I'm doing dangerous things (not on purpose) 5.27.19

The bag that’s lighter in the back is the one that I contaminated. I threw it away.

The bag that’s lighter in the back is the one that I contaminated. I threw it away.

I’m under a little stress over here.

Just a teeny weeny bit.

I don’t know how to describe it so I’ll share a story instead.

Yesterday I had a IV mishap, after coming home from the hospital and a brief respite with M where we tried to find me a restaurant that would give me JUST broth. The first place, they were total dicks about it. I try to be very patient and make it clear that I’m not asking because I’m on some trendy diet. I try to be respectful of the wait staff and the chefs. I very carefully say: I actually lost organs to cancer so I can’t risk getting food stuck in there and need just plain broth.

No go. The (young male) server then added insult to injury and said: my friend had cancer and can still eat regular food.

I’m sure you can imagine how I felt after hearing THAT. I said a little bit testier: I’m sorry to hear about your friend but situation is completely different. I had 3 at once and lost several organs and live on mostly liquids.

You’ll think I’m making this up but Megan will confirm his response: why are you comparing yourself to my friend? You shouldn’t do that.

Well, I let a little New Yorker come out then. I was like: DUDE YOU ARE THE ONE WHO BROUGHT UP YOUR FRIEND AND COMPARED HIM TO ME.

Fortunately, Megan is way more level headed, and knows how to remind me that it’s not worth the energy without making me feel dismissed or patronized. She got me out of the restaurant before I really let it fly.

We ended up finding fantastic broth at another place that had stellar customer service. Will I go onto Yelp? No. Mostly because I just don’t have the bandwidth. (Who has time to complain all over the Internet? All that energy, plus the energy that goes into grooming and beauty plus the budgets for all the professional sports and movie studios, we could build a second planet Earth. So. Much. Wasted. Energy and Money.)

The intense denial of people who have never experienced any major hardship…it’s very challenging to deal with. Yeah! Let’s treat my dad’s hospital room like a fucking party room, that will help him survive. Let’s pretend we are medical experts! Let’s pretend like Julie is still able bodied and a complete idiot! Yeah!

I don’t know how I haven’t completely lost my shit. Ok, I let some out in my car when I’m driving alone. But that’s still relatively controlled.

The only good thing coming from this is that I’m learning how to control my reactions under significant duress and hunger. Did I forget to mention that I didn’t eat any eggs on Saturday and could not before I visited my dad because I can’t monopolize his bathroom, obviously. I could have eaten a couple but it’s so complicated, it’s easier for me to do it when I’m in for the day/night.

When I finally get home, exhausted and starving, I realize I still haven’t given myself any B12. I’ve been holding off because one MD said my numbers were too high. I KNEW that the serum labs were not reliable, but still waited to give myself more until I checked with my ND. He said based on my Spectracell - which evaluates cellular levels, not what’s in the blood, so it’s more accurate - I definitely need B12.

Guess what happens with low B12? Mental health issues! In fact, there’s a recent study showing that dementia found in older patients can often be attributed to B12 deficiency and be reversed!

But yeah, nutrition isn’t important.

I told the docs that we’ve got to get him on IV nutrition. I also insisted that they call in orders for physical therapy. Basically, they’ll have to give us every gd resource they can.

We already know what they’re thinking behind their nods.

He was so strong. And they fucked it all up.

I said something about how there was a major fuck up to the doctor friend (of the family) that came by and he just froze. I laughed at his stoic, poker face and even commented on it.

I forget how I appear now. With the mohawk, tattoos. In my workout clothes, all muscle now. My breasts small enough that you may not see them right away (yeah, they’ve shrunk THAT much - and no I don’t miss the other ones, what a royal pain those were, just the ass), so at a glance, they’re not sure if I’m man or woman.

Good. If I’d known how much more respect I’d get from men, I would have done this a long time ago. It’s funny, when I finally made the decision to do the mohawk exactly a year ago, I was so nervous! I figured I wouldn’t date dudes for awhile and was totally fine with it. But those millennial men…well, that has been a surprise, that’s for sure. I find it so interesting how much guys, especially the younger ones, dig it.

Whatever. I can’t care about that shit right now.

There is a father to keep alive despite the medical system’s every effort to kill him (thanks fucking Mitch McConnell). And myself too. When I feel a little bit better, I start to blow off my medical case. Who wants to work on that 24/7?? But I really need to before something bad happens again.

So back to my story! I’d already given myself another bag of amino acids - I am blessedly receiving three liters per week of amino acids instead of one. So I’m not only getting more protein but they help me go to the bathroom for reasons none of us know, don’t really care - but promised myself yesterday I’d go through the hassle of making a B12 bag.

I can’t risk letting the B12 get any lower than it is - I think I stopped it a good 2 months ago, that’s how slow everything moves in the medical world. But I really wanted to go for a walk outside and need an IV bag to do that on these warmer evenings. I always feel better after walking outside and I was pretty pissed about a lot of things. I needed to WALK it off.

All I wanted to do was go for a walk before the sun went down! Something I’m sure I took for granted when I was able bodied. It’s past 8pm at this point, I’d already stayed out for as long as I could. But the invisible tether pulled me home. Plus, if I went for a walk outside instead of the treadmill, I could go visit the kids which is a fun goal.

So I’m running around, trying to find the right needle for the B12 and of course, can’t remember which one I’m supposed to use! I search through my pile of medical supplies which is super disorganized and find these teeny needles and that’s it.

I still get very anxious about doing this sort of thing. It’s amazing how much they count on medical fragile patients to do things that medical staff are trained on for years.

I made two mistakes. One didn’t matter. One did.

One was, the syringe was so small, I didn’t realize I only sucked in .1ml instead of 1ml which is my dose. You can see how pale the second bag is - it’s barely pink.

The second mistake was not cleaning the top of the B12 vial with alcohol. I decided to toss the first IV bag - I always have a little extra so I can do that. Though, I need to remember to ask my nurse if I can even plunge a new needle into a bag that’s already been punctured. So many little things like that, I don’t know.

And you never know when the nurses are going to say: ahh, that’s fine, no biggie. Other times, they’re like: NO, never, EVER do that.

I don’t want to bother calling in the nurse hotline so I find a second teeny tiny needle - no idea why I even have them and where the rest are - I clean the B12 vial and the spot where I puncture on the IV bag. You can see the alcohol wipe with the pink on it - that’s me cleaning off the vial. I’m a little worried because I already sent a needle into that vial that wasn’t cleaned properly which means I could have sent bacteria into the vial.

But I’m more cheap, than I am careful and I refuse to toss the rest of that B12 vial that costs around $25. I guess I should have.

I’m counting on my weak immune system to do it’s job.

Oh, my dad’s immune system. I can’t believe what that immunotherapy drug did to him.

It destroyed his lungs and immune system.

I started reading - I’m so pissed I was such a mess when this all came up two months ago and didn’t do more research because those fucking doctors (AT THE SECOND FACILITY, this isn’t even at the place that let the cancer fester after his surgery!) never told us the risks of that drug.

When the immunotherapy works, it’s fucking AMAZING.

But that’s only for a small portion of the recipients.

Some have no reaction.

It kills the rest.

I think most people his age would have died already. He has that strong fucking heart, man. And besides his GI and lungs - yes, two major organ systems, I realize that! - he is incredibly strong.

People wonder why I do what I do.

This is why. Whatever I can make strong, I make strong. So that if one section of my goes down, there is as much strength as possible in the rest of my body to compensate.

People are coming by in droves to see my dad, which is so lovely. I just wish there was more focus on his rest and letting him use that bandwidth to do something to strengthen himself.

But maybe the mental health piece is more important right now. It’s a hard call.

For the most part, besides interrogating the doctors, I let him run the show.

I’ve spent so many years keeping my folks alive. I don’t need major props or anything! It’d just be nice if I wasn’t treated like the bad guy for trying to do the right thing.

That’s a sentiment I feel in so many ways in my life.

Nobody tells you that. That speaking out, that doing the right thing, that going against the grain is not well received by the people who live by a certain set of rules.

I’m done with trying to pretend I give a FUCK about people who think money, status, and all that bullshit makes them superior. They’d never want to consider themselves in this light. That they think they’re better than less affluent people. But when you’re in the position I’m in, you can smell it.

Yeah, making a lot of money makes you smarter than the poor people, keep on thinking that. We’ve got something they don’t have:

Survival skills….

So I gave myself the bag and man, I walked the fastest I’ve ever walked that route! It usually takes 45 minutes and I did it in 35 minutes. The frustration fueled it!

How do I do this when I’m so fucking tired? I have no idea. It’s either that or I don’t get eggs so I get it done. At one point, there was a car that kept driving back and forth on the way back. I know it’s supposedly so safe around here, but I’ve lived in the city for too long.

For the first time in a long time, I booked down the street.

I’ve always been a fast runner. But after the melanoma when I put on a bunch of weight, I kept running and running, and always felt sluggish. It’s been a LONG time since I ran like I did last night. I miss it so much! I can’t do it now because it uses up too much energy and makes me hungrier than I already am. It did feel SOOOOO good though. I forget that being thinner makes it easier to fly down the street. It’s weird to experience a limber, leaner body after having a different one for most of my life.

So strange to inhabit a stranger’s body.

Obviously, now I know I had three cancers growing inside of me during that sluggish time including some decent sized tumors in my ovaries. I’ll get around to sharing the photos of my stomach pre-surgery. I’ve put off doing my disabled stories series for too long.

I decided recently I will also do a Slutty Stories for 30 days! I asked my friend A who partied with me in New York Cit y for a few and she reminded me of some good ones.

And yes, I have so many, I don’t remember them all. Fuck it. If I’m gone next year, at least I enjoyed this body while it was healthy. Plus, the more I share on the podcast, the more I realize how tame so many of them are. I was considered SO wild 20 years ago.

Now? The young women would laugh at my grandma make-out stories! Ok, maybe not laugh. But compared to what’s on the Internet these days, they’re like fucking PG. It’s more the context that makes them so entertaining (oh just remembered the idiot who tried to woo me with $2 wine hahahhaa how I got out of that situation was a good one). I think they’re just funny. I wish I wrote them down now. I should have kept a notebook! I guess I could read through some old journals, but my writing is so SO bad, it’s actually painful to read them.

Every once in awhile, when I’m moving boxes around, I’ll check them out and it’s hysterical. I come up with these amazing “epiphanies” and look at the date 1996. The “epiphany” then shows back up in 1999, then again in 2003. I stopped keeping the hand written ones awhile ago, unfortunately. But I keep having the same “epiphanies” for YEARS. I’m such a dork.

At least I still have them. My dad used to lose my boxes in the warehouse. He loses stuff like me, though (I know, I know), we don’t fully lose it. We just misplace things. Eventually, it shows back up again.

My sister loses shit for good. She has lost - and I’m not joking - a good 15 coats in her lifetime. I think I’ve lost one. This ugly but awesome orange satin jacket I bought on the sale rack at the Gap. I loved that thing. Oh, the nineties.

I even randomly found my second diamond earring. They are these tiny little things my parents gave to me when I was a teenager, 16th birthday? Or graduation, I don’t remember. I’m THAT good at hanging onto things!

But this is the weird part. I lost the second one in San Diego. I looked EVERYWHERE. I was so upset. (They are the small earrings in my left ear - the other ones are cheapies from Claire’s.)

Out of the blue, last year, I saw it sitting right at the entrance of my bathroom in THIS house. I know people won’t believe this shit! Whatever. Don’t. I know it happened.

I was like: where the fuck did that come from. I hadn’t moved any boxes. Or gone through old ziplocks full of toiletries. I hadn’t carried any little boxes of small things recently. There was absolutely no explanation. I still had the back from when I lost it in the first place! But yeah, that happened. I always have weird shit like that happen. Like the animals looking directly at me, several weeks in a row.

I don’t know. Who the hell knows. Maybe everyone has this shit happens but nobody talks about it.

I hate losing shit. If that’s not clear. Probably to my detriment. I hang onto things, people, ideas, beliefs even when they don’t serve anymore.

No more.

I’m getting my courage to write a post on FB about how I’m not the same person.

I have to cut loose whatever isn’t serving anymore. I simply don’t have the bandwidth to deal with any bullshit, any old beliefs or ways of handling things. I need every bit of focus.

To do things like not contaminate my IV line. To make sure I have energy to write down every single thing I eat before my registered dietitian appointment on Thursday. To go through my mail and see if I fucked up and lost my $15 food stamps because I faxed my form too late (I sent it the day it was due, but our fax machine has been on the fritz and obviously, can’t ask dad to help with that! So many little things he does. It’s not like I haven’t appreciate it - I lived alone a long time. My family…they still see me as able bodied. I think they think I’m sitting around eating bon bons. If only). To keep collecting paperwork to prove to the state that I deserve more than $15. That task is likely never going to happen. Pisses me off when so many Republicans and Libertarians / Independents (which is code for: I don’t give a fuck about anyone but myself), say there are SO many people trying to rip off the government.

SURE, rich people. It’s US that’s all about corruption. The people who are barely staying alive. While the rich GOP rip everyone else off so they can go on a 15th vacation instead of only * gasp * 14 vacations like their poor neighbors in the 2.2 million dollar house next door.

Thanks neighbors! For the $15 food stamps! SO helpful.

Oh, did I mention what it’s like to be terrified of not having my dad work anymore? My niece’s birthday party is in a little bit and I’m exhausted just thinking about going. But I know it would make her happy and the teens are going. Thank goodness for the teens. So real. No bullshit. It’s no wonder I spent so much of my career working with kids. They’re so real. No bullshit.

I can’t take the bullshit.

I’ve sucked it up long enough.

I don’t want to do this next chapter. I don’t want to worry about income. I don’t want to worry about whether every phone call or text is something bad about my dad. I don’t want to calculate every single nutrient I’m taking in. I don’t want to beg for help anymore.

I want to do what everyone else is doing. Living a relatively normal life punctuated by some stress.

Not living with a ton of stress punctuated with a little bit of normal.

I want my biggest irritation to be that a client is paying on time. Or, my car broke down. Or my partner is being weird and moody. Or that I might be passed over for a promotion. Or I don’t know. I’m starting to forget what normal feels like.

I’m forgetting what it’s like to not dream of sleeping because it’s the only time I’m at peace and not in pain or hungry.

I’m forgetting what it’s like to not feel panic attacks coming on at the thought of my dad gone, and no money but government benefits coming in.

I’m forgetting what it’s like to not wonder if it would be better if I just let go.

I know it’s hard for people to hear that. But I promised that I’d be honest.

That’s the hardest part for me. When people think I’m exaggerating or bullshitting about the important stuff.

Sure, I’ll own up to bullshitting when it doesn’t matter (at a bar, or trying to get a corrupt company to not charge some ridiculous fee).

I don’t bullshit about the important stuff.

That’s hard on me. When people haven’t believed how sick I was, or if I was really dying. I don’t know! I certainly was scared I was. Maybe I still am. I look at my dad and he was so fine 8 months ago.

That’s how it goes. When you’re medically fragile, it just takes one hit and then the ripple effect happens.

I wish I was lying.

I was I was making up the dictator comments. The warnings about war. The alarm bills about my GI system.

I wish I was a total fake.

I wish none of this was true.

I was my dad was ok. I wish he was at the warehouse now, planning his Tuesday run with his buddies. I wish he didn’t have an oxygen mask on, which he will likely never get to remove. Ever.

I wish the doctors weren’t telling us what they are telling us.

I wish my body wasn’t so broken that I missed his doctor appointments this winter.

I wish so many things.

Most of all, I wish I could have just a short time where nothing hellish was happening. I had such a beautiful weekend last week.

It feels like a million miles away. Now, it’s deciding whether we call hospice or go for chemo. That will be up to him, of course.

I wish I wasn’t right when I told everyone that the medical system was going to shit. And that medically fragile would be the hardest hit during this war.

I wish I could go back in time and do so many things differently.

But I can’t.

The only thing I can do is keep marching forward. Those kids. They need me. Not as much as I need them, and that is truth.

One is so unhappy right now and I’ll have to take some hits to protect him. Metaphorical hits.

I don’t know how to explain to able bodied what it’s like to have people “learn” on me. It hurts. A lot.

No more.

I go on offense now. After nearly 48 years on defense.

I call out bullshit. I no longer will tolerate any mistreatment. I will not put up with anyone trying to take, take, take instead of give, give, give.

Hell. If someone on this gd island tries to be fake to my face, I just might call them out right then and there. Ha! Can you imagine!?

Seattle people and their bizarre “yeah let’s get together” line. I find it SO weird. It’s the white women - not all, not my awesome wonderful white women who CARE, they know who I’m talking about here - but in a general sense, who are the most fake. Honestly, it’s why I often prefer the company of men. They’ll rip on you right to your face. I love it. Say it to MY FACE. I can’t stand the tittering behind backs. Cowards.

The fakery of ww. Ugh. OMG I just love you! You’re so amazing!

I’ve legit been getting this from one woman in particular - I do everything I can to not be a threat to the femme women who want to be the prettiest one in the room, I mean, geezus look at me - nope, doesn’t matter. She says all that and then I think we’re friends. I text and she is basically like: fuck off.

Ok, so we’re only friends when I’m around you and you’re drunk. Lovely.

No wonder I like being more of a dude. The rules that a woman must abide by in order to flourish under the patriarchy…I’m done.

I need to stop procrastinating and write that post. Sigh…I don’t enjoy it. Maybe I will one day. Being harsh. Slapping people awake. Giving the tough love. Calling out the truth. Being a tough bitch. Sure, it's easier than pretending.

But it’s scary and hard. To go against the grain. To go against the system. To go against people in my inner orbit.

All in the name of the greater good and those who deserve better than what they’re getting.

The train has long since left the station now. I have no choice but to step fully into whatever is next.

I had no idea my dad was part of the equation when I began this journey. I hate watching people I love suffer.

It makes that part of me (my inner hulk) that I try so hard to keep under wraps come out. Maybe that’s the whole point.

I’ve been keeping things mostly under control. Except for when I’m making a point. As long as I can control it, it’s fine.

If I can control it now, hungry and under stress, then I guess it’s time to show it. I wonder how actors do it. How they can play a character that’s a beast, then turn it off and eat lunch. I wonder this all of the time. How to draw on the different aspects of a person’s personality in order to convey a character. I wish I’d done some drama over the years.

Well, no time like the present I guess. Must be warm out, I’m already dehydrated. Fuck. I quit the fluticasone when the weather cooled down, but now I’m seeing it takes a couple of weeks to really kick in. And stays in my system for a couple of weeks after I stop it.

I wonder if anyone even reads these long ass stream of consciousness.

Whatever gets me through. I’ll try to write some publishable pieces as soon as my head clears. hahahaahaha. That’s funny. When my head clears.

I’ve got a child’s party to attend. Need to get my shit together.

Much love,

Jules