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.
Really well said. Beautiful piece.
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Thank you.
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We all need to make sure our giver is accountable to citizens (not corporations) and we can’t expect others to do it for us. We need compassion not bombs. We need education not corporate tax cuts. Etc.
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Yes, yes, and more yes.
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Just so you know, I am totally supportive of you calling Eric Trump ‘creepy as fuck.’ 😉
It still blows my mind that so many people hate the idea of universal healthcare in the States. Do people really think we have it worse in Europe and Canada because people don’t worry about going bankrupt when we get poorly? I also can’t understand why people who will benefit most from it seem to vote against their own well-being, because other matters (like abortion or the colour/gender of the president is more important to them.)
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Hahahaha! And I appreciate that support!
I’ll never get that mindset either. It makes no sense to me.
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Beautiful post. Your authenticity comes through in every word. Elie Wiesel mused “we must always take sides”. I could not agree more. Thank you for this.
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Thank you for reading it.
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Great post. Personally, I think you ARE a hero😊
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Thank you, but also hush your mouth. Lol!
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The way things are going these days, your illness is just one of the reasons you have to be political. You’re a woman, you’re a mother… I could go on and on, but you already get it. Sending you (((hugs))) and hopes for good news on the medical front!
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So much yes. And thank you.
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When a disease or an injury strikes us our minds have a way of seeing the world with a different pair of glasses. It’s as if we took off the old pair we’d been wearing since day one and tried something new. Those new glasses suddenly show us a world far different than the old pair ever could.
For some reason I’m thinking of those old glasses from the 50’s. Off topic. Never mind.
A disease is never a blessing but if you kick this thing out like I hope you do in some tiny way a blessing it might be. You will see and do things you may never have done. Those damn glasses are something, aren’t they.
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They are. I was once asked by a friend what age I would like to be permanently stuck at and I couldn’t say an age younger than when I was diagnosed. I’ve been permanently altered, but I wouldn’t want to go back.
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That’s the best way to think. Smart people are the best!!!!
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Excellent post, Christine! I think every thinking person should be political!
I can only look south from Canada and sigh… my American heroes are Michael Moore, Bill Maher, Oprah, Bernie Sanders, Barack & Michelle Obama, Joe Biden – for speaking out fearlessly on behalf of sanity, for being on the side of the underdogs, always. I wish I could do more, but – in the absence of sending money wherever it would do good – since I don’t have any spare dough, I just post and comment loudly on social media as much as I can. About all I can do, oh, and turn up at demonstrations and vigils. Went to one for Pittsburgh here at a local synagogue, a couple of weeks ago. Almost 2000 people showed up. Standing room only. So so tragic and terrible. Again. F**k.
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Justin Trudeau gives me hope. Just keep being Canada and maybe some of it will rub off on us.
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We’ll try!
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