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: OMG I HAVE A HEADACHE.
My acupuncturist is such an angel, he is coming by the house! This is definitely special treatment. Our culture doesn’t appreciate the value of relationships and people anymore. But they are everything!
So yesterday. I have stories for you! I can’t believe that I can write in here every day, and never run out of medical crapola to share.
By the way, what the FUCK my post yesterday was…well, I’m a little embarrassed by it. But I left most of it, since it IS an honest rendition of what’s going through my mind before a procedure. I was obviously freaking out, so let’s spout off a bunch of random information, throw in some humble bragging, some neurosis and insecurity and bam! We’ve got a pre-procedure post. Eyeroll.
My dad is sitting on the couch now calling people to tell them goodbye. It’s heartbreaking to hear and watch. I wasn’t sure if I wanted to write here today, but I’m so used to doing it now, I have to go somewhere with all of this stuff happening! Unfolding in real time!
I still have so much to process about my dad, I need time, which we don’t have, to think about it, run it over in my mind… we shall see when I’m ready to write about it.
WHAT THE FUCK IS WRONG WITH OUR MEDICAL SYSTEM?
It’s hard to believe it’s so bad. Besides having my body at a super weird angle during my procedure?
Thank goodness I trust my doctor so much. I’d never go to this facility if it wasn’t for him.
They left my blue clave off! AT A HOSPITAL. I mean, this is a super rookie nursing mistake. One of the first things my home health nurses taught me was: NEVER REMOVE THE BLUE CLAVE.
They put a green cap on the end. I’m not sure if it’s the original, or if it’s a new one - I’m praying it was a new one though I’ve found a lot of facilities don’t have them. But the fact that they put the green cap on, means they SAW that the clave was missing at the end, and STILL didn’t grab a new clave. WTF??? Or tell me to have my home nurses fix it?
It gets worse.
When I woke up, the dressed me RIGHT away - they usually give you more time to feel less groggy. For my sedation, I’m doing propofol these days - it’s a step under general - which wears off a LOT faster than versed. Though, they usually give you both. I can tell they didn’t give me any versed at all - I’m guessing they are trying to save money, gag me with a spoon - because I got home and was wide awake the rest of the day and evening. I cleaned, ate, went on the treadmill!
Because if I wanted to eat eggs, I had to walk it off!
Anyway, they had me DRESSED AND IN THE WHEELCHAIR within 5 minutes. All I had was some apple juice. Nobody asked me if I had to go to the bathroom! Before wheeling me to the car where I had an hour commute home since it was late afternoon.
As they wheeled me down the hallway, I was starting to wake up more and I didn’t feel well at all. Very woozy. By the time we got to my friend, I was super nauseated and needed to go to the bathroom.
I insisted they take me back in. I got a zofran for the nausea. I asked for something besides apple juice which obviously spiked my blood sugar but didn’t give me enough to sustain level blood sugar. I hadn’t eaten anything in about 45 hours at that point.
They were super nice when I came back. I made eye contact with the woman who was obviously in charge and I said: you can NOT wheel a patient out just a few minutes after waking up from this procedure. She didn’t even move her face. Didn’t acknowledge what I said.
I could feel what she was thinking - I told you, I can do that, though it wasn’t hard to figure out, it usually isn’t, a lot of people just don’t listen to their gut or read body language, been studying body language for years, people say more than they realize - she was thinking: this woman could be trouble.
Damn straight bitch.
This is a big reason I make myself appear the way I do.
DO NOT FUCK WITH ME MEDICAL PEOPLE.
When I think about what’s happened with my dad….
I get sad when it’s me. But when it’s my dad, I get so upset.
They somehow find me lactose-free vanilla yogurt which was pretty decent. That’s a good fifth of my calories each day, so I felt pretty good after that. Went to the bathroom, laid on the bed, got my bearings. Had more apple juice.
AND THEN got back in the wheelchair.
Something is very, very wrong in our medical system.
When the bottom line is way, way more important than people’s LIVES.
I didn’t discover the missing clave until a couple of hours later. My home nurse happens to come on Friday so we agreed that I wouldn’t do another IV bag because that tube at the end was now compromised. I can’t risk pushing any bacteria into my body. But since it was covered, I could go overnight.
My nurse came today, switched it out, the skin around the needle looked fine. I’m giving myself a bag now.
Watching someone you love die is HELL.
I’m going to have to be more blunt on facebook. IF YOU WANT TO VISIT WITH MY DAD NOW IS THE TIME TO DO IT. I’m so tired of people thinking I’m exaggerating. About my health. About how bad it is in the government. About so many things.
I may need to clarify that I’ve never had eating disordered behavior in my life. Even my own mom is like: eat something! I get so exasperated with her when she says this.
It’s actually helpful that I have so many photos up on the Internet and my history as a food educator. Nobody can say: well maybe you’re not eating because of something other than your gut problems. This is the benefit of being so open about everything. It’s so hard on me to share, but later, I’m always glad.
It gives me power, I’ve realized. Being vulnerable and honest ultimately is the most powerful stance to take.
I have no more skeletons. Ok, one small one and the only reason I’ll leave it out for now. OK! I’ll just admit it. I was arrested for pot when I was 20 years old. Which obviously nobody gives a rats ass about now. The only time it’s shown up was when I was fingerprinted in New York state when I was working for the school district.
I didn’t want the kids to see it, which is the only reason I’ve been quiet about it. Since it’s legal in so many states now, it’s an eyeroll.
It’s only lately, that I realized that it’s actually a bit of protection that I write such long posts here.
The non-readers won’t bother.
I’ve decided to leave this blog page as is. It’s going to be for the readers, my super fans, and I’m not going to advertise it anywhere. I’ll write more stories! And host them on another page. I’ll try as hard as I can to write more stories and even try to pitch my writing - all of that sounds so hard these days - but this page? It’s for me and the people who are willing to wade through the chaos of my mind for the nuggets.
I can’t do it any other way. I can’t do it the way that all these annoying online marketers recommend.
I have to do it my way.
My mental health is more important than anything.
I’ve been thinking a lot about what it means to be so public. I’m finding that the more public I am on here, the more my introverted side comes out. Or, maybe the introverted side was always there, just like the punk rock, and now they are more DOMINANT. Yes, that resonates.
So I’m not really “different” per say. I just have different aspects about myself that are more dominant. I can’t think of another word (dupe, dupe, dupe, take that Sally! She was the magazine editor that used to edit my work in my writing class and get SO annoyed when I used the same word twice in a paragraph, let alone a sentence! How about this Sally? How about YOU live on 1000 calories per day, watch your body eat itself, watch your dad die, and get treated like shit in a culture that does not give a rats ass about the sick and the dying and then you come bring me YOUR writing and we’ll see how it is).
This is how low I am on the totem pole. THE CLEANING PEOPLE BLOW ME OFF.
Yep. My parent’s cleaning people (who are from another country, been here for many years, she works her ass off) who, by the way, do home care for sick people all of the time so they know this world, it’s her other gig - they are upstairs now. I usually shut my bedroom door while inside to keep the kitties from going out there (well, not Lucy, she hides. The old grumpy man always wants to see what’s up).
But today, I have the door open so that I can ask them TO CLEAN THE SURFACES IN MY BATHROOM. I took some photos to see the before and after.
They didn’t even bother wiping down the counters last time! They only come twice a month and all I have them do is my bathroom and vacuum the floors. I do everything else myself. That’s the downside of a larger space. More to clean. Ugh.
Anyway, I don’t think people at the top of the food chain quite understand how truly awful it is down here at the low end. I KNOW I’m not at the bottom. Hell, if I was a woman of color, I would already be dead. For sure. They would just leave off my whole PICC line or something.
I don’t know how to keep doing this. I don’t know how to do this with my dad. I want to honor his feelings, but I also want to encourage him to fight.
Dr. H to the rescue. I asked that Dr. H tell my dad stories of people that weren’t supposed to survive per mainstream medicine. They are SO doom and gloom. It’s so important to keep the mind in the right place.
I need to listen to my podcast. I’m getting nervous that I’m not paying close enough attention to what I’m saying. I don’t really care if I fuck up things about ME or say things about myself that are ridiculous.
I worry I will hurt someone’s feelings, say something in an offensive way. I want to be careful. It’s really important to me that I’m not causing someone pain that doesn’t need any more pain.
Now, the white able-bodied, they can use some waking up. That’s part of the deal. The more they wake up, the less we suffer. So…I speak out.
I don’t know how to tell people that on FB.
The more they are asleep, the more I suffer.
It hurts, I know. I don’t relish causing them emotional pain. I really don’t.
But it’s my life, and so many others on the line, and if they keep bumbling around thinking they’re not causing any problems, that’s a big problem.
OMG I HAVE TO GO. ThiS WHOLE TIME I WAS TYPING, mY FUCKING TUBING WASN”T PLUGGED INTO ME. That’s how fucking tired I am. Now luckily I can’t die from this. BUT NOW I HAVE A HUGE PUDDLE IN MY BED. GOD DAMMIT FUCK SHIT ARGH I CAN”T DEAL WITH ALL THIS SHIT! My bed was so clean and lovely. I washed the sheets yesterday and put on my fresh summer ones.
I have NO IDEA how I did that. I figured it was like 10-20 minutes. NO! It was a full half liter that came out. How the hell did I not notice that? I put everything in the dryer. Thank goodness I have laundry at home. I’m still appreciative of that after living in New York City for so long.
I remember trudging down the street with my laundry bag thrown over my shoulder like Santa thinking: I’m too old for this shit. Eventually, the last few years, I paid them to do it for me. So cheap! Last time I was in the neighborhood in 2017, I stopped by to visit with my ladies.
They were gone. Of course. The landlords must have upped the rent. $20 for a load! Not worth the headache of doing it there. I can’t believe I just let an entire half liter of fluids flow into my bed and didn’t notice for that entire time. It was 50 minutes!!!!
I need to get a handle on my food intake. I can’t afford to make mistakes. This one can easily be solved, of course. But I get so nervous I’m going to make a mistake while driving, or with my medication.
When we took my dad into the ER - the bad time, the time he didn’t come out for a week and they had him on 12 liters of oxygen and were talking hospice - I saw the nurse put something into his IV line, THEN DROP IT ONTO THE SHEET, got another syringe and came back without cleaning off the end of the line.
Again, this is all nursing 101. If I KNOW it, then it’s basic basic information.
I said something. I said: are you going to clean his line next time you put something in. She caught my look and didn’t say anything, finished up and left without looking at me.
Damn straight sister. I’m here to keep him ALIVE in this 3rd world country bullshit medical system.
Medical tourism is a real thing! A LOT of people are leaving the U.S. for basic care. It’s cheaper to get a root canal in other countries - and that includes travel costs! So fucked up.
It’s so frustrating to me how in denial so many Americans are. They think we’re the “greatest” and “the best” for E-V-E-R-Y-T-H-I-N-G. We’d never have concentration camps here! We’d never human traffic children (where the hell do people think those migrant kids ended up? It’s not like the d-bag in the White House hasn’t been rubbing elbows with people who have serious crimes against them like underage girls being prostituted out to his friends). Shit is bad, my peeps.
Shit is bad.
It was no fucking joke, or hyperbole when I said I may not survive this administration.
I never saw this coming with my dad. I told you now - ahhh finally I can be open about my sensing things, it’s been hell keeping that hidden for so many years - I can often feel things. But not always! I had a bad feeling when my dad was diagnosed with the lung cancer in the fall, but he bounced back so quick. I think: ahh I got that wrong.
I do get things wrong sometimes.
But not often. I WANT them to be wrong all the time. I’m always HOPING people could look back and laugh at me: hey remember when you were yelling fascism! And dictatorship! Hahaaahaha Julie you’re such a nut.
And I’d laugh along and say: thank fucking goodness I was so off the mark. I’m SO glad I was!!!!
I’ve never been in a medical situation like yesterday. They were RUSHING the entire time. Usually everything moves at a snail’s pace, especially in a hospital setting. Doctors offices vary from place to place.
But hospitals? Lord, they take forever.
Yesterday, they were rushing right from the get go. When she was taking my information in the computer. When they handed me my gown, everything fast. Too fast.
I realized, after nearly 30 years of dealing with this bullshit and 30 years since my first colonoscopy, I kind of like slow! I’ve decided that.
At least, I don’t have to worry they will send me home with missing medical equipment.
If I didn’t trust this doctor so much, I’d be worried they didn’t take enough biopsies. Fortunately, it’s only about a foot of tissue that’s the scary part.
Oh yes, I forgot. They did an endoscopy as well - that’s when they stick a little camera down your mouth and check out your stomach. Stomach cancer is high up on the Lynch cancers. They usually blow me off but when they hear my dad had stomach cancer, their eyes get wide and say: oh yes, let’s check it. My doctor didn’t hesitate yesterday. They put the little mouth guard in yesterday and then, buh bye, I was out.
Damn I really wanted to sleep for two days. If anything I was a little hyper last night. That’s partly because I rested so much the day before. Shit, I can’t believe I had 1/2 liter of fluids in my bed just now. The ONE day a week, I have vitamins in my IV bag! I only get them once a week!! And it was an amino acid bag which I only get three days per week.
My sheets got some vitamins and protein! Blerg. Once I meet with the registered dietitian next week, I will have more ammo to ask for more.
But I had my ND look at the little vitamin vials and he said: this is like pissing in a lake.
Sigh again. My third one today.
My regular nurse didn’t come today so I was unable to ask her some questions. I think I’ll call her…
All right, gotta get ready for Dr. H to visit. I’m also hungry. I can’t decide if I will rest and not eat eggs or if I’m too hungry to do that and will try to eat early and walk on the treadmill early. I really try to do this! People ask all the time. When I DO get on the treadmill or go for a walk around 8:30, somehow, it ends up being 10pm, and then I’m all excited that I have time to get some things done. If I have the energy, I try to get some cleaning done, or organizing papers.
Some evenings, I can’t stop writing down ideas. I now have buckets for video skits, not just videos, and podcast ideas, and I can’t turn it off some nights. I want to! But it just keeps spitting out. This is what I’ve been more afraid of people knowing than the sensing! Ok, no the sensing things is a big one for me. I figure this way, if I put it ALL out there, then if it’s too much for some people, they can walk away. I want to give people a chance to do that. If it’s all too much.
If I’m too much.
I realized it’s also empowering. Because if I’m super honest here, and elsewhere, nobody can say: I didn’t know you were struggling with mental health issues! I had a conversation with someone recently who was being flippant about my feelings and I was like: it’s ALL over the Internet that I’m having a hard time, you can’t pretend “you didn’t know.”
And there it was. My realization that it’s actually a source of power for me to share so much publicly. Also, it gives me a layer of protection in the medical field.
I don’t have to beg an editor to publish a piece.
I can do it all by myself.
I don’t have to pitch my tv show ideas.
I can do it all by myself.
As you know by now, I like doing things on my own! All these years, I didn’t understand why I had that feeling of: I want to do this on my own!
I never, ever wanted anyone to be able to say: well if it wasn’t for your husband, you never would have….
Sad isn’t it?
The fucking Patriarchy. I want to a post that says:
When you’re living under the Matriarchy, you can customize your life! Live exactly the way you want, find the people who are super compatible. Everyone else honors who you are and how you’re living.
When you’re living under the Patriarchy, there is one way lifestyle, one way of doing things, one way of presenting oneself to the world. No wonder so many people are so fucking miserable.
That’s why I do my part! I find it fascinating to watch commercials - the few that I do when I watch Jane the Virgin on CW, they have a zillion commercials and Hulu, because I refuse to spend money on the commercial-free access, I also like to watch them, they give me a pulse on what’s happening - and the commercials that are clearly geared toward millennials, with the tattoos and the different people marrying each other, and not everyone with the blond hair and the perfect little everything, my generation is the last of that, thank goodness, it feels good to finally not feel like a weirdo, but quite in line with what’s happening at a culture-wide level - and Gen Z? Holy smokes. They’re going to blow the Patriarchy right out of the water.
Those old white guys are going to do a lot of fucking damage before then.
I’ll be lucky to survive their bullshit. No wonder I didn’t feel like I was getting hydrated earlier. What the hell is going on with me? I can sense what someone is feeling, but I can’t feel a bunch of water pouring into my bed? I only noticed when my sweats started getting wet.
All right, wish me luck. You know, that I don’t do something stupid.
Dr. H on the way!