Jess Offcial Post

It's jess nere, and I am so happy to try my first post I am pecking away left finger, my right sisde is no good. My whol right body is messed up, to the pont thap oor Dan must take care of my potty. And all needs do most all. We just laught, these days, and I smile in haditude. 

Dan approved ny plan for a new post so that I could connect. Ok I need to rest, and I do, but I am a connecter. I ty to try with friends but not allmakes sensebse, I'm hoping you will understand me, and we can hulp me grow and love and live. Becasuse your comments make me feel so loved, soroted, and cared for. You encourage me, and espires me.

Just right now I ecstatic to be trying this right now!

I feel my brain grow, my soul expand. In ripe now I hear a deecate owl, so gentle, just a house rear.

I have so many insighteests, so many feelings. I feel rure joy and raditude, every second. I laugh nobsop, and oooo at my husband, ahat he has no lomit on what he will do for me. And my love and respect to him shaters expectations. I never krew I could love him more, bit I can, and I am now. 

Dan makes me feel powerful, capable, funny, sexy - and ge sill has to hive me sasppotores, for consetation, so this no small feat.  

I thank god ever moment for each moment, I scuggle softly bed, and coress his mack while he purrs med app benween meds. Be probably doesnt even know as he is easy to snooze cause he's fitred.     

Im dedicated to his happiest life. I live to make him smile, and feel my love. This time together is a dream, and gift, and is completely evolve our bond. We are our own habitat, our own rare species. 

We don't yet biw the treatment reatment, or all the things to expect - my status, what my life will look, but I have dan with me, and for now, that's all I need to know. We always choose happy, even when life is scary and uncertain. All life is unsertan, it's a so fang fun. We choose joy. And gratitude. And laughter.

I share in the blog because I can, because it's real. I don't know this is why is nine to live, but it's beautiful, and I am so happy to ne here! 

Tens of times a day I choose choices to cloose happy or be cranky. Or be sad, or bitter or elated. By I see no joy in being wasting time. Even in sadness. Sometimes I have to stop and say to dan sorry for being short, when trying to do small things I used to able to do.  And he smiles, and he hugs me, and we kiss. Life really is basic. We try to give grace, hug, thank all the time, no thing is too small. This journey is clearly dufty, but I love it too. The challenge, the exploration, and the beauty. 

I am so happy to be here on Earth. Thank for helping me facilitate this dream, of life. I am loving you.

Snake Charmer

This is Dan,

We decided to venture away from the beach today and went the opposite direction into the hills for a quick hike. It was about a 20 minute drive, which is enough of a challenge for Jess in itself, then we proceeded to walk for another 30-45 minutes. We were on our way to a lookout point, when our hike was abruptly cut short by the familiar, but still terrifying, rattle of a rattlesnake. We both have had encounters with rattlesnakes before which helped us determine what was going quickly. It was sunbathing on the side of the trail and did not appreciate the intrusion. Luckily it gave us plenty of warning and we were more then happy to simply turn around and proceed back the way we came. Jess was walking in the front (to show her independence) and did a good job of recognizing what was happening by standing still, but did not have the dexterity to walk backwards or to turn around abruptly. I picked her up (probably rougher then i intended) and pointed her in the direction we had just came from. We continued for rest of our hike without any more excitement, but did appreciate the change of scenery and the challenge of walking off road. Between the driving, hiking and the excitement of the snake, Jess was pretty drained when we got back and shortly took a nap. I think if anything, the snake was simply reminding Jess that she should not overdue things and should probably head home to rest up. If only Jess listened to me as intently as she does a snake.

 

Is This Your Brain On Drugs?

This is Dan,

During these past few days of recovery Jess has experienced some strange phenomena. She felt it necessary to describe to people what was going on even though she did not really understand it herself. Often during the night Jess has manifestations of things occurring that are not actually happening. She will have lengthy conversations with people who are not there. She will believe she had conversations with people who are there (me). She will often have the sensation of being back in the hospital. One particular time she was awaiting a blood draw and kept asking when the nurse was going to come in. Regardless of how many times I explained that she was not in the hospital anymore her questions and concerns lingered. Only once I told her that the nurse said there was not going to be any blood work tonight did she relax and fall asleep. It would appear that the trauma of being in the hospital is still very much with Jess. Getting her Blood drawn was always a source of apprehension due to the fact that she had categorically difficult veins to puncture. Because of this she would experience a tremendous amount of pain while the technician maneuvered the needle in her arm attempting to hit a vein.

Two nights ago, I woke to find her awake in bed. We spoke for a few moments and I could tell that she was not exactly 100% in the here and now, with her believing she was at the hospital again. She calmly asked me a question that quickly cleared the fog from my head and woke me up. "Are they going to hang me?" she asked. I assured her that no one wanted to hang her and she responded with another equally calm question "Am I going to hang myself?" she asked slightly confused. Again I assured her that she did not want to hang herself and that nobody else wanted to hang her either. "Then why is there a noose?' she said to me as she pointed to an area somewhere above the foot of the bed. Again, I assured her that there would be no hanging of any kind, which seemed to satisfy her, and she went back to sleep. This is the conversation I remember the most because of the strange topic, but there are many perceived conversations that she has during these odd hours on the fringe of sleep. She can remember them in the morning but needs some prompting to recall the details. Whether it is the vast amount of drugs she is taking or some new addition to her life caused by the brain surgery we are not yet sure. She is confused and fascinated by this new development. I think it stems from her curiosity. How can the brain create such vivid actions without one being aware of it?

On to a new topic..

Jess is continually getting better and better. As we expected, some things are coming much quicker then others. Her walking has improved drastically, to the point where there is hardly a noticeable mis-step or awkward stride. Uneven terrain can cause some apprehension, and the stamina of her healing brain cannot keep up with her legs, but overall it has, and continues, to improve dramatically. Her vocabulary continues to become more elaborate and her word finding problem is decreasing steadily. We are working on dexterity activities for her right hand and although improving, Jess is still operating strictly left handed. Some words and letters are slowly coming back, but they are hit or miss with no logical pattern that I can decipher. In all, Jess is taking it in stride and with a tremendous amount of grace. She is not attempting to constantly break through these barriers, but rather letting skills come back naturally as her healing progresses. This was something we had difficulty with after the previous surgeries. She felt that if she worked hard enough things would come back to her. We realized that if the brain was not ready for a particular skill it did not matter how hard you tried to learn it. It is the equivalent of breaking your leg and trying to run before the bone is healed.

Starting on Monday we begin our follow up appointments at UCLA. We will be meeting with radiologists, neurosurgeons, neurosurgeon assistants, oncologist and many more. We should hopefully get more information on the pathology of Jess's tumor. Up to this point it has been wonderful to solely be focused on Jess getting better without any other distractions or major questions looming over our heads. We always appreciate more information to help us make our decisions, but it was nice to have some time to breath. Anyway, next week we will have more information to provide you with as to what direction we will be heading from here.

As always, we appreciate everybody's support and Jess wants everyone to know that she can "feel everybody's love and prayers, and it carries me"


It does not feel like rehab when you get this as your walking path, but between walking in the sand and traversing over rocks it is a great exercise for her to get her coordination back.