On My Terms

I've been resting. I've been healing. My progress is obvious, and it's exciting!

Origenaly, while in the hospital, the speech, occupation, and physical therapists, told me that I needed to spend 2-3 weeks in acute care home where I would work 6-8 hours a day on my deficits. The worst part, I was told I would have to live on campus, alone. I remember the second their door shut and I turned to Dan. We looked at each other, and I said, "Dope." He smiled, and I whispered, "Is that okay?" 

I knew I couldn't be apart from him, not for that not during such a traumatic time. Dan and I laugh so much, we have the ability to keep things in perspective, we ground each other, and literally have fun in everything we do. There's nothing more therapeutic than my time with Dan. So I respectfully declined and said I would revisit therapy after I moved home in a month. 

I had been told from my surgeon, whom I implicitly trust, that a complete recovery was expected, but to be aware of swelling which could take sever months to recover. In my mind, her words vindicated my gut feeling, that this time should be for healing, compassion, patience, and not brow beating.

As this is my fourth brain surgery, I'm different in how I evaluate the process. I'm much more calm. I'm able to analyze what will serve me on an independent level. For me, I knew being away from Dan would dampen my soul, extinguish my light. It would actually be carmful.

So, instead of weeks working in frustration, we were cocooned with a magical beach home in Malibu. It was through a friend of a friend, but now it already feels family. We have been nurtured by everyone, even friends of friends. Each day, I get better and better, oftentimes even between naps. I started with a walker, and yesterday I walked over three miles. I no longer require assistance.

You can see in my language, in my writing, that I am fast improving. I have no fears of deficites, I have have no fear of much. Each challange is an adventure, and each opportunity is a gift. 

I have never felt so provided by the universe. From our friends, and family, holding down our home with our pets, to Dan's employers, and work buddies, the emotional support of your payers, and blog comments with pure love. All of the generous donations and gifts. We have made new friends, we have made unbelievable memories. We have found joy in the wildest circumstances, and it's because of all you! You lift us up, you nurture us, you choose to send us strength, and compassion. You are healing us. Please never underestimate your role! 

The world continues to bring surprises, and we continue to have so much fun regardless of the subject or context. Sometimes life feels like a movie, full of lessons and growth. It leaves me with hope, and recharges my soul, regardless of the ending. In those moments, as often as I can remember, I soak it up, lift my face to the heavens, with a jubilant expression, and praise God, praise the Heavens, and I thank whomever is responsible. 

Life is so damn fun!

These pictures show the milestone that is my first shower after three weeks of suture. Damn that felt good to remove and clean!!!

We Are Not Stuck

Sometimes I wonder why my lift continues to be so magical. I am so full of happiness? Why do I get to feel this way? How us it possible to me this happy? Shouldnt I be scared? Or angers?

During the lead up in LA, presurgert, I was waiting for a doctor, and while sitting in a room, I heard gurgoral sobbing, then wretch screams that could not be calmed. After a few minutes I got up, and walked over to the nurse to see if there was anything I could do. 

I was gently told that a patient had been notified of a tumor recurrence. I asked she was going to be okay, if she needed help, and the nurse reassured me that she went back and hugered her and she was with our doctor. I thanked her for sharing that hug, and hugged her too. Life is a circle of comcassion, and sometimes that's all you can do.

By the time the doctor got her settled, the office was running falf an hour late, and my rushed physician, mussled in worried I word be mad at him. I let out a laugh so loud that I even stunned myself. 

I shrinked and said, "Hey, that's life!"

We got settled it, and we got to checking in. We had never met as it was he was there to assess the safty of my surgery. To see my risks, and conduct extra blood work - things like that. 

As we reviewed my years of surgeries, the lenthly treatments, and touched on my scheduled brain surgery, only a day or some away, he stopped me and asked in awe, how I can handle this with smiles and laughter. He said wants to research people like me to learn and figure out more so help for other patients. He is aways fascinated by the differet perspectives of people, and how they analyze there situations. I told him I feel the same too! It's wild, really, wow different people see things.

He ashed it he could me some pointed questions about my attitude, and I askered him best I could. I told hi am in absoute awe that I get to be alive. And that means all of it - not just the good stuff. I choose to be happy. Because it really is a decision. I am easy to laugh, because it makes me feel good. I work hard to give people grace. And I'm easy distracted. I love making people laugh, and smile. Those two tings are my favorite things to give. And that I try to limit negativity.

I was very clear that I'm no master, but these are my goals. This is how I try to life my life. And damn if it isn't fun! 

 

World is a very special place, full of choices. Don't like your attitude? Change it. Don't like how that person treats you? Stop spending so much time with them. Feel scared? Start saying aloud, everything you're grateful for. Feeling down? Pick people that lift you up! 

I probably sound simpistic, but you just start little by little. And it requires analyzing your environment, your feelings. We are not stuck, unless we chose to be. 

I choose to be happy, and I do it because it is saving my life. That might sound confusing, but regardless of my cancer, I feel deep joy in my soul, and THAT is what I mean about healing. I can feel healed every day, in my own attiute. It's viseral, palpable, it is with intention and it's my choice.

We are alive as much we want to be. We are present as we want to be.

Rad Apt

Its some time past three am. The world peppered with dozer eager crickets gently gossiping.

We met with a raduatiopn oncolocgest yesterdar, and have been digestinging her opinion everever sence.

I opted away from radiation atleast 3 times onthis these 7 years. I am aware there are risked. I'm aware of possible humatiotations, of secondary melyglancies. If short and long term effects.   

The radiatiotion oncology doctor was a gem, though. A werd way to describe her, I'm sure, but what a wonderful woman. She was the perfect combo of information, science, reality, humor, humility, and respect.  

She feel strong that that we need to act on now while tumor murdan is low - from the surgery. The trick there is still no baruntee that it would sow tumor growth, and there will be now side effects, and later effects, and it not possible to say how severe the damage would be. Her argeue is that our tumors clearly keep protesting, aways grow back so we need to act. For me, I don't string those that too clothether. Radiation not a simple choice, nor the only, or even the most promesting.

I hear what she is saying, and I'm not ruling out, but we are meeting with our oncolog Friday, and will discuss chemo, some possible medical deivises, off-label drugs and lord only what. Maybe we would do all. Maybe we will do none. Most likely combo. 

I no idea what we will decide, but I'm in no rush. I have minimal stress about treatment. I feel in my soul a depth that I can't explain. I'm living my live with no regrets, analyzing my options, listening to my inner voice. This is my rescission to make. I can't phone this in, or copy some else's notes. I need to look at all my options, even outlandish ones, longshots, exporemtal ideas, and of corse revisit the convential combos. The answers will come, I know, so there is no need to be scared, or stress. I feel free, and content. I am alive in this moment, so I soak up each moment. 

I am still mimin 3 hour of pills, but I snooze day and night, sneaking whenever I can. I relish when I awake and I relish my naps. I love it all. That helps it when I find myself tapping away, sharing with you how I feel, analyzing my life and where I want do.

It's wild to live in a moment, or environment, where I not competely capable of major decisions, yet I have to push thro. I am heal daily, but I don't trust my mind. Thank god for Dan yet again. We discuss, he explains, we discuss, I nap, then we try again. A lot in invain. I will make dense agang, and with his patience, I feel calm, and safe. The harder this is, the more he steps up.

I wish didn't have to ask to ask him of this mich, but he never companes. He's full of graces, and compasson. The reality of what we go throug is often indescribable, but his love is never escaping me. I don't have a lot that I can take of, I need to relian dan, but I can live him grace, gratitude, smiles, and laughter. And gratefuly he is trilled with these small gifts. 

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.



 


   

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.

The Time Has Come

This is Dan,

The day has finally come, apparently... It appears that we will be getting discharged today!!! Jess's new pain management protocol was started yesterday afternoon and has been successful throughout. We still need to meet with the pain management team but it looks like today will be the day. Jess is extremely excited to get out of the hospital and regain some sense of normalcy in her life. As she so eloquently puts it "I'm BORED". I know that getting out of the hospital will be a wonderful thing but there is a slight knot of fear in my stomach to leave the cocoon of nurses, Drs', and most importantly pain killers. The protocol we are on has proven itself to keep her pain tolerable, and I think things will be much calmer and more relaxing once we get out of the hospital. If anything changes I will let you know but around 11:00ish envision Jess driving along the beach with the wind blowing her hair because that is going to be how she feels. The reality of the situation will be her strapped in tight with oversized sunglasses and her head wrapped, but who cares about that reality.

Jess got to 'wash' her hair today. This is a hospital shower cap, which has shampoo on the inside and does not need to be rinsed. Not exactly a spa day, but pretty close.

The Slow Road Through The Hospital

This is Dan,

It is incredible to think that it has only been five days since Jess had her surgery. Time loses its meaning when you are lost in the hospital cycle of nurse visits every few hours, days bleeding into one another, sunrises bleeding into sunsets, living in three hour increments between administration of drugs. Sometimes it seems like it has been months since the surgery and other times it seems like it has been seconds. There is ever present fear and elation. There are actually times when the two can occur simultaneously. Elation that Jess can stand up on her own, and fear that her wobbly legs will not sustain her trip. Elation that her right hand can now almost fully open, and fear that it will not regain its sensation or dexterity (although Jess says its nice because she can use her numb side for getting shots from the Dr's, and she is getting really good at doing stuff with her left hand). The most significant journey while in this hospital has been attempting to get a handle on Jess's pain management. Jess's pain management has been our most frustrating aspect of our stay at the hospital and remains our largest hurdle to being discharged. In order for Jess to leave the hospital she needs her pain managed by oral medication only, as that is all we can administer on our own. Right now Jess has a regiment of oral medication, and a self-administered limited dosing of medication through her IV. As to date the pain management team working with Jess have yet to make any significant strides in an attempt to limit Jess's need for her IV dosage. We are not willing to leave the hospital until it has been demonstrated to us that their particular drug protocol has a longterm effect on managing Jess's pain.

Its hard to gauge what is working and what isn't because Jess's level of activity has been steadily increasing. She has recently began eating more solid food, going on walks around her floor, walking to the bathroom with minimal assistance. With this increase in activity Jess becomes strained and worn down, often needing a nap after traveling to the bathroom, or meeting with a Dr. It appears to me that it is simply exhausting for jess to be awake. Her body is working so hard on healing itself that there is little energy for other things. Deficits will come and go or vary in degree depending on the severity of Jess exhaustion, or severity of inflammation and healing. Jess needs a nap pretty much after any activity. In similar fashion to life before her most recent surgery, Jess insists she does not need a nap right up until the point she falls asleep.

All and all, Jess is her normal resilient self. Always seeing the best in things, talking with all the nurses, and continually making her parents and I laugh. She really appreciates all the support she has been getting. It has become somewhat of a ritual for me to read her your comments on Facebook and her blog. As of right now, Jess cannot interpret written language. This gives me the pleasure of reading all of your comments to her, and quite frankly I often need to take breaks to allow the lump in my thought to subside. She really wants me to express the fact that she is not in a state where she can respond to anyone but does want to thank you all for the kind words of encouragement.

Prior to Jess being able to walk on her own, we took her around the floor in a wheel chair, because she's Jess and she can't just stay put!!!!

In Jess's Words

This is Dan,

One of Jess's more severe deficits is her inability to distinguish between letters. Its 1:26am and I found her working on her first attempt at writing since the surgery. She asked if I would post it, and of course I gladly obliged. I hoped this would illustrate to everyone why Jess is unable to responded to your messages. I save reading her your comments until things are really tough, it is the extra motivation she needs to pull through. Thank you all for your continued support.

 

Jess's next step

This is Dan,

Last night Jess was moved from the ICU to a neurological step down room. This was an expected step and is a step that every patient who undergoes head trauma at UCLA goes through. It was something that had been approved since yesterday morning but we had to wait for a room to become available. This has been a mostly a good move, with some slight hesitation and concern. On the positive side, the move means that Jess is progressing accordingly in her healing and that she will be in a room that is much more calming and private. The nurses do not come by as often and her regiment of medications has lessened. For the first time since coming out of the surgery Jess was able to sleep for more then a few minutes at a time. The room is bigger then the ICU and allows for me and her parents to all have a comfortable seat and room enough not to step on each others toes. The room also has a window, which although just shows surrounding buildings, allows sight to the outside world and natural light.

On the negative side, is STRESS. Jess had to endure a fair amount of pain during the travel 200ft down the hall to the corresponding wing. Any movement is tough on Jess and this was a big one in her present world. The same freedom that allows Jess to sleep also causes her significant stress. She is haunted by the memory of the surgery at UW and the need for a second surgery. She worries that she will begin to deteriorate and no one will know. This is in spite of the fact that between me and her parents, she is never left alone, she is hooked up to every monitor available to the facility and is periodically checked on by her nurse. The memory of the pain and exhaustive rehabilitation caused by her emergency brain surgery at UW is so prevalent that every time she cannot control her right hand or cannot find a answer she fears she is slipping backwards again. She easily forgets that it has been less then 24 hours since her surgery was completed and she still has a vast amount of recovery to do. The nurses and caregivers here are wonderful and Jess has quickly found her favorites and made each of them laugh. It is rare to have a nurse leave her room without a smile on their face. Her deficits are severe, but we see small changes daily and even hourly that are encouraging to us. We also see negative changes when she gets over worked or exhausted. My personal opinion on these changes is overall positive. I feel that if we see changes, good or bad, then it means that particular aspect is not permanent. If this aspect is not permanent, it is possibly fixable. When dealing in this realm, possibilities are always positive.

Jess In The ICU

I am very sorry for the delay in getting information out to you guys, I realize I left you out on ledge with no answers. Again, sorry about that. Jess is recovering in the ICU, and by all accounts is doing as good as can be expected today. Almost immediately after writing my the last blog we got a call in the waiting room saying that one of us could go and see Jessica. Bonnie and Bob were gracious enough to ease my eagerness to see her and allowed me to go first. Or maybe I just left...When I arrived at her room, my heart sank. I found her screaming in pain, nearly hyperventilating, with tears streaking down her face.

Jess has an incredible tolerance to pain medications. It has been an issue with every single brain surgery. We thought we took steps to eliminate this prior to the surgery by informing anyone and everyone who would listen, and showing documentation the on her charts, but it did not help. Either the information never made it across departments or no one can fathom that Jess needs the same amount of painkillers as a women literally twice her weight. After entering Jess's room I quickly relayed all the information that we had already told so many people and after 45 excruciating minutes she started to feel the effects of the painkillers and began to level off. The nurse stated that she did not think anyone in the room would still be conscious after taking the amount of painkiller they administered to Jess. Needless to say this was extremely difficult and not what I was expecting. This experience started the cycle of me not leaving Jess until this exact moment. This is why I was not able to write an update blog and give everyone the information they were seeking.

Once Jess got her proper dosing in order, things have been going. The staff has been incredible (besides the obvious) and Jess is quickly becoming friends with every single person who enters the room. It is important to explain what 'good' means in terms of a craniotomy recovery. First off, I will say that she seems to be doing better then the previous surgeries relative to the same time frame. unfortunately what this looks like for Jess is; occasionally slurred speech and word finding issues, blurry vision, loss of motor skills and decrease in cognitive abilities. Lots of tears. Lots of stress. Lots of worry. Some of these deficits are an expected byproduct of surgery, but none are guaranteed to diminish. We all hope they will, but nothing is certain. There is an tremendous amount of healing that still needs to take place. There are going to be hard days in her future, but if there is one thing I know, it is that she has done it before and she can do it again. Amongst all this pain and worry Jess still manages to be polite and caring to everyone. After the tears comes one of those smiles, the type that somehow reassures everybody in the room. Just as quickly as she gets sad from not accomplishing something, she is elated at one of her tasks conquered and puts both hands up in the air as if she won the ICU rehab championship.

I only mention her deficits to ask everyone to be cognizant of her healing and remember that the work will continue long after we leave California. Please continue to send your love and prayers her way, she is very moved by the amount of support she is receiving. Thank you all so much.

Here is the girl..

2nd update

This is Dan,

Just got an update stating that the tumor removal is over and that they are closing her up right now. Dr Liau will be coming down and speaking with us shortly and I will let you know what she says. Thanks for all your support.

First update

This is Dan,

About 45 minutes ago Jess was taken from the pre-op area to the surgery room. She was in as good of spirits as can be expected. Her tracking status still has her in the operating room, but they have yet to actually start the procedure. My understanding is that she is getting her anesthesia and more IVs. Im sure its no surprise but she quickly made friends with her entire surgical team. She was restless last night and, although I refused to let her respond to any, we went through the comments of support she has received from everyone and it quickly settled her down and filled her heart with happiness. Adding a couple cat videos after quickly had her asleep. Thank you for all of your support and encouragement. We will try to keep updating the blog and allow everyone to follow along with her progress. Once we are able, we will be sharing your comments with her, so if you are debating writing something please go forward and say whatever you feeling. It makes a big impact on her and means so much. Thank you,

Surgery Final Details

This is Dan,

I have removed Jess from her phone and laptop in an attempt to minimize the vast amount of stress she is dealing with. She had a few Dr appointments today, along with finalizing everything necessary for her surgery tomorrow, took their toll on her. The stress that she is under is tremendous and even before todays activities it has effected her greatly. Her body temperature was a full degree below the normal range, which the Dr says can happen when people are in high stress situations. One of her eye lashes actually turned white over night. These are just a couple of examples to illustrate the reasons I have chosen to remove Jess from the outside world and allow her to focus on herself, as much as is possible anyway. We have been overwhelmed with support and love sent our way, and I wanted everyone to know that any lack of response from Jess is because of my wishes of her. Thank you for your understanding.

Tomorrow Jess is scheduled to begin the surgical process about 7:15 with the actual surgery scheduled to begin at 7:30. If everything goes accordingly, Jess should be finishing up with the surgery around 1:30pm and we will get an update (and hopefully get to see her) an hour or two after that. She asked me to let you know so that if you wished to send her your thoughts, prayers, love (or any form of support) this might be a good of a time as any. We truly appreciate all the support everyone has given us, thank you.


The blog will be update periodically by either myself or Jess's parents. We will attempt to keep everyone informed as best as possible but priority one is taking care of Jess so please give us some patience.

Even if Just for Today, We Persevered

Each moment bleeds into the next, with so many responsibilities, so many tasks to complete. It's exhausting. But, today, we did it! This morning, it took walking around the UCLA campus to different departments, a lot of explaining, and some phone calls, but we completed our mission. Thank you to everyone who offered their assistance, and appointments, I didn't see all those until later, but it ended up working out! You guys are AWESOME.

Sometimes in life, no matter how creative, and persistent, you get, you run out of time and options, and I'm just thrilled that we were able to fulfill this need, this desire. 

I completed the pre-op MRI this evening at a UCLA alternative location (Santa Monica). Same style, 3 tesla machine, which was important to me, because I want my radiology reports to match. MRI machines can have different strengths (ex: 3 tesla vs 1.5 tesla), also they can have different amounts of slices (ex: 1mm, 2mm, 3mm vs 4mm). My goal is to keep everything as standard as possible between scans so that they're easier to compare. Anyway, they were able to facilitate the same pre-op scan that was scheduled for Thursday. The functional MRI is still slated for Thursday afternoon, which will determine if I'll need to do an awake craniotomy or if I just get to take a sexy little horror movie nap.

My relief is palpable, if not temporary, for the stress of tomorrow's cognitive and competency testing which will be several hours of mental acrobatics and interviewing. These test are a baseline for when I get out of surgery, to compare any possible deficits. That way they'll know what kind of assistance I may need (physical, language, and/or occupational therapy). 

Wearing Resilience socks, thinking about all the other patients out there in my same shoe....er.....socks?

I'm bone tired, but elated that I was able to follow my intuition, and find some answers in all of this madness. I'm not expecting a miracle of healing (although I never rule anything out), but I am a tangible person who needs explanations and information to feel comfortable about big decisions. 

I understand that I am living with brain tumors up in this noggin'. I'm not pretending anything otherwise, but I feel incredibly capable, and healthy, and before I can comfortably sacrifice my body to the table, I have to feel assured. Even though this is my fourth brain surgery, it has not gotten any easier. In fact, I'm noticing that everything is becoming more difficult. I'm losing my pain threshold, I can sense my body, my spirit, remembering the trauma of all these surgeries, especially the one where I almost died. That pain, that subconscious awareness surged through me today as they inched the MRI needle closer to my vein. It was in the powerful magnet of the MRI that forced every cell in my brain to shift in different degrees, to manipulate my fat cells, and water cells, the tissue forming into just the right image to see what is going on in my head. It took everything in my being to hold back a seizure. To hold back tears of how brutal my body has been and continues to be treated. 

If she [my body] was a person on her own, my poor little Body, I would want to take her by the hand, and pull her close. I would rock her, in empathy, and hum her a beautiful melody. It wouldn't change the damage, but I would do everything in my power to console her. 

She's done so much for me, and I keep abusing her. 

It's not what I want, but my choices are limited.

Can't Fly Blind

Been scrambling to get a MRI since Friday, because I know that I can't walk into this surgery blind. I haven't seen what's going on in my brain for almost two months, and things can change. I'm not saying that the tumors are gone, or that they've shrunk, or even that they haven't exploded in growth, but my intuition keeps nagging at me that I must know what's going on up there before I am at peace before the bone saw.

I don't think my request is that unreasonable, however, it's just not how things are done in medicine. Right now, if nothing changes, I'm scheduled for my MRI, and fMRI, this Thursday, the afternoon before my early morning checkin for tumor removal. The problem is that radiology reports take 24-48 hours to complete, and I've been told by my surgeon, and the team at UCLA, that we won't have that report in time for surgery. Apparently the actual radiology report (which measures changes from previous scans, and compares growth, etc. isn't necessary for surgery).

But what if there are changes? I don't even know what's going on up there. 

I don't know why I need this so badly, but I don't want to lose my surgery date, we have uprooted our whole lives, taken time off of work, set up help at our home for our cat, traveled, adjusted, planned, and now I'm told that even with a week's notice, I can't get an MRI to see what's going on in my brain.

I asked for an additional MRI to see if we could facilitate that. I offered to pay if insurance doesn't cover it. We have called facilities all over the Los Angeles area and I can't get an MRI without a doctor's referral. THIS IS MY BODY. THIS IS MY BRAIN. Why is it so difficult for me to get this simple request?? I am the customer. I have insurance. What is going on here, in medicine, that I cannot be an effective advocate for my body?? It is not unreasonable for me to get a 45 minute MRI before a surgery, to be put at ease, so that I can undergo a life or death situation. Let's face it, it's a very dangerous operation. This is not a broken bone, it's my mind they're digging into.

I don't want to push back the surgery date, I don't want to work with anyone other than Dr L. I have 100% faith in her, and I am grateful for her compassion and meticulousness. She's brilliant and I absolutely adore her. I am incredibly grateful for the opportunity to be her patient and to have the ability to get whatever amount of tumor she's able to successfully remove, but I just need to see/know what's going on in my head before I can feel comfortable. I'm even having dreams about it. The desire is permeating everything I do. My intuition is going full force. 

So, dad and I woke up in the 5 am hour and we're headed to UCLA neuro today, to talk to people face-to-face. To be clear (since writing may not convey my tone), I'm not angry, I'm just hopeful that by sharing my deep need, and being available all day, perhaps there will be some people working there that can help facilitate my needs. I know I'm being a pain, and that it's an abnormal request, but I just feel this so deeply. 

My gut has served me in the past, and I won't start ignoring it now. Even if the tumors are shockingly massive, at least I will know, and I can be prepared for what lays ahead.

I call her Mary, our Jasmine vine.
She perfumes us as we leave, and cleanses us every time we arrive.

Past The Meridian

There's something about the middle of the night, that awakens my soul. It happens every night, almost always around 1:27 am, when I arouse as if morning. Astutely alert. It's become a time of prayer and meditation, and deep reflection. 

I'm down in LA early, focusing on healing my body, my mind, and my soul/energy from the stressors and factors that I believe threw my body out of alignment which has facilitated the accelerated tumor growth. Which, ideally, should help me prepare for the March 3rd brain surgery, which lands on Dan's birthday. 

I arrived, on my own, extremely late Saturday night, and by Sunday, early evening, I found myself huddled in a ball on the bathroom floor riddled with food poising. I had asked my father for a few days by myself before he arrived, to give the illusion of independence - knowing that long periods of solitude in high stress/fatigue ridden periods, lead to seizures, and that my ultimate solitude would be a burden on Dan and my family/friends because they would worry - so I had ended up asking him to join me as a guardian. Anyway, Tuesday afternoon, my dad arrived, and by that point I was long past the ability to hold down water. I was delirious, and weak, so he ended up taking me to the hospital. Between the care I received there, and some amazing care from my friends here in LA, and some badass tinctures, within 24 hours, I was back to feeling human. I'm still on a broth diet, but last night we were able to add sautéed vegetables and tempeh, so that was a pretty awesome success.

I'm here to work on evolving my mindset, and removing negative factors. I've learned recently that in life, and relationships, I have taken on the role of a screen/filter. So when people come to me and unburden themselves with the negative/emotional things that go on in their lives, I process that information, and although, often, people feel better releasing their heavy buildup, I end up getting stuck with the sediment. No one does it purposefully. No one wants to hurt me. I just can't seem to take those things in stride. They weigh down my soul.

When your soul is weighed down, it effects your hormones, especially your stress hormones. Recently, a doctor told me that she believes that my explosive tumor growth (3 tumors, one enhancing), is because of the amount of emotional stress in my life, and that tumors actually secrete growth hormones, strengthening the cancer. She mentioned some sort of tumor growth factor - I can't remember the exact term though, perhaps one of you awesome blog readers know what I'm talking about. I'm not going to research it though, because I don't want it to stress me out. I don't want to focus on the negative. I don't really need specific proof -  I can viscerally feel that it's the truth.

Anyway, I recognize that my environment is paramount to my success in achieving true health, and that means protecting myself from negative influences. Even perceived negative influences - whether or not they mean me harm. I am the only person who can make the decision to put my health first. To make the hard choices to separate myself from situations and people and energy that will not serve my healing. It's incredibly hard to pull back and analyze these things, and focus, truly, on what I need to evolve and grow. 

So for now I have pulled back from almost everyone in my life, because I need a true period of time for reflection, and reconnection with my intuition. To truly understand what will serve me, and what kind of social load I can realistically maintain.

Yesterday afternoon, I had an epiphany. I felt like my whole life, including this cancer journey had lead up to this moment, but that I had crossed a meridian, and was now a tiny speck on a new journey, with immeasurable growth to attain. A Universe full of insight and development, full of lessons, if I so chose to embark, to listen, and to absorb. And I do! It feels so right, so true for me. It's one of the most natural things I've ever felt, to finally find what "healing" means to Me. 

I believe I needed those days huddled in a ball, guts cemented in torture, to bring my body, my mind, and my soul, back to a rebirth. A new kind of evolution. That everything in my life brought me to that bathroom floor, in a loving ground level apartment in Marina Del Rey, full of the sounds of birds, and fresh breezes, carrying the scent of jasmine from the front door. Less than two weeks from a brain surgery, at a time when I would typically be overextending myself, I found myself forcibly aware of the necessity to really recognize my role in my own healing. That if I couldn't start to pull away from the demands of this world, which was creating a proliferation of cancer, and put myself first, I was going to aide in killing myself. 

Healing myself is a choice, and I have many wonderful guides and teachers, both western trained, and others, and with the combination, I am finally finding my stride, my raw self. Once you're cut down to your most vulnerable self, you can build a new sturdy foundation, and that, my friends, is exactly what I plan to do.

Thank you for being patient with me while I revel this process. If I don't respond to your text messages, or emails, or communication on any level, it is not personal, it is not about you or anything you have done or not done. This is about me, and about me allowing myself the privilege to work on my own healing. I'm not sure if I will post another blog before surgery. And in the same vein I might write many. I'm going to feel things out and be true to my inner voice and do what feels best. 

During the surgery, my mom has offered to do updates on the blog to share information as they receive it in the waiting room. I'm sure, though, someone will post the surgery time the night before (which is when they will notify us), we'll post that info for those who may be moved to pray or send healing thoughts to my surgical team, and to me, and the family. For me, I ask you to unburden my family during that time. If you could please turn to the blog for information, instead of hitting up my family's cell phones, it would mean a lot to me. I want them to have the least amount of stress as possible. There are so many of you amazingly wonderful people that care so much about us, and we are all very grateful, but if they're on their phones during the whole surgery, then they won't get the chance to be in the moment, to take care of each other, to support and love one another. I hope for them to have some semblance of calm, and know that I am being healed. These are special moments when we get to come together, and focus on what's right in front of us.

I really do appreciate your support, your kindness, and your understanding for what we're all going through. I hope to write more again before surgery, but if not, truly know that your love and positive energy is tangible in my life, especially in these days while we're dealing with so much. I have such a huge amount of gratitude to all of you. Thank you for sharing your prayers, and for entering me into your prayer circles, and for sharing my journey with your friends, because I can feel their love and prayers too.

I recently finished a fascinating book on Hado, specifically, The Secret Life of Water, by Dr Masaru Emoto. He analyzed water crystals forming in different environments (during specific music, or words, or emotions, etc.), and what he found is that the crystals formed beautiful, symmetrical shapes during [many] times but specifically of prayer. My prayer, and my hope, is that all of your beautiful prayers, and love, and my deep gratitude, may bring my body and spirit beautiful symmetry, beautiful wholeness, as well. May I be blessed with your Hado (Baha'i, Catholic, Christian, Muslim, Buddhist, agnostic....etc.) healing. I'm very very grateful for your kindness, and your love.

Sent this to Dan the morning after I arrived. Wearing his shirt so that I could feel close.
The calm before I fell ill.
I'm wearing it every single night. Should probably wash the funk out, but in my mind,
I still smell his scent.

Thank you, as always, for reading.

Love,

Jess

UCLA Update 2017

I hesitate to talk about it, because I don't want to exploit the beauty, but on Saturday, because of the Skid Row Carnival of Love, I had the opportunity to meet a man who lives on The streets in LA. 

Dan and I on our way to Skid Row Carnival of Love

We're down here for medical reasons, and I was supposed to spend this weekend relaxing, finding my truth, maybe soaking up some sun, following my intuition, making decisions on what to do for treatment, but when I realized I had an opportunity to connect, for life to not be about me, my own issues, I knew it would make me happier than spending time reading a book, or thinking about life or my own issues. 

Yep, again I realize retrospectively, I'm not taking care of myself. Or am I? I mean, each day we make make decisions, each moment, depending on the pace, on what fulfills us, that which can also heal us.

I wanted to do for others, for Mike my new friend from NC, what I have done for my own grandma, what Dan does for me, I wanted to wash feet. 

There's this raw humanity of touching feet. It's vulnerable, and raw, and for people to open themselves to that private pocket of their life, it's incredibly endearing. That Mike trusted me, and that I could give him human touch.

My god we laughed!! I couldn't deny his quarterback, Cam Newton (who I always refer to as a transformer - have you seen him???), and he kept hollering toward Dan, "Blue 42 - Blue 42. He's a big boy!"

It has been an insane weekend of connecting, and loving, and until last night and today, I was worried about others, and trusting that the universe had my back. That's a wonderful thing, but also dangerous, because we are the only ones who can take care of ourselves. No one can tell me what to do, no one can tell me what is best, I have to find my inner voice, I have to reconnect with what feels right in my soul.

This morning we were told that the areas in my brain are most likely resectable. My god that is GREAT news. Regardless of the reality of a brain surgery. (No small potatoes.) In every moment when I receive complicated news, we immediately spin it. I have lost so many brain tumor friends because their tumors were inoperable, and I recognize the good fortune in my life. 

For now we will focus on removing negative influences, drains, and we will be enforcing a fabulous new protocol that includes a multi-focal awesome new set of rules that focus on laughter, fresh air, connecting, and loving. Sometimes you have to bring it back to the basics, and heal before you can help others. It feels horribly uncomfortable, but I have work to do during these next few weeks until surgery. 

I want to live. I want to learn. I love to love. And to make that happen, I have to focus.

Thank you for loving us, for supporting us, and I am so sorry that I'm not able to respond to everyone - the amazing comments and FB posts, or IG posts, my phone - the texts, calls, emails - they mean SO MUCH to me, they lift me up, which lifts up Dan - because honestly, Dan gets the brunt of carrying the weight. He is the silent hero. I know you see it, you have to. I would be a completely different person without his strength.

And thank you for sending your prayers, and love, after that last post, I swear your love was absolutely palpable! I couldn't even believe it! When I receive that love, it overwhelms my body in a way that I finally calm down, and rest. I laugh more, I feel that energy. So thank you! I just need to heal so that I can give it right back to you, to everyone. 

I Choose To Find Happiness

I've been hiding things from you. 

Bad things. MRI things.

Unfortunately, it appears as if there are three tumors growing now. 

Dan and I have known for a week, but I wasn't ready to vomit this awful news onto you. I realize, because of my own life, that we can only handle so much suffering. We can only handle so much pain, and I never want to be a burden on your soul. That is the last thing I would ever want to give you. Weight.

I only want to fix things, to make people feel better. Even in the grocery store, on the sidewalk, on a phone call with a girlfriend, I look to make someone smile or laugh - to connect. Sometimes it's a challenge, but nothing gives me more satisfaction, than trying to make a situation/attitude better. Not that I'm without mistakes, or poor choices, but I am trying every day to do what I think is right.

It's after midnight, but I can't sleep. I stopped all current treatments because I don't trust or understand what's going on in my body. Treatments can actually initiate tumor growth; there is no easy path. No solid way to address this problem. There are no easy answers. I have not given up hope, I'm just recalibrating. We're hunkering in, planning, looking for educated information, looking to add more professionals to our team.

I have Emma asleep on my legs, and Bing on my chest. I feel connected, three heartbeats. I never REALLY thought this would kill me, or that it would get worse, although it's exactly what the scientific literature has been telling me. I even said to Dan recently, "It's possible that my positive thinking may have been denial." - As these tumor/tumors have been gently penetrating my brain. 

I'm not planning on dying anytime soon, though. Why would I?

Between filling out the tens of pages of patient intake forms for the various new doctor appointments scheduled for next week, I took a 30 min for a bath at noon. I poured a few cups of Epsom salts, dipped a foot, eased, and settled. I found myself lifting my dripping arms from the water (knobby knees sticking out of the shower tub), hot tears running down my face, "Thank you Universe. Thank you God. Thank you for blessing me with so many experiences, for the joy, for the laughter for the connections, for the fresh air, for the EVERYTHING." I added that I am open to all the goodness that the universe brings, and that I am open for healing. That final statement is new. It's a new open door, that I didn't feel worthy of. Why should I be healed when I already have so much? How many gifts does a girl deserve? Surely, I have hit my max already.

I don't know how this world works. I have only my own compass, and my education from others. I am trying to do my best, in the situation I am in. I am laughing with Dan daily. Teasing and connecting with friends deeply. That's life, it's simple, yet profound. It's love. 

I have our sweet animals cuddling me right now, as Dan sleeps in our bed. I can hear his gentle snoring, what a glorious sound! Tonight is a rare occasion, because we always go to bed at the same time, but I fibbed because I needed to cry and I wanted to shelter him. I thank God for the luxury of a guest bed. This beautiful man who gives, and gives, who's love shows zero boundaries. 

I am unwell, but I am not dying. I just need to heal. I will be dead when I'm dead, and I'll deal with it then. For now, I raise my soaking arms to the heavens and give thanks for everything I'm allowed to experience!

Even the shittiest task can be fun. (That was us in the MRI waiting area.)
Choose to be happy, it feels better.