Saturday, October 13, 2012

Zombie

There's a little moth munching in his little garden on our deck

The testing on Friday was no big deal. Instead of doing an entire battery, they pinpointed their biggest concerns and specifically chose several tasks to measure my abilities that have been effected by the tumor. The majority of time spent Friday was actually an interview. The specialists are concerned with the effects after the first brain surgery and how I've been recovering/functioning until this point. Their whole goal is to assess whether or not Dr Linda Liau should perform a partially awake craniotomy or a regular brain surgery. At this point, they are leaning toward another partially awake brain surgery. Damn. Not what I was hoping for. Apparently my tumor is so incredibly near or already integrated into my speech and language processing area that they're afraid if they do a regular surgery too much of my healthy tissue will be removed causing serious defects. They won't make their final decision until they get the results from my regular and functional MRIs on Monday evening. I will find out their decision on Tuesday morning at 8:00 am when I meet with Dr. Liau.

My first partially awake craniotomy back in April of 2010 was exciting. It was crazy to think that they were going to wake me back up after sawing open my skull, that my brain would be exposed and that they would place electrodes around my brain to make sure that they tried to specifically only remove tumor not healthy tissue. It was fascinating. It was the first time I had ever had a surgery. It was my first stay in the hospital. I hadn't even had a cavity before. Everything was new, and exciting, and I saw the surgery as a necessity, not an option.

During the long interview on Friday, after getting the pertinent information of my current "disabilities" I believe was the word the woman used, they were very interested in the attack that happened back in July. I kept telling them that I've come a very long way and that my "disabilities" are, in my opinion, minute, but they're scientists so they like to be precise. They're not so interested in improvement at this point, their whole goal is to make sure that the areas that are in jeopardy will not be compromised. They want my brain preserved in its' best, most healthy, natural state. After that, I explained the deal with the attack and the current resolution, including the details of the criminal investigation, my involvement with the prosecutor's office, my counseling sessions, and then I continued on to explain the panic attacks that have occurred. The panic attacks are a serious concern because people have very odd experiences when they come out of the anesthesia during the surgery. Your brain is exposed, and your body is very confused, you're confused, and it can cause severe panic. Now, although I do not want to do a partially awake craniotomy, if the doctors and specialists believe that it's necessary to be awake again, I will do it. I just hope that I don't freak out during the surgery. The specialists said that if I do end up freaking out when they wake me up from the anesthesia, they will use some code phrases that we come up with together, and if that still doesn't calm me down they will just put me back under and they will cut what they need to cut. Both options sound horrible, but it's definitely in my best interest to remain calm and undergo the partially awake craniotomy to preserve as much healthy tissue as possible.

I'm so stressed about everything, the possible second malignant tumor, the possibility of another awake craniotomy, the possible issue of blood clots or other complications and the vivid memory of the pain that comes hand in hand with a brain surgery, that I can't seem to sleep. In the past three nights I've had a cumulative amount of 18-19 hours of fitful sleep and no naps. I truly can not describe how excited I am to have Danny arrive Tuesday night. We always seem to diffuse any difficult situation by finding the laughter in life. He's the most amazing man in the world. In fact, I told him that if I have to do another partially awake craniotomy, and that if I freak out and they can't calm me down, that they will just put me back under and just remove the tumor, his response - immediately - was, "Ask Dr. Liau and the specialist in Tuesday's appointment if they can scrub me in. I'm always able to put you at ease." My heart literally melted and I asked him if he could handle seeing my exposed brain, and he said gently, "I could do anything if it meant helping you." Wow. I can not believe how lucky I am. He is the strongest man I know, emotionally, physically, spiritually...in every way. I can't imagine going through this without him. I think it's harder on him than it is on me. Of course, he doesn't show it, just another way he protects me. I can't imagine if I was in his shoes. Horrible. He is amazing.

6 comments:

  1. You and Dan are an incredible team, one that Herman should know not to test. Herman doesn't have long before getting his butt kicked. I will be in the OC on Friday and Saturday and could provide any support or distraction for you or the family that would help. Please feel free to have your family call for any reason. You are stronger than ever Jess. Xoxoxoxo Lorraine

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  2. Jess, I don't remember if I told you but when I had my partial awake craniotomy last year, when they woke me up I thought I was holding onto my baby and was going to drop him. It was so weird because I knew he wasn't there but at the same time I was so convinced he was. Later they told me they had me holding a pillow for support and once they removed that, I wasn't confused anymore. I thought the pillow was my baby! LOL. It's such a strange experience to be wakened during surgery and not able to move your head, etc. I was really worried about freaking out during it b/c that's how I am. My surgeon said something like he's done it on children and someone in their late 70s without issues so don't make yourself freak out by thinking about it too much. Once I talked everything through with the anesthesiology resident the morning of surgery, I felt much better. He walked me through everything. He was the one that I could see when they woke me up and that talked me through it during that time. I'm praying for peace and calmness as you go forward! Your friend, Jessica

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  3. Dr. Liau is preforming the surgery, right? Keep that into consideration. A different doctor - especially one with her credentials and proven genius - can make this a whole new experience! Do I remember her telling you that she was confident that she could remove the remainder of Hermie? In any case, your feelings are more than valid. I guarantee you that Danny feeds off of your strength just as you do his. This new info is too much to soak in only days before a surgery. Stay strong, try to relax and fantasize about being carefree!! As always, I will be thinking about you non-stop and sending everything good your way. I know you can do this!!

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  4. Danny is a key member of team Jess. GO TEAM JESS!!!
    Hugs from Rich and Andre

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  5. "So Cal" PattiOctober 14, 2012 at 6:25 PM

    Sending more love and hugs your way! Love you Jess and I know that you and Danny can face any challenge and make it work! All will be OK, I just know it!!! Love, Patti

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  6. Jessica, show Herman this!

    http://www.nwbio.com/patient_stories.php

    It will probably make him crap his pants.

    So far you have made all of the best possible choices, avoiding chemotherapy and radiation, upgrading to better surgeons etc. I am hoping and praying for the best for you and Dan. Looking forward to a successful surgery and an uncomplicated recovery. Definitely find out if any of the supplements you are on can affect clotting btw.

    J. (from CT)

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