It’s Tuesday and I still don’t know the date. I’m still just talking into my phone and it’s hard to get Siri to understand me sometimes. I have a deep sexy voice and sometimes it just seems to go away. My throat is very sore and it’s hard to keep the pain under control because I’m allergic to so many medication. They’re giving me morphine now with a Benadryl chaser, because it makes me itch. Morphine is not very effective on me, but right now it’s my only choice. I had the endoscopy yesterday morning. They took some biopsies and said I would have the results in three days. He took a bunch of pictures of my esophagus and it appears I am really photogenic. However, 50 to 60% of my esophagus is covered in ulcers. The radiation caused it. The entire left side of my esophagus is kind of ugly. All the doctors here, and my radiology oncologist, I’ve been discussing my situation. They presented lots of options, but I don’t like many of them. Postponing radiation is not a good idea, so they’re doing all they can to get me back in that machine. We’ve discussed feeding tubes, infusing through my port at home , Staying in the hospital and having radiation here so that I can keep my IV in. The list goes on. I cannot drink, but I can swallow something like a boost milkshake if I use a spoon and take very small bites at a time. They put numbing medicine down my throat before I try that, though. Without the numbing medicine, it ain’t happening. I had another chest x-ray today, because my cough is getting worse. I studied hard for that test though, so I think I’ll pass. My blood counts are going down, not up, so that kind of sucks. They take blood twice a day and I see the results about mid morning every day. I’m on oxygen, I have a tube going into my port in my chest, I have a finger monitor on, and I have two lower leg pressure pumps attached. They took the electrodes off me yesterday, so that huge machine and all those wires are gone. It’s much more pleasant without them. The nurse just came in and said I’m going to be on two different medications to counteract the side effects of the morphine. When I go home, I will have the same medication, only it will be in liquid form so I can swallow it. If I can swallow enough liquid, they will let me go home tomorrow. If not, I have to stay here until I can swallow enough. I will be drinking water and Boost. That’s all. That’s my diet. They said it would take another two weeks for my esophagus to heal. Just a little while ago, a couple of doctors came in and said I would begin radiation as soon as I could go home. They are going to do another simulation and will not be near my esophagus any longer. I have another infection in my left breast, so I am being infused with antibiotics in my IV. David will be staying with me in the RV, taking care of me, and taking me to my appointments. I can only have one visitor per day, from 4 to 8 PM. Sometimes it’s hard for me to swallow my own saliva. When that happens, no one wants to be in the room with me. Go figure. My night nurse is an idiot. I could go on and on about her, but I sure hope I don’t have her again tonight. I was supposed to be getting pain medicine every two hours last night, but she wouldn’t give it to me. She said it was every four hours. At one point I went 5 1/2 hours without it because I simply could not get her to come back here. Today, I verified when I’m supposed to be getting morphine. It is every two hours. I am not going to put up with the idiot again tonight. I will ask for the charge nurse if she won’t give it to me. other than the night nurse idiot, everyone here is very nice. The night nurse idiot put the wrong port patch on me and I had to have that changed. The needle came out of my port last night, so it had to be re-inserted. They are area was already very tender, so that wasn’t very pleasant. At one point I had five doctors in my room discussing my case with each other and with me. They said I am a rare find. I already knew that, but I did not let on. They said they only get about three cases a year with esophagus’ that look like mine. I am just that special. So, everyone cross your fingers so that I can get out of here in the morning and go to radiation tomorrow afternoon. i’m sorry this is so long, and I haven’t nearly told you everything, but at least I can get it posted.
1/10/25 It's Friday. 2025. Holy cow. When I was a kid, I thought in 2025 we'd be living in space or something and robots would be our maids. Like Rosy, on the Jetsons. This is gonna be a nutshell post: I had several doctor appoints since I last wrote. Had another sleep study for something my cardiologist ordered. Long word, can't remember it. I bought a new car. Christmas was simply delightful with all the kids home. ct/DNA test came back negative (woo-hoo!). Went to Houston to MD Anderson this week for an MRI and my surgeon will call me this afternoon with the results. However, I read in MyChart last night that my tumor had grown only a tiny amount in the past 2 years, so I'm stopping the MRIs because it's probably benign. (woo-hoo!) I'm still doing physical therapy twice a week in the pool to try and help my back. We went to a New Year's Eve party and I did something a friend told me about. I tol...
So sorry to read of your latest setback. Can they give you a pain pump so you can administer your own pain meds? That way the idiot nurse won’t have to worry about taking care of you.
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