Wishful

December 20, 2020

It’s been a couple of years now, but I still keep thinking about that one test. It was in May of 2018. I had been diagnosed with an adrenal tumor after an MRI at the NIH.

I was part of a research study on the amount of gadolinium used in MRI contrast and while they were conducting an MRI on my heart, they discovered the mass on my left adrenal gland. They told me their MRI machine is one of the most advanced, top-of-the-line MRI machines in the US. Though I’ve been in a lot of them, I’m not too familiar with the nuances of MRI technological differences. Although I do remember this one couldn’t play music, which would have been pretty cool.

They sent the results back to my cardiologist who referred me to an endocrinologist. The endocrinologist took a look at the MRI and said, “yep, that’s a tumor all right.”

My endocrinologist wanted to run her own tests to determine what kind of tumor it was, my symptoms were showing it could be overproducing adrenaline or cortisol and we needed to be sure to decide what action to take. She also wanted another scan done. We decided on a CT scan because it was more affordable for me as compared to another MRI. She ordered it to be done with and without contrast. She told me this was very important because the CT wouldn’t be as clear as the MRI for this kind of test, and the contrast would help make it more visible, so it was vital I had it done with and without contrast.

I arrive at the medical complex on the day of the test, change into the gown they’ve provided me, and put on those hospital socks that I absolutely love. They’ve got those grips on both sides that make slipping and falling difficult while also making sure you can’t put them on the wrong way, which is genius, and they’re a weird kind of cotton, but somehow super warm. These are sky blue, which will complement my collection quite nicely.

After I’m changed and the machine is free, the technician takes me to get my CT done. He explains that they’ll conduct the test without contrast first and then come give me the contrast for the second part of the test. I say okay, lie back on the machine, and settle in for the radiation. Between the amount of gadolinium from MRIs and radiation from CT scans I’ve got in my body at this point, whoever does my autopsy one day will have quite the adventure. I’m looking at you, Dr. G Medical Examiner.

After the first half of the test is complete, the technician comes back into the room, says, “well, the radiologist didn’t see the tumor, so you’re good to go!”

“I’m sorry, but you still have to do the contrast part of the test,” I note.

“The radiologist doesn’t see a need to do the contrast part of the test based on the first part of the scan, so the CT is complete. You should be happy! Come on, let’s go get you changed and on your way.”

I was stunned. I looked to the viewing glass on the wall, wondering if the radiologist could see me now and why they weren’t following my doctor’s orders. Tears started to cloud my eyes as the technician just kept saying, “you should be happy!” I had objection after objection rising within me, but within me, they stayed. I numbly followed the technician, changed back into my clothes, and was so dejected and distracted, I didn’t realize I threw the socks into the hamper with my gown until I was on the sidewalk calling my Lyft home. 

Two weeks later I was at my endocrinologist’s office for the follow-up appointment. It wasn’t good news. The CT scan wasn’t helpful, of course, and the labs weren’t conclusive either. She gave me orders to have labs done when I was actually experiencing symptoms, thinking the overproduction of adrenaline or cortisol might be episodic and set an appointment for a year for us to check for cancer. I wanted to argue. The CT scan wasn’t done in alignment with her orders, we should do something else if she needs an image on top of the NIH’s MRI results. I’m scared enough and now I’m leaving the appointment feeling like I’m alone on a life raft in an ocean of uncertainty. How do I go forward from here? How do I get back home?

But I don’t say anything. I take the orders; I turn and go. 

I don’t say anything because she’s the doctor. She’s got the MD and she’s the expert. I’m not. I feel small and I feel scared.

She didn’t do anything to make me feel that way. She was kind and calm, with a great demeanor, and was obviously very competent and quite good at her job. It wasn’t provoked by her. It’s something I’ve felt time and time again in doctor’s offices. I’ve felt intimidated by the power imbalance and it has silenced me more than I want to acknowledge.  

This was two and a half years ago and I wish I had handled it all differently. I wish I could tell myself what I know now.

I wish I could tell myself that it’s a perceived power imbalance. That yes, my doctor has an MD and is a medical expert. But I’m an expert on my specific body. I know what baseline is and I know when something’s abnormal. I wish I could tell myself that it’s a collaborative process, where I bring my experience on my body and my doctor brings their experience on medicine and we work together to figure out what’s wrong and what we do about it. I wish I could tell myself that my body can’t speak for itself, so I have to. I wish I could tell myself that as a patient I’m a customer paying for a service and I have input in how that service is carried out. I wish I could tell myself that it’s my body, my money, my time, my insurance, and I need to act like it!

I wish I would have known how to self-advocate.

I wish I would have told the technician, “I understand the radiologist isn’t seeing the tumor without the contrast and doesn’t see a need to proceed with the scan, but my doctor ordered it with contrast, my insurance cleared it, and I know it’s a vital component in determining which direction we go next. So I’d like us to conduct the second part of the scan. Could you convey this to the radiologist and ask if that’s possible?” 

I wish I would have told my doctor, “I know you’re going by the playbook for how to diagnostically handle this kind of tumor, but the CT scan wasn’t done to your orders. Would it be possible to have another MRI done here at this facility if you do need another scan to determine what kind of mass it is? I know it’s going to cost more, but if it’s overproducing adrenaline, you told me this could be life-threatening, and the comfort of knowing my life isn’t imminently in danger is worth the extra co-pay to me. What do you think?” And if she had said no, I would have said, “I understand, and I’d like to get a second opinion. Could I get copies of my test results, scans, and visit summaries?”

I probably also would have earlier said, “Can you help me understand why additional imaging is necessary when we have the scan from the NIH’s MRI?”

I wish I had known that self-advocacy isn’t rude and you don’t need to be rude while self-advocating. It’s about ensuring you’re collaboratively working toward a solution and giving voice to your body. It’s being matter-of-fact and an active participant in the medical process. Sometimes it will mean being kind, but firm. Sometimes it will mean asking questions, politely disagreeing, getting a second opinion, and even saying no.

I wish I had handled this test and this appointment differently. But I couldn’t have. I was a different person then, and I can look back at that version of Madison with kindness and compassion and know that I did the best I could in caring for myself at that time. I didn’t know any better.  

I wish I had self-advocated then. But I don’t have to wish that going forward, because I know I will.

I do still wish I took those socks, though.

To hear this entry read aloud, click here.
To watch this entry in American Sign Language, click here. (Coming Soon)