Amie’s Story

Site created on October 27, 2017

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

My story begins with a persistent unproductive cough in April of 2017.  I went to the walk in clinic in May and being a healthy, young non-smoker, the doctors thought it  might be allergies.  Allergy treatment didn't improve the cough, so I went back to my primary care doctor in June and we tried another of the three main causes of persistent cough in healthy non-smokers: adult onset asthma.    The inhaler got my through my Ragnar relay race in July, but the cough was still there and not improving.   A repeat trip back found me on drugs for reflux, the third main cause of persistent cough.   A few weeks on the drug didn't seem to improve the cough, so then I headed to a specialist, had an endoscopy and a study with a chip implanted in my esophagus and a device I wore and pushed a button each time I coughed for 48 hours.   The results of that study told us that yes, I had mild reflux, but the refulx events were not aligning with my cough.  This was September of 2017, I'd started back to work for the 2017-2018 school year, and I found myself missing days of work.   By Friday or even Thursday I'd be so tired and nauseated I couldn't function.  My primary care phyiscian schedule an appointment with a lung specialist and as a prerequisite for that visit, a chest X-ray was ordered.   That was October 9th, and I went in that day for the x-ray and that started a whirlwind of tests.  A CT scan, which led to my lung appointment being moved forward three weeks, then a biopsy that told us it was cancer.    It was still another week or so before I finally received my full diagonosis:  stage 4 adenocarcinoma of the lung.   This is a cancer that is increasingly being  seen in young female non-smokers- even what they call "never-smokers" like me.   The good news is that I appear to also have a gene mutation that is responsible for the abnormal cell growth called ROS1.   The mutation can be treated with targeted therapy.

I started treatment with Xalkori (crizotinib) targeted therapy November 4, 2017.   Initial scans showed reduction in all tumors, and have continued to show small reductions since.

Newest Update

Journal entry by Amie Parker

People talk to me when I am here.  Other patients, sharing their happy news, their successful treatments and bright scan results.  Or their hopes for all of the above.

Why do they pick me?  I don’t feel particularly welcoming today.

Maybe it’s because I have the trappings of a patient, as do they.  The hospital bracelet, the “I’ve been screened sticker” or maybe it’s the IV hanging out of the crook of my elbow that gives me away.  Does being a fellow patient make me more approachable?

It could be that I’m not threatening to talk to because I don’t look sick.  I have my hair, no scarf, only the smallest dark circles under my eyes and I’m strong and mobile.  On my own, because I am still able to move myself freely through my world.  Maybe I look, to them, like what they want their own experience to be – instead of the stark specter of what they hope to stave off.

“I was last here in January of 2020.  I’m hoping my scan today shows they got it all!”

“I’m just here for my yearly check-in to make sure I’m still in remission. If it’s all good I won’t have to come back for 5 years!”

I respond with congratulations, or well wishes, the appropriate positive affirmation and then there’s the silence.   A look that asks for my story.  Maybe I’m a little bit grumpy today because I choose not to respond.   I don’t feel like explaining that remission isn’t in the vocabulary for my cancer.    Or that a good scan result isn’t “getting it all”.   Or that even with a good result, I’ll be right back here again in 8 weeks.  

I have hope too, it just doesn’t look like theirs.  

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