christine4

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!
Christine

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!

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!

Christine

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!

Lainy,
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?

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.

Christine

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

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?

Christine