My brother receives four treatments every other Tuesday, two of which include chemotherapy and immunotherapy. Not surprisingly, due to the extent of these treatments, Ryan doesn’t move far from the couch in our living room afterwards. But because his treatment was last week, he’s feeling better now, thanks to the week and a half grace period. While this makes my weekly update a little difficult, I would much rather have to tell a previous story than continue to rant about how poorly he is feeling. This being said, this week I’ve decided to flashback and tell the story of how his diagnosis came to be.
In October of 2017, my brother was a student at Penn State Altoona. He was in his sophomore year of college, and had transferred to a Penn State branch after his roommates at the University of Delaware complicated his freshman year by deciding to sell LSD out of their suite’s shared bathroom. No, sadly I’m not kidding, and no, I did not send an application to the home of the Blue Hens.
While my brother was at Penn State Altoona, there was one day that he was home sick from classes because he couldn’t keep any food down. He assumed it was the flu, so wrote his illness off and didn’t seek medical attention. Lucky for him, his roommates doubled as his guardian angels, and they took a begrudging Ryan to the Urgent Care near campus. Shortly after, my parents and I received a phone call to our home from Ryan, freaking out because the doctors said they needed to take out his appendix immediately.
As I’ve briefly mentioned in one of my earlier posts, my brother also has Asperger’s, and one of the characteristics of this form of Autism is the hatred of sensory stimulation. An example would be going under for a surgery, and to make it worse, going under for a surgery by yourself. However, my family and live at least two hours from Altoona, which meant that we wouldn’t be able to get to him before they began the procedure. Nonetheless, my dad practically flew out the door and made sure he was there when my brother woke up.
What is most interesting about my brother’s surgery is the fact that once his appendix was removed from his body, the doctors looked at it, and practically said “lol wait that’s one fine appendix”. They then made the mistake of telling Ryan that they had just put him through this incredibly stressful ordeal for absolutely nothing. It took hours of convincing to get Ryan to allow the doctors to run more tests, but they then concluded that instead of appendicitis, he had colitis. While my brother no longer trusted a single word they said, he took the medication and came home.
After finishing the prescription antibiotic for colitis, Ryan still wasn’t feeling any better, and wound up in the emergency room yet again due to extreme pain and the inability to even keep water down. This time, the doctors said they think he has Crohn’s disease, but that a colonoscopy was needed to obtain a biopsy to be entirely sure. Not surprisingly, while he felt absolutely terrible, my brother didn’t want to hear this. He was stubborn, and had now been misdiagnosed twice. On top of that, I’m not sure any 21-year-old guy with autism would willingly let the doctors stick something up their butt.
The doctor that day looked at my brother and said to him, “Okay, that’s fine if you don’t want to do it. But it’s no longer a matter of if you come back, but when you do. And when you do, we’re going to have to do the colonoscopy,”. The doctor was right of course, and about a week later my brother was getting a colonoscopy in the emergency room. However, he had now been misdiagnosed a third time.
On January 5th, 2018, the biopsy results came back. But instead of showing Crohn’s disease, Ryan was diagnosed with Mucosa Adenocarcinoma of his colon. Sadly, this diagnosis was right.