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Carla

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Everything posted by Carla

  1. Sorry I've been absent. My dad has been feeling pretty good and while it's been like waiting for the other shoe to drop, sometimes it seems like you can almost forget about the whole thing (not really, but you know what I mean). I do check in periodically, though. ANYWAY, his oncologist put him on IRESSA about a month ago, ALONG with Gemzar. I thought this was wierd because the Gemzar was just starting, and I thought you had to have 2 failed rounds of chemo before you did Iressa. He had done one round of Carbo/Taxol. I did ask the oncologist a while back about that study about the people with a certain genetic mutation responding better to Iressa and she first said, well, we'd have to get tumor tissue, but I reminded her that there was supposed to be teh rest of the spinal tumor frozen somewhere. So apparently at some point she did do some kind of EGR test, according to what she said yesterday, and he has the kind of whatever that you are supposed to have. BUT she said, based on this last word from the mfg., to finish out this month's prescription and then don't refill. He just had scans, etc., before starting, so it's not like she really knows if it worked or not. I do know the original tumor shrunk some, after the carbo/taxol and radiation, before starting Iressa, although the PET lit up on an adrenal gland and there is some wierd stuff on the spine and other lung that the radiologist will look at. Plus he has to have a biopsy on a nodule on the thyroid, which may or may not be related. And he's going for an MRI next week on teh spine.
  2. Carla

    TBone has died.

    I haven't been on for a while so missed this sad news. So sorry for all of you. When I was reading about the moon, I looked back at the dates of the post. I saw that same moon here in Florida. I remember going out for some reason Friday evening and seeing it as it started to rise, and I went in and made my son come out and look at it. I knew there was something special about it -- went back and checked on it a couple more times during the night as it rose (even once when I woke up in the middle of the night) and it was really beautiful.
  3. For what it's worth, my dad had hiccups in hospital following his spinal surgery and they told him it was probably the morphine. When he went home they pretty much went away. Sometimes minor recurrences. The radiation doc said if they weren't bad, generally the cure is worse than the hiccups, although sometimes they were related to liver issues. So then they went away again but came back. This time they were connected to this abdominal pain which was connected to nausea that we all thought was side effect of radiation. Once admitted to the hospital for suspected blood infection, the infectious disease doc put hiccups + abdominal pain (which by then was really bad) together and started looking at the gall bladder, which turned out to be the problem. Not related to the lung cancer. Not that this is a definitive answer, because everyone else seemed to have a different theory -- one nurse even suggested a mild dose of THORAZINE, which seemed pretty radical to me. Fortunately it never came to that.
  4. My dad kept wondering when the spinal pain (where he'd had a tumor removed in Feb) was going to end, and turns out it probably was the bad gall bladder (that he had removed last month) causing the pain, because now it's pretty much gone. Go figure. Also, after this last surgery, he had some wheezing -- I had always thought wheezing was gasping for air, but the violin description sounds about right -- real squeaky. In fact, he told the nurse that right after the surgery he thought he was hallucinating from the pain medication because it sounded like babies crying from inside the call monitor - later we figured out it was probably the wheezing, which went away after he did all those breathing exercises they make you do.
  5. Thank you. The pictures are wonderful. HOpe you are doing ok.
  6. Not to mention that people have been surviving with it not even knowing they had it, for long amounts of time.
  7. Carla

    Home

    I'm happy to report that my dad is home from the hospital. A sure sign he feels better is he asked my mom to stop at IHOP for dinner so he could get a real breakfast after all the hospital food, first time he's shown much interest in food for quite a while. Plus he is now able to sit up and not worry about that neck pain, which disappeared while in the hospital (could be it was just time for the spinal surgery pain to go away, or maybe it was related to the gall bladder -- either way, it's GONE!) He attributes his feeling so good, etc., to the hundreds of people praying for him -- including you guys, people he's never met. So keep us on the list -- ride's not over yet, but it's a lot more smooth right now.
  8. Carla

    In a peace now

    I am sorry for your loss, too, and will keep you in prayers.
  9. I remember reading this right around the time I first started coming here, and it made a big impression. I always go back to remembering the beer truck line, and other parts as well. Thanks.
  10. Carla

    checkin in

    Thought of you today when helping myself to some Heath Bar ice cream. Glad news is good.
  11. For what it's worth, the night sweats my dad had were what led his oncologist to culture the blood, but although it didn't turn out to be a blood infection, there apparently was some infection in there from the bad gall bladder that was about to burst -- all totally unrelated to his cancer but all mixed up with the symptoms of side effects, etc. It's really amazing they ever figure anything out. I know when they first said Gall Bladder, I almost laughed -- it seemed like such a mundane thing compared to all the other stuff, although at that point it was pretty potentially lethal if it hadn't been caught in time.
  12. Well, the funny (not FUNNY, I guess) thing is that he didn't have a blood infection at all! BUT, if they hadn't taken the culture which came back with a contamination positive, we wouldn't have been being so vigilant about his temperature, since he's not on chemo or anything yet. So that's why they check him into the hospital, and then the abdominal pain got REALLY bad somewhere by the time he got there. So the infectious disease doc on call figured out that the temperature was kind of high for a blood infection and asked what he was complaining of, and when they said abdominal pain and hiccups that made it worse, she started looking at the gall bladder. She told us that there was certainly an infection going around there but it had not yet travelled to teh blood. None of the cultures they took in the hospital have been positive. The other wierd things are that 1) he was on pain medication from the spinal surgery, which probably masked some of the abdominal pain until it got way out of control, and that medication also had acetomentaphin, which probably kept the temperature lower than it would have shown -- fortunately we took that last reading right before a pain med dose. AND a symptom of gall bladder can be pain between the shoulder blades, but of course if you had had surgery on the spine in that area in Feb., what would you think pain in that area was coming from? But now that pain is gone -- either it was time for it to go, as the surgeon had said a little while ago maybe 4 more weeks, or it was caused by the gall bladder stuff. The only pain he has right now is lower back pain he's had for years, controllable with tylenol or advil......So he is going home soon, looks 100% better, and says he feels better than he has since this whole thing started. That's now 2 near misses, and at least he's up for the rest of the fight.
  13. WEll, after hearing that my dad had a blood infection, I was almost happy because it seemed like they were treating it and it seemed to explain a recent seeming decline. And when I got there Sat., he seemed a little better and so I thought the antibiotics were working. I then learned that there had been 2 cultures and only one positive, so the oncologist thought maybe it had been a false positive due to a contamination, and they were going to take more blood but he had prescribed an antibiotic just in case. So back to square one, MAYBE. BUT then after a pretty good day, he woke up from a nap about 7:30 and he was shivering, so we were making some tea. Then he saw the thermometer sitting there and said, let's check teh temp -- it had been normal up till that point and we were watching, as they said to call if it got over 100.5. SO, it was 101 -- the next reading was higher, and the 3rd was 102.3. So I called the doc, who said he needed to be admitted. He called back with a hospital room # and off we went. Meanwhile my dad was feeling worse -- by the time we got there, I had to get someone to help him out of the back seat where he'd been lying. We went up and they started checking him and hooked him up to antibiotics. Meanwhile, the abdominal pain he'd been having on and off all week got really bad -- especially when he hiccupped, which seemed to be happening more often. So they started doing x-rays that night and did an ultrasound in the morning. Everything pointed to the gall bladder, which, by the time they did emergency surgery on Sunday afternoon, had burst -- they think they caught it in time to avoid massive infection, and it's still not clear if there IS an infection from before -- all the new cultures are still incubating. But the surgeon said he would have been dead had it gone much longer. SO, I guess it is good we were being so vigilant about the temperature -- so now we just have to figure out the infection stuff -- there is an infectious disease doctor working on it who seems to be very good. He at least feels better, although now he has ANOTHER surgery to recover from. My parents live in Orlando, but we don't even need to go to a theme park for an adventure....
  14. Carla

    blood infection

    Thanks - I found some info about the blood culture process and I am hoping that they found the right thing and prescribed the right medication, and also assume that it must be early on or they'd have put him in the hospital. Of course this assumes that they know what they are doing..... He goes in MOnday to see the oncologist's nurse anyway, so I will arm him with tons of written questions and hopefully they will figure out what else needs to be done. Also hopefully I can get my brother to go along with them, as I will be back home by then. They did tell him to call if he had a fever of 100.5, and today his was 97 something -- he tends to run lower than normal as a rule.
  15. Yes, please have a very wonderful day.
  16. Carla

    blood infection

    My dad finished his radiation about 2 weeks ago and was starting to feel better somewhat but last weekend started losing appetite and feeling crappy -- bad enough to not go to church on Easter. He then had some night sweats (no fever) and abdominal pain. We saw the oncologist Wednesday and she took some blood. Today tests came back that he has a bacterial infection in the blood, at least this is what my mom says, who is the one who talked to the nurse. They called in some antibiotics. From what little reading I've done, this can be pretty serious -- is it normal to just do antibiotics at home unless symptoms get worse? I guess the good side, if there is one, is that this could explain why he was feeling crappy as opposed to it being a general hideous progression of the disease, and I guess if they caught it early maybe there's a better chance of dealing with it. I don't even LIKE roller coasters.
  17. I am so sorry to hear. Will pray for you and your family.
  18. Carla

    update

    Thoughts and prayers for all of you in this very hard time.
  19. Well, this seems to make a lot of sense -- so why aren't they doing it more? Too new and radical? Granted, I am no doctor, but seems like if you could figure out in advance what might work and most things don't, why wouldn't you?
  20. Apparently there are lots of wierd things they check that turn out to be nothing, but I know it's hard to just sit back when they tell you, Don't Worry, It's Probably Nothing, but go for another test. Easy for them to say, right? They once sent me for some special ultrasound after a mammogram, which turned out to be ok, and then they had me go for the next mammogram in 6 months just to be sure, and it seemed to take the technician a long time to get the right angle or something, and then while I was lying on the table, one nurse came in and said, Oh, someone else will come in and tell you the results, and so I was certain it was something too awful for the nurse to be allowed to tell, and then I waited for ETERNITY on this table, and the longer I waited the more sure I was that they were going to tell me really awful news, and then they came in and said it was just a cyst, no big deal. So hoping that it turns out to be something like that -- just a doctor being cautious.
  21. Will send prayers your way.
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