Can I wake up now? 6.8.19

I have way cuter photos of Lucy but this is recent in my phone. She is very cuddly. Though, even I know that in the end if she had to choose between me and food, she’d choose food. I kinda respect that.

I have way cuter photos of Lucy but this is recent in my phone. She is very cuddly. Though, even I know that in the end if she had to choose between me and food, she’d choose food. I kinda respect that.

I have so much to stay so much of the time but like I’ve said, once I open up my computer, sometimes I forget all my writing prompts.

I’m trying to “quickly” eat so I can meet a friend, last minute, on a beautiful day. So I want to keep this brief! The quality of my writing when I’m rushed, scared, hungry, and half-asleep….

I keep thinking, things will calm down and I can write more life stories, and work on my medical stories. There never seems to be enough time.

My dad came home from the hospital today because they were essentially doing nothing for him.

My mom write a text last night which I missed: there are no doctors here.

That sounds about right! No doctors on a Friday night! We’ve learned that the hard way over the years. NEVER elect to have surgery on a Friday. Ever.

The first time my dad nearly died was when he had the benign thymoma - it was the size of a grapefruit and please accept my apologies if I’ve already shared this story, I’m spitting out so much content these days, I can’t remember where I’ve shared what - in his chest. It was starting to wrap around all kinds of important nerves.

This same asshole surgeon who did his lung surgery and sent him home in the fall without referring him to an oncologist OR GIVING STANDARD PROCEDURE BLOOD THINNERS. Cancer can cause blood clots - I had to give myself shots every day for 30 days after surgery.

They gave my 74 year old father NOTHING, no follow up. No checking the fluid in his lungs 6 weeks after surgery - which would have likely indicated that the cancer wasn’t all gone.

Anyway, it’s weird that this asshole is the first person to operate on my dad, and likely the last.

They can’t operate on the clot in his artery because they can’t put him under.

With his breathing problems, it’s too risky.

He’s worked SO SO hard to keep his body in shape FOR these things.

And in just a matter of months, this fucking….

Anyway, back then, my dad had his surgery on a Thursday or Friday. It was such a huge procedure, he was in ICU. He was young - this was 2007, I think? So he must have been 62?

Damn, he’s still young. Really.

We’re all rookies at this. I had the most because I had all those years dealing with GI and inflammatory bowel disease. But overall, we didn’t have the experience that we have now.

By Saturday evening, my dad didn’t look right. He was yellow and his blood pressure was really low.

There was this nurse who a lot of people would have discounted because they’re so conditioned to judge people by their outsides.

Like I’ve said, I can’t help but go by whatever energy they are giving off. Even if they are traditionally attractive, if I sense revolting energy, it doesn’t matter what they look like. I’m turned off, nothing to do with sex, I just want to get away from their bad energy.

Anyway, I liked this one. She was smart. They don’t assign just anyone to ICU but still, she was a sharp one.

I like looking for the people that others underestimate.

They’re often full of surprises. Everyone else passing them over.

Not me.

We lucked out that night. I said: something isn’t right. She motioned to the idiot standing nearby and pulled me into the hallway.

She said: listen, your dad has way too much output (blood coming out of the hoses attached to his torso that is basically run-off from the surgery).

I said: he is super strong, he shouldn’t have such a low blood pressure. He’s a runner and very proud of his vitals.

She said: all the attending docs are off tonight. This is what I’m going to do. I’ll give him X Y Z - I used to work in a burn unit for the MILITARY and we had some pretty sick guys, I can keep him alive overnight. But you MUST be here early in the morning to meet with the doctors and advocate for him. They don’t always listen to us….

One of my childhood friends became an RN and I heard ALL kinds of stories about how doctors would almost kill patients and the nurses would swoop in.

Not always.

I did what she told me. I got my mom and brother up early, we made it in there - not an easy feat since I’ve never been a morning person - but we were there before her shift ended at 7am so I could see how he was.

We waited for “rounds.” For anyone new to the hospital “scene” (omg how old am I), the doctors often make rounds VERY early. And when the nurses leave their shift, there is often a lot of confusion as the new nurse comes on shift.

If you don’t time things right, you can miss the entire brigade of doctors who can actually make orders.

The attending came in - not the asshole who did the actual surgery, someone on his team.

I remember him well. He was 40ish, super fit guy, big muscles, obviously very into his workout regime.

*******

Next day now. I’ll finish the story:

He turned and said: he doesn’t look right.

I rattled off everything the nurse told me to say: his hematocrit is too low, his output is too high. His blood pressure is way, way too low for him.

The doctor: he IS in his 60s so his blood pressure is likely to be off.

Me: no, he is a runner. He did Ironman three times. He is SUPER fit.

The doctors eyes widen. I was speaking his language.

He said: ok, then we have to take him back into surgery.

My mom, brother and I looked at each other anxiously. My dad hadn’t been awake that entire time. He was so pale and yellow.

He’d lost so much blood, there was no pink undertone to his skin. That’s what alerted the doctor that something was wrong, based on other things he said.

That nurse saved his life overnight. I advocated for him. This surgeon actually listened.

So many pieces to keeping someone alive in the hospital. So many able-bodied have no idea….

It’s striking how people react when I tell them: don’t go to X. The hospital system that fucked up my dad’s case.

One woman’s eyes got really wide when I told her this on the way out of the vet where I ran into her. She is some council person so she is well connected.

She looked so scared, I followed up: well, don’t go there for cancer.

Her eyes got wider: but I, um, I…

I said: YOUR PEOPLE MAKE SURE NONE OF YOUR PEOPLE GO THERE FOR CANCER.

She was saying: well, I’m not sick!

Not today you aren’t, I can’t help but think. Look at the stats chica. Look at the stats.

Especially for us Jews. We have such fucked up genes from all those generations we were inter-marrying in the ghettos. People wonder why many of us are sick all the time! Not all of us. But a lot.

Mix them up, peeps.

So many people in America are so scared of how diverse the world is becoming. For so many reasons, I’m relishing it. First, I love different people. It’s one of the main reasons I moved to New York City. I LOVED living somewhere super diverse.

When I have some energy - more so before this last episode with my intestines and my dad, now my time is even more limited than it was before - I go to the mall. I love how diverse this one mall is in an area that used to be super white and wealthy. Now, I’m often the only white person walking around, I LOVE IT. I run a couple of errands. Usually that entails buying something that I return the next time I come. I don’t know why, sometimes I just want to own it for a minute. If I ever get my studio set up, I’ll take some photos in that outfit and then return it. I don’t care.

I’ll admit it. I’m even more conscious now about how much SHIT we don’t NEED but keep BUYING. I’m so conscious now of the wrapping something comes in. The single use cups. I’ve stopped buying from Starbucks. I’m sick of that entire brand and their single use cups that don’t compost, even though the company is based here in Seattle.

Seattle. Don’t get me started.

Anyway, I’m not into collecting stuff. When you’re not sure if you’re going to be alive in a few years, it just seems futile.

The surgeon came back into the room and said he had someone, a woman, worse off than dad. He made it clear that this woman was practically dying which is the only reason he got bumped.

We waited, and waited some more.

Finally, they took him out.

They had to crack his chest open a second time. They didn’t use robotics then like they do now. The technology keeps improving - then why are my dad and I not getting better care!?!?!?!?

We waited in our usual spot. And yes, we have an entire system for waiting for someone to come out of surgery in my family. Sad. But true.

Back then, it was a bigger deal.

It would still be a big deal now, but I don’t know. I guess it would feel more familiar so that makes it feel less special.

He said that there was a bleed in there somewhere. That’s why he was having so much blood come out. I think the nurse said it was triple what it should have been. And YET, the resident that was on the night before, kept saying my dad was fine.

Yup.

Listen to those nurses.

My dad had a clot the size of a football pressing on his heart that entire night and most of the previous day.

When the doctors were all gone.

The surgeon said: his heart was so strong, kept on beating. Most people his age…would not have made it through the weekend with a clot like that pressing on their heart.

Not my dad’s runner’s heart.

The surgeon was impressed. This burly, healthy young guy was impressed by my dad’s strong heart.

Same fucking surgeon happened to work on his lung surgery. He’s a thoracic surgeon. I don’t know how I just busted that word “thoracic” out, but I love it when my brain can still do that.

(I also still remember what the herb book said! It’s giving me hope. The key must be to only read a little at a time. Maybe I’ll take notes and place them around the house, so they penetrate my long-term memory. I essentially have to replace my short-term memory OUTSIDE my brain. I do this to remind myself that, for example, tequila is a good motility “drug” when I’m traveling, or whenever. I had to have that note on my mirror for months but now it’s settled into my long-term memory. So fucked up).

So my dad survived his first major surgery. And his second. And even his third with the colon cancer.

The lung surgery.

This is why I keep hollering about how at risk I am.

The able bodied aren’t getting how jacked up you can be on the inside but look perfectly healthy - and even strong like us - on the outside.

The fact that my frame won’t change…too much malnourishment for too long.

I can’t afford any more major hits. I can’t afford the stress I’m under. This is why I begged one sibling to get a housekeeper or someone to help around the house. It doesn’t sound that important, but it takes one more thing off my mom’s plate, and mine as well.

Nope.

I spend so much time doing basic daily tasks, and trying to call doctors and trying to poop, and eating and preparing all my beverage concoctions, I simply don’t have the bandwidth to focus on my case. Writing in here doesn’t feel hard. I’m in bed resting anyway, it helps keep my mind active.

But researching my own medical case? Developing recipes to help keep myself alive?

That sounds fucking hard. Plus, there’s that whole short-term memory problem. I read one part of the article and forget it seconds later. I can’t piece together the science as well as I used to. Me and science have a complicated relationship. I’ll get into that another day.

The best way for me to find experts is to go out further on the Internet, which sounds so incredibly hard and scary.

So many of these things I’ve been putting off, are all tied together. I can’t do it without someone helping me sift through email though. Sarah does what she can in the couple of hours she’s here. But she also helps me make sure I’m getting all my prescriptions ordered, listening to my voicemails, making sure my doctor appointments are in the Google doc that the drivers use to assign themselves. It’s a great system.

But I’ve got to figure out the correspondence piece. I try so hard to motivate to comb through messages! I really do. I get through a few every few days. But that’s not enough.

If people start emailing me with ideas…

The best thing is if they enter them into a form.

I need to shut my eyes. All my writing makes me sleepy.

Fingers crossed my dad makes it through number four…..

Much love,

Jules