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

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

Abbreviated 18f-DOPA PET Results

It's a long story, and I'm pretty pooped, but here's a basic overview. The "scan was concerning for active disease". It really isn't the biggest deal, it could have quadrupled in size. There's still questions surrounding imaging possibly being effected by treatments - not likely, but I won't rule it out, I'm always hopeful. We're trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I'm surprisingly pleased with the results. It's not the best news. As our neurosurgeon says, "It's trending toward recurrence"(there are two "nodules" they're watching). She wanted surgery, but we asked for a little more time. I'm not ready for the risk. I'm too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination.

Apparently even my happy kitty socks couldn't save the day, but they made me and my TSA pat down lady happy, so there's that. Sorry that I won't be letting people know individually, but as you can imagine, it's overwhelming to reach out to all you lovely friends, I'd be on my phone for hours. I'm hoping to give a better explanation about the situation in the coming days.

Life On My Terms

I had an epiphany last night. It was profound, and yet seems so simple, so clear. I feel like that's the story of my life. My mantra should be, "Look again, there's probably something obvious that will make you feel better."

To preface, I have to explain that I don't sleep well. Actually, I'm a horrible sleeper, one of the worst. Always have been, but of course now post diagnosis it's worse. If Kevin Hart was judging me, instead of Dancing With The Stars, he would give me a 2 out of 10 (and we all know how easy he scores). Most nights I start to fall asleep, and just as I'm on the cusp of slumber, my right hand goes numb, or tingles, or perhaps it's my right leg, and I snap out of bed afraid I'm about to have a seizure. Naturally, this is not conducive for sleeping. The other day, I shared how afraid I've been about my upcoming MRI. And how much I hate that. I hate being afraid. But what occurred to me last night is that my deep fear isn't the MRI, but what the MRI could set into motion, like another brain surgery, or radiation or chemo. But, while I analyzed those fears I thought to myself, I've already gone against doctor's wishes, and it has proved to be better for me, both mentally, physically, and even longevity wise. That I have been rogue for a few years with my treatments, and instead of being afraid of what doctors could tell me to do, I've done what I want, even though their words hovered, and have permeated my psyche instilling fear. But you know what? I'm the only one who can control the thoughts in my brain. I choose to allow fear in, therefore, I can also remove the triggers that instil the fear.

This cancer will be on my terms. I will no longer have that deep rooted fear because I will know that I will only do what I want. I will not be pressured out of fear. I will do standard treatments if that's what feels right. But if it doesn't then I won't. I'll cross that bridge when I get there. This is my life, my one shot. I don't want to regret a thing. And if that means I die young, then that's what it means. Truthfully, if I am going to die young, then it was probably going to happen anyway. But it will be my journey, and I will be true to myself.

Man it's a relief to realize the power I have. But, that power will be diminished if I stray from my heart. We all have our own paths to take, but we also have to blaze alone.

I mean, what is the purpose of this life? Could it be to remain true to yourself? Can that really be summarized in a one-liner? I don't think so. Life is vast, and minute, full of variables, and surprises, and gifts, and challenges. I don't have the answers, but I do know that when I finally fell into a deep sleep, lips upturned in a subtle smile, it was from the rolling thought of, Thank you for this life. Thank you. Thank you. Thank you. Thank you. Thank you.....

This morning, born out of the ashes of my new found strength, I made the most delicious smoothie in the history of Jess smoothies! I even made some smoothie friends.

Matcha Latte
1 tsp ceremonial matcha
warm/hot unsweetened almond milk (enough to fill the cup)

Fill the mug 1/4 full with the warm/hot milk, add the matcha, whisk vigorously. Once it looks nice and creamy, fill the rest of the mug with milk and do a final whisk or two.

Apple Cider Vinegar Aperitif 
1 tbsp ACV (with mother)
filtered room temp water

This one's pretty self explanatory.

Spicy Salty Sweet Green Smoothie
coconut water (add as you blend to the consistency you desire)
1/2 cucumber (with peel)
1/2 jalapeno
1/2 green apple
1/4 lime (skin and all)
1 large handful of spinach
2 leaves lacinato kale
2 inches of ginger (peeled)
2 tbsp fish oil

Blend it all together until it's creamy (it's the fish oil that gives the great consistency, but you can substitute flax seed oil, or coconut oil if you prefer, it may change the taste a little though). This batch fills two glasses.

New Friend

While waiting for Dr Liau we met a new friend. Kelly is fighting a glioblastoma, and has been fighting it for the past two years. She is a total warrior!!

Appointment went great! Will update later. No surgery this week :) We should have the appointment scheduled by the end of the day. So much to report, but the WiFi at the hospital is horrible.

Dr Linda Liau is a complete rockstar.

Burnell Family Visit

Look who stopped by! You might remember Ty from my post a few weeks ago, and from a few posts at the beginning of this whole blog. His mother (I always called her Burnelli) is a close friend from Wenatchee. We commuted together from Wenatchee to Ellensburg for a year completing our teaching certificates. She's now teaching, and I of course am not. Look at her beautiful children! So adorable. Ty had a follow up appointment from his surgery. He is such a curious, hilarious, sweetheart, and his little sister, the animal lover, has a heart of gold and the most beautiful storybook curls. 

 

If there's anything that can put a smile on my face, it's my friends and their children. Children are so full of love, full of energy, and laughter. They're like adults on hyper drive and it's so much fun! I need a nap now, I'm not going to lie (I'm laughing out loud as I write this). Oh what fun! Sweet little angels just like their awesome parents. It's amazing how life connects you to people. I feel so lucky to have so many amazing people in my life!

What would we do without the connection to others. That is a scary and sad thought. That's what I think about sometimes in regard to other cancer fighters, or people in general. It's so important to have love and joy around you. I'm lucky because I've always been a talker. I'm really social and with that trait I've been able to meet all kinds of people, and make all sorts of amazing friends. I feel incredibly blessed, so fortunate to have such lovely and loving people that constantly lift me up. There are people that are more reserved though, more isolated and when faced with a difficult situation might be sad, or lonesome who don't have others supporting them. That's why it's so important to try your best to be kind to strangers, you absolutely never know what others are going through. People you pass by on the street, in line at the grocery store, on the bus, or anywhere else you go could have huge burdens - in fact, they probably do, everyone has their story. I'm not suggesting that you have to get into a full blown conversation with people, a simple smile, I think, would suffice. It can be that little of an effort. I know that when a person smiles at me, it feels good. I hope I'm not being too bossy, or preachy. I know I hate it when people do that. If I sound annoying, you can always ignore me :)

Anyway, here's my favorite thing of the day. Tyler gave Danny and I a branch. How cute is that! Sweet, sweet child. He wanted to know if it was going to grow, but I told him it's probably dormant. It is winter after all :)

Adorable Firecracker, Little Ty

I have a very special family that I want to share with you. Their son, Tyler is such a joy, and right now he's about to embark on a very long phase of his life which includes lots of surgeries, and tons of hospital visits. Tyler's first surgery is on January 4th, and you can hear all about him, and his family on their blog. Please send them your prayers, or positive energy, or whatever it is that you do. They are such wonderful people, they truly deserve it!

Tyler's mother is a very dear Wenatchee friend who has been close to my heart for the past eight, almost nine years. She is a true kind soul. I remember when Sarah found out, while she was pregnant, that Tyler has congenital scoliosis. The doctor wanted to know if she would like information and the location for an abortion. Sarah was shocked. She was already so in love with her son, that letting him go was absolutely out of the option. Tyler is her first child, and from before she was even pregnant, we all knew she would be an unbelievable mother.

Please support her on her journey. Here is the link for the blog of her son:
http://www.tyburnell.blogspot.com/

I hope Sarah doesn't mind, but I took a photo from her facebook. It was just too cute not to share :)

Removing The Unknown

I'm still bald-ish with the gnarly scar carved across my head. The scab is slowly disappearing, and things are definitely looking up.

Ever since this debacle started, specifically when I shaved my head, I was faced with the option to leave my head exposed or to cover my head with a scarf, hat or the possibility of a wig. When I'm home, or with close friends I leave my head exposed, but for the longest time while I was in public I left my head covered.

I was covering my head, not for myself, but for those around me. I was trying to avoid the stares and the uncomfortable reality about my situation. I also didn't want small children to run in fear (although the only child that's actually seen my head was more concerned about my "owie" and wasn't afraid in the least).

I've noticed that people stare while I'm wearing hats or other covers. They can already tell that I don't have much hair, and eyes just naturally gravitate toward my head. They don't mean to stare, they're just curious. They probably don't even mean to keep staring. It has to be confusing that I still have my eyebrows and eyelashes, so they know that I'm not going through chemo, yet I don't have much hair and there's definitely something going on.

As I've been grappling with this head situation I've been increasingly comfortable exposing my head, and I'm starting to walk around in public without hats, or scarfs. Without a cover on my head, people know that what they see is what they get. They can see that I've had some sort of traumatic surgery on my head and then they move on. In my own (very unscientific) study I believe people are more comfortable with the truth than the unknown. They want to know what's going on under my hat, and by removing the secret I am effectively taking away the unknown.

Progress is Found in Odd Places

I have a confession to make. I've been procrastinating about my homework and helpful tasks. Although, I'm counting some of my helpful tasks like right now as Danny is watching the season finally of Lost and I'm working on my blog. I figure that this is great practice trying to focus on an activity while there are distractions going on around me. See, I'm pretty good at reasoning to myself that I'm actually doing productive things!

I don't think I ever said the results of my testing from my speech therapist in Wenatchee. The most glaring score was for my attention span. On a median score of 100 I had a 42. Ouch. This is why I lose focus, and can't complete tasks. Even a ticking clock can confuse me, and lose my train of thought. It is such a joke because before my surgery I have always been juggling several things at time.

It is also why I am really horrible about emailing, and facebook and I'm really sorry about that! Sorry guys. And, while we're at it, I also apologize that I don't much use the phone. I've called my grandma once and I've talked to Kaal every several days but that's pretty much it. It is insanely hard to talk over the phone. I do pretty well when I do face-to-face communication, but it really limits things between my out of town friends. I hope every knows that I love you guys! It won't always be like this!

It's weird, writing the blog is so helpful for me to work on my vocabulary and organizing my thoughts, but it's almost like cheating because my blog writing is a lot better than my verbal communicating. In fact, I think my blog is vastly better than my off the cuff verbal communication. It's a pretty wild sensation or maybe I mean realization when can't get my words out. Maybe I don't know what word I want. I have that happen a lot.

Ok. Enough trying to work on distractions (Lost) and blogging. I feel good about the results! About a week ago I wouldn't have been able to do my blog with the TV or any distractions. Progress is found in odd places!

Taking It For The Team

Lots of thoughts swirl through my mind throughout the day. The most encouraging concept is the feeling that I'm taking a hit for the team.

Statistically, people get tumors. It's what happens. I'm grateful that it's happening to me, instead of the people that I love. I'd take this over my family, over my friends, over my acquaintances, even over strangers. I believe that the fact that I'm a notch on the brain tumor list removes another person's name from the board. And it should be me, I have a security net of hundreds of people, from my innermost circle in this room to souls spread all across the globe. There people praying, lending support, sending love, and filling me with strength so that I can break through and conquer this adversity.

I'm serious about this post. I'm not a martyr. I don't regret any of this situation. I'm not angry. I'd be lying if I said I wasn't scared though. I like my personality. I like my ability to adjust and adapt and grow as a friend, as a girlfriend, as a sister, as a daughter, as a human. If I change completely and my loved ones have to grieve for the Jessica that they've lost, I hope that I can at least evolve into a wonderful new Jessica with determination, tenacity, and soul. Only time will tell if I'll come out of this with the same cognitive abilities, language and movement; the immediate outcome, post-op, is out of my hands.

Thank you to everyone for the continued love. Thank you to Laura for giving my family her house in Seattle, which carries a zen energy that makes me feel like I'm living in a spa. I have been moved beyond words by the kindness of friends, and friends of friends, and friends of friends of friends.

Tomorrow we conquer the rite of passage that will be the head shaving. Photos to come.

We Eat Tumors For Breakfast

The men in my life decided to give me a preview of my future hair style.

It was a great morning of hair liberation, but this afternoon when Danny followed up with Harborview we found out that they were unable to review my screens and that all will be reviewed on Monday. It's a pretty big bummer, and a little scary that I'm risking extra days since the neurosurgeon here in Wenatchee was extremely opinionated that I needed to get in for surgery ASAP (yesterday at 8:00am). I'm not sure how to consolidate all of my options, or figure out how to know when I'm making the right choices. I guess I just go by my gut. If I don't survive the weekend, please right on my headstone, "Should have followed the 1st neurosurgeon's surgery suggestion!"

At least I had some company for a pedicure. We're practically evil. We shave off all the men's hair and then pamper ourselves. I think I can do this tumor thing.