Friday, January 5, 2018

This is Cancer: A Story of Misdiagnosis and Doctors Who Don't Give a Shit

The pain and bleeding started sometime around December 2015.  It felt like your garden variety menstrual cramps, except it bloomed in my body whether or not I had my period. The blood was abundant enough to color the toilet water a dilute red. Not so red that I went shrieking into the ER, but red enough that I did what I always do when I have inexplicable stomach pain and rectal bleeding: I emailed my gastroenterologist's office. I've had Crohn's Disease since I was in high school. It had been a while since my last colonoscopy. I figured my Crohn's might be flaring up. I had no idea what fresh hell I was in for.

Screenshot 1 of the email conversation, because receipts.

Screenshot 2 of that email conversation. Like I said, receipts.

My (former) gastroenterologist is Dr. David Schwartz and he is supposed to be some kind of Crohn's god. If you live in or near Nashville and you've got IBD, he's the doctor people recommend and he's the doctor I've been seeing since I "graduated" from my pediatric gastroenterologist. He got the memo about my pain and bleeding and basically blew me off. He's always been apathetic when it comes to patient care. It's rare that I've had an appointment with him. Usually I'm only able to get an appointment with one of his nurse practitioners and then they consult with him and decide what to do if I am having symptoms. I don't bother sending emails directly to him or trying to get him on the phone. If you send him a message or call, you'll get a response from a nurse, nurse practitioner, secretary, or janitor from his office, usually several business days later. Trying to get a hold of that man is as futile as trying to trap a fart in a hurricane.  

In his typical fashion, Dr. Schwartz didn't bother to schedule an appointment or order imaging when he learned about my stomach pain and rectal bleeding. Apparently gods don't need diagnostic testing to decide what's wrong with their patients. They just make grand pronouncements without evidence because they're gods and they know things. Instead, he just had his nurse practitioner respond to my message and tell me I had diversionary colitis. He wanted me to use some enemas and get back to them later. And that was that. He seemingly washed his hands of the situation and of me and went back to doing whatever deities do after they dismiss the mere mortals who bother them.

The enemas didn't make the bleeding or pain stop, but I continued my regular activities, comfortable in my belief that if Dr. Schwartz found my symptoms concerning, he would have, you know, done something more than tell me to shoot medicated water up my butt. I ended up rescheduling my next appointment in his clinic, but made sure I told them the pain and bleeding hadn't stopped when I saw his nurse practitioner again. I still didn't have an appointment with Dr. Schwartz, but once again, he determined that I needed more enemas.

Screenshot of the first enema prescription

Screenshot of the second enema prescription
The enemas didn't work the second time I tried them either, but once again, I tried to push on with my life. Fast forward to June 2016. I started to notice a lot of pain when sitting down. I have an autoimmune skin condition called hidradenitis that causes me to get abscesses in areas like my under arms and near my lady bits where apocrine sweat glands live. It's not contagious, but the affected areas are unsightly and incredibly painful and doctors don't really know how to treat the condition. The only thing that has ever really worked for me is having a plastic surgeon cut out the affected tissue. So I sent a message to Dr. Shack, my plastic surgeon at the time, and he scheduled an appointment to take a look. He examined the area in his office, but said it just looked like the skin had split open a bit and he didn't think I needed surgery at the time. It hurt like you wouldn't believe, but I'm not a medical professional and when a doctor disregards your pain like that, it makes you feel crazy, like you're imagining it. There are plenty of news articles on the internet about doctors who ignore women's pain and how Black patients are half as likely to get pain medication than white patients. I would like to believe that bias did not play a role in the way my doctors failed to investigate my complaints. Honestly, I'll probably go to my grave wondering why this happened to me, but here's a little spoiler alert: Dr. Schwartz and Dr. Shack were inaccurate in their assessments.

After my appointment with Dr. Shack, I soldiered on as best I could, but a month later, the pain had gotten worse so I took a hand mirror and lay in bed to try to get a look at the area myself. In the space between my vagina and my butt, I saw something that left me terrified. It looked nothing like the abscesses I got from my hidradenitis. I didn't know what it was at the time, but it scared me enough that I emailed Dr. Shack again to schedule another appointment and then immediately went to urgent care to ask for an antibiotic because the area just looked...infected. Deadly infected.

I started taking the antibiotic immediately, but didn't notice any improvement. If anything, things got worse. I saw Dr. Shack again. I told him I thought the new area looked different from my hidradenitis, but he just told me I had "new disease" and asked me when I wanted to schedule surgery. I had just started a project at my job and wanted to try to finish so I could save up some money before being out of work for an extended period of time. The universe had other plans. 

One day at work I noticed that I wasn't peeing as much as I should have been given all the tea I drank at my desk. I sent a message to my primary care doctor. She was out of town, but the doctor covering for her was able to see me. They did an ultrasound of my bladder after I tried to pee on my own. Despite having just gone to the bathroom, my bladder was full. The doctor told me I needed a catheter immediately and that I couldn't wait to have surgery because my entire vaginal area was swollen, including my urethra. I believe that was on a Friday. By the next Monday I was on an operating table at Vanderbilt. About a week after that, I went to my followup appointment with Dr. Shack. He checked my surgical wound then stood up and backed away from me, like one might back away from a feral animal. He told me that the pathology report was back and this wasn't hidradenitis after all. I had just enough time to frown and wonder what the hell he was talking about before he told me I had colon cancer.

I remember going from zero to frantic in the space of a second. I know he kept talking, but I wasn't really listening. He was saying things about chemo and radiation and reconstructive surgery. I was still stuck on the part where I came into his office for a routine surgery followup and the situation somehow devolved into a nightmarish cancer notification. He assured me that they had rechecked all my previous pathology reports and those times they had only removed hidradenitis, not tumor. The man had just dropped a nuclear bomb into my life and and he was just worried that I'd sue him. Awesome.

I remember calling one of my aunts while he was still talking and blurting out that I had cancer. It probably was not the best way to convey news like that, but I wasn't thinking all that clearly. At some point Dr. Schwartz came over to Dr. Shack's office to answer my questions since I'd just had surgery and horrible news and wasn't really in the mood to go to the IBD Clinic. Much like Dr. Shack, Dr. Schwartz seemed strangely wary of me. He also looked like he was about to cry, and I assure you it's not because I'm his favorite patient and he was worried about me. I'm pretty sure it had more to do with the fact that rectal bleeding and stomach pain are symptoms of colon cancer and maybe if he'd done his job 8 months earlier when I started having symptoms, they could have diagnosed me before the tumor was visible.

All of this happened between December 2015 and August 2016. Since then I have had chemo, chemo radiation, a massive surgery, and, unfortunately, a relapse. I've just found out that my cancer is back and the prognosis isn't great. I'll write separate posts about all of that later, but for now, I'll close with this: when it comes to your health, you have to be your own advocate. If a doctor is treating you the way Dr. Schwartz and Dr. Shack treated me, don't let them get away with it. You know your body and you know when something is wrong with it, so do what you have to do to be taken seriously whether that's file a complaint against your doctor, switch doctors, or show up in the ER daily until someone figures out what's wrong. Be persistent, be a bitch, and don't let a dick with a degree make you feel insignificant. You deserve the best healthcare available, but sometimes when it comes to doctors, only the squeakiest wheels get the grease.