Now that the tumor was found, the realization of what all this could mean started to hit me. I hadn’t even thought much about the money part at this point because I had a good job with pretty good health insurance. As my symptoms got worse, and my trip to Charleston for my consultation with Dr. Patel was approaching, I started sharing with my supervisors more details about what was going on. I let them know that a brain tumor had been found and that due to its location, (geographic center of the brain), that very few surgeons would touch it. I told them about my upcoming consultation with Dr. Patel to discuss surgery as an option. A few weeks later, about a month before my consultation, I got fired. (That story could be an entire blog in itself.) I lost my job, and with it, my health insurance. WTF was I going to do now!? I freaked! I finally was going to get to see one of the leading specialists, in the world, for my kind of tumor and now I had no health insurance. I felt defeated. Not only did I have to prepare myself to travel 1200 miles to Charleston, to discuss the real possibility of having brain surgery (wtf!?), but now I had to figure out how to pay for the consultation, and, ultimately, surgery/recovery.
I cried. Ugly cried. I broke down and felt like just giving up. Wtf was I suppose to do now? After talking to friends and family, we decided that I was too close to getting real help to give up. My symptoms were getting worse, quickly. We decided that I would go ahead with the consultation. I needed answers. Also, the fact that Dr. Patel requested to see me in person, after he reviewed my scans and discussed my symptoms with me over the phone, made me believe that he wasn’t going to dismiss me and my symptoms like everyone else had. He and his staff were very clear that they would not make someone travel that distance for a face-to-face appointment if he didn’t feel that he could help. After talking to the financial office at the hospital in Charleston, as well as with other people that had had the same surgery that I was preparing for, I had a pretty good idea of what all of it was going to cost. For starters, the hospital required a $29,000 down payment BEFORE surgery. The total for surgery was estimated to be around $100,000 (surgeon fees, 3 days in hospital, anesthesiologists, hospital fees, etc). Plus, we had to travel 1200 miles, one-way, to Charleston for surgery. It was also suggested that we stay in Charleston for around 2 weeks, until after the follow up visit and staple removal, to be cleared to go home. So add the expenses of room and board, food, etc. for myself and my family.
I remember sitting down and writing out the list of all estimated expenses. I sat and stared at it for a long time. All I could think was “how in the f@&k are we going to do this!? Was this really what it came down to? My life as a price tag? WTF!”
So what did we do? Everything we could! We dropped our egos and asked for help!We launched a full on fundraising adventure. I set up a GoFundMe campaign explaining my situation and shared it with everyone I knew. We planned a benefit with a spaghetti supper, live music, and silent auction. We called, emailed, and sent letters to churches, organizations (American Legion, Elks, Eagles, United Way, etc), radio stations, and television stations. We asked businesses for donations for the auction. We had fundraiser nights at local restaurants (Taco Bell and Pizza Ranch). I designed a brain tumor symptom awareness logo and sold T-shirts and hoodies with the logo on it. The amount of support that I received was amazing and overwhelming. I sold shirts and hoodies all over the USA and even in a few other countries. The biggest support came from my parents. My mom cashed out part of her retirement to make sure the $29,000 down payment was taken care of so surgery could be scheduled. It took a LOT of work and the fundraising continued even after surgery. The hospital offered a discount for self-pay patients and we were able to set up a payment plan for the remainder of their bill.
So what in the actual f@$k is wrong with these companies, and especially the health care system?! Without the help and support of family, friends, and strangers, there is a real possibility that I may not even be here to tell my story today. We aren’t “patients”, we are customers. They put a price tag on our illnesses and recovery as if they are an option. Can’t pay? Live with the symptoms then. Until you can’t even afford to do that. People, many that I don’t even know, helped save my life when the health care system was complacent in the reality that my tumor could kill me. What the f&$k is wrong with this picture?!
In part four, I will talk all about the trip to Charleston for surgery/follow up, how I had a mental break down half way there and wanted to come home, and how i spread awareness and free art the entire way there and back.
Thanks for reading and stay tuned for Part four: WTF am I getting ready to do!? I can do this! No I can’t! Ok, here we go!