stupid shit” and he saw I had walked into the room as I smiled because that was only the sixth time I had heard him swear. He looked at me and back at his friend and said “but that was one of the good ones” and motioned to me.
He passed away in the morning of February 29th with Steph and Lori in the room with him. Tyler and I were out in the living room. Leave it to my dad to pass with the least amount of people in the house in more than 24 hours. But I think that’s what he wanted.
I took some time off this week because I knew it was going to be tough. I knew I wanted to get this all out of me. I put it off as long as I could. So if you have made it this far, thank you. If you started off reading my stuff because you were interested in my journey through grief, I’m sorry to say it is far from over. I never would have thought I would be getting hit with the one-two punch of losing both of my parents in a little more than 3 years. Or that I would lose them before I turned 28. I am not okay, but that is okay. It hurts and that’s okay too. You take the good with the bad. Even if the bad overshadows the good. You find those tiny moments of happiness and feel it. Really feel it. You love a little harder and laugh a little louder.
To everyone who stuck this out with me, thank you. To everyone who held my hand, made sure I ate, made sure to check on me, thank you.