Sunday, May 19, 2013

I Blame Cancer (and Maybe Randy Johnson) for My Father's Death

I posted this on Bottom of the Barrel a year ago and figured I would re-post it here since my personal blog is a more appropriate place for this type of writing. I'm not big on re-posting something I have previously written, but figured I would make an exception today.

My father passed away 9 years ago today at the age of 55. He died of a very aggressive form of prostate cancer. Prior to him being diagnosed, the only thing I knew about prostate cancer is it seemed like a nicer way of saying “ass cancer.” Clearly I was way off on what prostate cancer was and where the hell the prostate was exactly located. Of course I also thought the word “prejudice” was spelled “pregidous” until I was 12 years old. My 6th grade paper on Martin Luther King, Jr. was probably a great source of laughter among the teachers at my school. I found out my freshman year of college that he was diagnosed with this type of cancer when my sister called me in my dorm room and said my parents were going to call me and tell me some bad news. My sister then told me the bad news. She decided to tell me before they could get to me because she knows my mother and father always found a way to deliver bad news in the worst way possible. Generally, my parents’ way of breaking bad news to me was saying something like, “I know you hate going to West Virginia for Thanksgiving, so we have good news! You don’t have to go to West Virginia for Thanksgiving anymore because your grandfather died!” Maybe that’s just the way it would have sounded to me.

Let me go down a rabbit hole really quickly and allow me to explain this better. A few years after my father’s diagnosis (that’s what we called it because it sounded better than “was told he was going to die sooner than he thought he would and it wasn’t going to be of natural causes”) my parents had discussed with me the idea of putting to sleep the dog I had since I was five years old. He was old and could barely walk. It didn’t help our “new” family dog took great pride in knocking him over like a bowling pin at every opportunity. When my parents and I had this conversation, I requested they call me and I would come home from college to say my last goodbyes to my nearly-lifelong pet when they made this decision. I only reiterated I wanted it to happen this way probably five times. Naturally, they decided to go ahead and put him to sleep two weeks after this conversation and NOT NOTIFY ME AT ALL. I got no call saying they were taking him to the hospital, no one calling to ask if I want him to bark at me one last time, asking whether I prefer they cremate him or bury him in the backyard…nothing. So 24 hours after the dastardly deed was done, my mother calls me on my cell phone and asks to speak to my roommate while we are at a party. She tells him they put my dog to sleep and to break the news to me tomorrow after we get back from the party. Anyway, my roommate immediately told me they had put my dog to sleep and I proceeded to have a conversation with my parents about the appropriate way to break bad news to a person.

This is why my sister called me regarding my father's bad news first before my parents could find a way to make this already bad news even worse. For all I know they would have called in a bomb threat to my dorm so I could see the bad news along with everyone else plastered on the side of a blimp hovering over the Appalachian mountains. I put nothing past them in their inability to deliver bad news appropriately.

So I am told by my sister that my parents are going to call me and tell me the bad news, which did happen maybe five minutes after I hung up with her. My dad was very positive about his diagnosis and said it wasn’t known if it had spread or not but the doctors knew it was malignant. He said he had known the doctors found the tumor during Christmas three weeks earlier, but he didn’t want us to worry until we got a full diagnosis about whether it had spread to other parts of his body or not. I’m not sure how he and my mom got through Christmas keeping this news to themselves. I was obviously worried after speaking with my father, but optimistic it was caught in time since my father had gotten his PSA checked just six months prior. A week or so after the original bad news, I received another phone call from dad saying the cancer had spread to three places in his body, but he said there was a possibility they could do surgery and remove the cancer. That sounded great. There’s still a chance all would be well. Still feeling somewhat positive. Another week or so later we find out surgery isn’t a possibility because the cancer was in the bone. I’m not a doctor, but I’m pretty sure chopping into a patient’s bones to remove cancer is a highly dangerous medical procedure. This was it. This was the final answer. There wasn't anything the doctors could do to stop the growth on a permanent basis. He was given 5-10 years to live. He lived for 5 years and 4 months.

It’s a funny thing, as I am sure many other people can attest to, how a terminal prognosis works. Once the initial shock of the prognosis wears off, the person with the terminal illness becomes the voice of reason and everyone else around him/her starts freaking the fuck out. Life becomes this ticking clock where you know there is a budgeted time left over, but you don’t know how much time has been budgeted. Sure, life is permanently that way, but it’s different when it is someone you love who has that ticking clock on their life and you try to fit everything you can into an uncertain amount of time. You think of all the things your parent will never participate in that will be big deals in your life. That’s how it selfishly worked for me. It is selfish, but I thought about these things. I thought he won’t see me get married probably (which he didn’t), he won’t see my sister get married (which he won't), he won’t meet his grandchildren (which he didn’t), and my mom will be a widow (which she is). All of a sudden your life becomes a countdown of sorts until something you know will happen, but really don't want to happen, actually does occur. It’s a very bizarre feeling and I know I am not the only one to ever experience this.

After the initial prognosis, we started going down the list of things he also wanted to do, but never got a chance to. I guess we’d call it a bucket list. My family went on a cruise, he traveled with my mom a lot and just generally got a much healthier outlook about life. It’s funny how that works too. Once he saw the end coming he was able to throw out all the other crap that most healthy people spend most of their life worrying about. It becomes sort of a “I know I’m going to die, so I really don’t give a crap” outlook on life. I think it liberated him in some ways to be able to focus on what was important. Another ironic part is he looked healthier than ever the first 1-2 years after his cancer diagnosis. He used to work out like crazy when healthy and he was in good shape, but probably too skinny and wiry for his own good because he didn’t have time to eat enough to properly maintain the workout he was keeping up. So after he was diagnosed with cancer he gained some weight, worked out less and looked a lot healthier, despite the fact he was dying of cancer.

The first couple of years weren’t so bad. I say that as a person who didn’t have terminal prostate cancer of course. I think he would agree, especially when compared to the last few years of his life. He got tired more quickly and had some pain at times in the beginning, but he was still able to work. I committed myself to coming home every summer from college to spend time with him, always mindful of that constant ticking clock which told me I didn’t have much time to see him. It’s that clock that was the worst for me. It was the intangible feeling THIS could be the last time for us to watch the MLB playoffs together, next time I see him he could have difficulty getting up the stairs or he would have trouble doing something he has always been able to do.

I honestly would be lying if I thought I could give you a timeline for his cancer in a medical sense and how the cancer progressed medically. There are two reasons for this. The first is I was away at college and he did not want me distracted. I wasn’t given complete information at all times other than being told how he felt. The second is I didn’t concern myself how the progression was going in a strictly medical sense. I wanted to know (a) how long he had left, (b) what the doctors had said at his recent appointment and (c) how he was feeling physically, emotionally, mentally. I don’t know the exact date he started chemotherapy, but I know how it made him feel, the effect it had on him, and when it stopped. Part of not knowing the minute details was a selfish desire in the hopes if I learned less about exactly what is happening, then it isn’t real. I was guilty of that. I was away at college and it was easy to compartmentalize it while I was worried about my grades.

There’s a magic number called a PSA, which stands for Prostate Specific Antigen. It tells the doctors how the cancer is growing and it can fluctuate even if you don’t have cancer. This is what I’ve been told. Basically PSA is relative for everyone and my father’s PSA stayed stable for two years. It didn’t go up for those two years, which was awesome. I would come home during the summer and he would be pretty normal, taking his medications and going to work. The problem is you don’t know how long this will last. Every doctor’s visit could bring bad news of a PSA increase. What was irritating was the next doctor’s visit could tell us if the increase from the previous doctor’s visit was permanent or just a slight increase that will decrease over time. I’m a person who likes definitive answers and this didn’t sit well with me. I hate uncertainty. He dealt with it fine though. He was upbeat (at least to me) and all was well at the doctor’s visits. “Well” being a relative term of course. Dad retired in October 2001, got a nice retirement party and was happy to be able to do what he wanted all day once he retired. This was the most liberated I can remember him being. He woke up, had coffee, spent the day running errands with my mom and enjoying life. He took a photography class and became a good photographer, researched our family’s history and became a really knowledgeable Civil War buff. I was happy for him, but always knew there would come a day when things changed.

Things changed around Winter 2001. His PSA began to go up slightly and the doctor said the cancer was growing. It had begun metastasizing. Long story short, the response to this growth was going to be chemotherapy, which is basically poisoning the human body to kill the cancer. This was the answer to combating the metastasis. I hated this answer. To me, this was like complaining of your arm hurting for a few days and the solution to be cutting off your arm. I saw chemotherapy as what happens when a terminally ill cancer patient doesn’t have any other options left over and doctors are just buying time and making the patient comfortable until death occurs. Maybe that was my non-medical expert opinion of it. This was the beginning of the end and we all knew it. He was given 5-10 years and it had been less than three years. That meant he would have to undergo chemotherapy for almost two years possibly even to meet the five year mark for survival. I was thinking the 5 year mark is where things would start going downhill. Damn me for being an optimist.

So Dad would go to chemo and then come back absolutely exhausted. It was around the beginning of 2002 that I started to see small signs of where this was ultimately headed. He started calling me the wrong person’s name a little more frequently. He called me by his twin brother’s name occasionally, but it got worse around this time. He referred to me as “Dad” (his father was still alive at this point) or even called me by my sister’s name. I’ve gotten called a girl’s name a few times in my life, but I never thought my father would be the one doing it. He did not make this mistake overly frequently, but it became noticeable. He grew tired (as well he should) doing everyday activities and he had to hire someone to take care of the lawn since he didn’t have the energy to do it. He and I always took care of the lawn together and he was adamant that no one was going to take care of his yard but him. Sure, our yard was mostly weeds with divots from me practicing golf, but it was our weeds and our divots. We mowed the weeds and forgot to replace the divots, that's how it was supposed to be. I knew that was a sort of turning point when he couldn’t do yardwork anymore. It was hard to see and I probably didn’t come home as often as I could/should from college. It wasn’t because I didn’t love him or didn’t want to be with him. I got depressed going home to see my family. I got excited to come home, then got depressed while I was there. I spent the summer after undergraduate graduation before graduate school renting an apartment at Appalachian State and basically having the time of my life. I was running away though. I knew it at the time too. My dad always claimed to understand when I spent a weekend at home that summer and then went back to the mountains even though I had nowhere specific to be.

I wasn’t a bad son and didn’t treat anyone poorly, but while my mom worked that summer taking my father to chemotherapy and my sister spent time with him, I wasn’t there as much. I’m still not sure if I feel guilt about this or not. The end didn’t scare me. It was the lead-up to the end that scared me. Just as you take joy in watching your child’s first step, first word, and the slow progressions of that child becoming more and more mature and adult-like as he/she ages, the very opposite of this progression is devastating and crippling in some ways. The man who used to play me at one-on-one basketball and throw the baseball with me in the front yard now needed a ramp instead of stairs to get up on the porch and couldn’t drive a manual transmission car anymore. Yeah, I knew this would happen at some point, but he was barely 50 years old and I had just gotten out of college. It felt like this was all happening a bit too early. I couldn’t see these things on a daily basis.

I recall coming home from school one weekend in Fall 2003. My mom had been mentioning about how my father would always talk to “Sam” while they were both undergoing chemotherapy. I had heard this “Sam” guys name from my dad a few times and had frankly paid enough attention to know the guy’s name, but not enough attention to delve further. My father’s best friend’s was named Sam and he had brain cancer, so I thought at first maybe it was that Sam. Anyway, that one weekend when I came home my mom informed me that “Sam” was Sam Mills, ex-Carolina Panthers linebacker and current coach for the Panthers (he sent my family a card after my father passed away and took the time to write something personal in it. Sam Mills was just a good guy). Sam Mills had recently been diagnosed with intestinal cancer. His prognosis was grim, much like my father's prognosis. While my mom wanted to talk about Sam’s personal life, I was thrilled he got to see one of my favorite Panthers players (while in chemotherapy…I was thrilled to know my father could attend chemo with Sam Mills. It sounds insensitive to think and write down) and started peppering my dad with questions about the current season from Sam Mills' point of view, none of which he could answer. You are sitting in a room with Sam Mills, why aren’t you asking him questions about the current team, about his experiences in the NFL, or pretty much anything sports-related? The idea was unfathomable to me.

My father explained to me they had never discussed football once while at chemotherapy. They always talked about their respective experience with cancer, life in general, and about their families. Sam Mills was an NFL position coach (Linebackers coach at the time for Carolina) and my dad didn’t talk about the current season (in which Carolina was eventually headed to the Super Bowl) or his career with him? Sam Mills? The same passionate guy I saw on the field for several years with Carolina and New Orleans didn’t bring this up? My dad never really explained to me, but I figured out pretty quickly why they never discussed football or Mills’ career. It wasn’t important really. What was important was coming back to chemo the next week and the week after that and the week after that and seeing the same people at the same time on a weekly basis. Monotony and repetition became a form of progress. If you are back the next week, that means you are winning the battle at that point and that’s all that matters. You are present. I remember people used to tell my father it was good to see him and he always responded with, “It’s good to be seen."

By Winter 2004, that’s all that mattered to him, just being seen. The chemotherapy wasn’t working as much anymore. He missed the second half of the Carolina-New England Super Bowl due to physical complications from the chemotherapy during the week. He no longer responded within a day or so to my emails about possible job opportunities I found. It was decided by his doctors that continuing with chemotherapy was probably going to be counterproductive at this point. Ultimately though it was my dad’s call to stop the chemotherapy. The cancer was growing and wasn’t going to stop. He was tired and didn’t want to deal with chemotherapy anymore. At this point he no longer could go upstairs. His daily devotional still lays on his office desk bookmarked to March 2004, the date when he last made it upstairs to his office to read it. He had a hospital bed moved downstairs and moved around the house in a wheel chair. When I graduated from grad school in May 2004, he wasn’t able to attend my graduation because he couldn’t travel at that point. I came home May 10, 2004 after graduation and he could barely talk. Hospice was making visits nearly every day to help take care of him. Cancer had beaten him at this point. We all knew that. He knew that. Time was his enemy. We just had to be around in order to be with him.

May 18th was a Tuesday. We had dinner and my father could barely move his mouth at this point. He still could make faces at the prospect of eating my mom’s cooking though…a 24 year long running joke continued until the end. My father’s corny jokes became more creative at this point given the degree of difficulty in physically being able to make the joke. After dinner, my mother informed my sister and me that my father was hanging on because he thought he had to. That he was ready to die, but was waiting for some approval from us that we will be fine. I have no idea how she came upon this information. I don’t know if my father told my mother, if it was information understood between them in only a way people who have been married for 26 years can understand or the hospice nurse told my mom. Either way, it wasn’t happening. I wasn’t giving him permission to die. “Fuck that,” I said. “No way, I’m not giving him permission to go. I will absolutely not do that. I’m not ready.” That's a direct quote. My sister said something to the effect of, “But Ben, he is ready.” These words touched me so much, I stormed out of the room, went back downstairs, ignored further attempts to talk about it and finished watching Randy Johnson of the Arizona Diamondbacks throw a perfect game against the Braves with my dad somewhat focused on the game in front of the television in his wheelchair. Yeah, after a lifetime of watching Braves games together, the last game we saw together the Braves didn’t get a runner on-base.

Ultimately, at the end of the baseball game I saw where he was at physically. I was holding back words and preventing my father from achieving some sense of complete peace with his fate. I was doing this because I was more scared than he was. He needed to know we’d be fine without him and I needed to lie to him and say he had my permission to die. Well, he didn’t have my permission but I had to give it to him anyway. So I did. I went downstairs with the idea of speaking to him and giving him permission to die. I thought he would fight me when I gave him permission and he would say, “I’m not ready to go. I’ll be around next week.” Then he would have a bold look in his eye and I would know he was still ready to fight. Maybe that’s what I hoped. A part of me also thought he’d look at me and start yelling at me for wanting him dead. I could see him screaming at me, “I RAISED YOU AND NOW THINGS GET A LITTLE ROUGH, SO YOU ASK ME TO DIE SO YOU CAN MOVE ON? SCREW YOU! BY THE WAY, YOU WERE ADOPTED, WE LAUGHED AS WE PUT YOUR DOG TO SLEEP AND WE LOVED YOUR SISTER MORE THAN YOU!” Granted, he couldn’t speak too much at this point, but there was an outside chance this was the worst practical joke ever played on someone. It didn’t happen that way. He was ready to go and I spoke to him telling him it was okay to be ready. During the end of the conversation, he whispered to me, “I’m sorry for leaving you with the Braves.” One last joke about Randy Johnson’s perfect game and the Braves seeming ability to frustrate us at times. I told him it was fine, but I was lying. I preferred he did not leave me with the Braves. I went upstairs and spoke with my sister for an hour and eventually went to bed. I thought we’d have another week or so of my father around the house. It wasn't to be that way.

My father passed away the next morning at 10:34am. I was woken up and was told if I wanted to talk to him while he was still conscious I needed to do so now. So I got up and we stood by his hospital bed downstairs as he took his last few breaths. It was really sad and there was no last words really, he just slowly stopped breathing. When the funeral home came to get his body our family dog, Toby, refused to let them take my father’s body. He sat on my father’s legs and intermittently howled and barked at their attempts to take his body to the funeral home. Apparently Toby did not ever have the “It’s all right to die” conversation with my father and didn’t feel okay with it all. The funeral was planned by my father, so there wasn’t much my family had to do. It must be difficult to plan your own funeral and think the next time you see the casket you picked out, you won’t see it because you will be dead. That’s why I want to be cremated and have my ashes thrown in Kim Kardashian’s face at a social event. I figure I won’t have to be buried and can get my 15 minutes of fame after I die.

I got the opportunity to speak at my dad’s funeral. Honestly, I enjoyed it. It may sound weird, but the opportunity to speak about my father and what he meant to me was a chance I would never pass up. I spoke for 10 minutes. It didn’t feel that long and fortunately the organist did not start to play me off stage at the five minute mark. People tell me they could never speak at their parent’s funeral, but I wanted to talk for two hours. You see how much I write here. I love an audience, especially when discussing a topic close to my heart. I hated the circumstances, but I enjoyed sharing memories of my father.

Not to do much navel-gazing, but it isn’t the big events anymore where I miss him the most. You do, but for really big events I tend not to think about things like that because you are pretty busy. It is the small things you miss the most. This sounds stupid, but I really wish he could have seen the movie “Anchorman.” He would have loved that movie. I thought about him just a bit on my wedding day, not much more than that mostly because I was so focused on the ceremony going well, making sure I didn’t have to visit the restroom during the wedding (it’s the little things, but if I had to piss or crap during the wedding I can’t imagine how awkward/uncomfortable that would have been). As we all know, when life is going fast, there isn’t much time to think. The little reminders over the last 8 years are the hardest. I want him around to meet my wife, to help my mom decide between a shower door or shower curtain, to help her replace the front door and to see his grandson. If he were here I wouldn’t have to answer the question from a five year old about why his grandfather isn’t coming up to visit him with his grandmother. There's no solid answer in preparation for that question.

My mom has his office the exact same way that he left it. It doesn’t take an amateur psychologist to figure why she hasn’t packed his stuff up or cleaned the desk off. It actually sounds sad to think his stuff hasn’t been touched, but it is actually pretty disgusting. You’d be surprised at how much dust can accumulate over a few years. Even the spiders and cockroaches avoid his desk for fear their legs will get stuck in the film of dust laying over most of the objects still on his desk. The pens don’t write anymore, but still that desk is there with a book about dealing with impending death and the grief that goes along with it sitting on the left side. As far as I know, he’s the only one who ever read it. The bookcase has awkward pictures of me and my sister as we were growing up, pictures of our family, and plaques for all sorts of events/achievements. I’m not sure how he could even do any work in his office without laughing at the picture of me as a late blooming 15 year old with spots of acne on my face. Perhaps he got his laughs in when I wasn’t looking. Still, the desk sits there as a dusty memorial of sorts.

My father and I used to watch as many Braves games together as possible. He would get home from work and I would ask him if he was going to be able to watch the Braves game with me. It wasn’t a “thing” at the time, but in retrospect it sort of was a “thing.” I preferred to watch games with him more than I enjoyed watching them with my friends. Even to this day, sometimes it feels weird watching a Braves game without him around. You would think I’d be over that by now. He told me towards the end of his life he regretted we never had a beer together. Beer just tore his stomach apart by the time I got to legal drinking age and it was one of the drinks he had to avoid later in his life for that reason. I told him we did have a beer together when watching the Braves game, but just not in the literal sense. It was a terribly cheesy line, and I do realize that, but I only think of my really good lines after an hour or two of thinking about them some more.

Even 8 years after his death, I feel silly for still missing him. He’s been gone so long, so much has happened. Everyone’s moved on but you. At a certain point you tell yourself you should stop thinking about it. It sounds reasonable in theory, but hard to do in practice. When NC State made the Sweet Sixteen this year, I couldn’t help but think how excited that would have made dad. He would love Lorenzo Brown and C.J. Leslie, while being petrified Mark Gottfried was in some way cheating or working around NCAA rules to bring in his great 2012 recruiting class. We used to talk sports a fair amount and even to this day I see a sports story and think “Man, I wish I could talk about that with my dad.” Sports have tied us together permanently in that way. I will think of him during a sporting event and wonder what he would have thought.

My dad wasn’t my best friend. He was my father and of course I think he was awesome. There are many quirky/funny stories I could tell you about him, but 90% of people think that their dad is awesome and have similar stories. That’s why I will spare you these stories. I’m not Bill Simmons. I didn’t call my father after every victory or defeat waiting for him to say something funny so I can tell everyone. There’s nothing wrong with doing this, of course. He spent most of my youth working hard, I spent much of my teen years wanting to be away from any parental oversight, and I spent most of the years he had cancer in college away from home. We did play golf together quite frequently throughout college and when I was younger. So we did play sports and attend sports together. We attended Game 3 of the 1993 Conference Semifinals between the Hornets and Knicks. It was a double overtime game and probably rates as one of my top sporting events attended. It definitely rates as the loudest crowd I have ever heard live at a sporting event. I saw a replay of the game on NBA TV a few months ago and just couldn’t stop watching. While watching the game on television I kept thinking this is what cancer robbed me of, while also having a great memory of being there with my father. This is the time we would both have had to attend these sporting events. I’m out of college and he would be retired. Would we attend a bunch of sporting events together? I don’t know. It’s entirely possible, but I wish the option was still there.

I hate prostate cancer. I hate it with a passion. No one really likes cancer, so that sounds obvious. I am tied to prostate cancer in a way though. The odds of me getting prostate cancer are really, really high. My dad had it, his twin brother had it, and their father had it. Only my father died from it. So I have a good chance of surviving it if caught early enough. I am having my PSA checked every two years until I’m 40, even though my doctor says this is overkill. It doesn’t matter to me. If I am unlucky enough to receive a prostate cancer diagnosis at some point in my life though I am going to absolutely kick its ass. I’m going to kick its ass for my father, for myself, for my wife, for my sister and my mother. I will retire with my wife, meet my grandchildren, and talk sports with them until they are tired of talking to me or my mind starts to go and I become convinced Brian McCann was a pitcher. I couldn’t do anything for my father in helping him beat the disease, but I’m going to ensure it won’t defeat me the way it defeated him. This is the best way I know to honor him, knowing I was able to do anything and everything that cancer robbed him of participating in with us. I’ll take my children and grandchildren to a game and have a beer with them. Maybe I’ll even buy an extra one.

2 comments:

  1. Inspirational and moving. Appreciated the comparison to Simmons, because you were spot on with that, and you really do have a way of relating to people without drowning them in boring, samey stories that everyone has about their own parents. Not that it matters as this is more a personal piece, but still, great work.

    ReplyDelete
    Replies
    1. Frank, thanks. I try to relate to people boring people. Most people love their parents, even if they have issues with them at the same time. It's a personal story and my story is really more of the opportunities I have missed out on as opposed to the opportunities we got. It's unfortunate, but it's life I guess.

      Delete