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.



 


   

A beautiful way to recover

This is Dan,

We are so fortunate to be recovering in such an amazing place. Motivated by amazing scenery and gorgeous beaches Jess has been persistent with her multiple daily walks. Her coordination is ever increasing and she is getting faster and faster. To a passerby, she would probably appear as a normal person casually taking a slow stroll. What you would not see is her focus and determination to go just slightly farther then she did the day before. The home that we were so gracefully allowed to occupy feels like something created by Jess herself. It exudes happiness and surrounds us in a calm demeanor. Jess's speech is slowly improving through normal conversation, and at times surprises me with complex ideas or elaborate vocabulary. On the same hand, once her stamina runs out, and she starts to fatigue, her words and pronunciation quickly deteriorate. Her ability to identify written words or letters is still her biggest deficit. She is taking it in stride because she knows some things take longer then others, but still has frustration at her inability to write her own name. On our morning walk we were discussing the differences between the last two brain surgeries. The most recent surgery left her with a better handle on verbal communication, compared to written communication. The previous surgery left her with a better ability to write then to speak. She used the blog as a way to express herself, because her verbal communication was lacking. Its interesting to contemplate the brain and how stress or trauma in different areas can affect someone so differently. 

Thanks to the kindness of our surgeons assistant, all our Dr appointments are scheduled for next week. It is odd to wait so long to hear any information or to have a Dr evaluate Jess, but it is a relief to have an entire week to allow Jess to heal and get her bearings. As always, she is eager to push herself and to accomplish the next task. I am finding myself in the familiar position of continually pulling her reins in. I do have to admit that she has a better understanding of pacing herself then she has ever had before, but still, it is Jess we are talking about. Just this morning she asked me to look into some hikes that are close by. I told her I would but reminded her that pushing it too hard always comes back to haunt us later. Push too far in the morning and it is back to bed for most of the remaining day, push too hard at lunch and it is a bad headache when she's trying to sleep. It is a difficult balance between moving forward and getting better and over-doing it.

Sorry it has taken a little while to post. It took a few days to get into our routine and get everything squared away. Jess is on a large regiment of pills to help her heal from the surgery. She is taking 66 pills a day with no break between pills longer then three hours. The pharmacist essentially just went over what pill did what, then handed us a bag full of 14 different bottles. Some are every three hours, some every eight, others twice daily, some need to be taken with breakfast or dinner, others are not scheduled and only need to be taken as needed...ect. We have created a daily regiment that seems to be working as best as it could. Jess has recently been finding herself awake and alert at night for a few hours but we have yet to determine what is causing that and if there would even be anything we could do about it. I feel that as long as she is getting enough rest overall then it is not terribly detrimental. When you mix this regiment of pills with rehabilitation then add a normal days activities, time can get away from you pretty quick. I will attempt to keep everyone up to date from here on out.

Took advantage of some morning mist to escape to the beach.

Warning!!    Warning!!    Warning!!     Warning!!    Warning!!    Warning!!    Warning!!    Warning!!

Some People have asked to see Jessica's scar from the operation, if you do not want to see the scar then do not scroll down any further 😀

Home Sweet Home, Temporarily..

This is Dan,

We finally made it out of the hospital about five hours after they thought we would, but at least we made it out. It was a stressful day for Jess. She had multiple appointments with different doctors discussing our upcoming appointments and our regiment of medications for post hospital life. She meet with physical and speech therapists about continuing therapy after discharge. She meet with pharmacists to discuss what each and every medication was and how it would be administered. Once each meeting was over, she would look at me with the expression that I had become familiar with. It was an expression of "do you understand what he just said, because I sure as hell don't". It usually was followed by a look of frustration for not being able to understand things that were simple to her eleven days ago. Any papers, handouts or business cards were quickly passed along to me. Even the basic alphabet eludes her now, and most of the words written on her prescriptions were tough for me to say.

She also meet with Fred, but more about that later.

We packed up our belongings and Jess got wheeled down stairs. We had to stop and put on sunglasses for the bright lights, ear plugs for the extra noise and had to get the transit nurse operating the wheel chair to downshift from 5th to 1st gear. We knew the trip would be stressful but did not think it would be so tough on her just to get to the lobby of the building. We got a car to transport us to our temporary home and had to give the driver specific instructions about driving with over-emphasized caution and as little quick movement as possible. The Driver was very conscientious and drove as best he could but it still took its toll on Jess. She toughed it out as she always does, but I was happy to see the drive come to an end. The difficulties of our transportation were quickly pushed to the back of our mind once we arrived at our new temporary home. Tami and David are two incredible people who have offered us their home for the duration of our stay. They only briefly meet us but were gracious enough to help us in such a extreme manor. Their home is wonderful, and I could see Jess's shoulders drop about 100lbs as soon as we walked in. We could not have picked a more perfect situation for Jess to heal in, and there are not adequate words to describe my level of appreciation to them. Thank you.

We know that we still have a tremendous amount of work to do from here on out, but leaving the hospital and being allowed to live almost as normal people, is going to have an insurmountable effect on our lives. Jess will begin the long process of rehab tomorrow and hopefully you guys will be reading her words in the near future. Until then, please remember she has extreme difficulty with the written language and cannot read text or email from anybody at this time. Hopefully everyone understands and does not take her silence as an insult.

It was not all bad getting delayed a few hours at the hospital, Jess did get to meet a new man in her life. This is Fred, he is a patient canine connection dog. He was by far the best part of the hospital stay and Jess nearly lost it!!

Jess was looking good when she left the hospital thanks to a wonderful gift from our friends Stacy and Guy. Thank you.