Sister J update

Discussion in 'The Watercooler' started by Marguerite, Apr 9, 2010.

  1. Marguerite

    Marguerite Active Member

    Hi folks.

    I got a text message from W yesterday, about our sister J -

    "Suction tube GONE. No extra procedures necessary. X-rays good. J continues to work hard to beat odds + doing well."

    I just rang, W is out but her husband said he would get her to call me at lunchtime so I can give you more detail.

    I am amazed at how well she is doing - we are beginning to hope at last.

  2. ctmom05

    ctmom05 Member

    Now that we know how your sister is doing(happy :) ), please share with us how you are faring.
  3. Marguerite

    Marguerite Active Member

    I just spoke to W. J now has a smaller walking frame, not the larger elbow one. She's doing without oxygen for a lot longer, often only using it when she comes back from a walk. She's getting her husband to carry the oxygen bottle when she walks, and without the weight, she can walk further. W said they put J in a wheelchair and took her outside the hospital briefly yesterday, she loved it.

    J is determined to get home. The hospital discharge person came to talk to her about rehab and J just about threw her out of the room; "rehab" is a dirty word, apparently. So she's well enough now to begin getting stroppy, which is also a good sign. She's doing without oxygen at night now too and her sats are still good. Blood sugar levels still spike during the day because she's still on high levels of prednisone, but they're hoping to begin scaling that down as well.

    Her chest X-rays have shown conclusively that her lungs are definitely recovering, which is absolutely amazing. The lower lung lobes which W previously described as "complete white-out" are now working again, J is getting air right down into her lungs.

    The X-rays also show a small air space outside her lung where the drain didn't get all the air out, but that should also resolve with time. ANd it is not increasing in size, so her lung is now staying inflated. (that drain was from the open lung biopsy they did about three weeks ago).

    As for me - my radiotherapy doesn't start for another few weeks, not until the end of May. Stress-wise things could be better - I've been involved in a stage production, got hooked into it by a former client who dangled the possibility of repeat work (publishing) and then sidetracked me into taking a role in her play. Since then she hasn't mentioned the book, not once, even though I had begun to work on it. Then about three weeks ago, my former client sacked the director (who I felt was doing a brilliant job) and told me a pack of utterly ridiculous lies about her ("she drinks!" said in shocked tones, and "She wanted to meet with me at the bank to do something with the accounts - I don't want to talk about it,") and then promised me she had sent the director a very polite but also very firm dismissal email. Then the director copied it to me (and the rest of the cast) and I found there was no dismissal letter at all, just a note saying the production had been postponed. Turned out, it was postponed because the director had booked the theatre in the name of her own theatre group, using her own insurance, I suspect because the producer, true to form, had not organised anything workable. So of course the producer had to postpone, if she wanted to go ahead without this director.

    Now the director wants to go ahead, wants as many of the previous cast on board but the producer is bullying people by saying "It's unethical," casting aspersions on the director and telling people that if any of us have anything to do with this director, she (producer) will blacken our names and have nothing to do with us.
    I'm a little concerned because others involved with producer do have the capacity to do me some harm in my capacity as a writer and editor. Possibly as an actor as well. Saying stuff to my face is OK, it's the character-smearing behind the scenes that is so hard to fight, you don't know what to fight.

    I should walk away entirely. But easy child 2/difficult child 2 is involved, she has two major roles. Also, if I walk away, then the bully wins. Even though I've told the producer I'm not in her production ("I will be too busy to fit in to your planned schedule") she has warned me to stay away from the other production, which I think is unethical, unfair, inappropriate and a lot of other "in"s. I had been looking forward to this acting job as therapy. I'm still on board (with the director - my former client can go get whatever'd) but I will need to work hard to keep stress to a minimum.

    Health-wise, I'm OK, but currently in limbo as far as the cancer goes. The boob is healing (and smaller than I thought it would be) and still a bit sore. I bought a new bra a few days ago (I mentioned it on Witz's bra thread) but I will need to do more. I saw the GP yesterday, she said the scar is looking good, considering it's only 6 weeks. Other pains are a problem - that's all related to my long-term muscle weakness problems. I got handed the reins of a horse to hold this morning, it nearly pulled my arm out of its socket, it felt like. I'm using my mobility scooter a lot at the moment, often too sore to walk far. So really, when the pain and weakness starts up with the treatment, I probably won't notice much change!

    Thanks for asking, Chris.

  4. klmno

    klmno Active Member

    I'm glad to hear she is doing so much better- the last update I read indicated she had made small strides but this one sounds like she made a major leap!! I'm sure the whole ordeal was a tremendous amount of stress for you, especially with everything else going on in your life. Maybe now things will take a real turn and you can just concentrate on your own health and get thru your treatment and get the cancer behind you.
  5. gcvmom

    gcvmom Here we go again!

    It's nothing short of miraculous that J has improved so significantly in such a short period of time! I hope this can eventually be put far behind her.

    As for your situation, I hope you can minimize the "drama" (yeah, I know, bad pun) in the theatre group and just focus on having a good time and supporting your daughter's efforts. Those people must not know you very well if they think you can be intimidated so easily.

    Don't feel bad about having to use the scooter -- you've been through a ton of stress on top of the medical procedures. Be gentle with yourself!
  6. Marguerite

    Marguerite Active Member

    That's what I find so bizarre - the person trying to intimidate me is someone who should know me very well indeed, but I'm certain she has (among other personality disorders) Narcissistic Personality Disorder. She keeps trying to dangle various carrots in front of me which might work on her, but not on me. I had told her about my cancer in detail (as a friend) but when I used it as an excuse to beg off her production, she was shocked and horrified. Then when she began to remember (apparently), she said, "I am beginning to remember now; I think I must have blocked it out, the news was just so shocking."
    I think she was just so self-absorbed that she never took the news on board, because it did not impact on her in any way and therefore was irrelevant.

    It's the director that I've only met three times (including my meeting last Friday) who I feel more inclination to support.

    As for my use of the scooter - my main concern is the lack of walking I'm doing, when I use the wheels. Plus the batteries are on the way out, so I need to plan my scooter use so I don't get stranded. I long ago accepted the value in using a mobility scooter. I've never been one to worry overmuch about appearances!

  7. timer lady

    timer lady Queen of Hearts

    Marg, J's progress is miraculous! Thanks for sharing ~ I know rehab bites though it sounds as though J is motivated & will get thru it with no problems.

    Thanks for the update.
  8. Hound dog

    Hound dog Nana's are Beautiful

    J is making an amazing recovery and it sounds like she's got the will and stubborness for it to continue. So very glad to hear she is doing so well. :D
  9. Lothlorien

    Lothlorien Active Member Staff Member

    Glad to hear that things are going well for your sister.
  10. Marguerite

    Marguerite Active Member

    Latest news of J - W rang this afternoon, J is going home from hospital on Saturday! Not to rehab, not "in a few weeks' time if you can continue to improve..." but straight home. The doctor said that she is doing so well and home is such a good place for her emotionally, she will continue to do better where she wants to be.

    She's been off oxygen totally for the last couple of days, and today they tried her without a walking frame, on doctor's orders. The physiotherapist wasn't too sure but turned up with a walking stick anyway. Between the walking stick and the physiotherapist's arm, J managed to walk up and down the corridor and the physio was impressed.

    The occupational therapist is visiting her home tomorrow with J's husband, so they can talk about what changes need to be made (if any).

    I asked W about J's last X-ray. She said, "It's clear. The lungs are fine. Still a small area of air around the biopsy site but there has been no change in that, so the lung has healed from the biopsy."

    From what we can understand - this is a terminal condition. She was admitted to hospital at the end stage of tis terminal condition, with lungs full of scar tissue. The prognosis was grim indeed. She was even considered too weak for a biopsy, let alone a transplant. They poured prednisone into her in massive doses, such a vast amount that they have had to give her insulin and monitor her blood sugar levels because such doses usually mean instant diabetes. But hey, when you're dying, anything is worth a chance.

    From my reading, prednisone often doesn't work. In those cases where it does work, it buys time at best. In a couple of extremely rare cases, they began to recover. These cases were so rare, they were written up in the journals.

    And now we seem to have another one. Not only has the prednisone stopped J's deterioration, it has turned around whatever the scarring process was, and healed the scars.

    Now she has to regain strength, regain muscle mass, get strong and well again. She's showering herself, still needing a little help to get out of a chair though. She will need someone with her for a while yet.

    I told W I'd be posting and letting you all know. I also told her of others I've told, at our church and my choir. I've told J the same thing - I'm keeping you all in the loop, there are people barracking for her around the world. W said to tell you all, "It is the prayers of you all that have given J the strength she has needed to fight back from this."

    Apparently the doctor said he is very glad to have been proved wrong.

    It was only about three weeks ago that J was told that she was terminally ill; three weeks ago J said, "I had the chance to let go and I chose to come back. Now I wonder why I fought, if I'm going to die anyway."

    Only now she will live, and her determination and your prayers are all responsible.

    Thank you everyone. Although it doesn't seem enough to simply say, "Thank you."

  11. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Marg, I am so moved. It's a miracle. I am so happy for all of you. May she continue to make good progress, in the comfort of her own home, until her recovery is complete. Amen!

    Love, Esther
  12. Star*

    Star* call 911

    These Aussie women? Tough as they come I'll tell ya. I'm just so pleased and happy to hear you're both on the mend. Um....dear - what is stroppy? Here a razor strop is a leather sort of belt used to sharpen an old fashioned straight razor. Just

    As far as the drunken play-director? OMG your life sounds like Faulty Towers.
  13. Shari

    Shari IsItFridayYet?

    Marg, I am so glad to hear of your sister's success in her fight! That is truly amazing.

    All things considered, I guess your mending isn't so bad, either, but I wish you were feeling a tad better. At the very least, not dealing with ninnys who can't behave. I've never met you and I could tell the producer person that she's gone and ticked off the wrong lady from, what, 10000 miles away? But do remember that a forfeit is not really a win for her. Its simply the action of refusing to fight...most often because something far more important requires your time.
  14. Estherfromjerusalem

    Estherfromjerusalem Well-Known Member

    Star, in England, being "stroppy" is being bad-tempered, i.e. in a bad mood and showing it. I presume in Australia it means the same.

    I just looked in the Websters's dictionary. It says "stroppy" is an altered and shortened form of "obstreperous." Well, I never knew that so I have learned something. Thanks for making me go to the dictionary -- my favourite book!!

    Love, Esther
  15. SearchingForRainbows

    SearchingForRainbows Active Member


    I'm so happy your Sister J is going home today!!! :D Given the bleak prognosis at the beginning, it is just absolutely amazing to hear how much progress she has made!!! As Esther said, it is a miracle!!! :D

    As always, keeping both you and your Sister J in my thoughts... SFR
  16. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Good news. Prednisone is a wonder drug for people with lung problems. One of the downsides is it sucks calcium up like a sponge. SO has developed severe osteo problems with it, not to mention blisters on his eyes. He takes 150 mgs a day - good news he is breathing ok, bad news is his spine is still deterioating. He takes daily injections of Forteo - its helped to stop pregression of the osteo but with the massive doses of prednisone is probably just helping him stop further bone loss instead of doing what it is supposed to do. I am going to ask his doctor to see if he can start decreasing it very slowly - He hasent had a bad bout of his throat./lungs shutting down since he started taking the magnesium piills.

    Make sure your sis takes extra calcium supplements

  17. Marguerite

    Marguerite Active Member

    She's been taking extra calcium but I'll do my best to keep in touch and keep her on it.

    I haven't rung them, I don't want her to have to deal with the phone ringing all the time. Her prednisone levels have been dropped to 50 mg a day. She still has to monitor her blood sugar levels (Marcie, I hope your husband is being monitored and given insulin where necessary). But when I go over next to visit, I'll probably either take some chicken soup, or make some for her while I'm there.

    Phone messages -
    Friday: "It's definitely home tomorrow morning. X-ray today is better too so onward and upward to a full recovery. With much love, thanks and gratitude to you all for helping us get this far. Your continued support will be so much appreciated as this is now the start of an unknown adventure but will continue to kick some butt. Love u."

    Saturday evening: "A GREAT emotional achievement today. J is home!"

    I'm drafting them an email.

  18. GoingNorth

    GoingNorth Crazy Cat Lady

    Marg, being intimately familiar with the illness J had; this is truly a miracle. It remains to be seen if it is a remission or a cure; but simply the fact that she's survived all of this is incredible. I hope she continues to do well.

    husband was already in such bad shape from his bone marrow disease that he had no chance of fighting off the lung disease on top of it. He was transfusion dependent for red cells and platelets for several months before he got the long disease and had had several bouts of neutropenia where he quit making disease fighting white cells.

    His miracle was living for nearly eight years with a disease that normally kills within a year or two of diagnosis.
  19. Hound dog

    Hound dog Nana's are Beautiful

    Marg so wonderful that J gets to go directly home!! :D Just has me beaming! Told ya there are just those patients that the textbooks don't apply to. lol And evidently, J is one of them.

    Being home ought to boost her morale tenfold, giving her even more incentive to get better.

    Tell her we're cheering for her!!