Last minute biopsy 7.17.19

Last minute biopsy 7.17.19

I had an appointment with my primary doctor who I love. My driver, who is amazing, said she feels like I seem a bit sharper these days, which is impressive given how much is going on.

But I’ve got a better handle on the calories.

Though, my doctor asked: how many calories are you getting? I was so proud to say: 1000 calories, on average, some days more, some days less!

And she made a face and said: we really need to get you to more like 2000.

She’s right. I used to eat that or even more than that when I was running, working a lot on my feet, doing sports like boxing or a lot of biking.

I told her: some little old ladies live on 1000 calories and that’s basically my inner biochemistry.

She wants me to have more of a cushion, which is totally spot on. She’s absolutely correct. For example, when I had the port infection and was in the hospital for nearly a week, I lose weight. The trip in California, when things went haywire, I lost weight.

You can’t live at the edge - the place that our fucked up

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Trying to accept reality 7.16.19

Trying to accept reality 7.16.19

This photo of my dad and nephews was taken and posted on my Instagram on May 5. (Hmmm..interesting date for me.)

He was gone 8 weeks later.

That’s how “fine” he seemed up until late May when his lungs gave out and he spent a week in the hospital. I found out later that he had only a 3% chance of coming out of the hospital that time. Of course, he’d be in the 3%.

He was still working, walking with his buddies on Tuesday, spending time with the kids, running errands with my mom for most of May.

He did all that WHILE HAVING STAGE IV LUNG CANCER.

That’s how fucking strong the guy was.

So it’s a bit challenging for me when people don’t understand how a person can walk around doing so many things like I do, or he did, and still be gravely ill.

You can run errands and be dying

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I miss him 7.15.19

I miss him 7.15.19

I was doing all right yesterday. I rested, which I sorely needed, and got a lovely visit and little gift which was perfect. I have the bestest friends, truly. I lucked out in that department for sure. I met with Sarah and got some actual shit done. Wrote my letter to the state about my food benefits! Which I sent to my friend who knows this area better. She wrote back with a completely revised version, which I’m so glad to have. My letter was…well, hers was very diplomatic - she understands what the state agency people would want to hear.

I ran a couple of errands, did a little more visiting. I always feel better when I’m able to be productive. I HATE not being productive. It’s one of the most annoying aspects of my current life. I’m super tired today, but slept well at least. I may have to take a nap, I’m so tired and that’s saying a lot given how much I slept. This heat…makes me tired, my blood pressure drops low when it’s hot because I can’t stay hydrated like a regular person.

When your blood pressure is

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I think I'm killing Edith 7.14.19

I think I'm killing Edith 7.14.19

I want to be a gardener so bad! But I always get nervous when I can’t keep house plants alive!! I know it’s different when working on a garden, and I’m a LITTLE bit distracted these days. But still!

So I’m in a weird email conversation with the new trauma therapist. She isn’t cheap but the practitioner that referred me said she has “sliding scale” on her website. I’m like ok I can work with her on something. I have my people thank GOODNESS.

Basically the first appointment was me rattling off my whole story, and I didn’t get enough sense of HER. Which was a mistake, I realized.

Also, there were these kind of steeps wooden stairs outside - which make me nervous if you’ve been following me, you know I feel wobbly on some days. These stairs in the rain would make me very nervous.

I asked her at the end of the appointment about the sliding scale option. I’m not too with it these days, obviously, and somehow left the appointment without hearing a number. I did learn, however, that she does group therapy and

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Wake me up when it's over 7.13.19

Wake me up when it's over 7.13.19

So much running through mind these days. It jumps from one fear to the next. One memory of my dad to the next. Round and round, over and over, images, pictures, him in the hospital at the end, him in the kitchen this past winter.

I felt Death all winter. I know this will sound strange but I’m writing it anyway.

He and I both felt the grim reaper or whatever you want to call it. It hovered for months, a shadow in the background while we prepared our strange meals.

His tiny versions of what he used to it. He had no stomach so he could only eat small portions. I still can’t believe he lived as long as he did, as well as he did, for nearly seven years after losing his stomach. He lost most of his colon in 2014 while I was going through chemo.

It was awful. I was stuck in San Diego - you can’t fly on an airplane while going through chemo because the white blood count is too low to fend off illness.

When the wound became infected, I had this dream that he died. My mom and I were crying with my friends down in San Diego. I was hysterical when

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Company is good 7.12.19

Company is good 7.12.19

It’s been busy around here. Lots of visits, I had an appointment today which is usually on Tuesdays but my person moved it to today. I have a lovely college kid visiting me and had another high school kid come by to make sure my airbags in my car aren’t recalled! He said he’d take the car in for an oil change when it’s ready.

How wonderful are these children?

It’s interesting to me how so many people treat kids.

Somehow forgetting that they don’t stay kids for very long.

Of course, these ones are very special human beings!!!

I don’t know how I’m doing. That’s the bonus of being around people a lot. I get the allure of not wanting to be alone. I’m just so used to it by this point in my life that I forget how uncomfortable that feels for so many people. I feel bad for my mom. She said either right before he passed away or right after: I’ve never lived alone before I’ve never lived alone before.

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I heart my friends 7.11.19

I heart my friends 7.11.19

This is harder than I thought it would be.

Trying to find words while plunged in the depths of some deep emotions, so much change, trying to make sense of so many things that are so wrong, both in my world and the outer world.

But it’s good for me. I can tell it’s good for me to write here. It’s good for me to try and make sense of this here. Not only is it helpful later when I’m trying to piece together so much trauma happening at once, but it allows me the space to try to process it.

Thankfully, I’ve had friends who have offered a lot of wisdom and their own experience losing a parent. I guess it’s typical to not be able to believe it. It seems like a couple of years is how long many have taken to not pick up their phone to call the parent.

Of course, in the middle of all this, I’ve got to be vigilant about taking care of this body. I couldn’t cancel a couple of appointments without not getting new ones until September so I’ve had to carry on. I met with a registered dietitian that’s taken me months to get an appointment with (WHY oh WHY was that so hard to get?) She is working on calculating my current intake of macro and micronutrients (macro are carbs, fat and protein and micronutrients are vitamins, minerals and trace minerals).

This whole past six months, I’ve just been dumping into my body whatever I could - supplements, IV bags of nutrients, drinking juices like a mad woman.

But if I want to make it

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My dad had vanity plates 7.10.19

My dad had vanity plates 7.10.19

I’ve parked behind my dad’s car since high school. I drove his old Toyota Celica 1979? Something like that. That’s something I would ask him and he’d still remember. He’s really good with numbers. He could remember every single box they had in stock at his warehouse. Every number of every NBA player dating back to who knows how long.

Well, I don’t know how well his recall was the last couple of years. He could do complicated math problems in his head, no problem. My mom and sister are also really good with numbers. It’s my brothers and I that are into the words, reading, writing though math is fine too.

But it was always my dad that we’d turn to for calculating whatever we needed pre-smartphones. Lord, those phones have probably made us all a lot stupider than we all realize. There was a study of cab drivers in London where they did MRIs. I’ll find it because it’s so interesting. Hang on.

Study on London cabbies brains.

Looks like the hippocampus grows but at the expense of another part of the brain. That is in line with my theory about my brain. I love neurology.

I should explain why my dad has the boxes vanity plates. He opened up a box business around 1976, I was maybe five years old. He had no inventory

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My dad died 7.9.19

I think this was taken when he must have been turning around 24 or 25. My parents married very young, my mom was only 21 and my dad was 23. My brother was born a year later.

I think this was taken when he must have been turning around 24 or 25. My parents married very young, my mom was only 21 and my dad was 23. My brother was born a year later.

I’m forcing myself to write here again.

I gave myself 2 weeks off from writing. I told myself that early on - that number popped into my head for some reason.

I needed all this time.

It’s so layered, the grief. I live with him. We have the same genetic condition. We look so alike. See, still talking in present tense about him. Because he’s going to breeze through the door in a second. Tuesdays were our evening where it was just me and him. My mom babysat my sister’s kids on Tuesdays.

He’d go with his running group - though they’ve been walking more the past year or so since one or more people had an injury, or in my dad’s case Stage IV cancer.

That’s right. He walked every single Tuesday until before that awful week where his lungs basically stopped working. I started to give him a hard time about it.

Then I stopped. Those Tuesday evenings were so important to him. If they made it all go faster, and he was ok with that, then who am I to suggest he ease up.

It just all happened so fast.

I’m still having trouble wrapping my head around it.

This is hard. This is really hard to write in here about it, so raw still. But I need to. The house is empty. I have lovely people offering their company. Which I’m so incredibly grateful for. I spent the day with a sweet kid which was good because I’ve been in bed for days. Crying. Staring at the wall.

Getting out of the house and conversing with a teenager was good medicine.

I don’t have a job. Or my own place. Or any vacations scheduled. Nothing.

Just me and my grief this summer!

Thank goodness for the hugs. And the people cooking broth. And the people offering their company.

Solace. While I try to make sense of all of this.

My heart hurts. It physically hurts. I can think I’m doing ok, and then like anyone that’s lost a close loved one, the smallest thing can make me cry. The nicks in my windshield that we discussed getting fixed. His hanky - YES he still used old-school old-man hankies until the end, always thinking about the planet - that I stuffed in my purse the day of the funeral and realized was still in there today, his car still sitting in it’s spot.

Someone is bringing me Pho style beef broth right now. How lovely is that.

I should go. I can’t think. I’m so tired. I’m so tired of being tired. Tired and sad.

Just got phone call from awesome friend. Gotta go thank goodness for my peeps. Thank goodness….xoxo

Good chats are good therapy 6.25.19

These bug-a-boos make life a lot better.

These bug-a-boos make life a lot better.

I had a good day yesterday.

My dad did not.

The kids kept me company and shit got done. The recliner came upstairs from the dungeon (the room I nicknamed years ago because it creeps me out, always so cold in there) so he can sleep more comfortably. If he is laying down, he coughs too much.

He’s also on other medication than the opiates.

Medication I encouraged weeks ago. It helped me after my surgery. I don’t take it anymore because benzos are so addictive, but whatever makes him feel more comfortable. He’s now drinking the protein drinks I also drink. He’s not that with it which is terrifying.

The kids always boost my mood. They are such special little people. They make me so happy! The big kids are awesome, I love it, spending time with them, just chilling, talking about movies and random things.

But I love the hugs and she still sits on my lap, which is getting ridiculous but I can’t help it. I told her she has to sit in it even when she is an adult and she just laughs. The oldest one will pass me by soon in height. They grow up so fast! He is reading a ton, which I love. His mom is like: he reads like you! (I offered to pay him $1 per book he reads this summer and HE said: mmmm that will be too much money. So we agreed on $25. What a little sweetie pie).

I had a friend come over and tested my walking on the treadmill with company, someone I don’t know that well, which is different than bestie or the boys, who have done it with me.

I tried sitting outside beforehand, reading on my computer, and my allergies got so bad, I had to go back inside.

GOD I hate being trapped indoors so much. I could have taken something, I probably should. THIS I hold back on! I hate pills. I really only take stuff for thyroid and hormones on a daily basis, that’s it. Herbs for everything else. I TOTALLY get that it’s not for everyone. Take pills if you need them! Utilize what you can, to get through whatever.

But for me, I’m just not a pill person, never have, never will be, if I’m not by now. This organism, this SHELL I live in, is so fucking sensitive to pills. Always have been, always will be. Plus, I hate Big Pharma, and refuse to give them a penny unless absolutely necessary. I get most of my hormones from a hippie down in California who owns a compound pharmacy. Gosh, I have SO MUCH TO SHARE on how to manage all these conditions! My brain, oh my brain.

It’s better today. I had such an awesome chat with my friend, that plus the kids, really improved my mindset. The worst is when I’ve been trapped inside, not enough company, my mind whirling around itself. I also had a good chat on the phone with one of my drivers. I’m starting to assign tasks to them, because I’m concerned about how I can handle all these things. This one comes to all of my new primary doctor appointments. I asked her to remind me to send a list of things that I’ve been thinking about regarding my medical case.

It’s time for me to trust, and pass this information off to the doctor who has the bandwidth and medical expertise to think and manage and consult on all of these things. I. Just. Can’t. Do. It. Alone. Anymore.

I have to make peace with this. I have to accept who I am now. I have to be ok with myself and stop trying to juggle it all my own, and then look outside for who and what I am. I need to do the opposite. Have people help with the day-to-day, and be ok with myself no matter what.

While I was waiting for my friend, I was reading some self-help-y stuff. I’ve been reading it for years. Secretly, but now not so secretly, I’ve wanted to be one of those people that helps other people. I felt a little weird tagging the category “self-help” on my podcast when I launched it last summer, but I get a little thrill whenever I see it on the screen. I like being someone to offer that! But I’m glad I’m doing it in a way that’s less preachy, gd I hope, and more just sharing my own experience and talking to other people.

I’m so tired of the ads of people promising shit. There are a few that I still follow, because they’ve been through the fire themselves. Those are really the only ones I can tolerate now. Ones who have REALLY been there. It’s hard for me to listen to a thirty-something woman that comes from significant privilege who is all about becoming the influencer, and less about the journey itself.

No.

Though I’m not in the head space to think so strategically these days - hence the issues around executive function and parsing out tasks that involve using that part of my brain - I am well aware that I’m sharing the super low moments and the struggle.

Who wants to listen to someone who hasn’t really been down in the murky depths of pain? I don’t.

The kids certainly won’t. They are so jaded because they’ve grown up on fake photos, and fake this and fake that.

They want real.

I’ve always wanted the same thing.

SO I have to be the change.

My friend and I are super interested in expanding our theater skills, thinking about different things we could. We’re both tired of holding these dreams inside of us. I have this empty room now. I have the ability to buy lights - that’s all we really need at this point. I’d rather shoot on my iphone than a fancy camera. I can never figure out how to use them! They are like little computers. I know I SHOULD learn, and I do WANT to learn. It’s so hard for me to learn new technical skills at this point. Social media isn’t that hard. Figuring out my podcast stuff wasn’t easy, but once I learned the basic steps - with the help of a half dozen people! - it’s super easy now.

I figure I can learn some basic video editing. That’s easier to parse out to young people. I want to create a space for community. I’ve been dreaming this up for so long, stuck downstairs in that dark, dreary room, with the photos of the past littering the walls around me.

It’s hard to believe, I’m sitting with a new friend who is just as excited about this kind of adventure. We talked about friends who come through, and how women don’t always support each other. How we are trained to be jealous and competitive with each other. This has driven me nuts for YEARS.

I think about how I wrote that my guy friends know I’d be there for them, no matter what.

I realized later, it’s not just that I’m their sister.

I know how to be a good brother. They know I’d take a hit for them, and how many people can anyone say that about at this point in history? At this point in life?

I would too.

No question. I’d be in a foxhole and run out under fire to grab them. I’d stand in front of their children and take the hit. I’d do it all. I don’t know why I’m so weird this way. I do know that I’ve always just had it in me.

Years ago, one brother brought home a woman. She was a weird one. She doesn’t like women at ALL. Like overt about it.

Anyway, her, my brothers and me were sitting around the table - it was the old kitchen so it was over 20 years ago. She was quite a bit taller than me and has much longer limbs, I have like T-Rex limbs, it’s ridiculous how short they are. My bicep takes up my entire upper arm!

She said, for no apparent reason: I could take Julie in a fight.

I’ll never forget my brothers response, they both at the same time said: no you couldn’t.

She kept arguing: yeah I could! Totally c’mon!

One was eating and didn’t even look up, I remember that detail, he just muttered: nope.

Why she is even thinking this way, I have no idea. Who goes around thinking that about some random other woman? It’s so sad to me. I’ve always felt sad about this. I don’t get mad back, because that’s not the point. The point is to be compassionate, more compassionate than they can obviously be with themselves and others.

Sisterhood is so important to me. And so is brotherhood. Why is this such a strange thing? Why do humans hate on each other so much? Why do people WANT to hurt others? Push them down? Take away their healthcare? Take away their right to live in a new country?

Why do SO many humans do this to each other? This has been my ever burning question for life, but more so than ever.

I didn’t say anything during the conversation with that woman. We don’t live in a world where women physically fight each other. But I’ve existed in space where they do. I found that interesting too. How it’s acceptable in certain worlds, but never in others.

There’s a photo I screenshot awhile back from the new updated Dynasty. It’s a man in the middle and two women behind him. One has the hair of the other. They are the rich ladies but always fighting, in their rich ladies way.

Why do we promote this kind of thing? That photo says everything which is why I kept it. If I see it over and over on my desktop, then it goes into my long-term memory so I can extract it for something like this post. Otherwise, anything I see in my current life disappears from my brain altogether. That’s why I leave notes around the house so I see them every time I walk by - pick up at Walgreens! Don’t forget ginger for tea! It’s annoying, but I’ve gotten used to it.

Anyway, my friend and I are determined to support and promote women who want to take chances in improv, video, comedy, whatever. I remember reading a piece where someone interviewed a bunch of famous female comedians. Joan Rivers and a few others pointed out: the men got together in little packs, and hung out at the comedy clubs. They supported each other.

The woman went at it alone.

I watched this happen over and over again in the Food Movement. I think I wrote it already. They’d get a little press or a good gig, and forget the rest!

And then we wonder why HC didn’t win.

I guess more men than women voted for Stacey Abrams in Georgia. I watched a clip of a state Congresswoman in Nevada who ran in the early 1970s - her kids small, must be around my age - and she said the women were not supportive of her at all. She also had more men vote for her than women.

Her theory: they haven’t figured out what they want or who they are, so it upsets them when they see other women figure it out and go for their dreams.

Isn’t that strange? I’ve mentioned that I try so hard to see other perspectives, to move out of my own shoes, and try to stand in another’s as often as possible.

There are some things, I try and try and try, and I still can’t see.

I don’t get it. The reason I have the network I have is BECAUSE I didn’t “drop” people if things were going well. I may have been an idiot, and struggled with maintaining an intimate friendship with them, or felt like I couldn’t give to the friendship because I piled too much work on myself. But it wasn’t because of competitive feelings. It was mostly due to low self-worth and my own fuckedupness.

I see us all climbing ladders in this hierarchal culture, and some reach down and lift each other up. Others try to kick the other women below them off their own ladder. Most just don’t do anything. They keep on climbing, or fall back down like me.

What is the saying: be careful how you treat people on the way up, because you’ll see them on the way back down.

I don’t want to do this. And then I can’t wait to do this. It’s this push and pull, so much of the time. Like I’ve mentioned here, the strong part of me is getting stronger. I can’t let those insecurities hold me back. Now that I’m growing my IRL crew and finally finding community in Seattle, I feel like I can breathe. Ok, I didn’t marry, but I’ve got my own family of friends. That’s what I’ve always wanted.

I read about how millennials are forging a new concept of family. Not all of them want to live in a married dyad. The poly community is growing in that demographic, I read somewhere else. They see things differently.

I hate to admit this because the show is SO stupid, and full of so much toxic masculinity it’s absurd. Worse than the anti-feminist messages. But I watch Friends at night when I’m falling asleep. It used to be on at 11pm in New York every night, so there is something comforting about it. I’ve watched the series several times and it gets stupider and stupider to me. I think I like watching because it makes me realize how much my mind has shifted about gender roles, and their restrictiveness.

They do a LOT of toxic masculinity. But for me, at the time it came out, it was novel. Rachel not wanting to marry young but instead forging a career. Phoebe being on the fence about settling down, or living a “regular life.” (I’m still disappointed with that storyline but Paul Rudd, c’mon, even I’d marry the guy on the spot.)

The one thing I do love about it though is that the women are so supportive of each other. The fight and argue and give each other a hard time. But they are truly each other’s family.

Even back in the dark ages when the show wrapped - I remember the date May 4 (ok, or 6th) 2004 - because it’s the day I found out my sister had colon cancer. I was at my cousin’s apartment because I didn’t want to be alone when we got the news of her results. We got the call AS the airing of the last Friends episode was on the TV screen. People still sat around and watched a TV together “back then.” (It doesn’t feel like that long ago! How has it been so long!??)

They were all so sad to be leaving behind their “friend family” and even in the midst of my anxiety and fear, I remember thinking: why can’t they keep living the way they were? Why do we have to isolate like the way we do?

Humans have usually lived piled into houses with each other. Even the wealthy had servants and people coming and going.

This isolation is the root of a lot of problems in this country. Well, that will be solved as rents sky rocket and 2 billion more people walk the planet over the next 30 years.

I dream of making my new event space a community space. I don’t know if it will happen. I never know if something will work out or not. Noodles at the wall. The Cancerteacher blog went kaput, along with so many of my other ventures.

I used to get SO upset when something didn’t work out. But as I kept reading things like Lean Start Up Strategy, I understood how things work in the digital world. You just try and try and try, until something DOES work.

I was telling my friend last night that it’s really true what entrepreneurs say about failure being the best teacher. I don’t want to insult any entrepreneurs but you have to be kinda bananas to do this kind of thing over and over. To take risk after risk. Keep trying after so much failure.

Failure and me are very good friends. I’m very comfortable with failure. I know it inside and out. I live in my parent’s house without any major assets to my name. No real career. No family of my own. None of the “markers” of success in the Game of Life where people in my world are always keeping “score.” Numbers. Are so stupid. That’s why I don’t get involved in the followers business online, following and unfollowing, and all that. Ugh, what a time sucker. I get it! I get that people do it. Some people are trying to survive, and maybe their online work is their only option, like it is for me.

But I could host classes here too. THIS I know I can do. It’s what I’ve always done for a living. The digital world is unreliable. I need something else. But it also sounds super hard, and exhausting.

Of course, everything sounds exhausting to me these days. Going to a yoga class sounds exhausting. Opening myself up to people sounds exhausting. I share so much here! But I only just texted my new friend taking me to yoga tonight about my dad.

In person, I’m way less open about all of this. That’s why I need somewhere to go with all of it! I let it out here, and process it a bit, try to make sense of it. SO that I can feel a bit more “normal” in regular interactions. Or I can forget about all the hellish things happening while in improv class. It’s SO good for anxiety! Man, is it good. I'd like to know the neurological reason for this, and can’t wait to learn from a trauma therapist. Why does my anxiety and overactive mind turn OFF while I’m doing improv. You have to be SO present and paying such close attention to what people are saying and doing, it is literally impossible for my brain to be thinking about my medical case while I’m doing it.

There is almost nothing else that makes that part of my brain thinking about my medical case turn off. It’s always running on a track, even behind the conversation I’m having.

While I’m chatting with my friend, the entire time I’m thinking: I should get an IV bag. I should have set that up so it was right in front of me or already attached, note that for next visits. Should I get on the treadmill? Will she think that’s weird? I’m hungry, I wish I’d brought a yogurt downstairs, I don’t want to interrupt our awesome conversation.

But during improv that part of my brain is blessedly silent. It is dreamy.

Art.

I get now why those fucking asshole Republicans cut all the art programs.

Art opens the mind. Makes it harder to brainwash. I would love to learn how that works in the brain. I hear yelling upstairs right now. My heart starts pounding. He is not in good shape.

I don’t think there’s any coming back from this. MAYBE if we had a facility like I dream of, maybe he’d have a shot.

The stress. I keep thinking about how his mom lived until 88.

It’s the stress. This fucking administration. His business. Having me, an extra body to feed and house. All of it. It was too much.

Stress will kill you a lot faster than a shitty diet, I can safely say this with certainty after 20 plus years in the nutrition field.

2010. The year I fucked up my body. Other people would have just gotten super sick with a long flu or had some mental health issues.

I get multiple cancers.

Ugh.

I think they are ok. I will go check. I should stop writing anyway. I could write ad nauseam about the women thing, friends as family, all of it. I’ve been thinking about so much of this for years. I never thought I’d have a reason or opportunity to share any of it publicly. I never thought I could host my own radio show from my bed without the permission of anyone else.

I’m guessing if it was bad, I’d hear: JULIE JULIE JULIE COME UP. I told them to be careful about hollering about stupid shit. Like don’t be yelling that you can’t find the strawberries in a way that sounds like someone is dying, ok?

They are doing the best they can under extraordinary circumstances. We all are. It’s such a fucked up situation.

That’s where we ended it last night. I told my friend about how I read years ago that a fan asked Quentin Tarantino, what advice do you have for budding filmmakers?

He said: just do it. Don’t wait, just make stuff.

Of course, white man probably saying this to white man, before the invention of the iphone, I remember reading it at my JCC job which was 2003-2008, this is how I mark time in my memory.

Now I have a video camera in the palm of my hands.

I told my friend last night about the Quentin thing, and she’s like: yeah just do it.

I said: the impression I got from that comment was, stop asking for permission. Just fucking do it. If you want to make art, make it. If you want to make films, make it.

And that’s something I want to do for women: tell them they have permission to be their real selves. Men too! But they have other things that have been downloaded, other pressures.

I want to find ways to be loving toward women. I want to find ways to be loving toward men. Same goes for non-binary, anyone that walks this planet with a beating heart and a dream, they should feel like they can pursue it.

Why does this make me SO weird in our culture? I believe each person should be able to self-actualize and find their true potential - is that really SO strange?

But I knew the only way to give permission to others was to give permission to myself first.

I showed her some photos from that photo shoot from last fall. There is one where I am wearing my leopard coat (I fucking love that coat) and looking into the distance. I’ve wanted to make it my profile photo on Facebook for awhile.

But I didn’t FEEL like the woman in the photo yet. I was able to take the photo, but I didn’t FEEL like the person staring back at the camera.

I want to FEEL like that badass woman. I’ll always be an insecure artist on some level. I think that the woman from Russian Doll was right that a healthy dose of self-loathing is crucial for real self reflection and being able to curate your own content with a discerning eye.

We’ve all seen what happens when artists start to believe their shit don’t stink (I want to invoke Kanye but I feel so bad that he obviously struggles with so many mental health issues - like I said, when you live that close to the edge…Elizabeth Gilbert says in her book in Big Magic that you don’t have to necessarily suffer in order to create awesome art. Says the white woman without generational trauma, it’s different I’m seeing only recently, when the colonizers give that kind of advice - you’re acting like a victim says the person high up in the food chain - it’s not the same as when it comes from anyone marginalized, the white colonizers aren’t carrying around the weight of so much historical pain).

My friend was in awe of the photos. It felt fun to have her admire them. I feel so tired, and old lady, and fragile and scared, it was nice to have that image reflected back that appears so strong and confident.

When will I feel like I can BE that person in the photo? Am I close? Am I far?

Is what is happening to my dad how it was always supposed to be? I really didn’t see this coming at all. I figured he’d live to 90 years old. Maybe in another timeline

THe medics are coming

My brain is scaring me 6. 24.19

My brain is scaring me 6. 24.19

I’m getting nervous. I can’t tell if I’m having so much trouble with my brain due to nutrient deficiencies or from the stress of watching my dad go downhill so fast, a combination, or what.

I’ve ALWAYS had my brain, all these years, even when my body didn’t work so well, I had this brain of mine to navigate it. I’m SO glad I have my crew that’s helping with driving. I’m going to make an ask for people to help me with food, because I just don’t have the bandwidth.

I’m kind of freaking out about all the stuff I’ve been revealing in here. I’m kind of freaking out all the likes on Instagram, and being a “spokesperson” for Lynch Syndrome. I’m kind of freaking out that I can see my dad’s skeleton….

Yep. I could see all his vertebrae as he ate his dinner last night. Or tried to. It hurts to swallow now. I won’t even bother listing all the things he has going on. FUUUUUUCCKCKCKCKK. I think it may be time to shift gears. I just want him comfortable! I got him some chocolates from the pot store last night, he was open to it! He feels like such shit, because obviously, everything is breaking down.

That immunotherapy…fuck. I said to my mom: something happened when they gave him that drug.

And then it hit me: it ruined

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How is this all happening? 6.23.19

How is this all happening? 6.23.19

I still can’t believe this all happening. It’s been so fast.

He is so tired all of the time. My mom said he doesn’t have much appetite. That’s not a good thing. ESPECIALLY while on the drug, prednisone which usually increases the appetite.

My mind is swirling with words even though I wish I could sleep more. I can’t stop thinking thinking thinking. Too much to wrap my head around.

Yesterday, I couldn’t sit in this house. I made sure he was ok after the appointment. He handled the taxol like a champ. I will share the story of how I didn’t do well with the taxol in my medical stories series. I can feel those stories bubbling up. I was wondering if they would ever come! I can’t force the stories to come out. I’ve learned that the hard way.

The words have to find me. I can’t find them.

After visiting with a very sweet kid (how did I get so lucky when it comes to these kids?), I took off to Whole Foods in Ravenna to get the large protein drinks. It’s the only store I can find them. I text Bestie that I’m headed to her neck of the woods.

I get a few texts

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My mind is mush 6.22.19

My mind is mush 6.22.19

I’m laying here trying to sleep. I went to bed late. Again. I really try. I do. But I’m completely awake at midnight. I’ve always been a night owl, but now it’s worse than ever.

Meanwhile, mornings are tough on me. I’m typing this with only one eye because one still isn’t focused. Sometimes I get lost in a project or getting stuff and look up and see the clock says 1am. I’ve been embarrassed to admit this because it makes me feel like even more of a freak. But there’s relief in admitting all of this. At least here, for now. Maybe I’ll just lose my shit all together, mentally, and then I won’t be able to write anymore.

Or maybe I’ll go into the hospital one day and never come back out.

Either way, it makes me feel better to write things here, admit things here. I’ve said it! I think it. There’s a lot of power that comes from controlling my own narrative when there are SO many other things I can’t control.

My dad is supposed to start chemo today so it’s not surprising that I’m freaking out. He is going to be getting taxol! The one that I had that made my hair fall out and my nails nearly fell off. I only took one photo of my nails that I found on my computer while searching for egg recipes. One of the kids is preparing for his culinary course so I sent him

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I have no colon polyps 6.21.19

I have no colon polyps 6.21.19

Well, it looks like I dodged a bullet.

I had no colon polyps which is amazing news. The relief…I don’t know how to find words to convey the relief. I really don’t think I could have handled bad news.

I got to enjoy this information for about…mmm 2 hours? Not even. Before finding out that my dad, who was at HIS appointment that day, has to start chemo right away.

The cancer is still in there. And apparently, it’s not good.

His doctor straight up said my dad doesn’t fit the criteria to DO chemo, because he is so weak.

I’m more concerned about his mental state right now.

I just hung up with my acupuncturist - the man I’ve been going to for over 25 years. My neck got tweaked during my procedure yesterday. The last thing I said was: can you move the table down - they had me at this propped up angle. She put it down and I was just about to say: a little more. But zonk, I was out.

I usually don’t have neck stuff, and as I mentioned I’m much more of a baby when it’s something I’m not used to. Stomach stuff? I’m like a NAVY seal. A headache? I’m like OMG I HAVE A HEADACHE.

My acupuncturist is such an angel, he is coming by the house!

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Today is the colonoscopy yikes 6.20.19

Today is the colonoscopy yikes 6.20.19

I want to crawl out of my body. That’s the only way I can describe how I feel right now. I want to crawl out and have someone else do the rest of the day, like how those bratty families had someone else have their kids SATs (one day, we need to discuss what an awful head fuck that is for all those kids, how’s that for feeling competent and confident as they enter life? Even my own parents don’t have FAITH in me. Without even discussing classism).

I digress. As usual.

Lsat night actually went pretty well. I have my prep down pat OF COURSE. I’ve had probably 20 colonoscopies at this point in my life. My doctor’s office didn’t even bother me sending me instructions on how to do the prep or give their recommendation on what to do.

I’m too cheap to use the ones they offer. One of them is nearly $100!

Nope. I buy the bottle of Miralax for $13 and keep my little laxative pills year to year (I mean, do those REALLY expire?) and some ginger ale. Good to go.

I drank nearly the entire bottle of Miralax by 7:30. Usually they have you start the whole thing around 5pm. In my old life, I’d start it earlier so I could get to bed earlier. I’d also barely eat the day before. A lot of people make the mistake of eating a lot the day before which just makes life more difficult on prep day.

For anyone new to the world of colonoscopies, they aren’t that bad! You drink a bunch of stuff, clean out your system, and head on in. Once the prep is done, the whole thing is super simple.

But I woke up and nervous that I didn’t clean out well enough so I’m now drinking that glass in the photo above. I don’t have much

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I'm scared for my colonoscopy 6.19.19

I'm scared for my colonoscopy 6.19.19

Let’s start with the good news. I got my $15 food benefits reinstated! Wahoo! Now I just need to finish collecting a million receipts to get back up to $200. I guess the fact that I had a good career before and now get the highest tier disability benefits from the federal government means I can live on the check from them, and only need $15 for food from the state.

When she asked if I was currently employed, tears came to my eyes as I replied: no, not at this time.

Her next question: are you currently disabled?

Yes, I said, the tears now streaming down my face.

If they can beat me down, tough and feisty and determined Julie Negrin, then who the hell can survive this system?

It’s all wrong, on so many levels.

I’m still reeling from the realization that sharing that I’m struggling to continue fighting the fight drives so many people away.

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Should I attempt testing fish? 6.18.19

Should I attempt testing fish? 6.18.19

If I’m going to share myself here, and that seems to be the continuing trajectory, then I figure I might as well start sharing some old photos. I have this dream of writing a bunch more life stories in another section of my website and utilize all these photos I’ve curated over the last few years. But my bandwidth….

My bandwidth is so so small now. I can barely get the “must do” phone calls done, let alone call new practitioners. I barely get my powdered vitamins and supplements inside me, let alone experiment with vegan ice creams that I won’t gag on. I barely keep track of my doctor appointments, let alone do research to expand my search for a GI expert outside of Seattle.

My dad is stuck at home all of the time. My mom is stuck with them.

I’m stuck here.

I’m trying so fucking hard. I’m working so hard on figuring a way out of this mess. But for every few feet I swim toward HOPEFULLY some land, I then get tossed backward by a errant wave or an insensitive person.

If someone isn’t doing something to lift a little weight off my back, I can’t deal with them. If they want to ask me for something right now

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I escaped the house 6.17.19

I escaped the house 6.17.19

As usual, I have a zillion words tumbling through my mind but when I open my computer, they scatter and I have to grab them quick before they disappear.

Yesterday was a good day, overall. My dad still seems to be stable. He’s just so weak and tired, it’s hard to see him like that. It’s still taking awhile for people to understand that he can’t easily pop up from the couch and do a task. It’s a hassle getting around with the oxygen and walker. Whenever I’m in the kitchen, I try to check in to see if he needs anything.

I know how annoying it is to have to drag tubing around.

There are so many videos of my life showing the little things that are maddening about being connected to medical supplies - and I only need to do it for a few hours per day! I often end up carrying around my IV bag in my left hand, if it’s not in my little backpack - that took me months to find, it’s not easy to find a contraption to hold several pounds right next to the body - I feel so bad that he has to go through this.

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Happy Father's Day 6.16.19

Happy Father's Day 6.16.19

I keep thinking that writing in here daily will end up feeling like a burden. I admit, I’m very tired today and didn’t initially feel like it.

But I decided to eat some broth and eggs before meeting a friend and typing here slows down my eating.

I have to eat a bowl of broth and a few lightly cooked eggs very, very slowly otherwise, it feels like there’s a traffic jam inside me.

I’m getting really tired of my diet. I forced myself to eat some vanilla coconut bliss and blueberry vegan ice cream. I’m trying not to think of it as pleasure food. I treat it like my green juices. Just get it down. I’ve got to get those calories in or my frame will change again in a matter of months.

I refuse to become bony. Plus, it’s just dangerous for me to keep losing weight.

I kept trying to tell my dad before the horrible week in the hospital when he couldn’t breathe. I said: for us, skinny is dangerous. Sigh.

He’s doing all right. The family came over for Father’s Day. My siblings and in-laws have been amazing about helping, they cooked everything and cleaned the entire kitchen.

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I had a good day! 6.15.19

I had a good day! 6.15.19

I’m doing better overall, mentally and emotionally. I’m sure it has a lot to do with the fact that my dad seems to be stable. That’s my new word “stable.” People keep asking if I’m “better” or if he’s “better.”

I’m now clarifying, that to say “better” implies there’s overall improvement with the health. But really, it’s more about: are we having a good day? A good week? Are things stable? Is my pain at the baseline or out of control?

His color is so much better. So much better. Fuck. Who knows how long this stability will last, but I’ll take whatever we can, for however long it lasts.

It’s a lot of work making sure everything is stable, including the mind. I had no idea. I feel very humbled by my experiences lately. They make me more understanding and compassionate about mental health struggles. OMG it sucks to be going through it. I don’t even know I’m still going through it! I have an appointment scheduled with the trauma therapist! I’m concerned I’ll get weird news after the colonoscopy next week - I need to have things in place just in case….My feeling is that it’ll be fine. There isn’t much opportunity for food or starch, which I don’t eat, to sit in there and compromise the tissue.

But fuck. I have so much stress which doesn’t help. I do hope that the Vitamin C in the IV bags helps stave off the cancer. Who knows. Only time will tell.

I went to a Poly Meet-Up today! I know I know, burying the lede. I wasn’t sure I could manage it, on many levels. However, I slept a decent amount the last couple of days and I really wanted to go! It was the middle of the day, small and just women. Just a meet and greet - we were all looking for cool people to hang with which was lovely.

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