It’s been a while since I had anything poignant to blog about. Seems each year grows worse and worse with more trials and tribulations thrown at me. It’s been almost a full year since my last entry, and after reading it, I’ve realized that nothing has changed. But I do not want to dwell on that, as I actually have something important I want to start blogging. I want a written record of what I’m going through, and I couldn’t find the proper venue, so I decided to just add it to my ROCKSTAR blog. Because after all, if I make it through this trial, I really will be able to feel awesome like a Rockstar.
At the beginning of March, I was diagnosed with a glomus jugulare tumor. It’s a benign tumor that started in my middle ear, but has grown into my head, down my neck and up the base of my skull. It has also invaded my brain and is now displacing my brain stem to the left. The tumor has damaged many nerves, including the one controlling my right shoulder, tongue, vocal cords and my face. I’ve lost hearing in my right ear completely. My right vocal cord is paralyzed, with the left starting to show signs of strain and failure. I can’t use my right arm like I used to, but it still functions minimally. My voice is harsh and I cough a lot due to aspiration, so I can’t sleep laying down anymore. Any and all airborne irritants ignite a coughing fit.
The treatment is extensive surgery that would require a team of surgeons because of the size of the tumor. It requires an ENT surgeon, neck surgeon, neurosurgeon and vascular specialist. The surgery will take three days: first day will be angiogram and embolization, second day will be tumor removed from my ear and neck, and third day tumor removed from my brain. I did not get a surgery date because the doctor who’s handling my case (Dr. Cass – the ENT specialist) said this is a massive project that will take a lot of planning, so it might take some time to coordinate everything.
On Monday, May 20th, 2013, I had my first ever jury duty. And while I was in the jury room, unable to return phone calls, I got a call from Dr. Cass saying he referred my case to Dr. Gaspar in the Radiology Oncology depart in the Cancer treatment center of University of Colorado Hospital. Dr. Gaspar thinks she can remove my tumor without the need of “extensive surgery”. So I have a consultation with her on May 30th. My feelings on the matter are that I do not want my brain fried and I would rather have the surgery, even if recovery will take a year longer than it would with the high-dose radiation.
When I found out about the tumor, I withdrew from school because it became too hard to concentrate and I was falling behind. I intend to re-enroll once my recovery is to a point that I can physically do the work and concentrate again.
It’s been hard dealing with this, because I always try to handle things on my own, not wanting anyone’s help. But this is something that is bigger than myself and I can’t do it alone. It has brought out the best and worst of my family too, and shown me who really cares about me, and who just lies to my face to get stuff out of me. My sister has been very supportive, as well as my mom. My mom is devastated and unsure how to handle this, and she’s been trying to make things easier for me, but it’s hard because my brother feels threatened. He doesn’t want to lose his Golden Child status, and feels if mom is nice to me, he loses his free-ride.
I want to start blogging the details as they happen, but I have neglected to so far because I haven’t been able to decide on a venue or delivery method (blog, tumblr, etc.). I finally decided on this blog because if I can survive this, I’m an amazing rockstar.