Final Note Before Surgery

I check into UCLA's Ronald Regan hospital at 4:45 am. I am the first brain surgery of the day for Dr Linda Liau. I keep calling it my brain tumor nap :) I'm so grateful that I get to sleep through it. I am nervous, still apprehensive about things, which I believe is completely normal. They are going to shave off a running strip across my head from front to back. It should be about three inches wide (imagine a reverse Mohawk). I have really enjoyed my hair, and I am too attached to shave it this time. Instead, since Dr Liau said that I wouldn't have to shave it all, I decided I will try to work around it. My girl friend Meghan cut her hair today (it's her 30th birthday) and is gifting it to me so that a gentleman in Bellevue can create a wig for me (he can do a full wig or a partial). Seriously, you heard me right, Meghan cut her hair, 10 inches to create a wig for me on HER birthday. Wow. That's Meghan for you, always doing things for other people. THANK YOU MEGHAN!!!!!! More details about that amazing situation to come. Also, my childhood buddy Marina came over for breakfast this morning and she started cluing me in on all the amazing things that fake hair can do. Originally, I was just going to use the hair on the sides and back of my head and put it into a ponytail and wear baseball caps for the next several months. Now, it looks like I will have lots of options :) That makes me really happy!

Anyway, I'm absolutely exhausted. Dan arrived last night, and my brother arrived this afternoon. While my parents were driving to get Kaal, Dan and I went to the beach and swam. There has been an incredible heatwave. The temps are in the 90's - scorching. While we were at the beach we were able to watch the dolphins play in the waves. They were having so much fun! They're so playful and sweet, it was amazing. We watched for about a half hour, then decided to join them. I was hoping to inch my way closer and closer but I think I scared them away. They did a final swim through the wave, you could see them as the wave grew and they were gliding with it, when the wave broke they jumped into the air to avoid the froth. It was mesmerizing.

For this surgery they made me remove my toenail polish. Weird.

I'm rambling because I'm so tired. I haven't packed quite yet (we will be moving locations while I'm in the hospital) and I need to wash and blow dry my hair. My plan is to straighten my hair and then pin it back on either side of the current scar exposing it as clearly as possible. Hopefully, once they see how wide my current scar is, they will decide that they don't need to shave much :) You never know.

As for tomorrow, Dan said he will keep the blog updated. I truly hope that everything goes well. Most of all I hope that I don't die. I don't know what is in store for me, what my purpose is on this Earth, but I'm truly excited to find out. I'm hoping that this isn't the end of my story. I hope that I can continue to learn, evolve, fight to get healthy, hug friends, jog in the misty Seattle air, cuddle my kitty, and maybe, hopefully, someday, share my love with Dan by having children. There are so many things that I'm hopeful for. I am very aware that my life is a gift, that each moment is all that I have until the next. All I can do is hope for more, more time, more opportunity to love, more time to laugh and hug and smile and breathe and appreciate the things in this world.

Thank you for the love, for the support, and for the prayers. It would be impossible for me to be faring this well without all of you - Dan, my family, my friends, the blog readers, the friends of friends, the people who stumbled upon the blog. Thank you. I have so much gratitude and love to all of you. I hope to be writing again soon, but until then, even though I don't even know who all of you are, thank you.

All of my love,
Jess

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.