johnny_b

In 2003, I had double vision. I was eighteen. After a battery of tests and some general incompetence, I was diagnosed with a sinus infection, Parvovirus, and Mononucleosis. Although this was a bad diagnosis, the symptoms quickly faded and I thought I was fine.

A year later, almost to the day, my double vision reemerged. This time, it did not fade; this time, it quickly worsened. I went to the same doctors and they reran the studies they performed a year earlier. This time, I was told I had what was likely an epidermoid cyst near my clivus. Although this was yet another misdiagnosis, at least the geography was correct.

Frustrated that I had been misdiagnosed previously, I ventured to New York City to get some consultations with surgical superstars. All of the "superstar" consults suggested the likely diagnosis was Chordoma, which would soon prove to be the correct diagnosis. After four or five different surgeons offered four or five different surgical approaches, I settled on Dr. Jeffrey Bruce at Columbia Presbyterian.

Dr. Bruce was going to perform a transsphenoidal resection of my clival Chordoma tumor. It seemed like the least scary, least risky, and most rewarding of the options — but it was still terrifying. Transsphenoidal means going through the sphenoid sinus, which entails sticking surgical implements through your mouth, nose, and sinuses. The clivus is this really delicate region in your head. It acts like scaffolding for some of the cranial nerves. Next to these nerves are the two main arteries that feed your brain. Behind that lies your brain stem. Like I said, terrifying.

Happily, my surgery went well and Dr. Bruce was able to get a full resection, which is to say, he got all of the tumor. (I just glossed over about sixty pages worth of details.) Three months after surgery, I started the first organization dedicated exclusively to funding Chordoma research, The Chordoma Research Foundation. A few years later, I would dissolve my organization and fold my assets into the subsequently formed and better organized Chordoma Foundation. (Now I just glossed over about eighty pages of details.) Although I abdicated responsibility, I have stayed very active in the Chordoma world.

I am now seven years recurrence free, which is a fantastic outcome for someone with Chordoma. Unfortunately, Chordoma is a very resilient type of cancer with a high rate of recurrence. It is unlikely that I have been cured, and Chordoma is largely considered incurable. Consequently, I have spent about seven years thinking — to the point of counter-productive obsession — about cancer research, non-profit fundraising, and support communities.

I currently live in Washington, DC but I’m from New Jersey. I’m in grad school at George Mason University studying computational social sciences. I've been programming since around fifth grade and I enjoy modeling things. Soon, I hope my background and continuing studies will allow me to build some really cool tools for non-profit fundraising and community building.