Be kind, for everyone you meet is fighting a hard battle. --Plato
It's 3:52 am. I can't sleep. I couldn't sleep when I laid down, either, but my brain's been so heavy these last several days that I couldn't keep it off of the pillow. I can't stop thinking about what life was like ten years ago. So I wanted to write about it.
Ten years ago I couldn't sleep either. At 3:52 am, I was sitting in my father's hospital room on 7SW at Via Cristi Hospital in Wichita with my mother. We had a sort of apartment in town but tonight she was in the rubber-covered recliner and I was on the rubber-covered chair that would fold out into a "twin bed". In the nine months that we'd been there, this was my second all-nighter spent with him. The time before that was last night when he started to need constant attention. Things went from "Fine, except for, you know, the leukemia part," to "What the hell has happened?" in a matter of days. I did not believe that he could die.
I always felt sort of guilty for not having a terribly traumatic cancer story. Some would argue that heartily but I know that my experience was not as terrible as some have been. You know, he really only spent one day throwing up--and that had nothing to do with radiation and chemo as much as it had to do with the fact that he had an allergic reaction to a painkiller that they gave him to combat the "uncomfortable side effects" of chemotherapy. That was one day out of a nine month battle. Many fight cancer for years--even decades. On his worst days he was weak and would say things to me like, "You know I could die, right? I know it's not going to but I don't want you to be unprepared for that if it does happen." One day as I left the hospital to go back to our apartment, I said, "You know I could die out there, right? There's a meth house directly across the street from our apartment." Fun fact, that did not make him feel more comfortable. Life lesson: don't tell your dad that you live in the middle of crack-alley if there is nothing that he can do about it. But he did stop telling me that he could die. I really, truly, did not believe he could die.
So he had a heart-attack in January of 2001. That was scary enough. I was 17 and the phone rang in the middle of the night and we were all too asleep to hear it. But as I was running downstairs, a woman was leaving a message on our machine. She was the overnight desk-clerk at the Red Roof Inn in Salina. My dad was staying there because his work was out of Salina but he traveled all over Kansas so we all lived in Stafford, still. There was, what? A two hour drive between here and there? On the message, she was very calm and asked that we call her back immediately. After she left the message, she hung up and called back immediately. I answered the phone but she wouldn't talk to me--she wanted my mom who was, by then, running into the dining room. She said that he'd had a heart attack and asked her to call 911 and then call us. She did those things and we got into the car and drove to Salina. Those whole two hours, I was picturing what our life would be like without him. I believed that he would die before we reached him. Alone. In a strange hospital bed.
But we got there and he seemed fine. You know, except for the heart attack, part. After a few days in the hospital, they discovered that he was diabetic. And that was when, I believed, our lives changed. He had a serious but manageable illness. We would get used to seeing things like syringes and little vials of insulin and alcohol pads and we would get used to a low-fat, low-sugar diet. And we would like it.
So armed with our new information about how to care for a person who has just had a heart attack and how to care for a person with diabetes, we went home. Happy and with a new zest for life. People from the church brought us meals that we couldn't serve to him but it was the thought that counted. The thought was so kind. Really, my dad was a beloved man. I think that most people who met him liked him instantly. I can't remember a whole lot of pre-cancer Dad but I remember that he could sing--and people loved that. I remember that he prayed with gusto. By now I can remember, without guilt, that he was also just a person with a good many flaws.
So, he was getting better and we were getting in the routine of finding a new normal and after he'd been home for about four days, he woke up in the night and couldn't move. He
could move, the tiniest bit. Enough to get to the car so that Mom could drive him to the hospital in Pratt. They didn't even wake us up or leave a note. Mom called the house in the morning and told us what was going on. She said he was moving slowly and weak to the point of concern. She said that when they got him to the hospital, they tried to draw his blood but it was as thick as molasses. They had some ideas about what it could be but until they did some more tests, they wouldn't know for sure. She didn't tell me what those ideas were but I knew that a few years ago a girl in my school had leukemia and her blood cells multiplied rapidly which made it thick. "Like molasses." I didn't share my theory with my younger brother and sister. I just told them that they took Dad back to the hospital because he was feeling weak and they were running tests.
I don't remember what happened next, how we got into the speeding mini-van with my parents but suddenly we were all driving to Wichita.
In the car I was still wondering what it could be, feeling the sound of my theory in my head. I didn't know much and this was still in the days of dial-up so it's not like it even occurred to me to Google anything at all. My dad pulled out his cell phone (something that was still a treasure to me--amazing that it even existed) and called his best friend, Greg. And that's when I heard him say, "they say it could be leukemia, Brother." And then he cried. And all of us in the car sat in silence and terror and the unknown. That couldn't have really been it, though. That was just a worst-case-scenario. Leukemia only happens to little girls. Not to my strong, robust, forty-four year old father. But it was.
Acute-Lymphatic Leukemia. This is not the kind of cancer that develops overtime. It is "acute" which was a word that I found confusing because when you first hear it you think, "the most adorable Lymphatic Leukemia that ever existed." That's when I learned that "acute" means "sharp," "fast," "vicious". All of his friends kept bringing him good news. They'd all say the same thing, "I looked it up on the internet and you've got really good odds!" Someone said, "if I had to choose any cancer in the whole world, I'd choose your cancer, Chuck." I didn't care about odds, though. That wasn't so important to me. I really didn't believe he could die. Also, I hated it when his friends would call him "Chuck". I have and uncle named Chuck--it is taken, please refer to him as "Charlie" as that is his name.
The doctor who would become his wonderful, regular (kinda dreamy) oncologist, checked his bone marrow as soon as we got there. Later I asked a nurse how they check someone's bone marrow. I shouldn't have done that. I thought that was the most heart breaking thing that I could imagine a person going through without pain killers. It's not. It's really not. But I was a kid. I was seventeen. And I didn't know that I'd see him go through radiation and spinal taps and more bone-marrow tests. I didn't know what a person was capable of at that point-- and even still it feels selfish to say it but--what I was capable of at that point.
Our new normal didn't feel like much of a challenge or an adjustment. I think it was because I never thought of it as "normal" I always kind of thought of it as something that we were doing, today, and then we'd go home tomorrow. And the next day we'd either go home or stay. Andrew and Sarah were younger than I was and they spent a lot of time staying with our pastor's family so that they could have some semblance of stability. Even still, I can't help but think of John and Becky as a type of personal, parental unit that exists for me. They were there before, during and after--constantly to the same degree which was in full. They already had five kids and they didn't mind the addition. Becky said, "after you have five, really? What's two more?" Sarah and Andrew were 14 and 12 or somewhere thereabouts. It's not like they weren't largely self-managing, anyway. My older brother had moved to McPherson to go to college. I remember feeling so strange that at the time when our family seemed most connected, most combatant, we were all in different places.
So that left Mom and Dad and me on the front lines. Let me tell you, the front line of cancer is by-and-large kind of boring. Except when it's not. I learned a lot of things. I learned which nurses were nice and which were not. I learned that they had an oven to keep the blankets in and I would sometimes sneak in there at night and take one for myself. I learned that the owner of a very large car dealership in Kansas was on the oncology floor. He didn't have cancer but he was terminal and this was the floor with the best staff. He bought new furniture and painted his room so that it didn't feel so much like a hospital. New, leather couches and rugs and lamps. After he died, they were donated to "the grieving room". I thought the concept of that room was quite sad but kind. I felt terrible any time that I saw someone in there. I wanted to open the door and say, "you know, sometimes I can't quite keep it together, either." And that would have been the most human thing to say. One day someone brought us a basket of cookies. Dad couldn't eat them and I didn't want to eat them in front of him so I decided to take them to the nurses station. But I saw an older woman in the grieving room. So I left a note and put the basket directly in front of the door. A few hours later there was a tag that read, "thank you" hanging on the door knob. I learned later that woman was the wife of the car dealership guy and that he had died. Life lesson: Be kind, for everyone you meet is fighting a hard battle. --Plato
I can't tell you about what happened when or anything like that. When you live in a hospital, the days all run together. I know that it started in February. It ended in October. And between Andrew and Sarah's birthdays in April, he was in remission. I remember that my friends Ellie and Tori would come to visit me at least once a week. They would take me out to bookstores or for coffee or once or twice to a fancy restaurant that played live jazz (even though we could only afford dessert) so that I could get out of the hospital. We'd sit around and talk about anything other than cancer and I needed all of that so much more than I knew at the time. At first I wondered, "they understand that my dad has freakin' cancer, right??" But then I realized that they knew that I needed to free my brain for just a few hours a week and let it breathe. I was so grateful to them. I pined for them when I was most lonely--mostly when I was driving back to our apartment after a long day at the hospital thinking, "I'm seventeen years old. I shouldn't be in this situation." But this is how life happens.
I remember that he started to smell differently. I remember that he started to age quickly. And by that, I don't mean that his face started to look wrinkly. In fact, I feel like he became a little more childish looking. His eyes got bluer--he'd quit smoking. By "age quickly" I mean that he started to wear hats--obviously because of his hair loss, and he lost weight so quickly that instead of buying belts he would wear suspenders. Suspenders. Suspenders and a panama hat. Suspenders and a panama hat and he suddenly loved cafeteria style restaurants--at 4:30 pm. He aged 30 years overnight. I was not embarrassed by that.
I remember that my dad suddenly had more friends than I was aware of. I mean, I knew he had a lot of friends but I'd never seen them all, essentially, at once. He had one friend who had been diagnosed with MS several years prior. This was a huge relief because he knew someone who had gone through--was still going through--something pretty stinking major and was still alive and happy and full of joy. "Profuse exuberance," was what he called it. My dad wanted to be like that.
He had big plans for after he was cured so when he went into remission after only a few months of fighting--which wasn't really fighting. We were all so confused, still, but satisfied to be finished. It was like when I was younger and I'd play Mortal Kombat with my brother and I would win by simply smashing the controller and seeing what would happen. That's what it felt like.
Remission! I thought that meant "cured". He came out to the waiting room after what was supposed to be a round of chemo and told us that the doctor said he was in remission. Strangers even clapped when they heard him say it. Naively, I felt a huge weight off my shoulders. He would still have to come back for frequent check-ups but he was in the clear! He was cured! Just like everyone said he would be. Just like I knew he would be. I really didn't believe he could die.
After a week or so of jubilation, he went for a follow-up and we ended up back in the hospital. Remission didn't last for long. Not with this bastard of a cancer, anyway. I began to think of Acute-Lymphatic Leukemia as a person and this person was kind of an a-hole. If this person came to a party, he would drink all of the beer and hit on your girlfriend before puking off the railing, onto someone's car. And then he would drive the wrong way down the interstate and not care that there were women and children in mini-vans. He will crash into an animal shelter and then get out and walk and in the morning he will text you, naked, from a stranger's back yard in a dog house, "wutz up!"
He
was doing pretty good by the end of the summer. You know, except
for the leukemia part. He wanted all of his kids in one place and he wanted to take us to the zoo. The staff at 7SW was not particularly thrilled with this idea but they let him do it anyway. We wheeled him around in a chair (like a wheel-chair at the zoo isn't demoralizing enough, the ones that the zoo provided looked way more like adult-sized strollers) and looked at animals. I got a picture from behind as my older brother stood at a railing talking to my dad in his chair. At the time, everyone said, you got a picture of the back of them--that's dumb. But it's on display in Adam's house right now and it's nice. I'm glad I took it. We don't have a lot of pictures of us with Dad. The one at the beginning of this post is the only one that I've got. Before we left the zoo, an elephant sneezed on my dad. My father, with the immune system of a premature baby--an African elephant sneezed
directly into his face. Sometimes I like to think that's what did it.
Anyway, that day at the zoo was really the last nice day of the summer.
After that, Autumn set in and I started to wonder if I'd be spending my
18th birthday in a hospital. I hoped not. I hoped that I could be home
with my friends but I didn't get my hopes up because after the zoo, he didn't really stay better. I don't remember the order of events. I remember that several weeks prior, they needed
to start radiation specifically to keep the cancer from spreading into
his spine which would lead to his brain which would lead to his
downfall. Despite their best efforts, that was exactly what happened. No
one knew that was happening and they kept it at bay until Mid-October.
They gave him treatments and x-rays and they kept a keen eye on it but one day something changed. He was my dad one day and the next day he didn't know me.
One evening, Ellie had driven me back to the hospital and came upstairs with me. My mom and my brother and the doctor were standing in the hallway discussing DNR's and "pulling the plug." Ellie seemed to grasp all of this and she hugged me and asked if I wanted her to stay. But I said no because even then, I didn't believe he could die. They said that the cancer had moved into the spine and quickly traveled to his brain.
One day we were at the zoo, the next day he looked at me--unaware of who I was. I could only imagine how scared he was when he
didn't know anything at all.
When he was awake, his conception of the situation would change from minute to minute--if he was lucky. He couldn't keep a grasp of anything for more than a few seconds really. He'd need to go to the bathroom and by the time he got out of bed, he'd forget why he stood up and he'd sit back down. My mom needed a shower and a little bit of a break during this time, so I was there with him. I read a magazine and when I saw him stand up and sit down a few times I asked him if he needed to go to the bathroom. He looked at me and said, "Nurse, I need to go to the bathroom." I stopped and we stared at one another and I can only imagine that I looked horrified. I was. I took him to the bathroom--reminding him the whole time of what we were doing because he would ask, often. For the rest of the day he called me "nurse" or "miss" or "why are you in my room" and that night, Mom and I both slept in the room and planned his funeral even though neither of us said the words. In a delirium of 1/3 asleep, 1/3 awake and 1/3 delirium, Dad started to mumble/hum/sing "I'll Fly Away."
The next morning, October 20th, I went to take a shower and drove right back. When I came into the room, I didn't look at Dad. I knew he wouldn't know who I was and I couldn't take it much longer. But he said, in such a deliciously childlike manner with the bluest blue eyes, "Hey! You're Libby! You're mine." And he smiled so big and so wide. And I looked back at him and I cried and I said, "I
am yours." And those were the last things we said to each other because by the time he blinked, he was gone again and I was happy with that. I was grateful for it.
In his confusion, he started pulling on tubes and wires. By 11:00 am, the nurses had to give him something that would make him sleep. I didn't know that "sleep" meant that he would slip into a coma and I'd never see him again. My Uncle Jerry and Aunt Judy came into the room while Dad slept. They told me about what he was like when he was younger and it made me fall in love with them. Giving me a gift like that. Our whole family must have already been at the hospital but I didn't see them. They were all in the waiting room. It must have been packed. At around 2:00, Andrew and I drove to a halfway point to pick up Sarah. Me and my twelve-year-old brother driving to pick up our sister so that she can see him before he dies. Truly the most surreal moment of my life.
By the time we got to the 7th floor, the entire family was there. Family. Friends. Everyone. The place was packed with people that I knew and I was confused. A few people handed me birthday cards and I remembered that my birthday would be the next day. But mostly people pushed me into my dad's room and said, "you need to see him." I didn't understand. I didn't know he had died. Andrew went in and ran back out. Sarah went in and ran back out. I went in and I don't remember what happened. All I remember was so many hands on me and screaming, "don't follow me!" And I went into the grieving room and I cried longer and harder and more shamelessly than I ever have since. More than anything I was angry. I did not believe that he could die and before anyone explained what had happened, I was pushed in to view his body. I was angry then but I'm not angry now. There's no right way to deal with this situation. Every single person in that place was heartbroken and weirded out and I can't blame them.
After several minutes of alone time, Arryn came in even though I told her to stay out. She held me and she cried with me. She'd been married to Adam for only a few months and her relationship with my parents wasn't exactly magical but she was still heartbroken and she knew what we all needed because she'd been through similar heartache and loss and she was going to give it to me whether I wanted it or not.
By the time we were leaving Wichita and heading back home, it was dark. Arryn and I drove and mostly it was quiet. I asked her to turn on some music and when she powered on the stereo,
this song played. And we chose it for his funeral. A group of people from the church also got together and played a very, very joyous rendition of I'll Fly Away.
The next day was my eighteenth birthday and I was at home surrounded by all of my friends--sort of like I'd hoped for.
I wanted to write this because I know that there are a lot of people who
don't know that part of me and they're too afraid to ask--or don't know if it's okay. It's okay. It really, really is. Talking about it is always better than ignoring it. There are also
a lot of people who were there for it and I wanted to tell it from my side, and give my gratitude and share my heart. But
mostly, it's been a whole decade and I remember, on that day, thinking,
"One day it will be ten years from now, will I even remember my dad
anymore?" And the truth is that I still think about him a dozen times a
day.
But after I write this I'll be happy to have a day packed
full of distraction. I'm not the type to take the day off to mourn because in all reality, it's not sad what happened. It's something that
happened that was sad at the time. My life is gorgeous and full and
full of love in ways that I am not sure they would be if everything
hadn't changed so much. Please don't take that to mean that I'm happy that my dad died--there couldn't be anything more inaccurate. I wish he was here. I wish he could see all of his grandkids and I wish that he could see how much his children love each other. I wish he could see that even my mom is happy and I really didn't know if she would be. But I know that a lot of the things that changed in me, happened as a direct result of the world-shift that occurred on that day. I am excited to live the life that I'm living right now.
I love you and I hope you have a wonderful day.
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| He was 28 in this picture. I'm turning 28, tomorrow. |
