Tuesday, October 16, 2012

Best Case Scenario :)

Well my friends, you have done some serious praying!!! We have fantastic news!! Thank you for working so hard to pray on my behalf, for all of the love, and positive energy sent our way. I'm going to give you the run down from our appointment with Dr Liau and her assistant Emma who runs the clinical trial.

1. The second possible tumor is in the pineal area. They do not believe that it is tumor, although they will continue to track it and have me do Dopa PET scans at a regular 6 month intervals to monitor the situation. They have seen a similar situation in several other tumor patients and they wonder if it's due to excess stress, or irregular sleep patters. The pineal gland regulates circadian rhythms. Does not look like a second brain tumor!!!

2. After reviewing the fMRI with Liau, it is clear that my speech area is not near the tumor. The tumor, instead has grown into my motor skills, and sensory area. Fortunately, you do not need to be awake for the testing of the motor skill or sensory area. During a regular brain surgery, they can poke certain nerves, or stimulate different brain tissue to check and see if they're dealing with brain tissue or tumor tissue. They can do all the testing they need while I'm fast asleep. No need for a partially awake surgery - just a regular one!!!

3. The regular MRI shows that my tumor is still not taking up the gadolinium dye (which would signify that Herman had progressed to a stage III or IIII), which would mean that I'm still at stage II. This is just a preliminary prognosis, they will know for sure when they get the pathology back after the brain surgery. Sometimes a stage III isn't taking up the dye, even though it has progressed - so no guarantee, but it's a good sign. Looking good for a stable stage II infiltrating astrocytoma!!!

4. I will be the first brain surgery of the day, this Thursday the 18th of October. The procedure should take about 4.5 hours. If all goes well, I should be released from Ronald Regan Hospital sometime Sunday.

5. After I'm released from the hospital I will come back for a suture (staples) removal. Then an appointment to get the pathology of the tumor. Unless there is some unforeseen event, I should be flying home on November 2nd in the evening.

6. Dr Liau believes that this surgery will improve my quality of life. She believes that removing the tumor will allow my body to continue to gain back the language skills that were damaged after the first surgery. They reviewed the results from the cognitive testing from last Friday and they do see deficits, but they believe that with time after this surgery I will continue to improve.

7. If there are complications from this surgery they are anticipating that they would include the inability to feel things on the right side of my body, or difficulty with moving the right side of my body. If that is the case, Dr Liau believes that with dedicated physical therapy I will be able to completely regain any lack of sensation or mobility. She feels confident and (in my opinion) excited for the tumor resection, believing fully that this is going to be a huge improvement in my life and in my future. She is the most humble doctor I've ever met, with a healthy amount excitement and immense curiosity. I wish you all could have been in the appointment. I have complete confidence in her. In fact, I wish we could hang out, I'd love to be friends and hear all about her research and views on life. The woman is interesting in so many ways.

8. If all goes well, I will fly back down 3-4 weeks after the surgery for them to harvest my white blood cells. I will then fly home and come back down to UCLA one week later for my first shot. There is a chance that there will not be enough tumor tissue to give me a personalized vaccine. There are a few other factors where they have to analyze the tumor proteins to make sure that it will work for the vaccine. There are a lot of factors that we will not know about until they have the tissue in their hands and can run a battery of tests. Fingers crossed that I'll be able to get the vaccine. If not, at least they will have the tumor tissue out of my brain. Adios Hermie!!

Here's a photo of mom, dad, and I after the appointment. Mom wanted to celebrate the great news with a group photo :)


 Here's another photo that my mom took as they were about to send me into the fMRI machine yesterday. That was a crazy experience. I was absolutely exhausted after that. Completely spent. I'll tell about it another time.




20 comments:

  1. What a blessing! Oh Jess this is the most wonderful news!!! So exciting to know that Hermie is on the way out and that your life will get even better! All of us who love you will be cheering today! Love the photo of you and your folks! Keep moving forward knowing that the answer you have searched for has arrived! Love, Patti

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  2. Oh man. That was stressful. I know what it feels like to get all of that testing and then have to wait to hear the news. So glad that it went so well - you must be over the moon! Bring that positive energy into surgery day. Josh

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  3. AWESOME!!!!!!!!!!!!! I have nothing but positive feelings about your surgery and vaccine results and am so happy for you and excited for your next big adventure. Congrats!!!

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  4. HOORAY! Such fantastic news. Continuing to send positive energy your way for Thursday. Big hugs! Sara

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  5. Fuck Yeah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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  6. Jess this is fantastic news!!! I have been thinking about you all morning and am so happy for you and your family. You are an inspiration. Keep up the good spirits and fighter in you, this is one giant step forward, YAY, and so much attributed to all your hard work and dedication.

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  7. Yeah, Jess! So Excited to hear that. I am so glad that you are seeing Dr. Liau. What an answer to prayer. I'll keep praying for good news from the pathology and that they will have enough tumor for the vaccine. Best wishes to you. Jessica

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  8. Nice! got an e-mail update from your blog and it is good to hear that things are going your way. Will keep the prayers rolling in for you.

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  9. Tears of Joy! I will continue to pray and look forward to an official going away party for herbie!

    Love and Hugs...
    Rich and Andre

    I knew all those rainbows around every corner was a good sign. PTL

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  10. That is amazing news! So happy to hear it. :) Will be thinking and praying for you on Thursday.

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  11. Jess,
    I've been reading your blog for a long time and haven't commented until now.
    You are inspiring people around the world and changing lives through your experience.
    There are so many people in your corner, praying or sending you limitless positive energy. You have an army behind you now!

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  12. AMAZING!!!! This makes me soooooo happy!!!! The power of prayer is an amazing thing...and so are you, my friend!!! Go kick this tumor's butt on Thursday and we will be cheering for you on the other side of it ;).
    XOXO
    Nancy Bean

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  13. Jess - I am so happy for the positive news on your upcoming surgery. Time and again you have helped so many of us find our strength, face our fears, sort our priorities, treasure our lives.
    I have you on my "schedule" for Thursday morning and I am going to be visualizing, affirming and praying that your surgery is an extraordinary success. I believe your brilliant surgeon will do superb work and I am asking that angels oversee every detail of your surgery, that you be safe, protected, that the highest possible good and greatest possible healing take place.
    Love, C.

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  14. there was the most amazing rainbow over Wenatchee yesterday morning...I watched it from the windows at work and it came and went for hours...must have been a sign. Prayer for you and Dr Liau will continue. Love, Jennifer

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  15. Stacy Poche' PeraltaOctober 17, 2012 at 9:15 AM

    I just wanted to let you know that I am a person that follows your story and prays for you...a "silent" friend. I'm positive you have move love and support from others than you'll ever know. You are amazing Jess!

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  16. Jess-Sending lots of love and positive thoughts your way!
    xoxo
    Candyce

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  17. Such great news Jess!!! We will continue to pray for your health. For Danny, Bonnie, Bob and Kaal to have peace. And for Dr. Liau to perform with remarkable precision during the surgery. You have our support and love Jess.
    Erin

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  18. This is such great news!!!!! We have been praying and wishing for the best possible outcome. Angels come in every form even Doctors. Give you Mom & Dad a Hug for us, and we will be sending you prayers, love and Angels on Thursday

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  19. So very very excited, hopeful and relieved for you and your family!!! This is wonderful news!!

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  20. Still doing a happy dance! Can't wait to celibrate your next victory! Love, Melissa

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