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-----Original Message-----
From: Lillian <firefly@islc.net>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Wednesday, May 12, 1999 10:02 AM
Subject: Re: [MOL] Re: Cori and MolersGlen, I was thinking would the arieda help your sisters bones? It sounds like a good shot to me, definitely something to look into. Your friend, lillian-----Original Message-----
From: Gwen Kouts <gwen@donet.com>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Cc: Jackie Howard <RHTROUT@AOL.COM>; Carl Muncy <c.muncy@worldnet.att.net>; Amie Hurst <Amie@donet.com>
Date: Wednesday, May 12, 1999 6:05 AM
Subject: [MOL] Re: Cori and MolersThank you everyone for your special prayers! Things did not turn out so bad for Barb. She was taken to hospital yesterday, full of anxiety over her treatment procedure, the Oncologist was insisting on having another doctor do - even tho he didn't know if it would work. (The implant in the back - morphine - for back pain). They were going to keep her two to three days. She did not want to go and did not want any part of it but her family (Husband and Son) make all of her decisions for her, for some reason. Her mind is still very good. Anyway, I went to her house to visit her before she went to hospital and she was very very worried. We prayed, we talked, and we just spent time together. As it turns out - thank you God! - the Doctor who was supposed to do the procedure came into the room after her husband had her admitted - and told him the procedure could kill her - could cause her to go into pulmonary failure because her lungs are so damaged already from the radiation - (she is on oxygen all the time at 5 to 6 level) so her husband said then NO WAY, discharged her and took her home. The Doctors instead now are going to try a morphine patch - which is what I suggested two months ago, from reading about it here in the forum. Anyway, Thank God, she was only gone about five hours and back home - where she wants to be!Now if they would only give her the rest of her chemo - which she hasn't had for two months because the one Dr. is so hung up on her back pain. She was responding very well to Taxol and Carboplatin.I suggested to her husband a couple of weeks ago to take her records to another hospital here in Dayton, and get a second opinion, but that made him mad. So, maybe now, he will hopefully think of it on his own. I certainly am not ready to write my Sister off just because one Doctor doesn't want to give her chemo because of her back pain. I can only assume that her husband must think that I don't think he is making the right decisions - but I told him we are all trying to help Barb - that is all. And I do very much believe in seeking at the very least a second opinion. I get good suggestions from the forum, but walk carefully when suggesting anything.She does have back pain - alot when you try to move her, but that is the only time. It makes it difficult to set her on the bedpan ,etc. We haven't been able to lift her out of the bed for at least two months, just to sit her on the chair for a change of pace. So, it is of course, discouraging, because we do not see any improvement, but the Dr. himself said she was responding very, very well to the chemo.I also happened to be there when her caseworker from insurance called her house, and I asked about her leg exercises since she can't move them on her own, and since my two surgeries, breast and lymph node, I can not do them for her anymore. Anyway, she is covered by insurance to have a nurses aide come in every day and do them with her. YEAH!! I was worried about blood clots setting in.I know that her Son and husband love her, but their stress level gets the best of them, and they end of taking it out on my sister. I don't like that. Her husband could afford to hire more help in there for her, but he doesn't want to, so we will keep praying day to day, that things stay somewhat calm at her house. Very difficult situation. Her daughter-in-law, who is only 22, does not want to be there all the time, so they are all very stressed. It takes two people to get her on the bedpan - so the son and his young wife have been petty much living there. Luckily, they have no kids to contend with yet.But, we will take the good news we have had so far! My lymph nodes according to my Dayton Doctors came out negative - no cancer there! Still have to go thru treatment (rad or chemo or both? - not decided yet) - but things look a little better! AND Barb is back home!So, maybe things are looking up! (Hope this letter wasn't too long)Take Care all of you,Hugs and Prayers,Gwen KoutsSister Barb (nsclc - ademocarcinoma, mets to spine and ribs - dx 12/17/98, rad 33 hits or more - damaged lungsChemo - two small doses Taxol and Carboplatin - but withheld the past two months for back pain reasons.Gwen - Breast cancer - ductal carcinoma infiltrating - no lymph node involvement - dx. 5/99. Lobular carcinoma in situ in breast - dx. 8/98 at Cleveland Clinic. Lung nodule - 1 cm being followed by Lung Specialist - undetermined - since 8/97.-----Original Message-----Dear Gwen - well you sure have you have lots of difficult situations in your life right now you poor dear. I wish I could go and sit with your sister. You need to take care of yourself right now - obviously the stress and conflict with your brother in law is not what you need. I know our dear Mary had very similar situations with Angelo's family - which caused all of them untold heartache and pain, but they were all able to slowly calm down and face the ordeal together. I am sure your sister is very loved and they are probably all desperate right now....taking their stress out on you. Serious illness and caregiving brings out the best and worst it seems over and again. I'm sure fear and exhaustion etc all play a part, and patients sometimes become difficult and demanding...their illness bringing out the small inner child in them. Do not despair. You need to take care of you. Keep praying as we all are for you. I think the suggestion of calling the NCI for their opinion is an excellent one...also that you get a second opinion. Your sister is probably better off being taken care of in a hospital...what she probably suffers from is anxiety and panic attacks..maybe you can suggest they give her something to calm that. Also maybe it would be a better idea that her family rest at night rather than be at the hospital...when one is tired, ones defenses are down and stress gets worse and they are less able to care for her. I had very major surgery a couple of years ago and no one spent the night with me at all...you know you can never get a good night's rest in a hospital !! They wake you up to ask if you want a sleeping pill !!!!! So why subject the whole family to it...you just need to trust that your sister is being cared for in the hospital and that is maybe where she belongs right now...... and take care of you !!!!!! Hopefully the morphine shunt will help her with her considerable pain. You are all in my prayers. Do everything you can to deffuse the situation, and LET GO...LET GOD....all will work out in the end. You are in my thoughts and prayers....if there is anything I can assist you with in any way, please do not hesitate to ask...you have my prayers and good thoughts. Love. Cori.
From: Stuart Scott Harth <charth@bellsouth.net>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Monday, May 10, 1999 10:18 AM
Subject: Re: [MOL] I'm back!Gwen Kouts wrote:
Hi everyone. I am back on the forum, I hope. This message will see.I still do not have everything cleaned up from my disaster last week. Ikept getting messages over and over. I still have over 500 in there to
clean up. I am wondering, is there two separate addresses for forums -mol-cancer@lists.com and lung-onc? =20Anyway, thank you Marty & Barb, Cori, Lillian, Nanc, Sandi, and so many
others that wrote last week. It meant so much. I was not scared Friday
for the lymph node surgery.. somehow I was pretty much at peace.. Still
have not heard results from that yet. (Originally, the breast lumpectomyhas showed Infiltrating Ductal Carcinoma).I am now trying to decide whether to go to Cleveland Clinic or the James
Arthur Hospital in Columbus for second opinion. I know that Columbus ismuch closer ( one hrs vs 3 1/2 hrs), but have not much data on them. I
am wondering if I go to one of them, if they are going to recommend a
mastectomy (double) since I have a LCIS (lobular carcinoma in situ
condition) also, which is a precancer condition of the breast. The
Doctor here in Dayton didn't.Anyway, every day is a new day, and Thank God we are able to enjoy it!
I am on sick leave for at least the next two weeks, so I will be able toparticipate a little more in the forum.Please say a prayer for my sister Barb today! She has to go to the
hospital tomorrow, against her wishes, and she will be there for acouple of days. The Doctor is going to put some kind of implant in herback (morphine?) that is supposed to help her back pain. She is
mentally competent, but her family now railroads her and makes all herdecisions for her. I am helpless. I tried to offer my opinions aboutsome extra help for her so her son and husband don't get so stressed,and also about getting a second opinion for her, but her husband jumpedout of his skin, and yelled at me very badly (the day I was told I had
breast cancer). I came home and the dam broke loose, I cried for threehours. Mostly for my Sister. Her husband obviously does not want any
opinions from me. They haven't given her any more chemo (for twomonths) because the family and one Doctor is mad because she wouldn't
get the implant, so they have been holding back her chemo- which washelping her tumors shrink.. How awful, I think! Her husband is financially well set,he has his own business, but it is amazing how tight some people are- the more you have themore you think you need, I guess. Oh well, please pray for her caretakers too, I am sure theylove her but her constant care because of bedridden condition since December has taken itstoll. She in the end suffers for their stress.Anyway, please pray for God to send a lot of angels to be with her while
she is in the hospital. She will be afraid and possibly have to go thru
more pain. She doesn't like to be moved so the ride to the hospital in
itself will be very, very hard on her. She doesn't want to be by
herself at the hospital, but her son,. daughter-in-law, and husband have
indicated that they will not be staying. She gets very afraid when she
is alone, almost panicy. Maybe I will be well enough to stay, but I am
trying to recover from my surgery Friday on lymph nodes. God be with us all.
Thanks you wonderful people,
Love,
Gwen Kouts
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