January 16th & 17th Typical hospital BS

Sorry for the late post. The morphine is making my brain fuzzy and I don't want to make myself look too stupid.

I made it through my first week of radiation last week. It seems like I spent the whole week either waiting to see a doctor or in the treatment room.

Radiation was not what I was expecting. Each treatment was boost radiation and only about 20 minutes. I had radiation to my upper chest and the front and back of my neck. Most of that time was just positioning me correctly. The radiation beams don't hurt, you can't even feel them during treatment. But you certainly do later!

By Wednesday I was really starting to hurt. Started out just feeling achy, like I over did it at the gym (wait, how would I even know what that feels like!?) By Thursday afternoon, breathing and swallowing became painful. Friday I was a mess, even walking became difficult and the only thing I could was water and even that was difficult. This was upsetting because I was told the swallowing problems wouldn't begin until later on in my treatment. Even the radiation docs didn't understand why I was having such severe symptoms so early.

Sunday morning I was admitted to the hospital, and the miscommunication began immediately. My stem cell doctor had told me more than once that my new catheter in my chest would be placed that day, but when I got here, the nurses had no idea what I was talking about. They basically accused me of lying or "hearing him incorrectly". But I promised me it would be done on Monday, right after my radiation.

Sunday night they started me on a continuous iv drip of a drug that has given me migraines, but insisted that I had to have it cause it was the only one they use. By Monday morning I had a severe headache and could hardly open my eyes. The doctors made their "rounds" and I asked again if it could be change, no again.

Right before going down for my second radiation, a nurse came in a suggested a different drug they could use, but it wasn't going to be approved until after I got back from radiation. At this point I felt really horrible, if you have ever had a migraine you know what I mean when I say it effects more then just the head, I was feeling really sick too.

They brought me down for radiation and it took extra long because they need more films apparently, so I was on the metal table with my chin taped up for more than an hour. When they sat me up and put me in the wheelchair I started vomiting. They gave me anti nausea drugs and got it under control and sent me to the OR area to have my catheter placed. When I got there, I laid in the pre-op room with the excruciating headache for an hour until the surgeon came in and told me she refused to do the surgery because I had vomited and she was afraid that it could happen again during the procedure and be dangerous.

Went back up to my room and the same doctor that told me there were no other options earlier in the day, had approved the new drug the nurse had suggested and they started it immediately. Within an hour or so the headache went away.

Then something happened I would have never expected, my stem cell doctor, the one that screws everything up actually came into my room! He has never come to see me when I was inpatient in the hospital! He sits down and apologizes, first for the scheduling of the catheter placement. Then he explains that he believes the reason I am having so much throat pain so early is because he gave me an injection last week prematurely. He went on to say that he had hoped by giving it to me so early it would work better, but he has since heard arguments from his colleagues to the contrary and now believes that I am in so much pain and having swallowing problems because of that decision he had made. I told him how disappointed I am in all of this and he seemed very remorseful at least.

Sorry for such a long post, but a lot has happened, I will try to post more frequently if I can manage to stay awake and migraine free! Hopefully today will be a better day.