Friday, March 17, 2017

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.




  1. Thanks Dan for the great update! It sounds like things are progressing smoothly and it's good that she is taking things as they come rather than pushing too hard or forcing things! I love the wonderful pictures of you both at the Beach! It has always been a peaceful place and a great healer for me! Continued Love and Prayers to You Both! Love, "So Cal" Patti

  2. I feel such immense gratitude that Jess (and you) are able to have such a beautiful place to do this challenging healing process. Thanks to the kind people that offered up their home. And.. What a blessing that Jess has you as her bodyguard, best friend and biggest supporter, Dan. ...As someone just watching from the outside, It feels so good to know how much love and care Jess is getting. ...And Jess! Girl! You are doing a great job! So glad to hear you aren't forcing the progress, but letting it come naturally. What a good approach! Keep it up!

  3. Thanks for sharing Jessica's healing journey with us all. As I read about her waking up and seeing and feeling things that were not something in your reality it was scary but as I read further how she handles her limitations and can celebrate her progress I'm happy that her acceptance spills over into all the areas that she is experiencing. Big hugs to you both.

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  5. Thank you so very much for the beautiful pictures. It's so wonderful to see you both smiling and enjoying the beauty of the beach :-) :-) Can see why it doesn't feel like rehab-so gorgeous !!!
    It's good to hear Jessica is taking her progress one step at a time & not pushing herself.
    Prayers for all the upcoming medical visits next week. Hopefully they will have an answer to Jessica's "phenomena"
    So happy you got to have time away to rest and are so enjoying the lovely haven of beauty & rest your "angels" have lent you :-)
    Love, Thoughts, & Prayers Prayers & more Prayers

  6. Thank you Dan for writing such wonderful descriptions of your journey with our lovely Jessie. You are the vessel thru whom we all send our love and comfort and support. Please take care of your self. We all need you there doing what we cannot. Love to you and Jessie.

  7. Hi Jess and Dan, i have had this phenomenon before, i had it every night for a month, where id be talking to people who weren't there. this left when i came off of steroids.


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