My brain is mush 7.18.19

I had to have a young person give me a play by play on how to charge a stylus for my new ipad so I can use it to draw. It took a few different explanations because my brain is so mushy.

I had to have a young person give me a play by play on how to charge a stylus for my new ipad so I can use it to draw. It took a few different explanations because my brain is so mushy.

It’s been pretty amazing having people drop off broth - I not only get physical nourishment but emotional nourishment too. And they’re often on their way somewhere so I get this perfect little visit.

Yesterday was a busy day! I wrote about the medical stuff but later I realized I forgot to mention that I had a visitor who made me Rebecca Katz’s Magic Mineral Broth was AMAZING. I happen to know Rebecca and must remember to tell her that I got a homemade delivery of her recipe yesterday! It’s an awesome broth to make anyone that’s dealing with cancer or any illness.

Then my driver picked me up, and made sure I had my leg biopsied - always a good thing to encourage someone to do.

Sarah came over to help me with paperwork which always feels endless. Then the woman who helped me BEFORE Sarah brought over flowers and visited me while I did a light walk on the treadmill. I wasn’t supposed to walk after the biopsy but I was so hungry yesterday, I couldn’t help but eat eggs. I did all right - not much stomach pain last night, though I know I’ll need to be careful later today. The doctor said my little wound may burn - I think she said three stitches? But it didn’t bother me at all.

I love having visitors!! It was so lovely because my last one showed up as Sarah was leaving and we walked right into my newly painted living room, and I was able to visit with her like a regular person (well, until I ran around getting my protein smoothie - I’m sipping that sucker SLOWLY these days - and walked on the treadmill).

This is HUGE for my mental health. HUGE HUGE HUUUUUUUGGGGEE.

So much of my struggle is feeling isolated. And as I mentioned here, my default is to isolate. But thanks to my incredible network, it’s not really working!!!

I’ve instructed people to ping me, to make sure they follow up about hanging with me, because I’ll often just feel so unmotivated and then I’ll spiral down a rabbit hole.

I’m trying to figure out how I can get out of town for a couple of nights next month. I miss being able to do that easily! I think I may try to get back to Oregon. I know it’s a doable visit.

I don’t know. Every day is such a whirlwind, I didn’t even mention that I DID go to that meditation class on Tuesday evening! I was the only student so I ended up getting a one-on-one lesson and had a really great chat with the teacher. She mentioned that a larger class happens on Thursday evenings in Seattle. She said it was a really lovely community. Community! It’s been such a struggle to find it here in this ever-changing town.

But it’s slowly happening. I can see what happened with me getting SO involved on social media my first couple of years. Which makes sense, because I wasn’t feeling great so much of the time, and I’m glad I did the work I did to help the country.

I do worry about what it did to my health. And the impact that had on me being able to help my Dad….

Sigh.

I can’t go back and un-do what I’ve done. Tempting to go down THAT rabbit hole but I’m not sure that I’d make any different decisions even given the chance.

I just wish people know how many people are sacrificing their health, their mental health, maybe even their lives, in order to fight injustice.

Maybe they do. Maybe they don’t.

That’s that codependency. I can’t control any of that. I can only focus on fixing ME. I can’t fix the world. All I can do is share my experience, and hope it helps in some way. Especially right now, all I can do is figure out how to add calories and nutrients.

I came across this article about how this woman’s daughter was on a restrictive diet and all the crap the family had to endure during that time. Thankfully, the kid was able to get better.

Many, many families, however, are stuck feeding a child or more than one child, a restrictive diet for years - or even for a lifetime. I do what I can to enlighten people about these types of experiences, but it ain’t easy! That is for sure.

I keep waiting for my dad to come home.

It just feels so wrong.

I try not to think of him in the coffin, underground.

For the most part, I’m successful, but every once in awhile, I worry about him like he is still alive. Is he ok? Is he getting enough to eat?

I keep waiting for the whirring of the oxygen machine to start humming again.

The grief changes, it morphs, from one thing to the next. I’m not sobbing anymore, now it’s just tears running down my cheeks as I write this.

We didn’t have the easiest relationship. If I’m going to be as honest narrator as I want, then I have to disclose that. But we had a lot more than I could see when he was live - strange how that happens. I think we were just so alike. We both got impatient with each other - about different things.

I see him so differently now. I see all the little quirks as so endearing, and all the alignment we had on so many things.

I wish I said more while he was sitting on the couch. It was a hard call to make. I didn’t know if he’d mind if I treated him like he was dying - or if that would have upset him. I should have tried and let him make that decision. I keep wanting that of other people so I have to be that way first.

But what was there to say at that point? I’d already told him I loved him. He knew I’d do whatever I could for him.

Maybe we could have had an honest conversation though. If I’d been brave enough to try.

That’s the hardest part.

That there is no other opportunity. There is no last hug. There is no more opportunity to say what you want to say.

It’s all so final.

I posted my podcast that I recorded last week. I’m too nervous to listen to it.

I do that - I share something and then I can’t look. So hard for me sometimes. Other times, it immediately feels like such a RELIEF to unload something.

I should go warm up some broth. I love my cousin’s version. She insists it’s just throwing it all in an Insta-pot but there is something about it. I love all these broths! Really, all of them are wonderful in their own way. Some are deeply rich, for when I’m starving. Others remind me of family meals. Others make excellent sipping broth - I’ll have a third jar sometimes because I don’t feel so anxious I won’t have enough.

The look on my doctor’s face keeps popping up in my head after I told her excitedly that I think I got my calories to 1000.

If anyone notices, I can’t help but remember the looks on faces - maybe we all do that? They get stored in this brain of mine.

She is really worried.

I didn’t end up eating enough yesterday because it was so busy. That’s why the average ends up so low for my daily intake. It’s very likely I get up to 1400/1500 calories on a few days, but then there are days, I’m running around or laying in bed, and those days are close to 600/700.

Some days, I just don’t WANT fucking pudding or coconut ganache.

I’ve got to work on my food wish list. We finally finished that state letter! Just need to print it and send it off. I think I’ll call and get a specific name or department to send to. I’ll ask my friend who is helping.

I worry I’m not making great decisions.

When I used to teach cooking, I’d have a really good “sense” of when to check something on the stove or in the oven. I never used timers which drove some assistants nuts.

I’d teach an entire class of 10 rambunctious kids without using a timer for any of it.

At the beginning of the school year, I noticed I needed to set timers because my “sense” of when to check the pizza - always the first recipe of the school year, the kids needed to know they liked cooking class! -because my “sense” was out of practice. I remember the year I over-cooked the pizzas. I was so upset.

I don’t have that sense anymore for cooking. It must be linked to my memory issues. I just found what it’s called.

It’s called “time perception” and mine is FUCKED since chemo. I remember noticing that I had trouble noting the passage of time before my surgery - so it must be connected to aging as well. Aging really is cellular decline which is why there are so many things we could do to support cellular function and slow down aging. People try to do so much on the outside, when really, you’ve got to focus on the biochemistry underneath (I am very reluctant to get into the anti-aging world because…ugh, I just don’t want to but if I have to in order to survive and it helps people be healthier on the inside, then so be it).

It’s in large part why I’ve always looked young - that and it runs in the family! Because I did SO many things to support cellular function, those cells were able to function at optimal levels.

Before surgery, I’d forget how long it’d been since I saw a friend or simple things like that.

Now? I struggle to mark the passage of time on so many levels.

I can’t gauge things as well. This is in large part why I don’t like to be late anymore. I used to be able to fly by the seat of my pants because I could gauge how long it would take for me to get somewhere and then assess whether I had time to run to the bathroom or grab a drink.

Now, I struggle to grasp how long things will take - both because traffic sucks and I never know what I’ll encounter, but also because my brain is making decisions that may not close to accurate.

I keep asking people for advice on things I’d never normally ask advice for.

It must all be connected.

Though, I’m heartened that my driver/friend said I seemed sharper. In the article I posted above, the author mentioned how not having enough fat will impair cognitive function.

I’m now wondering if increasing my omega 3, 6 and 9 over the last month have improved cognitive function. I’m also being more diligent about taking the B12 in my IV bags.

It’s so hard to do all of this managing of my case with impaired cognition. Is this a good decision? Is that a good decision?

I remember thinking about that years ago: so much of doing “well” in life is being able to make smart decisions.

There’s the punk rock side that’s stronger than it’s ever been pushing it’s way out.

There’s the impaired cognitive function.

There’s the I don’t know how long I’ll be alive so fuck it angle.

There’s the hunger and fatigue.

All of it adding up.

I was asking something random of my friend last night that came to visit. What to do about something I normally wouldn’t ask advice for. And she was like: I don’t know!

I’ve been such a bossy pants all these years and now I feel so…confused and overwhelmed.

That executive function of mine was SO strong all these years. And now…I just don’t know. It makes me much more empathetic with people who have always struggled with decision making.

I’ve always been so impulsive about some things - and then overthink so many others.

For example, I’ll look at furniture or digital devices for YEARS and still not buy anything.

Other times, I’ll jump into a business project without thinking twice.

I need to be more deliberate now. I have to really think about: is this going to hurt my body? Is this going to hurt my mental health?

This is why it’s so imperative that I have people I trust around me to help me think things through. Or, for example, remind me that I can’t drive to Vancouver after Astoria and then drive the whole home to Seattle in the same day. I literally had to have friends tell me that!

My driver is here. I’m not looking forward to another long doctor appointment. This was at the office where the guy made comments about orientation. Eyeroll. Can we move to the 22nd century already please? Nobody will even use labels then. I hate labels. I’m not trying to hide anything, I just don’t like labels. Not as exciting as anyone probably thinks anyway.

Pants on. Bra too. Fuck I’m tired. I will definitely be sleeping all day tomorrow, that is for sure. At least I fun plans this weekend. I’m meeting with a new tattoo artist on Saturday!

YESSSSSS.

Jules