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.

Poof.

My friends keep dying.

Smattered between the 50% off holiday spam emails, are updates from caregivers telling me about loss after loss. Then the upside, the lucky ones if you can call us that, they're coming to me with notices of recurrences, and declines, and paralyzations, and sadness. It's surgeries, and radiation, with chemo complaints. It's all heavy. It's always heavy.

So much sadness.

I am not a timely communicator anymore. I've come to dread my phone, and my computer. I hesitate to connect. I'm a conduit for information, this blog, but it's not without an obvious toll.

Thank you for being patient with my lack of responses to emails, to texts, and unfortunately, I don't see an improvement in my behavior, for clear reasons. I don't want to get swallowed by the sadness, so I must protect myself. That means cutting away on many occasions. Or for long periods of time. And it often means everyone, not just cancer related.

I was blindsided by this diagnosis, and have managed because I've methodically taken one step after the other. I have no idea what I'm doing. I'm just doing the best that I can, in the situation I'm in. I have zero capability to disconnect, or compartmentalize. I just don't have that talent. And for a girl lacking in the department, this muddled, cancer vortex, can completely disintegrate the heart at the soul of the girl.

I want to know what's going on with my friends, I want to fix it all, I want the hurt to go away for everyone. But's not fixable. Not by my hands. So, instead, I grieve like they do, and wish things were different.

Just after Christmas, my longest running brain tumor friend passed away. She and I had the same diagnosis. Even a very similar pathology. The difference? The location of the tumor. I had no idea she was dangerously close to death. And that's what it is in my world. One minute they're here, and the next they're gone. Poof. We're a highly vulnerable bunch.

My friend's lives are sifting through the slats of my fingertips.

I don't write much these days because it would be much the same thing. If I write, I feel, and sometimes, the only thing I want to feel is my love for Dan. And I cling to it tightly. He's my safe place, my lair, my battery charger; my blanket, and my umbrella. He's the halls that reverberate my laughter.

To all of you, to those who will read this, and for those who might not, I love you all. I think about everyone often, I pray for people, and send them love from my heart to theirs. I might not call or text much, or respond even, to your messages, but I love you no less. I'm just doing the best that I can.

So I'll have a good cry for M, and then I will wash my face, put on some layers, and walk that last Christmas gift down to the post office for a tardy mail.

I'm not sure when I'll write again. (Thank you for understanding.)

With love,
Jess

My Biggest Medical Asset

I have something that will help the cancer patient in your life, something that has been helping me for years. Why didn't I think of sharing this sooner? I've eluded to it, even directly recommended it, but I've never included (that I can remember) a true description with photos. I've been sharing this info one-on-one with patients and caregivers, but for whatever reason, it didn't occur to me to officially write something on how I stay organized in the wild wild world of cancer.

Any large accordion style briefcase will do. The more slots, the better.
Spring for heavy duty, this thing will take a beating with the amount of use it will get.

I get copies of every medical record, and I carry this with me to all of my appointments.
I have saved many a headache, and lots of time, during meetings
because I have my own copies of my various pathologies, radiology reports, etc.

This is a mini case that has its own slot in the big case.
It holds every single one of my MRI and F18-Dopa PET scan disks.
I'm able to pull out any disk that I need, in a matter of seconds.

It's astounding how helpful these disks have been in appointments.
It has been common, in my experience, that new doctor appointments often
 do not receive my records in a timely fashion. By carrying all of my document and disks with me,
I don't get held up with delays or partial information from my doctors,
because I'm able to provide the data for review and assessment.

This briefcase has been worth its weight in mom's cookies. Recently, at a new neuro-oncologists's meeting, the doctor even asked what I do for a living. I replied, "This." He responded by saying, "Want a job?" For a woman who has disabilities, who struggles with epilepsy, exhaustion, the uncertainty of surgeries, treatments like radiation and chemo constantly looming - let alone all of the other off-label, technically experimental, medicines - this housebound woman often feels inadequate, less worthy, low functioning, and non-contributing. I struggle with those emotions on a daily basis. To have someone of authority, like a doctor, give me such a beautiful compliment, it was priceless. I'll bet that doctor has no idea how powerful his words were and continue to be.

This briefcase system is brilliant! I was skeptical at first, but it has truly brought me much more insight, and opportunities. Once you set it up, all you have to do is keep it current. It's also a great spot to put new research, and copies of your med lists, etc. If you have something similar, or if you have any ideas to add to the conversation, please comment below. I am where I am today because of tricks from patients/caregivers. I learned about this concept from others, it had never crossed my mind to put my hard copies in a briefcase. I thought my file system was sufficient. But it wasn't. Having all the documents at hand in appointments, or brainstorming sessions, has been paramount.

Why Reinvent the Wheel? Copy This System!

• Call/fax/go to the medical records department and request copies of every single document (and continue to do so for every additional appointment).
• Buy an accordion briefcase and disk case.
• Create an ongoing timeline of medical appointments. 
• Create an ongoing list of medications. While on those drugs, note side effects, etc.
• Do the same thing for supplements, and various treatments you try.
• Print up new copies of updated documents and bring them to appointments.

I had the opportunity to head to San Francisco, to check out the biotech company, Notable Labs in Dec of 2014. While touring the facility, there happened to be a prominent researcher who studies my type of tumor. I was introduced, and he asked me what type of tumor I had. I responded, "Diffuse astrocytoma, would you be interested in reading my pathology?" His eyes grew wide, and stood to reach the printout. When he saw my mutations, and nuances of the tumor pathology, he asked me if I had ever done chemo. Before I could get the word, "No" across my lips, he boomed, "GOOD." This guy wrote some of the most influential papers in my cancer world, and here he was reviewing my medical decisions. That affirmation, was vindicating, and had I not been carrying my pathology report, I wouldn't have received a free, spur of the moment, evaluation (by the guy who coauthored a paper on hypermutations in LGG). You never know who you're going to run into. Be prepared.

I am forever grateful to those who turned me on to the idea. I hope that their kindness lives on, through me, and helps you.

A Lauren Taylor Illustration

Look what came in the mail, from the brilliantly gifted illustrator, Lauren Taylor!  (Click on her name and explore her website.)

This image, this moment, I remember it like it was yesterday, and yet, in the same thread, it feels like several lifetimes ago.

Earlier today, when I was cooking dinner, a wave of shock, and gratitude came over me. You'd think I'd get used to his love, but it still surprises me. Like a stupid cliche, but it's not stupid, and it's not a cliche, it's my life. I was thinking about how deep my love for Dan is, and how mutual the bond. If I never get to fulfill my dream of being a mother, or if I never fulfill my dream of further education, or even a fence around our property, I am and have been loved by a man that treats me kindly, who cherishes me, who hears me, who fulfills my every need, and so much more. I could never have dreamed of a love like this, because I had no concept of the enormity.

Oh, to have a piece of art to celebrate the most profound aspect of my life, the bond with his soul. What an honor for Lauren to gift us this. I am in complete awe of this young woman. I think you might be too, if you check out her amazing YouTube videos. Get to know her a little, she's dynamic, and full of compassion - let alone talented.

EASTSIDE STORIES

EASTSIDE STORIES on YOUTH

EASTSIDE STORIES on HOME

UCLA Tumor Board Results

Dang it if brain tumor life isn't confusing. At least in my world! I can't be the only one who has these types of yoyo results. I mean, it's better to have differing results than a truly horrible, obvious situation. The ups and downs, though are insane. 

If you don't want to watch the whole video (3 min 44 sec), the short is: tumor is growing, albeit slowly. (Think millimeters.) I believe the two treatments I added in the past two months, are helping - who knows, maybe the tumor had grown more in the interim, and now they're even shrinking it? Who knows! I rule out nothing.

My neurosurgeon at UCLA offered a brain surgery to remove whatever she can, or she said she is "comfortable" waiting 2-3 months for another stealth (pre-op) MRI. I opted for the latter, and agreed that if I had furthering symptoms, I would move up the scan.

Some people might think I'm crazy to push-off brain surgery, since I have a growing tumor in my brain, but there are inherent risks involved. Remember when I had to learn how to walk, talk, read - learn the alphabet again?! I do. We will never know for sure if the decisions that we make are the best ones, but a decision is what we have before us. For now, we try to do the least invasive approach. If that isn't enough, we will evolve as we always have.

It's confusing because the symptoms of my seizures are the same symptoms that tumor growth would cause. The main take away right now is that it's important for me to stay the course on exactly what I'm doing treatment-wise, and perhaps even add a few non-toxic, whole body health boosting things. And I really need to lower my stress levels. They directly cause extra seizures, and that makes diagnosing possible tumor growth, very difficult.

With all that being said, I should go to bed. I have a big day planned with a bunch of friends tomorrow. We're doing a nature hike in an old growth forest. I'm so excited! I'll be sure to hug some trees for all of ya. ;-)

UCLA Tumor Board Update

Friday Friday Friday. No results from the tumor board yet. I'm excited for a few days to pretend everything's normal, Dan's still on the fence about it being a good thing. Bet I can tease a toothy smile out of him yet, though!

A photo posted by @jessica_oldwyn on Oct 21, 2016 at 6:13pm PDT

Half of the MRI Results (Swedish vs UCLA)

Basic update about our current and upcoming results for treatment.

New Neurosurgeon, New MRI Scheduled

Just snuck and took a video in my first neurosurgeon's apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It's gross. Every. Time. I. See. It. The image is from back in April, so it's not even current.

On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue.

Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA's system and hope I get in for next Wednesday's tumor board. It's frustrating that they only review cases once a week. If there's a backlog it can take weeks, even a month, to get results on treatment recommendations.

Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.

Introduction to My YouTube Vlog

I'm getting lazy in my old age, and resorting to video blogs to keep in touch.

Okay, I was just cracking a joke, but truth is, I'm having a harder and harder time expressing myself with written words. I can't even think straight these days. I'm truly bone tired, and that's why I barely write anymore.

Please note: My YouTube channel will have all the videos, but the BLOG will have all the various posts: video, written, guest, etc.

Back-To-Back Seizures (Kinda)

Well toots. I had another seizure on Saturday. That's a fast turnaround since I just had a seizure a few weeks ago. Never a good sign.

I was playing with my nephew, who had just finished his peewee football game. His older brother was suited up on the field.

We were swinging on tree branches, between practicing touchdown dances, when all of a sudden I felt the seizure coming on. I looked at my eight year old nephew, who didn't even know what a seizure was, and by the tone of my voice, he knew something was very wrong. I told him, with my bug eyes, to get Dan. I slowly followed, pulling pills out of my purse. There was so much excitement, the fans cheering for the players on the field, kids throwing balls, girls taking SnapChats with their friends, laughter, yells. There was nowhere quiet to go.

I put a pill in my mouth and chewed it, hoping it would seep under my tongue and enter my blood system fast. Dan came to me, pulling off my coat since I had lost control of my torso. I always overheat when there's seizure activity, so it's important for me to get cool as soon as possible. He gently rocked me down to the ground, supporting my neck. He then ran to get water, and ice, and a few people started to ask if we needed the trainer, or a medical professional. I was able to tell them it was nothing to worry about, that I'm epileptic, and will be fine in a minute. A big fear of mine is being put in an ambulance, and being placed in the hospital, but we were able to avoid that issue. I don't know what I would have done without Dan.

As the shaking and twitching waned, the emotional release of the seizure loosened tears that streamed down the side of my face. I was so relieved that it didn't turn into a grand mal. I was actually thrilled that I had managed the episode in a calm way. That it was relatively under the radar, and aside from the throbbing headache, I was able to take a group picture right before we snuck out. I was out of it - I don't even remember taking the photo, but I'll never pass on the opportunity to commemorate outings with my sweet little nephews whom I absolutely adore.

I hope that I didn't scare them. I ended up with a droopy face for several hours. It was fine if I was toothy smiling, but the half-assed smile was the dead giveaway.

I have to say that this seizure episode will not stop me from running around getting crazy with these cuties. However, I might need to spend a few minutes prepping them for a future episode so that they know what's happening, and that it isn't anything to fear. If I explain it the right way, with a nice coloring of humor, they might even think it's kinda cool. Usually, life is all about how you handle it.

Post Seizure Update

I'm back! I took a hiatus, had to get back on my feet. The seizure was a doozy, although, it wasn't a grand mal so I'm grateful for that.

It all went down because I borrowed my mom's carpet shampooer, and I used her noxious cleaner. (Our house is normally a low chemical zone - I'm a baking soda, vinegar, organic, kinda girl.) A few minutes into the cleaning, I started getting lightheaded. I didn't realize in that moment that I was already in the seizure. Somehow I grabbed my medicine, and a phone, even though I don't recall making a point to do so. I wandered out to get fresh air, I felt like I was shuffling through a chemical cloud. The smell of the cleaner was so overwhelming that my brain felt like it was choking.

I went to a semi-shaded area of the yard, and although it took a long time of staring at the phone, not understanding how to work it, I was eventually able to hit redial which was my parent's work number. At that point, of progression, all I could say was, "It's happening! It's happening! Get Dan. Get Dan." I was unable to hang up the phone, and could hear them scrambling to find their cell phones. I could hear their panic, their dialog. Then I heard the dead dial tone beeping. I remember closing my eyes, and for the first time during a seizure, I started praying. I prayed to the rhythm of the beeping. "Thank you for my life. Thank you for my life. Thank you for my life. Thank you for my life." All in all, it wasn't a short episode, but by the time I realized that it was okay to relinquish control, that I was fooling myself by trying to command a different outcome, I just stared up through the semiopaque leaves, observing the rays of sunshine between, while tears streamed down the sides of my face.

When I'm in a seizure, I never know how bad it will get. I've had all sorts: absence, petite mal, semi-partial, grand mal. Depending on if I'm able to get my medicine and ice water, or a little sugar, it can escalate quite quickly.

They always start in my right hand, and climb through the right side of my body. As it spreads, there are checkpoints in my mind, that signal different levels of severity that I recognize in those moments. I will think to myself, as I'm trapped, unable to control my body, "Oh no, it's spread. Oh is that my right leg? Shit. Shit. How bad is it going to get? Is this going to crossover? Am going to have another grand mal? Should I try to roll on my side so I don't choke if I vomit?" And sometimes, like this last episode, I couldn't move my body at all to roll, to protect myself. I had to submit to the reality that everything was out of my hands. In times like that all I can do is hope that I won't wake up in the hospital, which has happened.

One boundary is my right shoulder. If the seizure spreads past my shoulder I know it will spread down my whole right torso, and right leg. If it makes it up to my clavicle area, I know it will go all the way to the right side of my face and then skull. For me that's a 4.5 out of 5 alert, with a 5 being a grand mal. Those are the whole body attacks - both sides, and I lose consciousness. Fortunately, I've only had two, and by fabulous miracle, I didn't pee my pants either time, which is quite common for those types of convulsions. So, I'm at a 100% dry pant success rate. Small but happy victory!

I did not lose consciousness with this seizure, however I did blackout for the hours afterward. I don't remember Dan taking me to bed, or whether or not I woke up and talked with him about what happened. Maybe I even slept all the way into and through the night, I have no idea.

Seizures are so crazy. It's as if my body gets possessed. I have no control. In those moments, I feel like I'm a puppet. It manifests as a physical aberration, and can end with a total brain fry, loss of consciousness even vomiting, urination, defecation, and injury. So far, I've been able to have Dan drop my pants so I didn't wet myself. I've vomited during/after the seizure, and have yet to poop myself, and hope I never will. It's all quite unpredictable, and I don't assume anything.

Legally, at this point, I could drive, but I'm too scared to do so. I've been walking or jogging when I needed to get stuff, or to meet people, or graciously they come to me, and Dan just picked up a bicycle pump for my tires, so I'll be on my own set of wheels very soon. Don't worry, I'll start slow and be careful to not induce a seizure while riding. I actually didn't ride a bike for a few years after I started having seizures because the movement was seizure inducing. Once I decided to say screw it, I can't live in fear, we joked that we were going to put adult training wheels on as an added security measure. We never did, but I like that we still have the option if needed.

When you're living with active epilepsy, you have to find creative ways to continue to live your life and have fun doing it! The last two weeks have been good to be homebound, I've moved all of our furniture, we switched bedrooms, I've gotten creative with my cooking because I couldn't just get to the store whenever I wanted, or at all unless Dan was around. It's amazing how lucky we are to be mobile. I'm soon to be beach-cruising around Edmonds, rain or shine. I'll have to plan extra hours to do the same thing, like get to the grocery store, or added time to get to appointments. I'll need to learn how to attach my bike to the front of the metro bus bike rack, which is intimidating, but not the end of the world. It certainly won't stop me!

This is a whole new world of adventure. I may have dialed back on speed, but a forced change of pace may just be what I needed.

A Message From Dan

Hello everyone, this is Dan.

Earlier this afternoon Jess had a seizure. It was different then her normal seizures as it came on with no aura or preceding affects. She attempted to call me but was unable to use the phone until things had passed and luckily I was not too far away and got home quick to find her laying, unable to move, in the yard. She has been going non stop for the last few weeks and I feel this has put a strain on her. She always wants to answer every text, email, comment, and no human could possibly withstand that pressure. She is slowly getting better as we speak from napping, but needs to rest as much as possible. So, with that said, I am instituting a technological blackout. Most of you will remember me doing this in the past, but in case there is someone newer or does not remember, Jess will be refraining from blogging, texting, calling, emailing until she is feeling better. Or until she sneaks behind my back to do it anyway:). Jess wanted to make sure I wrote something so everyone would understand why she is not returning your messages. We have a good friend in town tomorrow, all the way from Texas, to cheer on the Seahawks vs Cowboys preseason game, and knowing her, I can't stop her from attending if I tried - however, it's imperative that she get as much rest between now and then. She's heartbroken that her running steak of no seizures has to start over, and scared that this seizure came with no aura, no forewarning. She thanks you for your patience, and is embarrassed to have to explain this situation. Thank you for your cooperation, and if you want to send her well wishes, feel free to do so on the blog. Also, even though you want to reach out in this moment with an email, text, or call, please hold off. The growing list of emails/texts/etc. will just stress her more. A comment on the blog is fine, but but other forms of contact put more of a strain of responsibility at this time. Thank you for understanding. I just want to protect her, Dan

After I carried her back into the house.

Katie "Crush" Campbell 1983-2016

This is a hard post to write.

There is the concept of death, and actual death, and there is a vast difference between the two.

Saturday evening, I was munching on corn chips, sipping on a margarita, listening to old stories at Dan's 20th high school reunion, when a friend shared that Crush had died. My pulse raced, everything froze, I went deaf, time stopped. In a split second I recorded that I was living, but more importantly, I alive, a luxury she no longer enjoyed. Shocked, I quietly excused myself, weaving through the hall to the bathroom for privacy. I sobbed unabashedly, not caring about the strange women who pretended not to see me. I cried for Crush because she had so much more life to live. I cried for her husband, and friends, and family. I cried for those who love her. 

If you're new to the blog, Katie "Crush" Campbell is a buddy that I met at a young adult cancer camp, First Descents. After rock climbing in Moab, UT, we kept in contact for the past two years, leaning on each other, laughing, supporting. We started a YouTube series this past year, Cancer Convos with Crush & Coconuts. It was short lived, and fun when we started, but it was emotionally exhausting, and eventually it fizzled out. We wanted to inspire and share the nuances of life as a young adult cancer patient - a world most don't see. But, with our rigorous health demands, we simply couldn't maintain. And, even though the series ended, we remained friends, with the final text message arriving just Friday night, several hours before her death. 

I really don't have anything eloquent to say, nothing to make this heartbreak any easier. I'm numb now. Confused. I think I'll always be at a loss about death; I can't even try to understand the concept. 

I recognize the world that I live in. I know that I am in a subgroup of the population that is at a much higher risk of death. That death is expected, but, somehow, that doesn't make it any easier.

I mourn for my friend Crush. I mourn for her soulmate Andrew, who graciously sent a personal email to me to make sure I was aware. I can't imagine his grief, his pain. 

Crush had a sense of urgency the whole time I knew her, but I never got the feeling that it stemmed from diagnosis, but rather her diagnosis only intensified it. She made things happen. She had an expanded world view, she had seen suffering and cared about the human condition. I have no doubt that she would have continued to change the world, given the chance. 

Crush was able to sneak off a book toward the end, which she felt was her legacy. It's available on Amazon. I believe that her contributions, which are many, will connect her spirit to souls all over the world. She was/is one of the most determined, disciplined, curious, joyful, thought provoking people I've ever known. 

A Letter From Dad

My dad emailed yesterday, after calling in tears. He is deeply moved by all of the generosity, and compassion, and felt compelled to share his feelings on the blog. I love him so much, and am happy to oblige!

Hi Jess, 

Humility to a new level!

Greetings to one and all, my daughter has graciously allowed me to interject some thoughts on her blog. This is prompted by the results of the GoFundMe (instigated by some wonderful friends of my little Cricket).

Bonnie and I just returned from an arduous trip. It was difficult, but full of beauty. The goal was to procure medicine for Jessica in another country, a country that is extremely poor. The beautiful souls we met, who helped us, did it with joy in their hearts, but not much more.

Then, when we returned, we witnessed what has happened with Jessica's GoFundMe and I about fainted. As I scrolled down the donation list, I could not hold back my tears. I know that many who will read this don't know me, so let me give some background. I spent a year in Vietnam 1966 and then tested the hippie world for a few years before a stint in a vegetarian lifestyle. On to logging, trucking cross country, then to Alaska and working on the oilfield in the Arctic for 14 years. I was not a man prone to tears, but in the last two weeks, I have probably drained 4 or 5 gallons of them. It's been a good cleansing, but has reached a point where I am having trouble shutting it down.

My first 36 years were defined by the fact that I was a great consumer of spirits. From that haze, I have been a very selfish and arrogant individual for a large portion of my 70 years. So through the travails of my daughter over the last 6 and 1/3 years and the incredible patience and forbearance of my beautiful and generous wife, I am finally learning to change. 

I thank all of you for helping "my little girl". I cannot express the gratitude and love that I feel; you have left me as a pool of Jello. There are so many of you generous, loving, and wonderful souls. I need you to know that if there is ever something I can do to help you, it would be an honor.

Also one last thing - Claire-Darth-Kendrick-Kat-Isabel (stars of My Last Days) - I could never thank you enough for sharing your unbelievable stories and your sweet spirits. And Jessica, how such a wonderful and beautiful young lady can be related to me, I do not know. You have all inspired me to be true and genuine going forward. The six stories that are shared by "My Last Days" on The CW Network has filled me gratitude. 

God Bless all of you (God being of your flavor) mine being JC.

Love and hugs to all of you,
Bobaloo

Extended Version Episode Online Now

Oh my god, what an emotional 24 hours. We watched our episode (and Kendrick's too!) last night, and even on the third time, yep, I cried. Then, this morning when we watched the longer version on the website, and you guessed it. Cried again. But it's so lovely!!! From the music, the editing, reliving that beautiful wedding, uuuuuugh, it gets me every time. I am so filled with gratitude to everyone, for all of the help that we continue to receive.

The other day Dan and I were driving, in a rush, and we had no traffic, and I was telling him that I feel like the luckiest person in the world. I feel like everything always works out, or that no matter what, we can find fun in any situation. Gold dust floats around our life, maybe it's dancing angels overhead - I hope so, I like the mental image. I don't know how we have been this blessed. Dan smiled as I was laughing in amazement of our continued fortune, and then he said, "You're right, except for that small brain tumor thing." And I almost wet my pants. Hahaha! Oh right. That.

I've embedded the full version of our episode below (last night's was an 18 minute clip), the full one is 35 minutes. If you would like to use a link to watch in a larger window (which makes a lot of sense), you can click HERE. The longer version helps fill in the backstory, and ongoing details. I love watching everyone, their faces when they show up to the "birthday" party, and the intimate interviews with my parents and Dan. Those are the tearjerkers. What a lovely life I get to live, surrounded by these beautiful souls.