I am still in the hospital. I have informed all doctors that i am leaving tomorrow at noon, and they all tell me the same thing: they will not sign off on the discharge, so i am leaving AMA (against medical advice). What this means is that my insurance company now has the right to refuse to pay for any of these procedures or treatment, and i will be fighting this battle later. But i have to go.
Dr. Arcovedo, who calls the shots in my case, still hasn’t cleared me to eat solid foods. First, it was because i needed to work my way up to clear liquids and then full liquids as my stomach was recovering from the ulcer operation … and i understand that, as frustrating as it has been for me. But yesterday, days after i have shown to tolerate all liquids, he refused to approve solid foods because i was hiccuping. I tried explaining it was a nervous hiccup, and he told me it was because my stomach wasn’t ready for solid foods. So, i seriously have not eaten food since last Tuesday at 1:30.
This hospital experience has been like many others back when i went through cancer treatment, and i am sure i will blog about this week in more detail at a later time. But for now, i just want all of you to know that i am returning to Mexico tomorrow to get half a week of more treatment before returning to AZ.
I have no insightful stories, no revelational moments to share, no positive progress updates. This hospital is terrible. Most hospitals are, but this i am disgusted by some of their practices here. I’ll get into more detail about my experience here in another blog post, when i have the energy. For now, though, I’m just passing along the facts.
They repaired the hole in my ulcer on Wednesday and still do not feel comfortable giving me any solid foods. Instead, they give me a bunch of liquids, most of which are not healthy for anyone, much less a cancer patient.
I developed C difficil, presumably as a result of all the antibiotics i have received in the last two months (both here and at Rubio). They have me wearing a diaper, and i sit in my own shit for portions of the day. So now, even though i came in here for an ulcer surgery, they won’t let me leave until they treat the C difficil. They went me to stay here up to two weeks. Not an option.
Dr. Barrera is out of the country. I seriously am NOT having good luck recently with getting follow-up information from doctors who perform surgery on me. Fuck, how i miss Dr. Matatov right about now.
Here is the plan outlined by Kristina, Dr. Barrera’s P.A.
There will be no food or drink today, either. This is non-negotiable. She said the hole in my stomach/small intestine was pretty big (even though the report said it was less than 1cm), and they covered that hole with an omental flap, which I understand to just be a clump of fatty tissue. They need to give that time to make sure that the flap keeps the hole closed. There was also a lot of cloudy, gooey liquid circulating around my intestines and abdomem, liquid that should have been clear and smooth.
Tomorrow at 9:00, they will remove this drain from my throat. This 40-centimeter hose has been taking mucus and fluid out of my stomach ever since the surgery.
IF, at 10:00am, i am not having additional pain in my stomach from the drain removal, i will be allowed to have water and clear soup broth.
IF, at noon, my stomach handled the soup broth adequately, i will be allowed to have non-clear liquids: jello, yogurt, applesauce, etc.
IF my stomach continues to go all day Saturday handling the non-clear liquids, they MIGHT allow me to have solid food for dinner. Kristina was quite reticent about agreeing to that part; she wants me to wait until Sunday before eating solid foods. So, i know she just said Saturday night to appease me, but I’m likely not going to get anything solid until Sunday.
(I will update this specific list every time i learn something new on Wednesday or Thursday, instead of writing separate logs. I will bold new informationand adjust the title to make it easier for you to know when i have added something. I will start a new bullet list in a separate entry on Friday.)
It is offically 36 hours since this nightmare started.
I had an ulcer. Surgery was successful, I’ve been told. I have not yet spoken to a doctor about the procedure. From little pieces of information that i have gathered from others, i had a perforated ulcer, meaning the ulcer had ripped a hole in my stomach lining, so there was all this gas moving freely around in my stomach instead of being contained within my intestines like it’s supposed to be.
I will be at this hospital for up to a week. One nurse told me the hospital stay for this procedure ranges from 4 days to a couple weeks, with most patients being discharged after a week.
I have a catheter in but no colonoscopy bag, which i was told was my worst-case scenario. So that’s a small bit of good news in all this. The catheter will need to stay in for several days.
My room at Rubio will be held for me.
Hana took Botas today. He is with his new family now.
I’m still coming up off anesthesia, which means I’m still disoriented, while the pain is building.
I’m in a shared room with a loud and large Mexican family. This room is too small for all these people.
I do not want visitors or phone calls. Please stop. Also, be patient with me responding to your texts. I’m completely overwhelmed right now.
I’ll work on giving you more positive, friendly bullet points later tonight.
I’m pretty sure I’m in a private Christian hospital. Tonight, they conducted a prayer over the loudspeaker.
My new roommate this evening was an older Asian lady. Now I am the obnoxious loud one. 🤷🏻♀️ Luckily, i am a charmer when i want to be, and i was just informed that my request for a private room was approved. I’ll have my own space within the hour. It really had nothing to do with being charming. Here is a tip for you: If you ever find yourself in the hospital with a roommate, and you want your own private room, tell them you have a history of C difficile. It’s a really gross thing involving poop, and it’s highly contagious in hospitals, so they’ll give you your own isolation room automatically. I learned this trick during one of my other cancer-related surgeries, and it works every time.
The pain continues to be insufferable. They won’t give me more than 0.4mg of Dilaudid at a time. (As a reference point, after my other surgeries, i would be sent home with 2mg tablets.) So what happens is i receive a 0.4 dose, it makes me drowsy, i fall asleep, and then just shy of two hours later, i wake up with the same 9/10 level pain and have to wait up to 15 minutes to get the next 0.4 dose approved and administered. In other words, the insufficient dosage is not allowing me to ever get ahead of the pain. I’ve decided to combat this by setting multiple timers on my phone so that i can play their numbers and timers game and get more frequent doses of pain meds (even though those other doses will only be rounds of 0.1mg or 0.2mg, depending on what i tell them my pain level is). Playing this game requires me to stay awake and consciously deal with the pain, which is enormously frustrating but a latent consequence stemming from our country’s mismanagement of opioids.