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.

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.

Navigating, Always Navigating

On Friday, I was walking between doctor appointments and passed a bush of wild-ish roses. The smell was intoxicating. I find that since I don't drive, I notice so many beautiful things each day, things that I wouldn't have noticed if I was whizzing by in my car. It's a much slower pace of life, and it's a gift. 

I'm completely overwhelmed lately. I have a wonderful new primary care doctor, and a fabulous naturopath, but I'm still reeling from all of the information and reality of my new treatments. Suddenly, my cancer seems painfully undeniable. I've been galevanting around Green Lake, taking care of myself with the low doses of artemisinin and diet, and I thought that I was really fighting Herman, but compared to the other cancer patients that I'm meeting, there's so much more that I could do. That I have to do, and, all of a sudden I feel catipulted into the cancer world. Before, I realize, I had one foot in and one foot out.

There are so many treatment options, and I need to exhaust them all, all at the same time. In about an hour I'll jog to a bus stop. By jogging a couple of miles, I'll avoid having to take two more busses. I'll head to my naturopath's office to start the first high dose vitamin C IV. On Friday they had to draw blood to make sure that my body could handle all the things that they'll be injecting. I'm currently downing an intense sprout smoothie which should work synergistically with the IV treatment. It's all about timing and combining, so I'm adding various things to increase the effectiveness. It's enough to make a person crazy.

I've just finished ordering some various equipment to create our amazing chemo drink, and now I'm just trying to figure out what to do next. We have to start growing a sprout farm, literally, in our house because it takes several trays to create just one morning drink, and I'm supposed to drink it every day. And that's just the sprout drink, in the evening it's time for the chemo drink. Between those two creations, I'll be going back and fourth with the IVs (curcumin, vitamin C, resveratrol), supplements, and possibly the artemisinin (it should be synergistic according to my naturopath). Oh ya, and the fun part, I need to get a port surgically implanted into my chest for all of the IV treatments.

I'm trying to be cool, but I don't even know how to organize all of my treatments, the growing of the sprouts, the ordering of pills, the busses to treatments, the management of our household, aaaaaaaahhhhh, I'm going to spontaneously combust before I've even begun. 

Armouring UP

This photo makes me laugh. I was trying to hand over my phone to Danny so that he could take a photo of Mount Rainier. It sums up my life at this point, completely sideways.

I have been exhausted, spinning around in circles, trying to take care of my body, rallying the troops against Hermie. I'm in a regrouping mode. Last week, I realized through further research, that I've been incorrectly doing the whole artemisinin protocol. Apparently, cancer cells do most of their reproduction during the night. The highest cell division between midnight and 1:00 am. My researcher who told me to stop eating after dinner, and walk in the evenings for a few hours before pills, never said a time to stop eating. He just said, refrain from eating for 3-4 hours after dinner, then take your pills and go to bed. So, being the old soul that I am. I decided to stop eating by 4:30 at the latest so that I could get to bed early. I like to be tucked into bed by 8:30 pm. Well, guess what, I've been sabotaging myself. The point of this low dose is to ingest the pills between 10:00 - 11:00 pm so that the artemisinin is at its most effective state during the replication of the cells (12:00-1:00 pm) - that's when the cancer cells are most vulnerable. The artemisinin has a half life of about 3-4 hours, so there was still SOME artemisinin getting through, but the doses would be incredibly low and quickly tapering off. Damn it! I'm always effing up things. Usually, when it's not life threatening stuff (like when I put my foot in my mouth), it's hilarious. But in times like this, I just have to roll my eyes, and cringe. I guess it's fitting that my mother's nickname for me is, our little Miss Brooks, from the old TV show. Miss Brooks was always "accidentally" getting into trouble, biting off more than she could chew - or trying to get one outcome and instead having it backfire.

So, my life is upside down ever since last Thursday when we realized that my early-to-bed routine was completely killing the successfulness of the artemisinin. It's nice to know that we can tweak things to make it more effective, but now, I'm completely exhausted. I've been walking for two hours from 8:00 - 10:00 pm every night with Danny, or with girl friends, and then I take my pills and head to bed, finally tucking in at about 11:00 pm.

My plan is to continue this schedule until next week when I can start the chemo drink. I want to keep fighting every single day, giving Hermie no breaks. My sleep is definitely hurting, but I know that I can push through for one more week. Once I get off my sleep pattern it's even harder to get rested, I can't seem to nap or sleep in, but I think this is worth it. I'm giving him a full frontal attack! Down with Hermie!!

I'm still on my whole foods diet, and I've been supplementing with borage seed oil (proven to attack astrocytomas), shark liver oil (immune stimulant), fish oil (helps heal the myelin sheath of healthy cells, increasing neurotransmission), maitake mushroom (proven to attack astrocytomas), shiitake mushroom (immune stimulant), lions mane (immune stimulant), vitamin C 500mg (antioxidant), and Vitamin E 400 IU (antioxidant). All supplements are taken in the morning, and then I'm taking the low doses of artemisinin late at night. On a side note, did you know that tumors can not use fat for fuel? That doesn't mean that I should go out and eat a chunk of lard, but it does make me happy to think about my fat supplements (borage seed, shark liver, fish, flax seed, etc.), all of those healthy fats are helping my body regenerate healthy cells, stimulate my immune system, and rejuvenating my body. That's exciting!!

All in all, the diet is working just fine. I'm happy with what I'm eating. It's lots of veggies, some lean meats like seafood, and then little bits of fruits, nuts, healthy fats and some whole grains. When I have a sweet tooth, I slice up a fuji and powder it with obscene amounts of cinnamon (which helps stabilize blood glucose levels). I'm enjoying my time before the chemo drink because I know that it's going to effect my taste buds and appetite. For now, I just get to enjoy my happy, healthy state. I'm mentally preparing for serious battle, putting on all of the armour (exercise, diet, artemisinin, supplements, breathing, etc.), so that I can come out a victorious warrior during the MRI on July 19th.

Misery Loves Company

Beautiful blooming tree in front of the Green Lake library

It's gorgeous in Green Lake today. It's sunny and the air is crisp. I just jogged the lake with Emma, stopping by the library to pick up a book that I had on hold.

Things have been great, just chugging right along with the protocol. I've made some changes and decided to allow antioxidants to my Monday-Wednesday routine. Those are the high dose days of artemether, and I'm supposed to limit my antioxidant intake because antioxidants clean up free radicals in your body. The free radicals are what are needed for the artemether to arrive into the cancer cells. Anyway, it's a long story and I don't completely understand it, but what I do understand is that my body needs an apple or a hot tea here or there - and some raw garlic.

I'm hoping that allowing my body to have antioxidants on the high dose artemether days won't hurt the progress. Guess we'll just have to find out in April at the MRI. I just can't live off of bland, boring, nutrient sparse foods. I crave tea more than I crave wine. Is that crazy or what?!? It's true though. Never thought I'd say it.

Other changes in my life include the removal of my copper IUD. I had no idea that copper causes angiogenisis (the development of new blood vessels), which is "a fundamental step in the transition of tumors from a dormant state to a malignant one," according to Wikipedia. Ooops. Thank you to my brain tumor friend Jessica for pointing that one out. Jeez. Seriously, I am so glad that I post so much personal information on this blog because ya'll keep helping me get healthier and healthier.

There are so many things out there to know, and things that can combat (or encourage) cancer. It's impossible to have all of the information, and that's why I love you all so much. I appreciate all of the help!

In about an hour my girlfriend Jess, who is currently living in Abu Dhabi with her husband Andre (awesome guy), will be arriving for a week. For those who don't know her, she's the friend who flew across the world to be with me when I was diagnosed and shaved her head in solidarity. I'm so excited to see her!! I also can't wait for Thursday when I take my chemo drink. She's one of those girls that will totally try it - I can't wait to see her gag and then laugh hysterically. Friends like her are priceless. I don't know why, exactly, I'm so excited to disgust her with my chemo drink. It's probably because misery loves company? Or, maybe it's that I'm a sucker for a good laugh. Regardless, I'm excited.

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.

Left Awake Craniotomy. That's me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W.

We're all in shock right now, and I don't even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee.

I guess I'll just start putting this all down on "paper" and you guys can help sift through the details. Sorry for the disorganization.

On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I'm put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they're cutting/removing. They're trying to make sure that they don't remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won't incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours.

My tumor is in brain matter. They will be removing approximately a tennis ball sized area of my brain. There is a 10% chance that there will be complications that could be as mild as no feeling in the tips of my fingers ranging all the way to loss of movement on the entire right side of my body, inability to communicate, inability to read, and inability to form thoughts, and of course death.

I will be in the hospital for a minimum of three days, longer if there are complications. One week from the surgery I will have a follow up appointment where they will have results from the pathologist about the severity of my tumor. The doctors at U of W said that without the pathologist's findings from the biopsy (which we will have one week after surgery) they have absolutely no idea if I'm going to need further treatment (chemo or radiation). They have seen so many tumors, and have seen so many incorrect conjectures, that they don't even guess or assume in any way. If we find out I need adjunct therapy during that first week appointment, they will immediately during that appointment introduce me to the right people, wheel in the machinery and start my chemo/radiation.

The surgeon is removing areas from three sections of my brain, the language cortex, the sensory cortex, and the motor cortex. So, if anything bad happens during this surgery and too much gets removed, I'm going to apologize ahead of time for any anger, frustration, confusion, inability to communicate, inability to read, inability to watch TV, inability to form my own thoughts, or express myself, inability to control my movements, and inability to control drooling. No big deal.

News of record - my Chief does over 290 crainiotomies a year.