My Jaw Resection Journey

So based on the title, you probably assume that this post is going to be about my surgeon, or my oncologist, or my parents… well it’s not. Don’t get me wrong, all of those people, my entire medical team, and my inner circle are the reasons I’ve survived the hell I’ve been through the last 4 years. I am eternally grateful for each of them, but one person changed my entire perspective solely by their response… My best friend.

I assume if you’re reading this that you either know me, or have some connection to osteosarcoma/mandible resection surgery, so I’ll fill you in on a little about me just in case you fall into the latter category. I am an only child. I come from a very small family, like we don’t have to have a “kiddie” table at holidays because we all fit at one table, small. Because of this I’ve always kind of had an extended family made solely of close friends

I’ve chosen, which I frequently refer to as the inner circle. I consider myself very friendly; however I think there is a big difference between being friendly and being friends. It takes a lot for me to let people in. I have a relatively tough exterior, and prefer to put on a good attitude in the morning in the same way that I put on an outfit. This isn’t me being fake; I just don’t think complaining about my struggles or being mad at the world will do me any good. So when I got diagnosed with cancer, I didn’t pray for God to take it away, I prayed for him to give me the strength to get through it with a good attitude, and sometimes that requires effort. Very few people know when I’m struggling with something, but once I vent and convince myself that “if I can’t change it, I need to change the way I think about it”, I usually decide to be okay with it and I move on. I’m incredibly decisive. Once I’ve made a decision, I rarely go back on it. That’s just not my style. Well in 2012, after throwing up every day for 30 weeks, feeling more tired than I ever knew possible, spending an inordinate amount of time in the hospital, having to completely press the pause button on my life, and losing every hair on my body, I swore that if my cancer ever came back that I wouldn’t put myself through chemo hell again. As time passed and I met more Cancer Survivors, most of whom did an average of 9 weeks of chemo, it only reaffirmed my decision. If 30 weeks of one of the strongest chemotherapy treatments on the market didn’t rid my body of cancer, I wasn’t convinced that anything could. In 2014 I had my first recurrence. Following my previous decision, I wouldn’t even entertain the idea of doing chemo, and we removed my entire mandible in attempt to get of the cancer. Well that didn’t work, or maybe it did temporarily, who knows, but either way in 2015 my cancer came back. I knew it before any medical tests confirmed it, honestly I had also been having headaches and thought it had spread to my brain. Come to find out later, it had not, and the stress of the entire situation was just causing high blood pressure that made my head throb in a different place than my usual headaches. For the first time throughout this whole ordeal, I thought it was a possibility that the cancer could kill me. As an only child I had no idea how to tell my parents. I wanted to tell them first but literally couldn’t form the words. Once you say it, it becomes real. I couldn’t do it. So I told my best friend.

Without getting into too much detail about that night, I’ll just say that I hadn’t planned it out. We were walking down the street and I just started hysterically sobbing and blurted it out. Not that that’s ever a good conversation to have to have but this was pretty much the absolute wrong place and time to go about it. I don’t think I’ve ever been hugged tighter in my entire life. We just cried together like we were the only people around, and I think the only words that were exchanged were “I can’t lose you”. The rest of that weekend, it wasn’t discussed vocally, but I’ve never felt more supported. They say actions speak louder than words, and I think our relationship is a true testament to that. Then again, what on earth would I say if the roles were reversed? Sometimes it’s not necessarily what’s said but how your heart feels.

Once I met with my doctors, they basically told me that I had to start chemo next week. The surgery would be too drastic at this moment and we needed to try to shrink the tumor before we operated. Being told your only real option is to do something you’ve sworn for about 3 years now that you’d never do again is absolutely the worst place to be. Especially when you’re as decisive and stubborn as I am. I’d always thought that if I wasn’t an only child my decisions regarding treatment might have been different, but as my parents’ entire world I felt I had to fight. They saw how horrible the chemo was and agreed that it was my decision. As much as it killed them, they wanted me to decide to do it for me, not for them. So I thought about it. This entire time I’d only been considering the feelings of my 3 parents and myself. Then that night on the sidewalk with my best friend, crying in his arms, popped into my head. His words, “I can’t lose you” will stick with me forever. As much I feel like my life is complete, that I’ve had the absolute best 29 years possible, and accomplished everything I truly want to accomplish, me choosing not to continue the chemo was a bigger decision than me just being okay with maybe not seeing my 30^th birthday. Deciding not to do it would have so incredibly selfish. It was about more than just my parents and me; it was about my two best friends who would do absolutely anything for me, the rest of my family, and our inner circle.

Those 4 little words changed my life. They saved me. He actually saves me a lot; sometimes from myself, far to frequently helping me avoid injuries due to my clumsiness, and most importantly has this incredible way of knowing what’s in my head (even if it’s not the front I’m putting on) and keeping me in perspective. He constantly reminds me when I’m pouting about having to miss something because of my chemo/surgeries, that although I may be missing Thanksgiving, a UK game, a Christmas Party, etc. that hopefully what I’m doing will allow me to experience many more of those things. And you know what, he’s one hundred percent correct, it’s just easy to lose sight of that. I’m still on a PEG feeding tube from the last surgery, I would probably run someone over with car for a hot dog, but I’m mostly adjusted to it now. Well I had a party for work that I had planned, so I couldn’t miss it, and it happened to be a length of time that was going to require me to take my feeding supplies and tube feed at the party. In this instance, my feeding pump and bag went into a backpack and a small hose connected from the backpack to my stomach feeding tube. I was nervous because there were going to be a lot of people at the party that I’d never met, and my speech is still pretty terrible after my surgery, so I was having some social anxiety about it. I decided I couldn’t change my situation so I shouldn’t be embarrassed by it, and was fine. I even took a picture of me with my feeding tube backpack and fancy outfit to send to him. I captioned it “first day of school” because that’s how I feel with a backpack on. His response was: I know it has to be difficult walking around with that, but I think it looks great, even better than your dress, because it’s keeping you alive. In my opinion, that is the truest of best friends right there. I could tell you hundreds of other stories similar to this one. I’m so fortunate; my heart could explode when I think about it.

While I think friends are the family you choose, there’s definitely a difference between friends and family. Friends can come and go, while more often than not your family will stick by you no matter what. I have been so blessed to have wonderful friends who have stuck by me during the worst times of my life. It would have been easier for them to just bail, most of us are mid to late twenties, they could find friends with a lot fewer issues then I’ve had going on the past 4 years, and although it would have been easier to jump ship they stuck by me and for that I am eternally grateful. I kind of think I’ve been through enough hell for our entire group, but I don’t think that’s how the universe works, so I will do everything in my power to support them when they are having dark times.

And to the person who saved my life: my best friend. I cannot thank you enough for the advice, always giving me a shoulder to cry on, for crying for me, and for the numerous times you let me forget I’ve ever had cancer and we’re just on some fun adventure together, but most importantly for always saving me from myself and this cancer when I needed it the most. I promise to spend the rest of my life trying to make it up to you. I love you.