Sitting at my kitchen table one day, surrounded by a mess of scribbled pages, I made the decision to start a blog and document my experience with a desmoid tumor diagnosis. I wanted to help people with the disease, as I had been helped by so many when I felt lost and broken. I also needed the catharsis. I’d had years of pent up emotions that, for me, could only be sorted out in the written word.
The word hero gets bandied about when you talk about tumors and chemo and recurrences. Your strength gets praised, as if you’re somehow stronger than any other person who would be in your shoes. Powerful. Badass. Fighter. Warrior. I’m none of those, I assure you. No matter how many times those words are uttered they don’t stick. I’m really just your everyday average human being and nothing more. Frankly, I just did what I wanted, what I needed to survive for my children and to eke out what I could of this life, as there’s so much more I want to experience.
I understand when someone reads of the nausea, the vomiting, the diarrhea, hair loss, emotional and physical changes, the aches, the fatigue, the financial devastation it can appear as though you have to have superhuman strength to get through those minefields. You don’t. You all have what it takes. You just find it when it’s asked of you.
I’m entering a new phase of this disease, I say hopefully. It’s been two long years since I’ve had to take oral chemo. And probably a year since I’ve felt more like me. In a little over a month, fingers crossed, I may find my tumor is still stable. That will be an important benchmark for me, two years without a recurrence, the longest I’ll have ever gone.
The days of looking at my peaked tone and thinning hair in the mirror are being replaced with the luxury of only worrying about how to control my full wavy mop and ever deepening crow’s feet. I continue to pay off excruciating debt from years of high deductibles and copays, but I’m making end’s meet. I’m in pain, my leg is not whole, but I walk on my own two feet every day and always try to remember the months that I could not.
I’ve told you of pretty much every single aspect of the disease. The surgery that shouldn’t have been. The treatment that worked and the many others that didn’t. I’ve shared my fears, my sorrows, my joys, and every lesson learned that I could think of. By now you know the drill, the rollercoaster. Anxiety peaking closest to the next scan. Flush of relief when I get good news. I imagine that’s how it will go in my remaining years, as there is no ‘safe’ time when you have a desmoid tumor.
The day to day drudgery of being sick may be behind me, hopefully for good but one never knows, but the fight goes on. While I’m not a hero, I’m no badass, no perfect warrior princess, I do have grit. I’m loud. I’m stubborn. The battle, so to speak, doesn’t end because I’m well. In fact, it really only begins after the fact.
I’ve touched on political topics, Charlottesville, the many times I’ve made fun of the emails Donald Trump sends me, players taking a knee. And that’s where my hero status tends to fall a bit. Everyone loves an underdog. They love your fight when you’re grey and nauseous and your hair if falling out. When you start calling Eric Trump ‘creepy as fuck’ people tend to be a little less supportive of that.
I’ve always been political. Raised by a father whose views leaned in the opposite direction of mine, voting was encouraged, the paper was read daily, the nightly news was the background music for every single dinner. Being ‘political’ was your duty as an American. I still view it as such and, quite frankly, can’t understand why others do not.
But now ‘being political’ is viewed as being divisive, taking sides. But being political, for me, post illness, aside from what I consider my job as an American, is simply a matter of survival. It’s just as important a part of documenting my illness as talking about my fears and worries. Just as important as telling you which treatments worked and which didn’t.
For all the talk of me being a fierce warrior, tough as hell, the fact is I am not. My saying that does not come from a place of humility. It’s a reality. I am weak. I am vulnerable and fragile. I depend upon and will always depend upon the kindness of strangers to get through this life in this battered body.
I need people in government that will fight to support universal healthcare, so I won’t go bankrupt trying to fight a possible recurrence or even to just to keep my head above water as I continue to be well. I need politicians that support progress and research in medicine so that one day there may be a cure. I want an administration that will help those too sick to work, those who need special care. I need to live in a society that views mental health as important as physical health. And I want it for you just as much as I do for myself.
I wanted all these things before the tumor. I see it as basic common decency to help your fellow human. But I’d have been more inclined to keep it to myself. Then, one day, everything went to hell. Out of the clear blue sky, after a lifetime of being healthy, I was struck down without warning and I’ve struggled ever since. It shouldn’t be that way for me. And I’d hate for it to be that way for you. And that’s how the fight continues.
So, yeah, I’m political. I am. It’s true. And I make no apologies.
I am political not just because I should be. I’m political because I have to be. My tumor made it so.