Today is not a good day, the sun even agrees with me

Shit shit shit shit

I'm no longer a candidate for gamma or cyberknife, which before would have been a crazy person's happy place from my previous perspective, 'till recently when it sounded pretty good considering the position I'm in with dural mets. That is a whole lot better than WBR.

Lesions sitting on my brain. Cancer in the brain cap. Most likely cancer in the fluid of my brain and spine is changing the game.

If it hadn't broken through into the fluid I would have been able to get Gamma knife. Well, it looks like it has and now everything is riding on what Dr. Nezami can do, because if his magic doesn't work then it's the dreaded, dreaded.

Whole brain radiation. What are those words? And "targeted" chemo to the cerebrospinal fluid? Do I have that right? I can either have a spinal MRI or a spinal tap. If I chose a spinal tap, no fucking way would I, they would pull 40 cc's of fluid out to test it for cancer cells which would prove there is cancer in my brain. MRI it is.

I trust Dr. Nezami is a damn genius when it comes to treating patients for cancer, if anyone can do it, he can. Maybe it wouldn't hurt to revisit cannabis again for inflammation, and maybe just maybe it can be tumor suppressant.

This is the life of a stage IV cancer patient. I get bad news on a regular basis. Sometimes I get ok news, like stability, it can be seen as great, but stable to me is this- cancer is taking a nap, fueling up for a full-blown samurai sword meltdown tantrum everything must die.

Something has gone terribly wrong in the past year or so, what was it?
Was it because I moved to SB, is there cancer in the air here?
Did the Roundup my landlord lied about using all around the house rear it's head after I churned up the dirt?
Was it the mercury poisoning from having the extractions 6 months before finding out I had advanced into Liver Cancerland?
What happened to me, and when? I'm not overloading on heavy metal toxicity, but I still think there is a link since I breathed in mercury vapor during the breech.

I was doing so well, until I moved. Is that just a coincidence? I wasn't great, there were ups and downs but they were spread out, unlike this entire last year where I crashed so hard and couldn't get up, it seemed like it was coming to an end. I would pop back up then get slammed down hard, again, recovering, Oh so slowly, and never fully. As it is now, I have trouble breathing, my liver is enlarged and I have cancer riding on my brain. All of this makes the bone cancer seem invisible where it used to be what I thought about most.

I am usually alone when I receive the next bag of shit news, and it's no different now. I have no one to talk to about this. I'm at odds with my mom over her inability to keep personal things personal, plus she can't handle any bad news and stay composed for me. I don't have the desire to console anyone, sorry, it's not fair.  I have one sister I talk to but she has been out of contact for the last couple of days, I don't want to bug her with my crap news, she's busy and happy to be home. None of my friends understand cancer and what it's like to be barraged constantly, they are nice listening boards but that's not what's needed, they don't feel what I feel, it's just impossible. That's why I come here. Writing is a safe place, even though every Tom, Dick and Harry can happen upon this, read it. The anonymity, or illusion of it is a cloak.


The brain surgeon can't do anything for me. It's going to be all up to Dr. Nezami with his big smile, Persian food and those smelly onion bags.

I want to go out into the middle of the street and scream, at the top of my compromised lungs.

Give the comb a job

Life is predictably unpredictable. The road comes up, the road goes down, opposites, relievers, resting, charging. Some nights I can't sleep at all from prickly, hot, sweaty, itchy skin and then I end up napping at 7 pm only to be awake now, writing to get sleepy again.

To live in the comfortable tidal zone, the ocean washing fore and aft, songs like Fire and Rain play in the background, underlining the poignant clarity of each shiny, tarnished, beautifully tragic execution of this here life. For good, or for bad. To stay in this zone, isn't that the goal, of the comfort-seeking human? Unlike purification by restriction, by having less. We always want more comfort and it makes us spoiled, it doesn't lead to happiness, because seeking happiness through comfort is a trick.

I don't like leaving the tidal pools, but nature made me a natural-born swimmer. Open ocean is where one earns their chops. Nature is a wise, playful, patient master of the plan who can seem somewhat cold-hearted at times. She isn't mean, necessarily, she just lets things happen, she does not intervene. This can be seen as cruel, but it actually is not. It just is.

I've been existing within the comfort of my own denial and self-inflicted positivity. This is a burden, make no mistake. The whole "be positive" job I have, the one we all have in the face of calamity, is just that. It's, being "on", but not just for others, for yourself as well.

Sometimes life is like a Damien Rice song. As much as this guy makes me want to slit my wrists sitting on the tallest mountain at dawn clutching my most masterfully gorgeous letter of resignation, at another turn in time his music can affect my mood by allowing a kindred feeling to blossom that's both supportive and comforting. Relativity is the key to the moment. You must know this to keep perspective.

Today, at my onc. appointment I saw my mortality through the clinical eyes of another. I feel positive about things mostly, unless I'm having a physically poor day and have to stop doing everything. I hate those days, I don't hate them, I just hate that they remind me of things I don't like to think about. I like being alive, for better or worse, this is all I have, but seeing the pained expression of my doctor as we discuss where she can direct me, should I choose to take the assignment, really did me in today. I felt like I was losing. There is no data for people with my dx for the conventional treatment I am doing. It's a hell of a lot like the holistic road I'm taking too. There is no data, so basically nobody knows anything, nobody can tell me anything, there is no assurance. Unless I can afford a real treatment center, I am playing at being my own doctor still.

I haven't let myself cry. I have been brave, strong and hard-working since the liver dx. I'm trying to plan a fundraiser that's happening in less than one month, I work as a waitress very late hours not getting home before 1:30 a.m. most shifts because I can't fulfill a commitment to an animal job, I have a full schedule of holistic food and medicine to make everyday, animals to clean feed, and love, a house to keep up, exercise to do daily, the new weight training classes are a wonderful gift- but tiring, shopping, research, leaving the house (!) so many days I don't, I can't.

My sister's best friend just died from breast cancer, just. I can't even, right now. Sometimes things I don't want to feel I just don't feel. I will do that later. With my own stuff and thinking of the pain my  sister feels, I just can't. I haven't caved in, I don't want to.

I am good at compartmentalizing my pain, I come to play. There has got to be a time to grieve though. When is the right time to grieve for oneself? How about never, is never an option? I don't have time, I don't have as much help with this event this time around. I am trying to do more myself this time, I hate feeling like a burden. When I think of previous sacrifices and generosity I have been bestowed with from past fundraisers, it's crazy, little mounds form hills, it takes a village really. Unfortunately, cancer is a greedy MF and always requires more more more.. I am so sorry that it does and that I have to include others in this thing.

Is all the effort worth it? How valuable is my life? Do I matter that much? In two generations nobody will know who I was, so think about that. A mere blip. Why do I try so hard to stick around, maybe being dead is great. Maybe being dead is so great I should stop fighting and just let go. There are answers out there but they all seem to cost a fortune, does anyone want to give me a fortune? I dream of working with my beloved animals again soon, but it seems less and less like a reality, more like the dream I had before sacrificing my life to learn how to care for them. I have the skills, but now I don't have the time tickets.

Metaphorically speaking, I cut off my hair to afford a beautiful pearled comb that now has no hair to adorn.

I hope tomorrow is a better day. I have a lot to face and get through. I ask that strength come from something greater than myself and money falls out of the sky. I do so want to get better so I can focus on someone other than myself. I need to help others, my foundation is dying for attention.

Cancer cancer blah blah blah

None of it makes any sense, shouldn't I be talking to a live human about my pains and fears and shit? When in the company of friends I avoid talking about cancer, or I brush it off and switch the focus back to them. People like to talk about themselves, so it's easy. I don't like to be the center of attention. The Observer is much more interesting of a viewpoint. The inner scientist in me begs invisibility. To sit in an audience is my speed more than being on stage.

I don't know how to talk about cancer except in long rambling Voxers to V, repeated monologues with some new detail added in about my current pain, or lack of something. When it comes to the blog it's all I seem to write about. I want to get stuff off my chest in a way that allows people to choose whether or not they want to learn about my personal battles on the regular. The reason I post a plain link and don't write an extra intro is to keep most people from clicking on it. I cringe every time I click on this to share it. Relying on the short attention spans of most people is how I deal with the feeling of exposure. My old blog was anon. It costs money to keep it open. It's been too long since I let it lapse- now it's gone.

There is enough breast cancer awareness. I think the best way I can shine a light on the future of breast cancer treatment is to empower people, this is your disease, not Pfizer's, not Merck's, not Bristol-Meyers. Doing what I can to make my disease a chronic situation is one way, to overcome it is the coup de grace, is the golden ring. I think where I drop the ball is not sharing how I've gone about it. My story is abundantly valuable, even though at the current moment I feel like a failure and my head hurts. I have had cancer now for over 20 years, that alone is amazing to me. How am I still alive?

Bad Burrito

So much for writing when things are good. When things are good, I'm out in it. Today I am a snail with salt sprinkled on it. The only reason I'm writing is so I don't go to bed yet, it's not sundown. My head is exploding in pain, I have several headaches.

Today I sat in weak sun amidst intermittent wind swirls. The birdies now know that I'm serving, they are so cute. The little birdies reveal their level of comfort already by how close they come. I hope the hummingbirds come back, they don't see my Open sign. The first day I moved in an Anna's Hummingbird gave me a long scan, I got Google-mapped hummingbird style. It also cruised the pink hanging glass candle holder. I rushed to fill my feeder with homemade sugar juice (uh 2 weeks later) so where are they?

I had plans to see a friend but unless someone is coming to massage my feet, spoon feed me, lightly play with my hair and not talk, I can't hang. That has never actually happened, so I have to turn people away. It's hard to know what to do to help someone in a low like this. Listening to someone talk is asking for energy I don't have. Not only do I not have enough for anyone else, I don't have enough for me. When I feel like this, it's hard to imagine being better.

It's my habit to turn people away but at the same time I fantasize about someone stepping in to take over. People seem very confused as to what to do or how to help. The perfect support person would be a cancer survivor who is also a nurse. Nurses know how to step in. Thank you, nurse community.

After PT for my shoulder I sat waiting for a car service that should have taken 1 hour, but took 3. During the wait, I ate poisoned food. They took money off the service but the damage was done. In that time I got cold to the point of shivering and my BP dropped. It still surprises me that I can get so jacked up. I used to run circles around people, I had boundless energy. I was manic, almost, in my habit of pushing the physical limitations of my body and sleep deprivation. I never wanted to sleep, just stay asleep once there. I ignored pain, and exhaustion. Now, I get my ass kicked by one long day. And a fucking burrito.

I know this will change. But this is so hard without soup. I don't have any soup. Soup heals all ails. If there were a soup delivery service, they would know the name Kleczko. They would be like: Will you be ordering the usual today, homemade chicken noodle soup, Polish grandma style? Yes. Extra noodles. I miss you Regina, you teeny tiny person who survived WWII with 2 small kids and no husband, supporting the family even. Where is that strength in me right now? I know it's in there. I see you.

But First

It feels a bit like regret. I never used it when I had it, but now that it doesn't work I swear I would use it. Convenience is often taken for granted. Because we know something is there for us we don't feel the need to appreciate it. It will be there later.

I miss my radio remote control. I miss its slim, compact little body that fit right in my hand. I need to replace the dumb little wtf battery. I can never remember to buy it because there are, like, 10 different little battery thingies that look exactly like that one. The cool thing about XM radio is the replay option. This song is transporting me back to ceremony in Peru. But I am not getting up a 3rd time to play it.

I'll call him tomorrow. I'll see her again. I'll mail that card. Even though I think about her everyday I can't get to writing that card, I'll have time later. I have a few important people in my life who deserve a bucket load of cards and hugs on this very day, more than that, but I'm so wrapped up in my own life to get to it. It needs to go on a LIST. That's how lame things get.

Things are much better for me here. I was living on an island. My people are here and my medicine is here. I can have a conversation about things totally normal in my world and I'm not looked at like I'm asking for a Moscow Mule in Mexico, 2015. They will catch up, give them 5 years, it will be a real thing.

I've moved back to one of my favorite zones but I still have to miss my far flung friends. There are some really struggling right now, it feels heavy in my chest to think about it. I want to be rich so I can make them do what I want. I would force them onto planes, make them go where I want them to, to get better. The sick ones anyway. The ones who are well would also get a plane ride, and for fun a coffee enema, so they don't feel left out.

I am sorry my life is really complicated too. I feel lame and disrespectful to not be there for those who have been there for me from time to time. I see you. I do. I feel like I'm under a lot of file folders with papers all needing to be filled out and I am behind in my job. Also, Gael just pooped one of his human-sized man-poops, the house is on fire, and I left my car running, locked, with a friends baby inside. I'm standing in the middle of the living room stepping left, no, then right, no, which way, what's first, what is most important?

I could see a light at the end of the tunnel recently but now there's a new turn in it. My list is long again, but I feel good and everything is improving daily. I am formulating plan number 33. My tumor markers are coming down, I have a lot less pain, I am able to swim and bike and possibly jog a little again. Stage IV is a lame label, nobody can ever tell I'm "sick". I have low red blood cells though because of my bone cancer gobbling them up. It's the reason I got such altitude sickness in Peru. It felt like a pipe was being shoved through my chest and stomach. No more hikes at 14,000 ft. on the day following arrival (note to anyone with pleurisy or low red cells).

It's hard to answer the question : How are you doing? What's going on with you?
As long as I've been fighting this actively, 11 years, I still have trouble answering that question. I can't seem to separate how I feel, with how I am handling right now, with how the last month, or months, have been, with what my bloodwork or scans said most recently. Sometimes I give the clinical answer and sometimes I go with how I am doing at that minute. The answer: Well, I'm technically slowly dying but, Uh, today I felt good. I hit the usual wall at 3:30 but I didn't sleep last night for more than 2 hours initially, after that there was no sleep. (There's a tiny pea underneath my mattresses, I just can't sleep unless everything is perfecK)

No, I can't sleep because my legs are flogged with heat in an alternate universe, sunburn, fever, sweats. I can't sleep through that. My lady's maid forgot to bring the cool washcloth. I don't have an attendant. Any extras lying around, I'll pay you in Kannacoco and homemade coconut kefir? I make stuff. Krissy makes stuff. You want to see me make stuff? I make lots of stuff. I'm always onto some new project. Problem is, Instead of perfecting something to the tenth degree I just start a new project. I am never bored. Reading, writing, learning, teaching, doing. How can anyone ever get bored? I call being bored, resting.

To me, writing is my relaxing place, it's close to resting. It's easy and dumb, like T.V. I can switch channels, nothing has to make sense, just be entertaining. Nothing's planned, I like to zone out on the keyboard. The best things I can think to write never get written, I like it that way. It's like taking out your phone or camera every time you are doing something that might be fun, you're interrupting the flow. When in a great moment you are there, you should know it is not to be fucked with. The best way to kill a buzz is to ask everyone to stop what they are doing to hold a smile. Take a picture of your friend, why do you have to be in it too every time?  One a month, or one a week okay, not every day. My take on selfies -- making a bland moment appear fun, because if you were having real fun, you wouldn't be clutching your phone like a crackhead with a bindle, jonesing for the first opportunity to, binge - on your drug. The selfie. That's right up there with the selfie stick. You. Are. Bored.

In all fairness there are times to take them. Road trips, llamas by a fence, the sneakie selfie, meeting your idol, the moment before pulling a prank, a concert. They key here is to keep it to a minimum. Do one better and get some friends who can take your picture for you. In the old days we would ask a passing stranger to take the photo, in the process they got to feel involved in making our memory. I always enjoyed that.

I have a new treatment place with the latest and greatest stuff coming out of Swiss-land. Not many places are doing this current treatment because it's so new. The biggest moment came today when my newest doc told me he is proud of me for all I have done to manage the cancer on my own, that I have turned it into a chronic disease. I felt proud. I don't get much credit from my own cancer community, not to mention any doctors. It's weird, my path is such a no-brainer, but I still feel alienated. I have never gone with the herd, but I share DNA with the herd. To be recognized is the same thing as being shown love. I am cut off by most of my cancer community because they don't respect or understand what I'm doing. It hurts, but mainly I fear for them because they are ignorant.

Nobody, except another person who has stubbornly pursued a natural path, can understand the isolation and judgement that comes from other cancer patients. I may not outlive this disease, but I know I have made the right choices for me, I have a good quality of life mostly. If I could go back and undo the chemo I did in 2005, I would with no hesitation. I educated myself during a time when even the internet had very limited resources for people who thought like me. A few years later that would start to change, but back then, nothing, not even a young survivors support group. I was "yelled at" for promoting education and holistic medicine in online groups. The ignorance is beginning to lift more and more. I am happy. This country is the North Korea of cancer options, except most people here are brainwashed by the system while at least North Koreans know their country is holding them hostage.

On a lighter note, I have a Kangan water rep giving me free water. Free magic water. In many many ways I am held, covered, protected by the people I have surrounded myself with. To learn how to manage deep hurt and pain and not isolate because of it is a hurdle I am always being challenged to clear. I am cherished even though I talk a lot of shit-- it's all in fun, but if you can't laugh at yourself don't go to a stand up comedy club, they will seek you out and make you so uncomfortable. And don't heckle the emcee, unless you came to play. I rendered one speechless, the next second I was like, Oh shit, he's going to burn me. He didn't know what to say and instead of fucking me up, he complimented me. That was fun. If I had bigger balls, or a really large labia, it would be super fun to try stand up. You can write it all ahead of time, it's not like you just get up there and start talking. I would do it if not for hecklers, deer in the headlights. I would become an alcoholic cokehead in one week.

The Hurricane

Damn. I only just read my last post, months back now, I think in December. I know way too much about this disease. Nothing surprises me, death and dying is the norm. I am not immune to fear myself, it invites itself into my head, but then again I have mastered it over and over. I just have to hold on.

It seems like I am watching the same scene play out whenever someone is dying, especially when they are famous. So much shock and sadness until the week passes and everything goes back to normal again. Until, the next person is dying and everyone is so upset again. And shocked. Can we just cut out the middle man?

How to share your disease with the public is a choice as myriad as the number of personalities out there, and the social media outlets supporting them. Bowie was private. He chose to deal with his cancer on a very secretive level. Others share their cancer trip with daily selfies, thumbs up, smiles. I find it interesting, as a study upon human nature. Why do some people seek privacy with this disease while others seek celebrity? Is it as basic as it being a coping mechanism, or does the current social media monster encourage the average person to believe they need to be somebody?

I've thought about this a lot over the years. I am always stuck in this feeling that this is mine, this is very personal, yet I am not ashamed of how I feel and what I have to do to live, therefore I should share it because what I am doing is unique.. except that oversharing is the hallmark of this current world we live in. People won't stop sharing. I am sick of people, and I am a people-person. The needy, self-important, shameless curated lives we read about everyday isn't real life. This Selfy Culture celebrates the self-obsessed. It's the norm now.

I am not an allopathic-centric medicine patient, so why not post everyday in hopes to "help others" so they know there isn't just one way to do things? Conventional-only stage IV cancer treatment is the wrong direction, in my opinion. In my opinion, it's a dead end with a lot of suffering in the middle part. People die eventually from over-treatment. It's fucked up. But I am not a poster. I'm not a seer or a superhero, I'm as lost and searching for answers as the next cancer patient. There's just something in me that won't let me follow the herd. The truth is what I seek. What is offered if I go the other way is a sure death sentence, this way-- no tellin'. I've heard all kinds of survival stories, I've met people who have beat stage IV, but will I be one of them?

I deserve credit for what I do. I work my ass off and also can speak for both types of therapies, I've done both. When I step off the holistic ride, I suddenly have all the time in the world. It's not great time, but it's not work. Holistic cancer treatment is a non-stop Think-A-Thon, Plan-A-Thon, Work-A-Thon. You don't have the luxury of just suffering, eeeh that's a joke -- suffering is not a luxury, as a cancer patient, it's a right! Suffering through painful treatment side effects suck but if anyone thinks doing holistic is side-stepping suffering, think again. I still suffer, but I live a much better quality of life physically than if I were to do only drugs. Sometimes though, things still go terribly wrong, and I think I'm dying.

The worst part of the holistic direction is the feeling of personal responsibility. The heavy burden of guilt we live with every moment. "Am I doing the right thing?? Did I just fuck that up? It's my fault. My tumor markers have gone to hell. It's my fault. I'm stupid. I screwed up again. I can't afford what I need. I feel trapped. I have no life. It's all my fault." It's a rock hop up 7 Falls. Run, run run! Rock hop, keep moving, if you slip and your shoe goes into the creek you keep running anyway.

I see my life in pieces. Not that it is in pieces but that when I see the future I only see a couple of months, in little pieces. Most of what's there is missing, the calendar pieces are missing in big gaps. They are maybe treatment bummers, or sleepless weeks that turn into months. I don't know why I'm seeing that, but I can describe the missing sections. I see the future sometimes so it's not that odd.

I knew I would have short hair in my mid-30's. I foresaw that 10 years prior. I didn't have any plans to cut it all off in the future, but I had a stronger-than-strong pre-memory of having very short hair in my mid-30's. I knew I was going to get cancer, too. I felt it coming. I know a lot of other things.

I started writing in grade school, like most little girls with diary's tend to do. Those locks were easily popped open, everyone knew your business. If I had a kid with a diary I would make sure that lock was legit. Sucks to know your dad probably read your diary. Later, later, writing became my way to express the truth without interference from others. My speaking skills are tight. Just ask the V, but when it comes down to it I prefer writing to attain my deepest form of catharsis. It's a beautiful, freeing tool.

I feel fooled and awkward, annoyed, when reading something overly-edited, flowery, or pretty even. I see writing as a tool to be used to tell a story, a raw account of the truth. The truth is not a pastel fucking painting. This isn't a popularity contest where people's ego's get fingered for a "like". I'm trying to slow this down, so fuck it.
If I won't be honest with you, nobody will.

I just love to write, and it's been awhile. It's time to stop putting off my favorite thing to do.
I couldn't wait to learn to read when I started first grade at the age of 5. All I wanted to do was learn to read and write, and copy dinosaurs off the wall next to me in math class homeroom. I would draw them in between lessons. I can't explain how creativity works, how writing works -- Why it works.
All I know is that when I'm done, like I'm getting close to being now, everything is fixed. There. All better.

EL DIABLO

It feels impossible to think good thoughts. Every ache, every pain brings fresh doubt and fear. I need water, I need food. I live on the moon. I don't have anyone to help get me anything.

That amalgam removal fucked me up. A little leaked out during extraction, I could literally smell my tooth. By the second day I was in a world of pain, excruciating bone pain, unbearable indescribable pain. For the next few days all I did was detox, waking to sleeping. Drinking "sand", enemas, baths, tons of liquid, teas, crying, stretches, sweats, I did and took everything I had, I tried my hardest. I hurt so badly. It subsided but I'm still weak from it. I just want to feel normal.

The medicine I wait on is taking too long. I don't feel protected. I seem to be getting worse. My chest houses sharp stabbing pains. There's pain running down my left leg from hip to ankle. Shoulder and back pain throbs in and out. I have only been awake for 9 hours but I am already wanting to sleep. Last night I was almost manic with energy. Today, nothing.

My parents don't know anything I take, make, do, they're in the dark. They don't ask questions, show interest, retain any information, show up for appointments unless I freak the fuck out after many months of feeling frustrated and alone. I practically have to scream and shout. They then freak out themselves realizing -- Holy Fucking Shit, my daughter has the kind of cancer that kills, I better go to a scan or something with her because she's going to die! Then it's like they punched a fucking card, are clocked out for however long until I get upset again and scream and shout.

I think they like to live in denial as much as everyone else. I wish I could escape too.

Who can I call on who can relate, everyone keeps dying. I lose someone, I meet through some cancer connection or another, almost every month, sometimes twice in a week. When I get to the point where there is no more reason to fight I want it to be over quickly. None of this hanging on for 3 months in bed. I might speed up the ending myself when I know it's futile.

Imminent doom is the hallmark of the mind-fuck that is living with incurable cancer. You never know what each new pain means. You can be living high for a minute and low low low for weeks. Each time is a little worse, a little longer, and you think to yourself, "This is it". I can barely walk, I was dancing yesterday. I'm not going to bounce back from this. I have had 20 bad days out of 26 this month. For whatever reason, it doesn't matter why. Being in a low state with no relief is the ice than can split the boulder in half. 

I stubbornly acknowledge that nothing stays the same, everything changes. This will change. My poor outlook and fear and pain will subside. In it's place will be hope, humor, and relief. I hate that I know this but can't see or feel it. Experience tells me to hang on, but my ego tells me to give up. I am again standing at the edge of the cliff hearing the chanting below, "Jump, jump, jump!"

Why is cancer such a fucker?

There is a light you can't always see

I have said it all year, this is my year. If this is the last year, it's all good. I got almost everything out of it that I really wanted. There are a couple of things on the list but you can't have it all and that's okay. My road is difficult, I am grateful for anything going my way.

I picture myself falling closer towards death like a freakishly talented leaner visually defying gravity with ease and grace. My body might be attracted like a metal object to the MRI machine in slow motion, but my feet are firmly planted. I reflect constantly on where I am at this moment. It's most important to me to be aware of the current moment even though I know I am made up of billions of former moments and all that has come before is affecting how I feel and see life. I want to be new all of the time. I'm somewhere between impartial observance and writing books in my head. I love to laugh at people, in my mind. Joyfully, jokingly, with mirth and a devilish bent; it gets me through. Laughter is the best medicine.

It's not in my DNA to follow the herd. I don't like to copy people, I don't like people copying me. I'm still in 3nd grade with little sisters. Stop doing what I'm doing, do your own thing. Some people tell me they think I'm weird. I'm not weird, I'm original. We're all potentially original. The problem lies in looking to someone or something, some religion, the current pop culture style, or some way of being that you think is cool, better, smart, sage, most of all popular and acceptable to copy. It's in the words people use, ways they dress, ways they do their hair, places they go. I rarely meet anyone original. Is it the unavoidable intrinsic nature of people needing to be loved, to blame?

When I was younger I looked up to people who could tell a really good story, but I felt tongue tied and shy. I didn't like to be the center of attention, or looked at by a lot of people at once. As a kid I was painfully shy, the kind of shy where I would cry if I had to do something that required talking to strangers or being put on the spot. That's odd since I remember sharing in 1st grade. I looked forward to sharing. I guess it was because I was focused on an object. I don't know. I cried all the way to school everyday I was late because I believed kids would notice and judge me. At the age of 5 why was that a problem already? Being observant as an adult has served me better. Kids have very little power and life is confusing. What can a kid do with a brain like that? 

I was not a carefree child. I used to look at other kids and wonder how they could play so freely. Why was I observing this in early years of grade school, why was a little kid so concerned about shit? I don't know why I was like that; walking around in a kid's body being a worry wart. I worried and worried. I observed social structures within friend circles learning early on that close friends can turn on each other. I lucked out with my best friend because she was mainly loyal, but by 6th grade she switched to another best friend, going back and forth. I was in a grade higher, even though she was older. I skipped a grade so we had separate friends from that, but I felt manipulated. She used to lie often, called them "white lies". It wasn't until many years later that I came to the realization she lied to me too. The common excuses to get out of plans were: I have a migraine/my stomach hurts/I just threw up. She would use those on other people to get out of plans with them, but she also used those on me. 

We are still friends but not longer best friends. She didn't fight for me, but I didn't stay and fight for me either, I just walked away. I don't fight with my friends. Those relationships are fragile, not like family. I have since forgiven her, completely, and love her to pieces, but our relationship will never be the same. I was forced into a corner and needed to adapt really fast. It was a huge learning curve. My pride, always my pride, to mask the fear. I learned very early to hold my head high and not show any weakness.

It's hard for someone who's had everything handed to them to understand what it's like to be forced to fend for themselves. I was promised a place to live when I went out there to visit, no intentions of staying, but the offer was a standing offer. I unintentionally got stuck there when a different friend took me camping in a national forest with a large amount of marijuana in his car and got us both arrested. He could have told the truth, but instead he let me take the fall with him. I had done nothing wrong, I didn't have any previous knowledge of the trash bag of weed under the mattress in the back of the truck. That little mishap got me stuck in Boston without warm clothes, money and a place to live because the judge ordered me to not return home until it was over. I faced a felony. My friend's spoiled roommate didn't want to "live with a stranger" even though there was an empty bedroom, unused. The empty bedroom belonged to another rich girl whose daddy was paying her to party and go to school in Italy. She wanted more than I could have afforded to pay for a room at that time and was inflexible on the rent. She would rather it sit empty than let me live in it for reduced rent. My friend didn't stick up for me, her best friend of 15 years. I'm not bitter anymore but I felt that ghost-knife in my back for many years, thus we didn't talk for a long time after that.

I look at experiences and know they shaped who I am today. I can handle a lot before I cave in. And if I do, I always get right back up and start over like, what, I was just resting on the floor for a minute. I was kicked out of the house by my mother when I was 15, as a "scare tactic" but I left. I believed it was real. You tell me to leave, I'll leave. I never understood getting hysterical, that is wind I might need for sailing later. I don't get people who go nuts. If I get bad news, my first inclination is to start planning an exit. A treatment. A plan. 

I'm going to bed it's been a big day. I had more mercury fillings removed, the biggest ones. I had the other side done 2 weeks ago. I hope I get good kickbacks from this. Maybe the mercury has been wreaking havoc on my meridians and overall immune system, and now I will be stronger for the removal. I only have a crown to do, but it's a one-day affair, unlike most conventional crowns. Don't put metal in your mouth, and don't look back in anger. Peas and dove

My brain is broken

It's oddly quiet. I can always hear something out there, whether it be a siren (homeless person Od'ing again) the train, a car wooshing around the curve of my one-way street. Nothing. Not a hoo from our owls, nobody closing a car door, Hugo isn't crying next door from his parents practicing tough love. Absolute stillness. It's really fucking weird, actually. Not even the sound of leaves rustling in the breeze. Something has sucked the noise away.

I listen to music often, most of the time. All of the goddamned time. This conscious no music thing I've been doing is so I stop trying to escape my discomfort, at times boredom. Without music to distract and entertain me I have nowhere to go but inside.

I'm discontented right now. My discomfort level is about a 9. Not physical-- that is at about a 7. I am so confused. I'm having chest pain, and not long ago I felt my throat "flutter" like it had the heartbeat of a desperate creature, trying, trying, then giving up. My jaw started to throb a little bit and my stomach tightened, twisting, throat tightening, stabbing pain behind my right breast muscle. Wtf is going on? I had trouble breathing last week, ergo the E.R., but why are these symptoms up and roaring after having taken CO? Isn't this shit supposed to help with inflammation? My lungs are inflamed, supposedly, so...?

The familiar displeasure with food has returned. I thought cannabis oil was supposed to make me hungry. It's a lie. It doesn't do that. I just ate some mashed avo mixed with roasted Anaheim chiles I blistered in my toaster oven. Not bad, pretty tasty, not to be confused with actual goodness. It was the kind of "pretty tasty" that comes from observing the flavors as if I had entered someone else's body, was allowed to taste their food while they ate it, but not allowed to enjoy it. This is familiar. This game is all about texture. I used to eat based only on texture, since flavor was a foregone conclusion. So, it's not the high THC CO, it's all CO? Beautiful, can't wait to be anorexic again. As long as I'm alive, right? It's all worth it? This is a form of chemo, it has it's own side effects.

Anyone who has ever had the nerve to say doing holistic cancer treatment is the easy way out, I invite them into my life for one week. One day. I do both. There is no easy way to go, but this way is a lot more work, conventional is no work in the sense that it's all left up to the doctors. There is more time to sacrifice with holistic than conventional, and it's still painful, it's hard. There is no easy way to go about this. I am sick so much of the time. Sick, meaning nauseous, weak, sleepless, nervous, depressed, throbbing bones, headaches, confusion. Mainly it's a massive loss of energy that keeps me from wanting to even listen to someone talk, or engage in a relationship where there's fun to be had. Feeling like I would be the wet blanket makes interaction unappealing. And there's constant work to do on it, most days all I can muster is this kind of work with nothing left for anything else. Work to live.

At times like these there doesn't seem to be a way out. It's the worst time to look at any sort of social media. Human culture is narcissistic, I can't handle it. When dealing with real shit, the displeasure I feel from seeing the millionth selfie from the right angle. It's transparent, it's self-indulgence to the power of 10. The age of the Attention Seeker. It's this culture. Born into it, not buying into it.

This is what keeps me from wanting to share, especially in regards to cancer-- and that crap I deal with constantly. I don't share my pre-scan, at the scan center, post-scan anxiety, with the world, complete with pictures of me looking adorable in a hospital gown giving the iphone the "thumbs up". There's something desperate about cashing in on your malady. People know I have cancer, I don't need more sympathy, or empathy, or whatever it is. Documenting this 'day at Disneyland' will be saved for a book if I ever get around to dying a little faster I might feel the urgency to write one, slap a cover on it and call it a Life. I'm as ready as I'll never be.

I am not unaware, sometimes I wish that I were, but no, always been painfully overly-sensitive to being aware. The kid that couldn't just be a kid, I had to feel very sensitive to others pain. It's only not a burden when I am with like-minded individuals, or all alone in nature. Being, makes is hard to not be. It's a very lonely life at times. People come, people go. Many of them can be fake. That's where it can get painful, people are regularly full of it. They just tell you what you want to hear. It's never about you either. It's always about them, because really, that's what people care about most of the time. They are busy being fake as shit for people who like them for all of the shallowest reasons. For many, you are a stepping stone on their way to feeling validated. You have to be careful that you don't do that to other people too, sometimes when you're entrenched in watching out for yourself you don't realize you are actually hurting other people.

I am complaining because I feel like it. I feel bad right now. It's going to pass probably, or it won't and I'll get the worst news of my life thus far, which is less than a day away. In this game, in order to keep player status, -- Oh, there's Hugo :( pick up your poor baby! .... one must learn to find silver linings. I am an expert level silver linings master. But I'm also human. I have bad days, worse than being fired, losing something precious, crashing the car, finding out you're being cheated on.. got that all topped and topped, and still I can crumble after so many days in a row of keeping it together. There is a limit.

The remedy is what? Keep going? Be in the moment? Right now this moment sucks. This is the cruel joke of being in the moment, but this is all anyone has, that's why the music is off. That's why I'm not in a bathtub. I'm letting myself suffer to see how bad this actually really is. My stomach is in knots, and it's hard to breathe. I'd love to get drunk off margaritas and order a pizza. I don't have the wiggle room to drop the mic, I am behind right now. I am down. Cancer blows, man. I want to toss it away, but it's not an option. Must always face it. Must always play make-a-deal with it everyday. Waver from the path and suffer.

Ya, so I don't need to anyone to look up to me. I could sit here and write pretty little crap that would make people love the fuck out of me. I could play my mini violin and the get off on all of the back pats and high fives, because everyone loves a cancer warrior triumphantly clawing her way up and over the charred remains of her former life, head high and fearless, smiling even. It is real, but it's a snapshot. We are all brave at times, I have racked up a big file. It's in my nature to want to be in charge of my own outcomes and fight my own battles. But, I also hate the attention I sometimes get for being brave. It's not a choice. It's a 'not-a-choice', choice.

True bravery is being who you really are, fearing rejection, and still going for it anyway. I have yet to do that 100% of the time. On one hand I am completely genuine,  I will tell you exactly what I think, regardless of what you think. As non aggressively as I can muster I will reign in my scary passion and share what is most important to me. Simultaneously there is a big wall that is always up.

We all inherit a job as an adult. We must figure out what is holding us back. Why is why, is why, is why, is why. There's no real handbook but everyone has a mf opinion on who you should be, as if they were in charge, as if they have been alive for hundreds of years, and have been very successful. If I ever find that person I am going to stab them in the heart with a wooden stake because they are a vampire and I am their next meal. Nobody knows shit. It's simple. It's true.
People are all just guessing.

Motivation is not knowledge, it's a form of primal intelligence. Insisting on your way and getting it does not make you smart, but having power gets you your way. True knowledge just leads to more questions. The smartest people ask the most questions because they do the most thinking. But think about it, if one is always asking so many damn questions how much do they really know? The elephant made it through, but his tail got stuck.

I loved that scene in Rumble Fish when Motorcycle Boy defended his denial as leader. Exasperated, he said, "If you're gonna lead people, you have to know where you're going." We are all on a solo mission. This is your quest, this life. It is a mission for one, don't think for a second that your outcomes are anyone else's responsibility. That's a facade. It is a comforting lie to put one's life in another's hand. We do it, but it's a lie we co-sign.

I am too tired and not making any sense probably.

Hello bed. I will likely lie there for many hours to come, awake.

But thankgodfornetflix
                                  hashtag later

Newport

I grew up in southern California where sunshine, salty eyelashes from ocean swimming, and yearlong tans are the norm. I grew up across the street from the beach, but then later moved to a very family-friendly city because my mother was pregnant with kid number three. Apparently, a tract home meant stability in the 1970's. I was 5 and a half years old when we moved. We only moved 12 miles inland, but at the time it felt like 50 miles.

I never stopped missing our cozy brick beach apartment. My mom used to brush my wet hair next to this little fireplace before preschool. The fireplace was tucked into a wall, in the kitchen. It was a micro fireplace that was arched on top. It looked a little like a pizza oven. It was put there for a little girl to grow fond of, to be forever remembered. I had a kitchen fireplace, and lived across the street from a giant sandbox bordered by the ocean on one side. What more did a child need?

When I was three years old my mother asked me while a tape recorder recorded us, "Out of everywhere in the world you've ever been, which is your favorite place to go?" Thinking I would say something like, "Disneyland!" Without hesitating I had said in my bubbly kid voice, "The pizza Place." I had meant Zinos Pizza, on the peninsula. I liked it because of the sign. Each letter had a different colored dot behind it. Not unlike the mat used in the game of Twister. Funny, what kids like. Interesting what makes it into the old memory bank. That pizza place is long gone, but I can still see the sign in my mind. I wish there were such a thing as a time machine.

The T is silent

Im sitting here reading a little about skull metastasis. I have cancer in my skull. I can feel it right now, pulsing, it's painful. 

"It is difficult to say anything sensible when discussing prognosis, as clearly the degree of systemic disease, and the primary tumour and its response to therapy is going to have a huge impact. In general it is safe to say however that in most instances, skeletal metastases represent advanced disease with poor prognosis, typically measured in weeks and months." -- some bullshit website that is messing with my mind. Wait, excuse me, weeks and months? It's already been a year since this was found, so go fuck yourself  "weeks and months." Okay?

This is why I don't read about stats, I'm the outlier anyway, the atypical BC patient blah blah blah. I've already outlived the competition by a couple of years. Jk, it's not a contest, we are holding hands and skipping together through the tunnel of horror.

 My bp won't come down, I can't sleep, it's hot in here. I have acid reflux again. It seems that anytime I eat anything lately, I get this burning feeling in my throat. I can eat some cereal, that's mellow, right? Wrong. I get acid reflux. I feel like this could turn me off of food again. No, please, I can't do the 98 pound thing again, I just got my butt back.

This time last year I was getting ready to die, or so I thought. I was scared out of my mind. It's happening again. The high bp, the head pain, the dizziness, weakness-- but can that be, I've been swimming a lot lately, I'm not that weak, except lately in the pool I've been out of breath too. Like there is something pushing on my chest. Grabbing me by the throat.

Every day is the same as the day before. I can almost taste the pressure in my chest. There's a sense of something heavy that has a flavor, it's so weird. It makes no sense. It's there right now. If you've ever had anxiety attacks, or hypertension, I think this is a similar feeling. I was feeling scared last week but aware enough to not attach anything to it, I just observed it happening. I watched it happen, experienced it, and when it didn't go away I went to the ER... and they told me nothing. No surprise there. 

I never write much down anymore and because of that I can't remember my life very well. I want to know what my life was like when I was feeling better than I do now. Or, I can be grateful later for having dug myself out of it one more time, because I'll get past what is going on now. I will. 

I'm just afraid of them telling me I need radiation. I don't want brain radiation and there is no way to avoid that if your skull is getting blasted. I am not an experiment. I need something better, stronger, safer. I ordered more CBD oil, that is tumor suppressant. I am going back on the cannabis oil. It wasn't a horrible experience, I was pretty happy. I was high everyday until I got used to it. I know the CBD's are anti-inflammatories so they should help with the pain. Yay! I just yawned, it's 1 a.m. maybe tonight I can sleep before 3, Oh -----iwishiwishiwishiwishiwish. 

I've got to stop saying "I wish" This is about accepting whatever is and not thrashing against life. That is what makes one unhappy. Is there a law against not sleeping? Am I a bad dog if I don't sleep early and get up early? Some people try to make you think so, but it's not the case. I have wicked insomnia on top of already being a night owl.            
            Hoo hoo. 
            There is no T.

It's always the quiet ones

August 22 2015

The Fluffy One is next to me, warming my thigh with her impeccably clean, permanent onesy. Today wasn’t another scary, shitty day. Really great news. I continue to ride that high. I did cry in the pool momentarily, really sneaky and quick into the gutter on the far end. It's impossible to cry while swimming. I learned that back in grade school. Swim team; dominating my life throughout elementary.

I couldn’t even remember if yesterday was the ER day, or if that was the day before. It took fb to tell me which one. I can hardly ever remember what I did yesterday. Yesterday was uh, FRIday, I remember we used to emphasize the FRI part, because of LSD. That's probably what gave me cancer, that one time. Just kidding. That can’t be true, because then every hippie from the 60’s, and all of the Deadheads, would have cancer. 

I probably got it from baloney, or Christian bible study for that brief church fun we all had to endure when someone in my family became born again. Born Again. I don’t know .. I was born once in this lifetime, and I’m still working through the trauma. Once was enough. Thanks.

On the other hand, I would like to experience death more than once in this lifetime. That would be MUCH. That is a big, nice sleep, and what a vacation, and what a perfect way to help insulate from all of the bullshit. Life is harsh. We could all use a real break from it. Even on vacation most people don’t let go they are counting down the days, letting the outside seep in, to poison the moment. Don’t we do that in everyday living?

This is hell. Life on earth is Hell. If you don’t believe me, think about it, for like, 25 seconds. It’s got all the hallmarks of a hell. Go look at the bible again, or, just go look at it for the first time. I’m not saying all of life on earth is hell, but a lot of it is. Me, I’m getting my Hell out of the way first. You Are Here. You can all be surprised later, but this is how it is, this is how it’s meant to be. Why is everyone acting so surprised? Or let down? 

I don’t expect much, except beauty, that is always present. Everywhere I look I can see it, and humor, humor is the other constant. There are negative things too, like shadows that can step forward, eclipsing the good shit, but then they step back again. Life is always doing that so don’t get hung up on the right now, because it’s going to go away. Don’t expect to be stuck, don’t get attached to relief either, get rubbery, and listen to good music that touches you emotionally so you can stay connected. Spend time thinking, or maybe just shut up for a minute.

The way I feel about life, is excited. On the outside I think I can appear bored, or not very excited, or just like I’ve seen it all before. As a kid it took a lot to get me excited. I was very understated when most kids would have been doing cartwheels. I envied their enthusiasm. When I found out I had made Junior Olympics, I had said, “That’s great.” in a super quiet voice to my coach while my mom acted like the next contestant on The Price is Right. I felt like Lisa Bonet as a teenager, from that one show. Just all chill, but really, I was so excited. Animals see it. Anyone ever see me train, I have to try to calm down.

Enough about me, how about you? Are you living a real life? How bold are you on a daily basis on a scale of 1, to singing out loud in public while alone? How many of you eat out alone, or go to a movie alone, or just sit somewhere without being on your phone? 

I’m alone a lot. I don’t need anybody to entertain me, but on the daily it can get very lonely sometimes. I won't compromise by spending time with people who aren't living, and that pretty much leaves me at fucked in the town I live currently. I should start a support group, call it Margaritas at 6, Local Dive Bar. I'll do all the talking because I'm usually the person with the most observations. In this town. This town fucking sucks. I love the town, but for the people. Blue collar hell.

I can feel the mets. My head is throbbing in the same places it was last year, when I went down. I don’t understand, because. it. does. not. compute. From the outside it makes perfect sense, but from inside, this just can’t be. I’ve been in treatment, I’ve been doing inner work, I’m happy. You can’t get taken down by cancer when you’re happy. It cannot be. I wish that were true, it’s just not. You can be as happy as you want, have the best care, best family, best attitude, best friends, you still get struck down. 

I don’t take anything for granted. I am amazed at the life I have even though it’s not what I asked for, or dreamt of. I thought I wanted to have children and an insane animal career, but no, I am just alive, pretty much. I didn’t get to make my mark on the world. I am pretty poor by financial standards, and I have no legacy. I am kind of broken, but not in spirit. I feel more alive than most people appear to be, so that’s weird. 

To not experience an appreciation for life, actively, is a waste of the biggest gift you will ever possess. Be aware that you are alive, you are breathing, every moment is new and every day is a surprise, even though you write your life like it’s Groundhog Day. If you are just a boring person by nature, embrace it, the world needs boring people too. Just don’t complain your life away, that really gets on my nerves. People are allowed to complain for a minute, but then get over it. Someone always has it worse than you and they probably handle their shit 10 times better. Nobody likes a victim.

Be happy. You have a hidden talent. Everybody does. That’s the best; when you meet someone and they can do something, one surprising thing, really well. I love that about people, you just never know who anyone is until you take the time to find out. Sometimes I envy blind people, because they aren't influenced by what people look like. If everyone could learn again, to hear with their hearts, instead of just their eyes, this would be a more realistic world, instead of a world blinded by expectations and false idols. A beautiful mind, is what we need to be happy. 

Da blues

I need a job.

The problem with my line of work is it can be physically demanding (which I love except I wear myself out leaping and dancing between enclosures) I dig working outside, and being around wild animals makes my heart flutter. I feel the intense feelings of love one feels when one is in love. No exaggeration, no joke, this is a real thing. I love working with animals of the wild variety. There is nothing more fulfilling, thrilling, exciting, fun... I run myself into the ground doing it. Once I get going it's hard to reign in the energy. I don't cut corners. I always do my job as best I can, I will go out of my way to make sure nothing is undone, or neglected.

When I was working at Rancho and the girls had gone off to a conference, I had to take care of the animals alone. This would have been fine except for 4 things. One: I'm a trainer not just a keeper. I took on 9 cats to train, aside from the lynx, everyone got 2 sessions a day. The time spent shifting everyone, making the individual meatballs that day, training and keeping records was my normal job. Adding cleaning everyone's enclosures alone without someone to help shift added a lot of time to the day, plus enrichment aside from training-- browse to cut etc. Two: I had the llamas and the zebras to shift, clean and feed. Trying to not get kicked and bitten by the female zebra was a real threat that had to be carefully avoided. That could take a while.  Zebras are sketchy. Three: I have stage IV cancer, I shouldn't be busting that big of a move, I should have put that much training off for the time being, just stuck to the basics. Four: the temps were in the triple digits.

I ended up with heat exhaustion from working 4 days in a row with temps ranging from 104-111. I worked 12-14 hour days. On the fourth day I couldn't feel my arms, my body was shivering from cold, my skin color was between yellow and gray, and when I drove home through intersections I wasn't sure if green meant go, or red did. I had to think about it, hard. That was a terrifying 25 mile drive. I had my sister take me to the hospital at 1 a.m. My blood pressure was through the roof. I was severely dehydrated and some other shit I don't remember.

The point is, I am afraid of my commitment to working. Doing what I love gets in the way of rational thinking. Anyone out there want to hire this monster? I think I learned my lesson this last time, but I feel a mild fear when thinking about this next job, wherever that may be. Maybe it's a healthy fear, because I lack boundaries. I'm in love with animals.

I need a job. I am tired of being poor from living off of the pittance I get from disability. Animals are my life. I was looking at job postings today through my school. I felt my heart thumping with excitement over the possibilities. The problem is that I haven't been training this whole time so there is a major gap in my resume. Who would hire a cancer girl? I know I can nail an interview no problem, it's getting the interview with the shitty resume I fax to them. It will go straight in the trash. Then there's the geographical issue. Lots of these places are far away and if they aren't very far away they are mildly distant. One hour drive. 45 minutes. There's always volunteering as SB zoo. Maybe I will just do that. The Eatm curse follows me there, there's that to deal with, but it's a nice AZA accredited zoo with plenty of money and good vets, so there's that.

I am trashed from treatment right now all I can do is nada. It's nice to dream about work. I hope to work again soon. It's food for my soul and money for my pocket. I'm feeling the depression that comes from detoxing. It's confusing to be sad and to cry when I have nothing to be sad about. I have to remind myself that it's the cancer dying that's making me feel bad. That is only a good thing not a bad thing. I went to bed at 6 last night and didn't get up until noon today. The power is out at the center so I got a day off, not that I need one. Maybe I need one. I don't know. I hope this works. I need some good news. I have been happy and upbeat but my cancer is still growing. It needs to be stopped. How can I be so happy when this is going on? I don't know. I guess I'm not that's why I'm complaining about it.

The brain is a funny glob of goop. I know I feel poorly because of treatment but my brain will start dragging in other shit to add to the mix. So I have to be depressed over not having a job too? I already have a job, albeit a shitty one that doesn't pay, but full time cancer treatment is a job. I get really over it on a regular basis, go out there, do some normal shit and then pay the piper for days afterwards. Let's just hope this current treatment is doing something because right now I am not feeling like Mary Poppins. Cheerio!

Accidental Garden

I tried to be a farmer. In my backyard. Joey built this lovely garden box for many yummy organic edible plants to grow providing my ego and mouth with successful, healthy vegetables, and vine fruits. Everything either died, got munched on by critters or attacked by aphids. It looked like a war zone out there. I suck at farming. I was really good at keeping plants alive in Summerland. My mother's hand-me-downs were happy as shit under my wing, but food, nah.

I planted too late, watered too much, stared too long, whispered too loudly. I killed them with kindness. I spoke to them quietly since I have neighbors who might already think I'm wacky for having 4 cats. 4 Cats who all know their individual names.

My garden that never was is a failed project, or so I thought.

I have been composting for a couple of years at least. In that compost goes anything veggie, and nothing else. Once the stuff turned into rich dirt, I'd spread it around. Oftentimes the dirt was sticky and smelly because it hadn't turned all the way, but mostly. I got super sunflowers out of those compost-lined pockets I grew them in. Huge. People stopping their cars to take pictures of my giant sunflowers, huge.

This year I have seen food plants springing up in random places in my front yard. I have 3 types of tomatoes growing, some squash, and one herb plant. Plus, sunflowers. My compost has seeds in it that survived. I couldn't plan a garden but I have an accidental one. How cool is that?

I see this as a metaphor for my life. Once you start taking steps to improve your life, it's pretty painful and disappointing. The steps are unsure, yet you know the direction is right. It's a fire walk. It's a gibbon, an arboreal ape, making every step look like a game of "don't touch the ground"(shoutout to Samantha trainers)

You try and fail but you don't ever give up. Sometimes you wonder if you are doing it right. Nobody else seems to be in your boat and you have no paddle, but you keep it up. There are invisible benefits that appear after you begin to try for something that feels impossible, or just very hard to attain. I've noticed that whenever I start the process of some new endeavor not knowing how I can possibly succeed, the windows start opening. But, I would not otherwise have had them open had I not started to lay the groundwork.

After chemo everything in my life changed. I was on fire to follow my heart. I had thrown out the idea of Eatm. No way could I do that. No way. But once I almost burned to death from the inside out I said fuck it, I'm going. I have no idea how I can pay for 2 whole years of rent and school all while not working a paid job, but I will do this. I applied, didn't get chosen the first year. The next year I reapplied and got in. Suddenly, out of the blue, some relatives announced they would be helping all of the kids pay back their school loans or pay for their education. That actually happened.

There were rules and I abided by all of them. I wrote up a proposal, listing my expenses and they provided the money. I had to keep a certain GPA and submit grades. To have that land in my lap - unreal. That is how life is though. You have to blindly follow your heart, and have trust. If you want something enough and do the work to get it, you will have unforeseen windows opening up. It's never not scary, uncertain or seemingly impossible. The people who succeed in life recognize these 3 roadblocks, but they pay the toll and pass on through. The more you do this the more easily it is to succeed because the feelings are always the same.

My accidental garden is latent fruition for my failed efforts. I might have sucked as a farmer, but I tried. That is the important thing. You have to try. Giving up before trying is so sad. I may not have food in my garden box but I have it in my front yard because I valued my food so much I saved it to give back to the earth. Then the earth gave it right back to me. The recipe is Effort+love. If you combine these two ingredients, you will be paid. It may take awhile but sometimes that is the lesson.


*I miss the days of Boogie. Black as midnight, so black he would be invisible at night if the moon weren't up yet, until he was just upon me.
He loved being outside at night.
He was the night.
Reflective, mysterious, poignant.
Ah, my Boogs, I miss you little dude.

Water

I'm in love. With life. With every waking day. With my ocean view. I'm in love with solar warmth, cooling rain, gentle spring breezes and every butterfly. I love the butterflies. They hit these otherwise invisible air-bumps, careening sort of out of control, wobbling on but getting somewhere, somehow. They are like tissue paper floating around in the sun.

I'm still sick, but I feel a little better than yesterday. Maybe the garlic I ate is going in there and, "POW!" "SMASH!" "BOOM!". I'm even entertaining the idea of going to the pool. I am in no shape to work out but maybe just getting into the water and being in the sun at the same time will have more benefit than my detoxifying Epsom salt baths? I need water.

In Nepal I was missing baths so badly that when I got to Dhampus and saw there was a bathtub in my room I almost jumped up and down clapping, That could be a memory, I probably did do that. It was dark though by that time so I didn't have enough hot water being that all heated water is solar. I filled it to about 6 inches high. It was a little more than lukewarm but I enjoyed lying back in that water with a huge smile on my face as if it were the best bath I'd ever had. I thought of the Warm Springs Apache taking baths in freezing cold streams while being hunted by White Eyes, how can one ever complain.

It's a sin to complain. Things change so rapidly that while you're busy complaining some other good thing is happening that you are missing. When your reason to complain is over you are then left feeling like a chump. I'm not saying I will never complain again, it's where so much funny material comes from, actually that's different. Real complaining is the whiny, why me, why now, why why why sort of drama so many wear like a tangle of chains and locks around their person. It's an excuse to not change.

Every person knows misery, fear, guilt, unhappiness. The difference between happy people and unhappy people is that happy people know things change and that they are in control of facilitating change while unhappy people blame. It's happening "to me". That is a fundamental difference. I am no luckier than I ever was at any other time but a certain way of looking at life has opened doors for me that were not there previously. I could sit in blame and fear all day long, but why do that. It's poison to the moment. I'm about living and being happy as much as I can be. There is no one to blame for anything that happens to you in life, not ever. Don't get caught up in that, you won't stand a chance.

I think I will put on a bikini for the first time in 2 months and, eek, go to the pool. I'm coughing like a pphhhool, but I gotta live. Get out there and do something that makes you feel uncomfortable. If you are comfortable in life you aren't doing it right. This is always your opportunity to feel alive and to grow. Blessings, you monkeys.

Pain is not funny, I can't think!

So many things go on in the world that are terrifying, unimaginable, or maybe that last part is wrong. I can imagine a lot of horrible things happening to me. Unspeakable things. I do. When I drive I sometimes imagine a collision. It's the one I can't avoid. The end. I suck in my breath every time. In fact any time I imagine something bad happening to me physically I suck in my breath and shake my head no. I've observed this over the years. I can't ever separate the experiences. Meaning, I always suck in my breath and shake my head no.

My kidneys hurt like hell right now. I wish shaking my head no would make that shit stop. Am I processing the Versed and other anesthesia still? My kidneys are pissed! I am so uncomfortable sitting, but I need to write for a bit. I never do anymore. I forget what seems to be everything. I can't remember things but I still argue that I remember things. Too much Candy Crush in the down minutes. Instead what I could be doing is working with my Momento memory. It's that bad sometimes, I feel like I'm going crazy because I can't remember.

Today was one of those days I haven't had to see for awhile. Where things seem bleak. I had a rough, rough Fall and early Winter, but once I put some distance between me and it I could forget how bad it was. I even felt great lately. I literally felt zero discomfort and had energy. Now, with my shitty tumor markers, low energy and mounting pain... there's also waiting to see if I'm travelling for the month of March.. and waiting on word about my medication that I need which is taking too long to get. I'm falling without a chute right now.

At one point I was lying on my back gravity-forcing coffee into my large intestine, it was cramping like hell, my kidneys screaming, bone biopsy site throbbed, I thought to myself: What the FUCK.

I deal with way too much shit in a regular day. Who has to do this level of work just to try to stay alive? Most people just complain about being hungry and getting laid, or their job. I'm in pain in 8 places right now, this is not right.

My tumor markers took a huge jump. Why do I subject myself to that news every 28 days? Because I, dummy, keep thinking they are going to go down. They only go up. Like gas prices in Mexico. I now have leg cramps travelling down my legs. What am I supposed to do, I have things to do! I have a big doctors appointment tomorrow in LA and need to get paperwork together, map out the route, get my head on. I am not prepared. What am I going to ask? I don't know. I can't think.

I wish I were a child and a parent were doing all this work, taking care of business. Living alone and bearing under the weight of all of this constantly is too too much sometimes. I do believe that sometimes you can't take any more. I am not even that weak right now compared to where I've been. I couldn't feed myself, sleep or stand, or see well. How bad do I have to get before I just can't, anymore?

I was high on life a few days ago, looking good, feeling better. Today I may as well fashion a noose and call it a life. Such is the cancer roller coaster. I can't think. That's the worst part besides the pain.

I don't spill this level of complaining on people normally because then I would have zero people, they don't like this part. It makes them feel bad. Walk in my shoes. Imagine knowing this and knowing also that that is so selfish but that is how most people are. They don't want to catch "it".

.......I just got off the phone with the sweetest person. I met him over Instagram, because we share a mutual love - life. Oh, and he has cancer too, he does holistic, we are a minority. He had the best attitude, and is exactly what I needed to pull myself out of that ^^^. See how life works? I don't flame myself for the down days because I have battled deep depression for years and years. I know it comes and goes. When things are good you appreciate the shit out of it. I take nothing for granted. When it's bad, you weather the storm because experience tells you those feelings will pass even though at the time it seems impossible you will be happy again.

If there's something I have it's experience. I am experienced at surviving. Not just living, fucking surviving. When I think back to the life I have come through I am amazed but I am also nodding my head like "That's right, bitch. I am a badass". Then I flip my hair in your face and saunter away. Real slow. Like the boss that I am.

Thank F...

Writing to remember is hard work. It's much more rewarding to sit down and pound away at the keyboard, willy nilly. I told myself I was going to bed at 10. I'm a big fat liar. The last two nights I got 6 hours of sleep each night. In my world this is 66.66% of the sleep I need in a night. It's not beauty sleep either it's just what I need to not melt down. You should see my ugly face.

At least I'm not fat, I've got that going for me. Anorexia has been a very successful weight loss regimen. You could fit my ass in my Ms. Bitch teacup. Shaq could palm my butt cheeks in one hand and still have room left over.  Cancer treatment perks. It took me a year to figure out how to replace the oversized photo of my forehead dominating the top of the blog. Tyra Banks, I love you, your forehead is bigger than mine.

Being a teeny little person like a bird with no feathers you have to pretend to be tough so nobody wants to fuck with you. The punk era of the 80's was kind of like being schooled by a bitter teacher. And being surrounded by intimidating kids taught me to act like one too, at least in appearance. Once you talked to me you'd figure out real quick that I was not like that at all.

I liked shows a lot though, and really, people watched out for you. In a good pit, the guys will protect you-- except from flying objects. I've been landed on, kicked in the head. I've gotten shoved into pits by accident. All kinds of shows can be dodgy. I practically had my ribs broken at Love and Rockets. I've never been so squished before. Punk shows were actually worse. This one was just packed. Daniel Ash *sigh... I couldn't breathe, but I had the best view. Front and center. Bitch spot.

I guess I'm not going to write about my stuff after all. It's too much. I'm getting dizzy, and feel nauseas. I am sleep deprived. I should just go to bed. I hope it's not my skull mets being naughty. I can't have that. I was going to write about that latest dx, but when it's time to retire, it's time! G'night

Bird Nerd, Gull Girl

Today while I was walking on the beach I had gotten almost to Pierpont when I stopped and stood looking at the ocean. I turned to my right to look back up the beach. I had been thinking heavy thoughts, end of life thoughts. I saw a very white gull, a large one, flying towards me, right at me. When it got to around, say, 10 feet away, it stopped and hovered above me, like birds do when they’re hunting. Or, in the case of a gull, eyeing somebody’s shiny chip bag, or paper-wrapped sub. It was odd. The bird looked like it flew right TO ME. It kept hovering there, making me look down to see if I had anything it could have mistaken for food, anything shiny, or interesting. Nope. Nothing. This went on for several seconds and at one point it veered so closely I shrank in surprise. I imagined how those rubbery water-bird feet would feel on my shoulders. I've been bitten by several gulls in the process of capturing injured ones on the beach, usually with nothing but my hands,so that didn't scare me, but I reacted anyway, it was that close. It was definitely there because of me. 

Finally it decided to land about 10 feet away, facing me. I took a step slowly towards it to see what that would do, it turned to it’s right, unsure, and stopped. So I slowly stepped back, it stepped forward to face me. We stood there looking at each other, waiting for someone to do something,then the oddest thing happened. It leaned it’s head down to the ground, dropped a small object onto the damp sand jumped up and was gone in the next second no longer interested in me. I was so taken aback for a couple of seconds I stood there processing what had happened. Did this bird just give me a gift?? I stepped towards it and a shiny light pinged off of it. I walked to where it was and to my surprise, as I bent closer to see it, I discovered it was a shiny, red, glass bead. The kind that’s decorative, maybe to put into a vase. It immediately reminded me of my birthstone, Garnet. I picked it up. Still in disbelief. What a weird thing to have just happened. 

I looked for the bird, it was long gone. I turned back down the beach, walked several paces, then for no reason I turned BACK around, walked about 3 steps and what did I find? Another red glass bead. I had not seen that other one when I was walking just then, I even looked around as it seems to have appeared out of nowhere, dropped out of the sky. 

I have no idea what it means, but a bird gave me a bead today, picked me to give it to. it was the strangest animal encounter I have had in a very long time. Maybe ever.

I'm back *crickets

There are a lot of things people say to you when they find out you are in the fight for your life. One of the them is that you must "be positive!" You must! Everything depends on it, if one is positive one cannot fail! Keep your chin up - I tell my cancer girls, because once you lose hope, you are fuuucked. I leave that last part out, but that's a foregone conclusion, they already know that. Cancer people are kind of given a crash course on silver linings, you have to find them. Anywhere possible. Like, "Oh my favorite spoon is clean!", or, "I didn't throw up after the last meal and I didn't lose another pound today!" 

As far as the advice-givers telling us how happy we need to be while scared out of our fucking minds that cancer is spreading to the brain today, or the liver, or the lungs ( those are my next options ) I wonder how many of those people live their advice while only facing nothing more but having to show up to work the next day? Imminent doom. Those happen to be my favorite words right now, I've used them enough lately. Imminent doom! How many people follow that advice not facing imminent doom, and you are telling ME to be positive. 

Be Positive is the catchphrase for all that befalls .. someone else. 

It's hard to not take it a little hard because, what do you think I've been doing this whole time, not being positive? How am I even still here if I hadn't mastered that yet? 

I've been at this for nearly 10 years, almost 5 of those being stage IV. I'm facing my imminent doom every second, minute, hour, day, week, month, year. Thankfully I can include the word year. C'mon now, don't you think a person facing a painful, dehumanizing death is allowed to complain now and again? 

I think the biggest mistakes healthy people make when talking to someone with cancer is to advise them when they are not asking for advice in the first place. Throw on top of that the advice is coming from someone who has never even had cancer. It's wise to resist the urge to counsel a person on a topic when you are the novice, not the person you are counselling. It can be taken as insensitive and really annoys most cancer patients, but they will never tell you to your face. If you look at it that way, it seems ridiculous anyone would ever try, naah, aaaall daay loong. There's that and naming every person they've ever known who has had cancer, who have died. Those two things got to go. BYE BYE.

Now, we can start to have a convo. 

What is the worst thing that usually happens to you in a day? Late for work, long line at the DMV, need to get laid, laundry piling up? To me, these are not real problems, these are normal life occurrences. They are temporary. You deal with one thing then move on. Maybe you deal with something for a week, or a couple of months and move on. There is no moving on from stage IV cancer, and we still get to do all of those things regular people get to do, except work, I miss work. I miss money. But more, I miss MY work. I know we are all going to die, blah blah blah, but I am otherwise healthy and I am not ready, I am not old, I am not lazy, I kick ass in life, I need to be here, I love life, I love everything about life, except people who sit in the fast lane going 65. 

When your job is, fighting for your life, you don't get a minute off. There is no break ever. I clock in the second I wake up, actually, I don't get a break at night either. My shit goes 24/7 around the clock. It's the mind, it has a way of erasing the horror so one continues to want to live. It makes me consider the pain of natural childbirth, not the epidural-childbirth experience, natural, full pain, from childbirth. The mind has a way of forgetting that intensity, otherwise mothers may want to stop at one. I won't know, cancer spared me the joy of having my own.

I go to bed with towels and changes of clothes. I drench my clothing and sheets every night from alternating hot and cold sweats. All night long I wake up drenched, take my clothes off, towel off, switch sides of the bed, put a new towel down, put new clothes on, repeat, repeat, repeat. By the morning my head is soaked, my neck feels like there's a rope around it from perma sweat and chills. I'm very cold, very wet, from sweating and freezing all night long. It is completely possible to be hot and freezing at the same time. I have a way of comparing everything to the hell of chemo past, and this comes really close to it, so it's got to go. I'm working on it, but these things take time when you're using holistic medicine.  

Being told to be positive by a healthy person can be very hurtful to a cancer patient. It sounds like criticism. Don't do that to us. We have to be positive, and are. You don't see most of what we go through. The thing about me is I don't candy-coat the truth. Society has it twisted, it teaches us that being brave is acting positive. Wrong. That is for you guys, it is an act. Real bravery is in being HONEST. I've taken a lot of shit for being honest, but I'm not going to stop, I'm not doing it for you. Rip off the bandaid already, you aren't the one dying.

Chemo heads smiling in pictures..that's fake, yet we all do it, smile for the camera, hide the pain. Have you ever done chemo? You don't want to smile, you want to just die. It's the worst pain you can ever imagine, and it goes on, and on, and on, and on, and on, and on, and after it ends, it never really ends. The pain, the damage, the debilitating exhaustion lives in you. It's worse than having mono for 10 years. That's the closest thing I can think to describe that one aspect as best I can, and I'm only referring to the exhaustion, not anything else, and there is a ton more. 

This disease leaves no aspect of your life un-fucked. You say things like- the exhaustion is only one small portion of this treatment, that, and not sleeping. For years. In a world where people bitch about slow internet, they can't relate. Forget having a family or working, or having a relationship where you make future plans together, or getting a puppy because you probably won't outlive it. This all sounds so terrible, and then you might wonder how in the HELL can a sane person continue on knowing they are utterly fucked? How? I'm positive, bitch!!!! The odds against me are stacked 99 to 1, and I think I actually have a chance! Dumb and Dumber. See, I'm positive. I just proved that shit. BOOM.  

There are so many horrible things that go with this disease that you have to broaden what's acceptable and minimize what you can, even when nothing's minor, or minimal. If you don't, you will become desperate. Cancer is not a disease to get if you are a weak person. You have to be ready to fight, and fight, and fight, never stopping even at the moment you are told that NOW you are officially fucked, so then you give it your last big-Ass effort anyway, because that is what you do. I could teach a class on how to survive, but instead I'll just keep doing it. 

When I see people saying things about their friend who has passed on, my stomach almost flips. She was so brave *gag, she was so positive *barf, I never heard her once complain *double stick my fist down my throat. Were you there, in her bathroom, as she pulled out handfuls of her own hair? How about when her shredded mouth bled from sores and throbbed from pain, and all in just the first two weeks of what was going to be 16 weeks of pure, filterless HELL. Was she smiling and being positive then? That is the truth nobody sees. Nobody saw me like that except my bf. Nobody. You will hide. When it's you, you will hide too. Nobody will see the truth, you can write about it like I'm doing right now, but nobody will see it. You can't let anyone because that is the only thing you have, your memories of who you were. You grip that shit with an iron fist and hide like a dying cat under the porch. Nobody will see me weak- you tell yourself. 

Cancer (victims - lol. My dad used to say that a lot and I'd correct him) patients "let their hair down" when no one's around, and cry in the shower. Healthy people and their judgments of how we are supposed to act are just more bullshit for us to process. Frankly, we have this huge thing to grapple with, ergo, the truth is more often hidden before it can be shared. Call it "self preservation" but we can't stand to console you. We should be the ones being consoled, but the truth is you can't usually handle it. We are the strong ones, it's backwards--- so please don't tell me to be positive. I have been for years, I deserve a credit, a lot of credit. 

What makes me stand out from 99.99% cancer patients I know is that I tell the truth, brutal as it can be, and I always have. I've alienated plenty of people over the years with my posts regarding Big Pharma, Komen, chemotherapy. Many of my fellow "cancer sisters" turned out to be judgmental and nasty to me. And guess what? Now people are following suit. I took a lot of flack for my words in the 9, almost 10, years. And now what was unpopular is being spewed all over facebook like gospel, as if these people were with me all along. All I ever wanted is to help people, and be helped. But most people are closed, therefore this path has been lonely. Safety in numbers right, as soon as my opinions became more widely accepted more people started mirroring my words. At least the tide is changing somewhat but it sure is hard being a pioneer, it's lonely and you take a lot of negativity being thrown at you. In the end you get no credit so it's a good thing I don't care about that, it being a purely egotistical issue.


I don't need to be anyone's hero. I have great days, and terrible days. I am not a people pleaser. When I was a kid I felt I needed to be. I learned very young that most people present a false face, are driven by fear and ego. I only wish to please my own soul, and those on similar paths. I can serve people better than way anyway, that's how it works. Life is really a solitary journey, so this is more than okay with me.  

I still have cancer, and I'm probably going to die from it. I don't care to be the one people speak about when they say, "She was so positive, and never complained." I know, and everyone, when I say everyone- I mean everyone with cancer knows this is complete bullshit. Nobody does that. If they were to I would feel pity for them as they died a lonely death following a very lonely, false, Disney movie, A Walk to Remember- life. Let's be real. This isn't a movie, it ain't a t-shirt.

I've had a harrowing time this last couple of weeks. honestly, you are lucky, or not, to be reading anything from me at this moment. I was seriously considering bowing out of this play. The hours suck and the pay is shite. But, something drew me back again. Though my body felt it was shutting down it's slowly regaining some semblance of it's former shape, albeit 15 pounds less. 

I feel like I'm walking around without emotional skin. What I did recently  broke something within me. I don't know if this is the beginning, or the end. What a silly thing to say, both are illusions. Wow, it's late, I am not going to edit this thing. Sawree, I hope it doesn't suck, but if it does, I don't give a damn, this was cathartic as hell. 

Boobs- they're not just for dinner anymore

Nope, no better.

Jesus, why isn't there a .. oh, of course there IS. There is a pill for dat. Problem is I don't believe in taking those types of pills. Coming from a person who once let a magical street hobo stick his finger into her mouth, one would think I might not be too particular. But, you would be wrong. I can be very particular. Or just unravelled and confused.

Depression is like a heavy wool blanket, and it's not the nice heavy either, it's oppressive-heavy. Who am I to complain, I'm not doing chemo. The stuff I'm doing is not without side effects to be fair. Are they the long-term damage to my heart kind of side effects, liverkidneybraintillyoudie-side effects? No. And THATS why I suffer through the endless thoughts of "Am I doing the right thing?" "Is it too late?' "Am I ultimately going to die from cancer anyway?"- beCAUSE the other way is a dead end, and I know it.

This way is the harder road in every sense other than the pain of chemo. That's a big comparison. The reason I compare the two so often is because if I were a river, chemo is the ocean that I never want to reach. The oncologist is leading me towards that as if I am going to wake up one day and want to burn every cell in my body with poison. No fucking way will I. I would die in my bed up to my eyeballs in cannabis oil before I would EVER succumb to that pressure, uh-uh.

I have a headache, it's either the crying, or better news-I took too much Evo? Hmph. That's weird. My current oil is really dilute, so I have no fucking idea how much to take. It's literally like this: I'll take a tablespoon, wait, take another one, wait, another, wait.
Too much THC will cause a headache. That's just dandy, since I'm dying to do a coffee enema, that might clear that right out of there.
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