Those 10 (or more) tests from the inside
First, I want to stand up and applaud Debbie. I’m sure she’ll be posting more for me in the days and weeks to come, but I am awake for the moment and feeling like I want to talk with someone or other. So, here you all are and I will talk with you.
One thing I don’t know if Debbie caught at the end of the day is that Dr. Hope Jr. stopped by to talk with Hank, Daniel and me. He said that the quick MRI he looked at showed shrinkage of the brain mass that they’ve been watching and that he thinks I can now start tapering off the decadron (evil steroid)l. He’s going to get a better look at the final MRI today and then give orders for tapering. Mind you, this is not final for the look at the MRI, but they’ve been giving me decadron (makes your heart race) at the same time as part of my problem is that we can’t get my pulse to go down. It seems beyond stupid to keep taking the stuff.
So, I had to stop eating or drinking anything at about midnight last night. This was incredibly hard on my system. Starting at 8 a.m. they took 850cc of fluid off my left lung after a chest xray. The goal was to be able to get me in shape to lie down for 20 minutes on my back so they could finish the brain MRI (which didn’t happen until 3:00). after the drawing off of fluid, I had an ultrasound of my entire chest area. That took quite a while and involved a very strong tech who had to try to “see” through the pleural effusions. Again, I had to lie on my back for a while, and the sheer strength he had to use was very painful. Then I had that brain MRI. When they came to get me, I told them to run. I told them I wanted the fast scan, not the one where they waste their time looking at pictures in between — just do the darned thing and get it overwith. And they did. It took 20 minutes. Had I not been drained first, it wouldn’t have worked. Then they did a doppler of my heart through an ultrasound probe in my throat, which required twilight sleep.
After all that, and after I had started getting something to eat (finally) I was subjected to a 3-hour doppler of every blood vessel from my neck to my toes. It was a stressful day.
So, today is just waiting for results.
What we heard yesterday is that the tumors in my lungs are disturbing the lining and causing the filling. Agreement right now is to keep me here for routine draining until they can install Pleur-X catheters on both sides so I can manage the drainage from home rather than having to get “tapped” every couple of days. Then a couple of things could happen. First, I could have to drain myself daily until I die. Second, whatever chemo I start doing will shrink the lung tumors to such a point that the pleural effusions begin to resolve themselves. Also, we’re still waiting to hear from my insurance on whether they’ll approve two of these things.
My issue with going home from the hospital now is that if I walk around I still get short of breath to the point where I can’t walk down the hall in the house and I certainly can’t walk up our stairs. The nurse just popped in to say my heart rate went up to 150, was I doing something. Um, no just writing. So obviously I’m not ready to be released to the world yet. Again, getting off decadron might help get the heart rate down. Who knows?
So, today we’re figuring out where the mini strokes came from, whether we can do the Pleur-x catheters. If I can get more fluid drawn off my lungs again while we’re waiting, and lots of things. I’m in no shape for the guys to take care of at home, though I know they’d give it a try, so we need to get information about home care from my insurance. We might have to track down how to install one of those stair elevetor thingies.
That’s about all I know for now. We’ll update as we can, but we’re in wait mode too.
Also, it is virtually impossible for me to talk on the phone right now. I have the air to say hello and the air to say goodbye. That’s it. I’m not being rude, I just can’t talk.
More info as we have it. Might not have anything until pretty late in the day today.