UTAH WITHOUT MY KIDNEY
WRITTEN BY JOEY COSTANZO
PHOTOS BY SHAWN FENDER
I have cancer. I’m growing tired of that declaration. I even hate writing it; not because it makes me sad but because I believe it’s beginning to define my personality and I feel there is little I can do about it. Every night and every morning I can't escape dreadful realities that today could be the day that things go from bad to worse and I could be wrapping this journey up very soon. I hear my infant daughter cry out in the night and I remind myself, “I need to get up and hold her while I still can." Raising my first child in my current state can be perceived as tragic, but I think maybe it's a gift for both of us. She gets all of me. I know that I could expire soon so I can commit to her in a way I probably wouldn't if I wasn't so frightfully aware of my mortality. I don't necessarily fear dying, but I do fear leaving her and my wife behind. Part of that fear is rooted in the fact that I think so highly of myself that I cannot imagine my wife and child living a particularly wonderful life without me around. I can vividly and fairly accurately picture all my family and friends painfully mourning me everyday for the rest of their lives; lots of tattoos with my portrait and probably my name will be drawn on my loved ones backs, arms and buttocks. I was everyone's favorite person before I was diagnosed with cancer, but now? Holy shit am I lovable. I can’t be the only one that feels this way. I sit and observe other patients while in a cancer ward waiting room filled with pious geriatrics that are desperately fighting to stay alive. Why are they fighting so hard? What is a sickly 80 year old fighting for? What can they possibly think they are still contributing to their family? It appears that our ego doesn't deteriorate like our bodies. No matter how old we get, we cannot shake our feelings of profound significance. Now I have a lot of favorite people but I am by far my most favorite. I think every thought I have is a gem, hence me writing a public journal, and why wouldn’t you want to read it? I am fucking awesome. That’s what makes saying goodbye so hard. I don't fear the afterlife. In fact, I think what happens to us after we die will be quite amazing and I look forward to that part. Again, the hardest part of imagining my departure is leaving my wife and kid. I believe I'll still be around in some type of obscure spirit, but I can't expect them to be constantly paying attention to signs to acknowledge my "presence". I would love to think that they would look forward to these moments, however I think hoping for that is selfish in a way. All of the grief suffered by missing someone as amazing as myself could drive a person crazy. My ego obviously hasn't aged either. What will really happen to my daughter if I pass away? Will some things be tough for her? Yes. Will she have feelings of sadness while watching other daughters hug and play with their father? Sure. Will she probably be sexually irresponsible with the wrong guy earlier than she should be because she is missing some fatherly guidance? Unfortunately that is probable. But I'm confident she can manage that stuff.
I have a good family, an incredibly smart wife and my child will be raised properly with or without me. I don't foresee her becoming a meth kingpin or a truck stop prostitute in the future simply because I’m not around to tell her that those professions, while lucrative, are generally challenging walks of life. More than anything, I want to be around to teach my daughter to follow her passions. I would rather her play a harmonica on the street with a smile on her face than be in a classroom with a frown. Not that I want to raise some awful child that only does things that are fun, but I want her to realize that life isn't that serious. It’s fragile and should be enjoyed; I want her to have a life full of adventure not full of regret. I don’t want her to cry because she hooked up with an ugly guy or because her Mom hooked up with an ugly guy and that ugly guy was…her boyfriend before me. I fear I’m going to miss the little things; getting a technical foul called on me and getting ejected while coaching her basketball game, trying to do her hair for the first picture day after her mom inevitably leaves me or my first chance to say “the other girls are just jealous because you are so pretty.” All things I think that make a great father.
Now there isn't a timeline on my death. I’m currently traveling to Utah every other week to take a "groundbreaking" drug. This pill won’t get rid of my cancer but I’m hoping it will dampen it's advances. So every other week, I fly to Salt Lake City and manage their little street car to my downtown hotel. It quickly became obvious that a "normal" Salt Lake City resident doesn't use this street car and it’s left for the crazies and undesirables. But a Salt Lake City crazy is a Starbucks manager in the Bay Area so I’m not really bothered. I normally check in the night before my appointment and since I’m in a drug trial, the drug company pays for my hotel. So I check into the nicest hotel in Salt Lake and watch Norbit for the 100th time as I fall to sleep. The next morning I get back on the street car to The Huntsman Cancer Institute. The Huntsman is a fancy cancer research and treatment facility. You can tell they're trying to make some type of "top 20" list. Every interaction is full of polite niceties like I’m gonna write a yelp review after I walk away. Some of the other cancer research centers I've been to can easily be confused with a downtown LA bus station. But the Huntsman is different. Everything feels deliberate and new. Every nurse is surprisingly cute. My Nurse practitioner smells like a Febreeze plugin and probably has a beautiful house adorned with cleverly unfunny artwork with quotes about wine or coffee. So every appointment, I’m dressed cuter than necessary and say something must be wrong with their scale because that can’t be my accurate weight.
I never knew you could gain weight while battling cancer but I also never knew how babies came out of women, so it’s been a year of learning for me. For one of my appointments, my childhood friends and I even rented a van and made the drive from San Francisco to Utah, stopping at obscure towns along the way, dining at the finest Basque restaurants Nevada has to offer, stupidly laughing the whole time. I'm beginning to realize this seemingly sad, painful experience as a cancer patient isn't that bad. There's times I can even admit that I kinda like it. I appreciate how fragile things can be, I like how close I've become to my loved ones, I welcome my new perspectives. I'm even beginning to enjoy strange parts of this experience, being in the waiting room speculating about the diagnosis of the new patient next to me or overhearing the family that just got the tragic news experience the emotions of it all. They are about to go on a journey like no other. It will probably end terribly but the journey itself is special and can profoundly alter one's life in a positive way if managed correctly. Family and friends seem to expect a miracle considering how much traveling I have to do for this drug. Realistically, this is just a pause, that’s it, a pause. That’s all I can ask for is a pause and truthfully I’m lucky to have it. I’m lucky to live in the times I do. I have Kidney cancer and recently there has been great progress with my disease. In fact, a diagnosis of my cancer 5 years ago would most likely have been a death sentence within two years. There is no cure. So now I'm down to one kidney, and with each treatment I am kicking the can down the road and trying to buy more time in hopes that some very smart scientists and doctors find a way to get rid of my cancer. So a pause in the growth of my cancer is more than enough for me. I imagine myself as a bank teller and the cancer as a bank robber that came into the bank with a gun. I thought he was gonna storm in and blow my brains out right away. He still hasn't pulled the trigger, we have weathered that first intense standoff and we have calmed down and are now waiting out negotiations. I’ve even discovered a fondness in my capture and hope he can get us some pizzas soon.
A strange part for me is, I don't look like I have cancer. Chemotherapy doesn’t work for my cancer so I don't experience the same side effects typically associated with people enduring cancer treatment. I don't get noticeably sick from the medicine which can lead to my diagnosis going unnoticed. I recently had a conversation with a cancer survivor who wanted to play the, “I had it worse” card. He said to me, “oh you’re so lucky you don’t have to go through chemo, chemo was terrible”.
Sure, I’m lucky I don't have to feel the sickness from chemo treatment, but he was telling me this after almost 20 years of being cancer free. He was sick for a few months and hasn't had to deal with it since. I’d take that any day. Plus, losing weight and all my body hair would be a side effect that I would excitedly welcome. I feel like I’m never too sick to be a full part of a cancer community and never healthy enough to be with the survivors. Which doesn't really matter, I don't feel a need to belong to a community. But sometimes I feel so bad for myself, I just want people to see that I am sick and refrain from arguing about politics or freak out about a parking spot. Sometimes I want everyone to feel sorry for me. It’s weird because this whole process is a contradiction. I want to be strong and not have anyone worry but I also want compassion and understanding. Obviously counter intuitive but cancer patients often say, “This is the best thing that ever happened to me”. Strange to hear but this is hands down the best thing that ever happened to me. I see life in a way that only someone in my position can. I have gained an acutely calibrated radar of significant moments. The goofball who takes too long to order his coffee and holds up the line no longer deserves to hear what I think of his stupid coffee order. So how do I properly raise my daughter? Every time she falls asleep in my arms, I’m in tears. I don't want to be sad about dying and 20 years later still be sad about dying. I don't want every test she takes, every game she plays, every "first" she has to be this big ceremony for her because I’m not sure if I will see another. More likely than not, I’m going to die while she's very young and she’s going to be devastated. She will be the girl on the softball team with the dead father. So everyone is super nice to her and now she's eating ice cream with the rich family after the game because she showed hustle running to first. However, there is a shot that I'm able to kick the can far enough down the road to where she doesn't even really know I was ever sick. The worst part is thinking they discover a cure right after I die and I’m a day late and a dollar short. I would hate to be part of the last graduating class of cancer death before we discover a cure. There is a real shot that happens. Sounds terrible but it's almost comical.
Despite this being something I view as a gift, depression inevitably creeps in. Suicidal thoughts work their way into my mind some days but are quickly squashed with the realization that this isn't that hard and I don't want people to confuse depression with quitting. I don't have it that bad, it’s just the thought of the nonstop battling that seems tiring. If all goes well I will be on some kind of treatment until my dying day. It’s hard not to feel sorry for myself, until someone much younger is wheeled into my oncology lobby. Being young there, you almost feel like the prettiest girl at the dance. You can feel everyone's eyes watching your every move. You can feel their hope for you, that you're strong enough to beat it. They look at you with encouraging and slightly jealous eyes. But you feel the sad parts of their journey, and their desperate worry for you. I can feel them worry that I might not make it to see my child grow up. No matter what happens I have loved my life. I have been blessed with a beautiful family, great friends, a wonderful wife and now a gorgeous daughter. If I die soon don't feel bad for me, I got to live 38 years as Joey, that’s way better than 95 years as someone else.