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Hello Everybody! I write this post with a heavy, heavy heart. My Mother passed away Sunday morning. She is in a much better place now.
Since I lasted posted, as you can imagine, things got continuously worst. She had a hard time recovering from the last procedures. Her jaundice got worst and she becoming more and more tired. She started to have more fluids building in the stomach area as well. About three weeks ago, I noticed not only her fatigue, she was shaking and she was having difficulty completing her thoughts. Shortly after that, she was beginning to feel so bad, she asked to go to the hospital. She was admitted to a different hospital this time. We took her to St.Clare’s instead of St. Anthony’s because my Father was admitted a couple of days prior. He had a heart attack and kidney failure at the same time. Sooo, we had both our parents in the hospital at the same time. We were on a very exhausting ride now. My father is slowly recovering. My Mother was told at that time, she had a high level of ammonia in her systems. Never heard of such a thing. But apparently it was caused by the issues my mother was experiencing with her liver. Ammonia build-up in your system, will cause the side effects we were seeing with my mother. Fatique, shaking and memory/confusion with her thoughts. They were able to fix this issue easily enough and she was starting to feel better, except for being tired. The doctors at St. Clare’s did scans and got her results, they were not good. She had cancer through out. We all finally got the truth of her situation. We set-up Hospice and took her home. We made her as comfortable as possible and began our vigilant. My sister and I took turns staying with my mother 24/7. We used a Baby monitor to hear her when see was awake or needed anything. We would carry it around, everywhere we went. My sister named the monitor, ‘Momitor’. Our brother and all our children were coming in as often as possible to visit and give us a break during the day. She really enjoyed all the visits and everybody around her. One thing she loved the most, was her popsicles. So, the freeze had a content supply of popsicles, especially banana favor. It was so cute, you hear singing from the momitor, ‘Popsicle’. We would giggle all the way from the freezer to my mom, bringing her, her popsicle. What joy in a single word. We will never say popsicle again without singing. And everybody want to have popsicles in the freeze now. After about a week at home, my mother decide to go into a facility, because she was afraid, that my sister and I would hurt ourselves, taking care of her.
She was right. We were worried about hurting her too. She was experiencing more and more pain. We had pain medication for her, but we were worried about what was the right time to go to the next level of pain medication. We noticed daily, she was slipping away quite quickly from us too. We transported her to a facility, that works well with Hospice, on Thursday last week. My father was planned to go to rehab in the same facility. They would finally be together after two weeks. We transported him on Saturday. My father got see my mother Saturday evening. She passed away Sunday morning. She is gone, from this earthly bond, but forever in our hearts and memories. (believe it or not I am lost of words, at this point) I have so much to say about my mother, but my emotions has scatters them up. I have so much to say about this horrible type of cancer, but my anger stops me. I will post them in a day or two, when my emotions are in better check. Have to get through planning my Mother’s memorial first. My mother was a big donor to different causes. In honor of her, we are requesting donations being sent to the Cholangiocarcinoma Foundation. Our battle may be over, but the fight to make a difference is not.
Oh God, I miss her tremendously!
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,
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.
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.
Emotionally Unstable Since Friday! (EUSF)
The Rambling Fourth Child! (TRFC)
You decide which or both!
My mother called this morning, Checking on my husband. He has out-patient knee surgery today. She was worried about how I was going to get him home. I told her, ‘not to worry, I have brothers, remember, Mom.’ ‘how well I remember, I gave birth to them and raised those wonderful monster,’ she said. She is always joking around. She was also worried about not being there for him today. Bless her heart. Mother’s will be mothers, worrying about eveybody else first, before themselves.
She is doing Great. Her first night home was good. She said, the pain was tolerable and has not taken any pain meds. Her doctors, told her yesterday, that there is a tummor on the right side of the liver. Very small. They would like to do radiation in about four weeks. Now she told us she would not do chemo, but she did. She told us, she would never to radiation, but she talked as if that was what she was going to do next. She continues to shock us. She just keep taking the next step and is listening to what the doctors are telling her to do. Which is great, they have the best influence over her, than we do. We just wait for her next decision and support her on her decisions. That is all we can do.
Oh get this, she said today was house cleaning day. Her and my sister are going to get a few things done. She is crazy! The real issue is this. She has been a smoker since she was a teenager. The doctors has advised her to stop. She didn’t stop, but has tried on several occassion in the past seven months. After this surgery, she said she was done. Yippee! Now she can’t stand the smell of the smoke in the house. That is the only thing, making her sick. So, she has to get rid of the smell. My sister said, she will start cleaning somethings today and tomorrow my sister and I are going for the overhaul. Whatever it takes to make Mom comfortable and happy, will happen. By the way, both my sister and I decided to quit smoking with her. All for one, one for all. Woo Hoo!
Well that’s my update, talk at you all later. Thanks for everybody being here for me and my family. It is a wonderful feeling, knowing you have people who care, standing beside you. Thank you for letting me part of your family, as well. I pray for everybody on this site, everyday. I am thankful to be here.
My Mother was released from the hospital this morning. Can you believe it? She is amazing. She has shocked us all. She has done such a remarkable job with her recovery at the hospital. We are so happy to have her home. Yippee!
Welcome and Tons of Hugs Your Way. I will be praying for your Dad and family. I am new here and you have come to the right places for support and help with your questions. I have recieve such encouragement, strength and knowledge from everybody here. I don’t have much knowledge on your Dad’s situation, but I can offer my prayers and hugs to you. Be strong and take of your yourself and your family.
All is Well! My Mother’s surgery went quite well. The surgerons were able to remove the gall bladder, the tumor on her bile duct and the left part of her liver. It took approxiately three hours for the surgery. My brother saw her doctor in the pre-op area after the surgery, actually dancing, before he came out to talk to us about the surgery. It was a very successful surgery. Great News! He was able to remove everything that he could see. The reality is, that of course, what he could see. He recommended, radiation by the bile duct, after her recovery. He did say, this surgery provided another year or two of life expectancy. Not so great of news, but the outlook is much better than, what we had before the surgery. Besides the way we figure it, her attitude is not something to be overlooked. Obviously, she is still in the Fighting Mode. Her only problem, she had was waking up from the surgery, so they kepted her on the ventilator, until the following morning. She wasn’t too happy about that or the feeding tube either. But they removed the feeding tube by Sunday. She is in a pre-op care room, since Monday night. She is tolerating the pain quite well. She has been on oral pain relief since yesterday and has only taken them at night and in the morning. She was able to walk the floor yesterday and is still on a full liquid diet. Should be able to have soft solids today. She has the nurses in stitches, on her floor. One nurse came in and asked her if she had a BM yet? My Mother looked at her and said, ‘No, but how can I poop an ice cube? Get me on solid foods and we’ll talk BM’s.’ So, of course, they keep coming in, asking the same question, just to hear the answer again. What a Hoot, she is. Her recovery is remarkable. Spirits are great. She is ready to go home, she says. They are talking about releasing her this Friday. She told the doctors, ‘don’t tell me a release date, then there are no false hopes.’ She had a sonogram on her legs yesterday and they are clear. By the way, her swelling in her legs is all but gone. Which she is very happy about. So, at the rate of her recovery, we should see her at home fairly soon. This is all great news and we are so proud of our Mom. Yes, we are!
Thanks to everybody for your warm wishes and prayers. The support system, here on this site is awesome. I truly appreciate it. Knowing the power of prayer, I know my Mother is in the greatest hands. I know this surgery is the best next step for my Mother. She is nervous and excited at the time. She just wants this surgery done and behind her. Can’t say I blame her. Her spirits are really high, so that is great. I’ll be posting on her progress, when I get a chance. Thanks again!
Here is my most recent concern about the surgery. I keep seeing you post long surgery and I have seen other post, saying this type of surgery is long, 6 to 8 hours long. The Dr. told my Mother, that it was going to take only two hours. Is this possible?
Dear Lainy and Teddy,
Thank you so much for lighting a candle for my Mother and your prayers. You both are so inspiring and I have found great encouragement from you both. You have to rememeber, I have been reading this site for months before posting. Your strength, endurances and helpful post, have been a comfort to me. Again, Thank You so Much!
I agree, this is the news we have been waiting for. We are happy and excited, just nervous about the procedure and recovery. My Sister, is moving in with my Mother, during the recovery after the surgery. She is the most Awesome person, I have ever met. Her and my Mother are very close. So, they are both comfortable with this arrangement. My Sister said, she is going to stay as long as it takes for my Mother’s recovery or until my Mother kicks her out. It gives us all a peace of mind, knowing that she staying with my Mother. Of coarse, I’ve been informed, that I will be her back-up for whatever my Sister or Mother needs. I feel helpless, but will do whatever they need, to make things easier for the both of them. They are my Heros!
PS: One more thing, that’s funny. When the Dr. told my Mother about the surgery, he did tell her , that there was a 2% to 3% chance she may not walk out. Those were his words. Well my Mother said to him. ‘What are you going to laim me?’ The Dr. just looked at her and then my Sister. My Sister said, ‘Think about it for a minuter Mom.’ Then she realized what they were talking about and turned to the Dr. and responded. ‘That’s it so not an option.’ What a Hoot, she is!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!!! ]
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.
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.
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!
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.
Marions, thanks for the link and I will do the search. My Mother is making the appointment today. So, not sure, until I talk with her later today.
Somebody told her to use those stocking you get in the hospital after surgery. She threw hers out. I have a pair, from when I had my gall bladder taken out this past October. Do you think this is a good idea? You use them after surgery to help from getting blood clots, but what about the swelling? Would the stocking, cut-off her circulation? I just don’t know? Let me know your thoughts. Thanks!
Gavin, thanks for the links. I googled contrasts and found a few more links. They are basically the same information. Helpful and informative. I appreciate your posting the above links.
Kimmie & Marions, thanks also for your insight and suggestions. I will most certainly pass them on to my Mother. Hopefully, she start feeling better with her leg pains.
I told her, that she needed to elevate her legs more often. She tends to sit at the kitchen table most of the day. I suggested, she use another chair or the very least a step stool to elevate her legs while sitting. She said, she would do so. Again, hoping this helps bring the swelling down a little faster. She did tell me, that the doctors wanst to do a Ultrasound on her legs, just to make sure there are no blood clots causing the swelling. She has this done, toward the end of this week.
Has anybody else, experienced swelling of the legs cause by blood clots? If so, what did they do to solve that issue? Just curious?