intuition > intimidation (my story Part 3)

In the words of my good man Timbaland,

“It’s been a long time we shouldn’t have left you without a dope beat to step to.”

My apologies, it did take me 4-6 business weeks to emotionally decompress from that last open letter. But in the words of my good man Akon,

“Don’t look no farther Baby I’m back, yeah.”

Ok enough with the 2000s hip hop references. Maybe.

I’m starting a new acronym, IYGIYGI (if you get it you get it). I feel like the commonly used, IYKYK (if you know you know), is a little presumptuous. As students of life, it’s ok, encouraged, and celebrated not to ~know~ it all. We should always be seeking, learning, and growing. However there are certain concepts that even if you don’t fully know yet, you can still get the idea. If I’ve learned anything during this health journey, it’s that I know nothing (Jon Snow) IYGIYGI. The universe has duped me, the humans have duped me, and I have duped me…multiple times over. So moving ahead I’ll be throwing out IYGIYGI and now we have our own inside thing that you “get”, even if you don’t get what I’m talking about (which..what am I even talking about at this point? Should we just stick with 2000s hip hop? Don’t tempt me…)

November 2019 Vail, CO

November 13, 2019

The day we found an unidentifiable mass on my pancreas. My friend took this picture of me at Vail Health to send to my worried mama back in Denver after hours in the ER.

Moving along to the follow up appointment. My new pet mass and I are embarking on a diagnostic journey together. “What ARE you, pet mass?” *she thought to herself* cuz right now, this gastroenterologist is assuring me you’re nothing but a mere a cyst! He says we have those all throughout our bodies, but most of us never know. However, this pesky gut of mine is telling me not to trust what he’s saying.

The sarcastic and hurtful “oh what, you don’t think it’s cancer do you?” *insert self-assured man laughing at now forced-shared-giggling silly little girl* I know there are so many patients in this office to get to and he doesn’t have time for a young 28-year old who’s healthy with no family history. I hear the condescension in his tone when he tells me I have nothing to worry about. I GET IT. But what if, and hear me out here, there is something to worry about…. What if anything is possible? What if we can’t assume? I know, that’s a toughy. What if anything is possible and any possibility is happening right here and right now to me? Because outliers exist. And one size does not fit all when it comes to my health, IYGIYGI. And his “generally speaking” and stats don’t apply to me. I’m sitting here in this office, young, intimidated, and now questioning my own intelligence because this gastroenterologist is insinuating that he knows my body better than me after five minutes of being acquaintances. I am a legendary performer darling, but I’m not being dramatic. I’ve never thrown up blood before. I barely ever throw up at all, please see emetophobia, unfortunately IYGIYGI. I have experience with ulcers and I’ve had extreme heart burn my whole life; this is different. So go ahead and scoff, but order the endoscopy and let’s see what science has to say. Ok lol…that is the backbone I wish I had then. The conversation was much more apologetic (on my end), filled with nervous chuckles, and a very mousy request to look into it further. But we got there, and yes, he was wrong.

Also, I woke up in the middle of the endoscopy gasping for air and swallowing frantically with tubes shoved down my throat, but that’s a tale for another time.

No bleeding ulcer, although I was still put on a diet for that becaaaaauuuseeee….?…unclear. There was still no answer for why I had vomitted blood. He then ordered an ultrasound of the abdomen to get a better look at this alleged cyst. Knowing what I know now about the different types of imaging, I believe this to have been another way of pacifying me and my wild notion that something darker was at work inside my body. My body that I had been living in for 28 years and he had been sitting next to for the five minutes he could spare. Fun, not so fun, fact: I’ve had many ultrasounds for various reasons in my lifetime. At least three of those times that I can remember, I’ve had the tech ask ME for further direction, instruction, or clarification because they didn’t understand the direction or motive of the doctor’s order. They have looked me directly in the face and said that this wasn’t going to achieve anything and this was not the best imaging for my particular need. I started to understand you have to check off certain boxes for insurance and paychecks before you can go straight to the helpful part of diagnosis and treatment, IYGIYGI. I should join the circus with how many hoops I’ve jumped through to get real answers and evidence based in science and genuine concern.

If this challenges your ideologies and it’s uncomfy reading it, imagine being me living it. We’re all uncomfortable and pissed off here, ok? No one leaves unscathed. And if you’re not, you should be. Because something is wrong with the system. This is not an attack on any individual providing healthcare and trying to help, this is a call out of a very flawed system. We are dying. We are sick. We need help. I don’t claim to know how to fix it, but let’s normalize the concern and bust the conversation wide open.

I could be long gone by now had I not questioned this doctor. And he would’ve got away with it, if it wasn’t for you meddling gut, reason, and logic!

Full disclaimer, I am very theatrical. I don’t hate this doctor at all. I’m very passionate about anyone, but specifically young women, finding and owning their voice. I didn’t find mine fully until recently and it’s still incredibly difficult and uncomfortable to advocate for myself. But please do let the record show that I am very done with older men in positions of power making me feel fearful, less than, or unsure of myself in any capacity. IF YOU FREAKIN GET IT, YOU GET IT!

December 2019 - February 2020 Denver, CO

Without this story taking as many months as the actual diagnosing did, I will just share the highlights. After the ultrasound of the abdomen, I was sent for an MRI. I had never had an MRI before and was unaware many people take Xanax or something beforehand to help with the extremely tight space, uncomfortably loud noises and for my particular scan, holding my breath for 30 seconds at a time. That may not sound hard but imagine 75 minutes of holding your breath continuously, plus they said if I gasped too soon or couldn’t hold it for the duration, we may have to start over. Luckily I was in good company, as they had asked me what Spotify station I wanted playing while I was in there. I chose Local Natives, IYGIYGI.

Well even after all of that, the MRI could not get the conclusive imaging they wanted. This mass/cyst/master of hide and seek was positioned so stealthily right between the head and the body of the pancreas. They decided they were going to have to perform another endoscopy to get a better look and take a biopsy, since I was just not cooperating with the “young, healthy, no family history theory”. The audacity of me !!!

One CT scan, one ultrasound, one MRI, and two endoscopies later, we had an answer….or so we thought.