It was like finding a needle in a haystack. It was Friday, June 26, 2015, one week after I was discharged from Brigham and Women’s Hospital where I had brain surgery to remove a pituitary tumor. My parents and I were back at the hospital to hear the outcome. I was very optimistic that day. I knew it was a success; it had to be. I hadn’t endured a brain surgery and three days of blood tests for nothing. We were called by the receptionist to one of the exam rooms, where we met Dr. Laws, my neurosurgeon. He didn’t look happy. I didn’t think much of it, until he showed me a spreadsheet displaying my cortisol levels. It clearly showed the levels were up, when I knew that they should be going down. The weight of the surgery’s failure hit me.
Three months prior, I had been diagnosed with Cushing’s Disease. My body was overproducing cortisol, leading to weight gain, weakened muscles, and a whole host of other delightful symptoms. For three years before my diagnosis, without explanation, I had been putting on weight at a rather rapid rate. The incidence rate for the disease is one in a million per year, and diagnosis is extremely difficult. My primary care doctor initially suggested a blood test for this rare disorder in 2013, but the tests came back normal.
I had gone from a skinny kid to a fat, short, moon-faced fourteen-year old. I was not a pretty sight to behold. The disease took its toll on me during the ninth grade. Early on in the year, I was forced to replace cross country with physical therapy due to muscle weakness. Headaches also affected me weekly; painful headaches that would last for hours on end.
Then, in March of 2015, doctors at CHOP diagnosed me with the disease. This was tough news, but I still couldn’t help but feel relief; The next three months were a whirlwind. I would leave school early, or sometimes even miss a day of school, and travel to either CHOP, or the Perelman Center to undergo multiple tests. This all led up to my pituitary surgery in Boston in June 2015 and ultimately that bad news. I was devastated. After enduring three months of tests, brain surgery, and a painful recovery, I was still not cured. I was ready to let the disease be. I just wanted to have a normal summer break and school year. But, with newfound determination, I decided to go through another series of diagnostic tests at the NIH and a second surgery. And this time, success!
This would however not be the end of my struggles. One thing that most Cushing’s patients have to endure after surgery is cortisol withdrawal. In order to keep myself from going into an adrenal crisis, I had to take hydrocortisone tablets until my body could start producing cortisol normally. In some ways, the aftermath of the disease was more brutal than the disease itself. Nevertheless, I was able to successfully complete both my sophomore and junior years of high school.
I certainly learned to appreciate my own perseverance over the past few years. However, I also learned a great deal more from those who supported me throughout my experience. From my primary care physician, who first asked me to get tested for Cushing’s in 2013, I learned the value of astuteness.
From both my endocrinologist and neurosurgeon, who before the second surgery promised to “fix me right up,”—even after the failed surgery—I came to appreciate the value of persistence.
My endocrinologist, Dr. Kharlip in particular, helped and supported me from pre-surgery through recovery. Marie and Conley Cushing’s Disease Fund also helped me post-surgery by allowing me to share my experiences with others like myself. Indeed, because all those who supported during and after my struggle with the disease, I was able to become a better person.