Thursday, July 12, 2012

Changes

It's been a rather full two weeks - I had brain surgery, spent two days in the hospital, came home with twenty-three staples in my head, and got a new diagnosis.

First, the good news: the surgery was a success.  My tumor was safely debulked and enough tissue was removed to bank for a potential future treatment.  I knew thirty seconds after opening my eyes that my sight hadn't been damaged during the operation which was a tremendous relief.
I felt pretty good the first twenty-four hours and then day two got off to a bad start with a miserable MRI and didn't improve from there.  UCSF is in the process of shifting to a new patient management software and I must admit, it was pretty damned annoying.  Time after time a nurse would enter the room and spend fifteen minutes clacking away on a keyboard without even glancing my direction.  I found this to be nothing like my first hospitalization at UCSF and a move in the wrong direction.
I've been home a week now and every day I've gotten stronger and felt better.
I saw my neuro-oncologist yesterday and to discuss treatment going forward.  I also found out about the specific pathology of the tumor.  Unfortunately, the tumor is growing and the grade has increased from a 2 to a 3.  The good news is that I didn't leapfrog grade 3 and jump straight to GBM which is something that can occur.  The change is not super dramatic but significant particularly when I have been so stable for so long.
So, the time has come for radiation.  I'm still not thrilled about it but I am resolved that it is what I need to do next.  I'll meet with a radiation oncologist next week and I most likely begin sooner rather that later.
I feel clear, strong, and in good spirits.  I appreciate all the love that has been sent our way - Steph and Walt feel this as well.  It is another trial that we will face and emerge from.  Honestly, I've pushed the envelope by going this long without any progression.
I'll have more to write soon but I wanted to break radio silence as soon as I felt able.

7 comments:

  1. Thanks for the post, dude. Talk to you soon.

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  2. OK. I'm going to go play Asteroids now so I can blast your tumor. Pew pew pew! Don't worry, I will be very precise.

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  3. The way you and your beautiful family are handling this is nothing less than amazing. I love the way you just do what needs to be done without complaints or feeling sorry for yourself. You are an inspiration to those of us with lesser challenges. And I have great confidence that you will get through this next challenge and go on to do amazing things. Best of luck.

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  4. Chris So Glad your sight is OK, that's good news... I know radiation sucks... I don't know what I would do in your shoes and getting down and dirty. I wish for you to defeat this. I know you can!!!

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  5. So happy to hear the surgery was a success, even if the grade has gone up - so it seems that it was the right decision? And very happy to hear you've retained your vision!

    Uh, kind of on the fence about quiet nurses - Kaiser nurses tend to share a little toooo much.

    Lots of love and healing power headed your way!

    Shirley

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  6. Thanks Chris for the post surgery update. Getting back online was relatively quick, which is a good sign in of itself :-) Relieved to know your eyesight is intact. I know that moving forward with radiation treatment is not an easy decision, but we are all here to go through it with you. Keep us posted...Vicky

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  7. The TRANSPERS team is glad to get some news and sending positive vibes your way! I did have to chuckle though - I have been hearing a lot of complaints about UCSF's switch over to electronic health records that requires much typing....and many of the docs don't know how to type!

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