A Little Lost but Trying to Find Our Way.

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Viewing 15 posts - 16 through 30 (of 43 total)
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  • #39632
    lainy
    Member

    Hey Christine, our Margaret always says “kick Butt”. It’s her favorite expression. It’s OK, go “KICK BUTT!”

    #39631
    christine4
    Member

    Lainy, thanks for responding. I TOTALLY agree with you on two things. Telling my Mother, what I know or understand and getting a second opnion. Mother should know everything. Yes, yes,yes! I am only going to wait as long as it takes for her to recover. She is still a little loopie and extremely tired. So, in a day or so, I am afraid she will here my opinions. But that is another problem for me. My Opinions! I have begged for her to get second and third opinions and I cannot get anywhere, except the practionary doctor. I believe I have finally won that battle. As soon as we find another doctor, I am hoping, he will get her to other doctors for second opinions.

    Marion, WooWee! So many questions, Let me sort what I can.

    marions wrote:
    Hello Christine….naturally, you are upset; who would not be? Too many comments are made and too few questions are answered. If you don’t mind me asking, who is the cancer doctor? Are you talking about the surgeon? Who admitted your Mom to the hospital for parentheses (draining of fluid?) Have you been present when the physicians spoke with your Mom, always.
    And, what is your Mom expressing. Is she equally as puzzled as you are?
    Hang in there. Much is yet to be discovered.
    I am hoping for the other members to chime in and share their thoughts with you also.
    I am thinking of you and am sending all my best wishes your way,
    Marion

    Here Goes! (1)Her Cancer doctor is Dr. Gu, from St. Anthony’s, in the St. Louis area. (2)The Surgeon, can’t rememeber his name, did the procedure for the tube and external drain. He is the one, who told us about scar tissue and cancer growth, then talked with Dr.Gu about whether my Mother had cancer or not. (3)Dr. Gu set-up the procedure for having the fliuds drained from her stomach. (4)I have been to all procedure and surgeries my Mother has had done. No matter, how small or big they are, I am there. I hear all the results form those procedures and surgeries. However, my sister, takes my Mother to all her Doctor appointments. These appointments are the most crucial, because you get most of the results then. I cannot go to these appointment, because my Father, only wants one of us children to go and my sister is it. So, my Mother & sister takes notes and relays the information to the rest of us. (5)My mother understands everything, except she haven’t been told about the possibility of cancer being back or not. When she recovers more, she will here from us, what we know. Then she should talk with Dr. Gu, to have him explain, what he was talking about to the surgeon. I hope I made myself more clear with this post than with my last rambling.
    Let me tell you all something else. Hopefully this will help you understand better, where we are coming from. After they tested the fluids from the stomach, my Mothers first doctor appointment was with the practionary doctor. He told my Mother, she had cancer through out her body and there was nothing else they could do. This was Horrible. The next day, she had an appointment with Dr. Gu. He said that was wrong, that the fluids show no signs of cancer. He then suggested the procedure for the drains. Then the surgeon this week, said something else. What A Rollercoaster Ride! I want off, please. So, as you can see, I don’t know what to think. I know what I want to do. I want to kick some butts. Sorry about that, did I say that. Yes, I did.

    Christine

    #39630
    marions
    Moderator

    Hello Christine….naturally, you are upset; who would not be? Too many comments are made and too few questions are answered. If you don’t mind me asking, who is the cancer doctor? Are you talking about the surgeon? Who admitted your Mom to the hospital for parentheses (draining of fluid?) Have you been present when the physicians spoke with your Mom, always.
    And, what is your Mom expressing. Is she equally as puzzled as you are?
    Hang in there. Much is yet to be discovered.
    I am hoping for the other members to chime in and share their thoughts with you also.
    I am thinking of you and am sending all my best wishes your way,
    Marion

    #39629
    lainy
    Member

    Christine, this is all so hard to believe, I totally understand why you feel as you do. My best suggestion is to run, don’t walk to another Hospital, Oncolgosit and get his opinion. If you are in the St Louis area we have had rave reviews about Barnes Jewish Hospital. Listen to your gut, it is usually right. Gather all Mom’s rcords and test results and go for that second opinion. Having CC is not fair but not being told what is happening is just as unfair. I would tell your Mom that you have many quetions in your mind and you would feel more comfortable with another opinion. With all this going on I don’t think you can keep it secret and I have always believed that a patient has a right to know unless they say, “don’t tell me’. It seems that once everything is known a fighting attitude takes over. Please know that you came to the right place to vent and you come here anytime you feel the need to rant. We all have big shoulders.
    P.S. I think I understand now why 5 doctors said no to radiaton after Teddy’s Whipple. What is done is done, let go of what was and get moving on the future with another opinion.

    #39628
    christine4
    Member

    Hello Everybody, :)
    I’m back! I haven’t posted in awhile. I am going to throw this out there right now. I am a emotional mess. I don’t know, what to say or what to write about my feelings. They are everywhere. So, if I continue to ramble, blame it on emotions. So, many of them. (Deep Breath & Begin)
    Ok! So, my Mother had her whipple surgery in July 2010 and recovered quite well. She did the radiation treatment and managed well enough through that. Had a scan done in January & was told she was cancer free.(We were all elated) But she had a bulging arota, that needed to be repaired. Apparently, the doctors knew about this, they didn’t tell any of us and waited to see how she progressed after her radiation treatment. So, they did that surgery in April. She recovered from that surgery and was doing well. She has done remarkable with her recoveries. She has been quite strong and has kept her positive thinking all along. In May, she started to develop jaundice and her stomach was very bloated. She was also starting to experience swelling in her legs again. She had several test and prodecures done to locate the blockage, that was causing her jaundice. She had a prodcedure done to drain the fluid in the stomach.
    Which brings us to the present. This week, they did two procedures to insert a tube into the bile duct. First, was a tube with an external drain & second, was to replace the external drain with a tube draining from the bile duct to the small intestine. The second procedure was unsussessful. This is where things get messed-up. After her second procedure, the doctor told us that she had scar tissue from the radiation to close to the bile duct, that inserting the tube would only collapse in a day or two. He said, that they only had one area of the liver, they could work with because of the cancer growth. (WHAT!) We were all in shock, we didn’t understand. They told us she was cancer free. One of the test was on the fluids, they drain from her stomach, showed no signs of cancer. So, what’s up with that. The doctor consulted with my Mothers cancer doctor and came to us within 30 minutes.He then told us that there are tumors in the liver, whether they are cancerous or not, he doesn’t know. (I think, he does). He also said, that my Mothers cancer doctor, has no plans to proceed with any further surgeries, procedures, cancer treatment and testing.
    What does this all mean? Where there was hope, there is none. Where you believe a doctors word, you can’t. Are they only dealing with one crisis at a time, not telling you the whole story. (Probably!) Why tell us anything at all. Why tell us only the good news, only to find out they left out the bad. What’s the point in that? How are you suppose to deal with that? We are totally unsure, whether she has cancer or not. Most importantly, and here’s the kicker, my Mother doesn’t know. She is busy recovering from these two procedures. We are now put in the position, of not sure what we understand is right or wrong and we can’t tell her.
    Honestly, what does this mean? Really, where are we? What is next, after my Mothers recovery? So, many questions and living on raw emotions.

    Christine
    Emotionally Unstable Since Friday! (EUSF)
    OR
    The Rambling Fourth Child! (TRFC)

    You decide which or both! :P

    #39627
    linda-z
    Member

    Hi Christine,

    I also had suspected blood clots, but who am I to say. Glad it wasn’t, but hope they find the “culprit” soon.

    Stay positive and enjoy the weekend.

    Linda

    (oh, by the way I love your Tigger too! Thanks for the lift.)

    #39626
    gavin
    Moderator

    Hi Christine,

    Thanks for the update on your mum, and I am glad that the ultrasound went well and showed no signs of bloodclots. Hopefully they will get to the cause of the swelling very soon. Hoping for more good news on Monday when your mum sees the surgeon.

    Enjoy your camping this weekend, it sounds like fun!

    Best wishes,

    Gavin

    #39625
    christine4
    Member
    Lalupes wrote:
    Enjoy your break, Christine – I hope you come back relaxed & refreshed. :)

    [BTW – where did you get your gorgeous bouncing Tigger?? I love it!!! :D]

    Just internet search – emoticons & smileys, tons of sites come up. Run through them. You like a smiley face, right click and save in my documents. Have fun with the search. I run two websites and have tons of smileys for my members to pick from for posting or avatars. I chose Tigger here, just to keep an up beat attitude. He is pretty cute. Makes me smile.

    Christine

    #39624
    lalupes
    Participant

    Enjoy your break, Christine – I hope you come back relaxed & refreshed. :)

    [BTW – where did you get your gorgeous bouncing Tigger?? I love it!!! :D]

    #39623
    lainy
    Member

    Glad to hear the good news. With your mother’s attitude you are all on a good news trend. Have a wonderful break I am sure it is much needed. Enjoy!

    #39622
    christine4
    Member

    OK…Just talked with my Mother. The ultrasound went well yesterday. They said, they didn’t see any blood clots. Great news! :) One less thing to worry about. Process of limitination. So, now we have to figure out, what else is causing the swelling. My Mother had the results sent to all her doctors, to review as well. Now we, just wait for Monday. She sees the surgeron, Dr, Huesh, to see if they are going to do the surgery or not. Hoping and Praying for the right answers, whatever that may be.

    The swelling hasn’t changed. Still the same swelling, but no worst. She is feeling well enough to try to go grocery shopping with my dad, for a few things. She said, if she gets tired or her legs hurt to much, she’ll just go sit out in car. She said, she did well yesterday, going out to get the ultrasound, so she was going to try shopping today. She dosen’t want to be held down. I told it was great, just don’t over do it. What a ‘good old gal’!

    Well that’s our update. I’ll be updating again, after the doctor’s visit on Monday.

    Christine

    P.S. While we are in the waiting mode. Plan on getting out of here for a little break. Going camping! Floating on Saturday and going to try to catch as many fish as I can. Love the outdoors. My heaven on earth! :)

    #39621
    marions
    Moderator

    Christine….Tomorrow can’t come soon enough. I am hoping for good news tomorrow.
    I am crossing my fingers.
    Best wishes,
    Marion

    #39620
    christine4
    Member

    Marions,

    My Mother said, that she is elevating her legs more often than before we talked. The swelling has not changed. She thinks, that maybe they are a little bit worst. She said, that the swelling is above her knee now. She experience extreme pain, when she bumps them or even scratches them. Good news, she is having an ultrasound done on them, tomorrow morning.. So, we will see what the results are soon, whether her legs has blood clots or not. I’ll keep you updated. I’m sure I will have more questions and concerns.

    Thanks!
    Christine

    #39619
    marions
    Moderator

    Christine…I agree with Gavin. Speak with the physician first regarding the tight stockings. Has your Mom elevated the legs and has it helped?
    Best wishes,
    Marion

    #39618
    gavin
    Moderator

    Hi Christine,

    When my dad was in the hospital for his PDT treatment, his specialist gave him these type of stockings to wear. But at that time he had no swelling in his legs. I’m not sure how they would or if they would affect the swelling in your mums legs, so maybe your mum could speak with her doctor before using them? The step stool for your mum to use when sitting is a good idea and my dad used a similar thing when he was sitting with his feet up.

    Best wishes,

    Gavin

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