Day 2 in Houston

Posted by Casey on January 18th, 2007


Today was a bit rougher. It started with a 6:30 MRI of my spine. The doctors wanted to make sure that the tumor hadn’t spread there. It was two hours of sitting motionless in a loud, clanking tube. Not fun. I slept through a bit of it, so luckily I wasn’t awake the entire time.

Later on we met with Dr. Weinberg, a neurosurgeon. We discussed my history… the previous cancers, the treatments, all of it. He then did a full exam of my senses and motor skills, including sight, hearing, touch, strength, reflexes and vocal skills to check whether the tumor was effecting these things. I passed with flying colors.

We then discussed all of my MRIs. The films taken this morning of my spine were fine. No tumors or any concerns there. In reviewing the films from my first diagnosis, and comparing them to ones taken a month later, there was one area that showed change. He said there’s no way to tell if it’s spreading or not, that there are other possibilities, but that it could be a sign of growth.

He said that, all things considered, he recommends having surgery in the not-too-distant future, and walked me through various areas of the tumor and how they affect various parts of my body, as well as which parts of the tumor can be removed, and which ones can’t.

We discussed the possibility of me having Li-Fraumeni syndrome, which is the official name for the P53 gene issue I’ve mentioned, and its possible side issues moving forward with treatment. We will have confirmation of this once I receive the test results, hopefully next week.

The hardest part was discussing risks of the surgery. He said that it’s a guarantee that I will lose a portion of my sight. If you think of your field of vision as a clock, the loss is the area between 12:00 and 3:00. I could also lose my ability to speak, depending on how much of the tumor they try to remove, and also depending on whether the majority of my verbal skills are controlled by the left or right side of my brain. This is something they would test prior to my surgery. The other risk is paralysis. Because of where the tumor is located, there is a risk of losing motor skills. At this point I broke down and wasn’t very able to speak anymore… it hit me pretty hard, as the worst thing I can imagine at this point is putting myself through this surgery and waking up unable to move. Dr. Weinberg said I would most likely be awake for the surgery so they can test my various skills as they do their work to minimize these risks. This wasn’t exactly a comforting thought, but I will have to do what it takes.

His nurse listed some possible surgery dates, just as options, and they suggested we go home to think about all of this. That’s definitely something we’ll be doing. It’s an awful lot to consider.

More to come…

4 Responses to “Day 2 in Houston”

  1. “I’m fortunate that I can tell you this in person. In the rare times, though, when I’m not able to like this week, here it is:

    Ten years ago you went through some of the same things you are going through now, and you made it. I didn’t know you during that time, but I know that those experiences shaped who you are today. They infused in you the qualities I love most: A solid perspective on what’s important, appreciation for loved ones and for life itself, humility, humor, hope and strength.

    The experiences ten years ago were tough, as you’ve recalled through many stories. But they defined you and shaped you in positive ways. I believe that the times you’re going through now will, in the same way, bring more blessing than trial.

    I didn’t know you ten years ago, but I’m immensely grateful that I do now.”

  2. “Casey,
    You are an amazing person. You’ve been through a lot and survived with grace and style and a wonderful sense of humor. I can’t imagine what you’re going through, but please know that I’m here if you need anything.

    And remember: the milk’s still warm!


  3. “Oh honey… Thank you for keeping us all posted.
    Love, Kat”

  4. “hey casey,
    thanks for sharing all of this. your strength, courage and sense of humor continually leave me in awe. i’m in the middle a moment when words don’t seem to mean very much. but i wanted to tell you that you’re in the thoughts and prayers of many people right now. and i hope you can feel something good coming from that.