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Those 10 (or more) tests from the inside

December 1, 2010

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.

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11 Comments leave one →
  1. December 1, 2010 3:57 am

    Here we are both up in the middle of the night again. But this time, I’m getting ready to go to the office. It’s the first of the month, the busiest day for accounting, and it’s down to just me and the CFO today to get ‘er done. Glad you got through all that testing in one “swell foop”, and we’ll sit and wait with you for results from afar, and hope you have a LOT less busy day today than yesterday.
    XOXOXOXO

  2. Murray permalink
    December 1, 2010 5:33 am

    Wow. I’m glad to hear to from you, though it sounds like it was quite a day. The lung news sounds promising. Years ago I committed to stop saying what I wouldn’t do (inevitably I ended up doing whatever I previously opposed); but taking steroids truly is evil – so, though we do what we have to, I hope you can wean from those soon.

    We’ll pray for good results so that you can go home. I think you’re right to get the home help – though I’m sure your guys would do whatever, the help could be comforting to them (just feeling an “expert” is around to check from time to time). We had home help come for a few weeks following my mom’s hip replacement, and they were very reassuring to me, and gave me an opportunity to ask questions, get tips for how to help, etc.

    As always, you’re in our hearts and prayers. – Maria

  3. Wendy permalink
    December 1, 2010 6:50 am

    Jill, I’m very glad to hear from you! Usually, the waiting seems to be the worst (to me anyway), but this time it sounds like the testing itself was torture. Hopefully, today you will be able to get a rest from all of the testing, and maybe even a little bit of actual rest. I’ll bet you are really looking forward to sleeping lying down. Know you are constantly in my thoughts and prayers. And, thank you to Debbie for keeping us informed when you are otherwise occupied.

  4. Sandy Bartell permalink
    December 1, 2010 7:49 am

    Jill, it’s so good to hear from you again! I really appreciated your sister Debbie (she is wonderful!) keeping us informed about what was going on but I missed hearing from you. I hope they can get you off the danged Evil Steroidus soon! I had pneumonia once when I was a kid and remember how hard it was to breathe; I know it’s not even a fraction of what you’re going through, so I’m glad you’re in the hospital where they can help you with the breathing through the drainage. Hugs to you.

  5. Ellen permalink
    December 1, 2010 8:21 am

    That’s great about the shrinkage of the brain tumors!

    I loved what you said about telling the doctors to do the quick scan. lol I see your piss and vinegar levels are just fine. 🙂

    Thank you DEBBIE!

    Staying tuned in!

    El

  6. Sarahtee permalink
    December 1, 2010 11:56 am

    Jill, good to know they managed all those tests yesterday, though they do sound pretty horrible. I hope today’s fact finding goes smoothly and you get good results. Will be checking for your updates – people from all over the world are keeping tabs on you 😉

    Sarah xxx

  7. Babs permalink
    December 1, 2010 3:51 pm

    I like Ellen’s piss and vinegar analogy. Sums thing ups pretty well right now. Try to get a good nights sleep.
    Thanks Debbie…..
    Babs

  8. E Lis permalink
    December 1, 2010 5:04 pm

    Oh Jill, so many good thoughts and prayers sent your way. Now enough of the ’till I die comments’ okay you have a right to them… can say it here, but I think of you and hold good thoughts. Feel what you feel, Say what you say and I only wish I was closer so I could come drop by at the hospital but the winter storms make that even more of an issue. (((HUG))) Much love…

  9. JakKim permalink
    December 1, 2010 6:35 pm

    just some smooches, letting you know I’m checking in ❤

    xoxo

  10. December 1, 2010 10:54 pm

    Got up this morning to teach class and there was Venus hanging above the neighbor’s garage. I almost never get to see it as a dawn star, and almost never see stars in November anyway. Usually it is raining (as it was an hour after this morning’s Venus sighting). Doesn’t Kermit sing something about wishes being heard and answered when wished on the morning star? Then my wish is health for you soon!

  11. Bemused Boomer permalink
    December 1, 2010 11:21 pm

    If it takes a drain to keep from swimming sideways, I guess that’s how it has to be for now. Not pleasant I know, and hopefully only temporary. Yes, steroids are like a deal with the devil; they give relief but the cost is pretty awful. Glad to hear you may soon be off of them. I’ve had my go-arounds with them for my auto immune disease.

    Blessings to you as you move resolutely forward!

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