March 25, 2013 at 2:01 pm #68278
Hello Dear Dee. You mentioned telling Mom you love her everytime she opens her eyes and I want to say that open or not, she hears you, so Dee, say it as much as you want. These blood cultures can take up to 5 days for results, Teddy’s did but when I would take him to ER they would start the Levaquin immediately with an IV drip. In about 24 hours you could see the difference. But I am sure at this point they want to make sure that’s what it is. You never know how strong you are until “strong” is the only choice you have!March 25, 2013 at 12:33 pm #68277
Thank you very much for your kind words and I am sorry we share this sad connection. My mom has been bedridden for the past 9 week. She can walk, get up from the bed or even change sides and sleep. She has an infection which caused her platelets to drop and chemo had been suspended.Today, the doctors are again going to remove some bile collection. Apparently,her bilurubin levels are not that high but the stents that were put in earlier are probably working only partially. Her sodium/electrolyte levels have dropped so she has been drowsy and sleeps a lot. Sometimes, I think it is better that way since at least she is not in pain. Tomorrow, they are planning to do an ERCP again and clean the stents thoroughly and if needed put plastic stents on top of the metal stents. I am scared because they are calling it a high risk procedure since administering anesthesia when she is already drowsy would be difficult.
I am so very scared of hope right now because each time things start turning up, something goes so badly wrong. I know what you mean, Desiree, I am crying to while typing this to you and when I read your posts.
You are right, God was kind in a way he did not make your mom suffer. I know I can’t control anything that happens but I just hope that if He wants to take her away,I just don’t want her to be in pain.
I know your mom is looking down upon you from heaven and smiling. She will always be there in you, live through you and see the world from your eyes. I know her birthday will be hard but try to celebrate it like you always did, maybe it might be comforting to feel like she is always there.
I dropped everything and flew back home and have been by my mom’s side since.I know what you mean by being by her side. She doesn’t speak but whenever she opens her eyes, I try to whisper “I love you mom” and she sometimes replies. I know those are the moments I am going to cherish for the rest of my life.
I can’t see her in pain, Desiree.It scares me out of my mind. I feel like running away and hiding in a corner of the planet that no one can find me ever. I can’t imagine life without her. Sometimes, I think it will be ok, but when I think I won’t see her again or hear her voice again, it scares me so much. I hope someday we can at least take her home. God bless you too Desiree and please do feel free to write to me too.
DeeMarch 24, 2013 at 8:55 pm #68276
Thank you so much for your support and I’m so sorry that your mother has CC. It was horrible seeing my mother all yellow from head to toe and the left side of her face deformed because the cancer jumped behind her eye and jaw. This caused her to have severe headaches but at the end she had no pain but needed two people to help her walk to the bathroom and back, loss of hearing in one ear, double vision in the left eye where the cancer was, not eating or drinking. It was the most devastating event of my life. I cry every day and really want my mother back, but at the same time, I don’t want her to be in pain and on Life Support, like she was the last 2 days of her life. She’s in heaven now and she promised me that she was keeping a spot right next to her for me when I pass away. I believe in the “After Life.”
She was 83 years old and tomorrow is her birthday She would have been 84. It’s going to be hard for me.
The worst thing in the world is to loose your mother. CC is a monster cancer and yes it does kill one’s soul. She was my “world” and I loved her more than anything and anyone in the world. I miss my mother’s voice every morning on the phone as we would talk no matter where we were, and I miss her emotional support and her love for me. It’s so hard on me and sometimes I can’t believe it. I’m crying right now just typing this to you.
Oh Jesus, I know that he took her life in 8 weeks because he didn’t want her to suffer any more. My mother did say that it was about the “quality of life.” My mother still had her mind till the very last day. She was the kindest mother and friend in my world.
Dee all I can wish for is that you spend some quality time with your mother. I didn’t realize that my mother was going to pass away until the day before, but then it was too late. That’s still bothers me.
Feel free to write me any time Dee. Please let me know how your mother is feeling.
God bless you.
How’s your mother?March 22, 2013 at 1:18 pm #68275
Thank you again, Lainy. Your words give me comfort. I read posts from a lot of people on these discussion boards, and I can imagine how difficult and strong they must be.
I haven’t seen God but I know my parents especially my mom. Sometimes, the child inside me hopes that doctor will come and tell me she is ok. She will smile at me and tell me “Baby, lets go home !”. She doesn’t recognize me today, doesn’t talk, doesn’t smile. But I know I have to be strong.
I spoke to the doctor again today and he mentioned that they are waiting for a few more culture reports to adjust her antibiotics and if needed they might do an ERCP again, since it looks like the stents are not working. At least her platelet count looks ok and I hope they improve, so even if they have to do it they can. This illness just doesn’t destroy your body, it kills your soul.
Thank you again Lainy for your kind words and my deepest respect to all those brave ones who are fighting this dreadful disease. I hope we can all find that much sought peace that we so desperately are looking for.March 21, 2013 at 4:40 pm #68274
Dee, from what I understand the ONCs are pretty much with it when it comes to CC in India. We don’t know the why’s of who gets it but I can tell you this, we have the most courageous people in the world right here on this Site.
The way you speak of your Mom, I think there is no better proof of what an Angel she is. I think your family needs to give you some time to wrap your head around this, it is so very much to take in. Please trust me, you will make it through and one day you will be just fine. Maybe there is no how and why, just that we were chosen because something beyond our power knew we could handle it. Remember you are still new to this.
Dee, you already had the best teacher in the world showing you by example how to be a wife and mother! When you become a Mother you will remember that you were already taught by the best.
Cll me crazy, I certainly have no Medical training, but I think a lot of this is from the infection/ they can be brutal. Now my favorite term, BE STRONG!March 21, 2013 at 4:06 pm #68273
Thank you for replying, Lainy. I read these posts and I know there are many hearts in pain, maybe greater than mine. Sad as it is, I know I am not alone.
I have a loving family too, my dad, husband and brother are very supportive, but I don’t know why, it still feels like they have come to terms with it. I don’t know if I ever will.
Warriors like your husband and my mom are one of a kind. I know faith is supposed to stand strong no matter what, but there are so many things which keep playing in my head. Earlier, when my mom was in pain she would at least, groan and talk about it, now I see her just quiver sometimes, I don’t even know whether she is in pain or has to strength to scream. I try asking her and she just nods her head saying no, but I think she doesn’t want us to hear our scream. She is trying to protect me even now like she always has. I think about facts – she exercised everyday, did yoga, ate healthy, did not smoke or drink. I don’t get it. Yes, there could be a million other reasons to cause this illness but they all seem like freak accidents. We have never seen the inside of a hospital ever before in my life. Nothing makes sense any more. My brother keeps telling me, like you said, maybe God has a plan. He probably does, I don’t know. I just feel betrayed. My husband keeps telling me, it could have been worse. I keep thinking it could have been better too. There are so many things I still have to learn from her, about being a mom, a wife, a woman.
I still have to learn more about this infection from the doctor more. They still need to run some tests on the fluid which looked like puss and bile that they extracted today. My only concern is, that the infection is probably hampering her platelet count which has suspended chemo. Chemo seems like being more secondary now probably even if she was in a state where she could at least resume life, where we could go home, she could move around, talk, not be in as much pain, I could make some pace.
I work in Virginia, Lainy but my family is in India and my mom is being treated here in India as well. The oncologist gave her the first drug of her first round of chemo last week on Monday – Gemicite. She was doing ok till her platelet count started dropping later last week. She was due for her second drug – Oxyplatin this Monday, but like you said her counts were not upto the mark which is due to the infection so the doctors did not want to do it.
I am trying hard Lainy, to stay functional for her. I have good people at home and work, but suddenly my life has lost its meaning. We all think about tomorrow – maybe little things like doing groceries to bigger ones like buying a house. I have always prayed for my family. To be able to take care of them. My mom just did not give me birth she gave me a life. Everything I have today, is because of her. She has lived a very tough life, right from her childhood. We deserved happiness, she deserved peace and happiness, at least at this age. Thank you for contributing to these posts. I just spend some time reading and hard as it is, it is comforting to know, that its just not me.March 21, 2013 at 3:19 pm #68272
Dee, you are not alone, you have a ton of “family” right here.
Everyone on this Board has taken this journey and somehow we just make it through. I think we make it as that is what our loved ones want. My husband was Catholic and I had never seen the amazing way his belief got him through. I feel your Mom is the same way with her beliefs. They have this ability to seek an inner peace and actually do their own kind of prep work and when the time comes they are ready, ready without any fear at all. Like you I am more spiritual but feel there is a God and he does listen. Other times he has a plan but doesn’t need to ask our permission. My Grandson once asked me why God kills people and I said God doesn’t kill, people do. I tend to think the same with illness. It is something in the environment or the body itself and God has nothing to do with it. I am so sorry that Mom’s journey is such a nightmare and I do hope they have her pain under control.
Dee, many of our Caretakers ask their Doctors for something to get them through this. Even a little something to take the edge off. Doesn’t mean we are not heros in our own right.
Infections with stents goes with the territory but there are some great antibiotics that work quickly. Teddy used to get the infection 2 X a year and the hospital knew to put him right on an IV of Levaquin.
May I ask where Mom is being treated and what chemo she is on. I just have a funny feeling that infection could be the root here or the ONC would not want to start Chemo.
Dee, I hope you talk to your Doctor as it is not accomplishing a thing to be beating yourself up like this. You need your good energy to get through this nightmare of a monster journey. We all know how you are feeling and we are all here for you. Please feel free to email me anytime!March 21, 2013 at 2:02 pm #68271
I can understand every word you are saying. 8 weeks ago my mom was diagnosed with advanced stages of cholangiocarcinoma.
I live overseas too and I know how much I look forward to seeing my family every time I visit home. When the doctors told me she had cancer, I thought they were kidding. My mom is only 56 years old. All her she life she did 2 things – take care of her family and pray. She is the best and the most honest person I know. She had hyper-acidity and pain in her head when I visited home in January, 2013. We used to talk everyday for hours, no matter where I was. But since the latter half of December 2012 she couldn’t speak to me too much. I knew she wanted to but she couldn’t. I felt my gut saying something was wrong but I did not think it to be cancer.
We got her admitted into a hospital in Jan 2013, where she got her ERCP done and the metal stents helped bring down the obstructive jaundice. I stayed with her day and night, trying to take care of her to the best of my ability. At that time, she could still talk frequently and move about. The doctors told me that there was nothing that could be done, wished me luck and we were discharged after 2 weeks. We spent a week at home but then she started complaining of pain in her abdomen. We took her to a different hospital and they admitted her into the ICU because she had breathing difficulty. It has been more than a month now.
Every day is a nightmare one after the other. If we overcome the breathing problem, then her sodium levels drop and she goes into a drowsy spell. When we did overcome that, the oncologist gave her the first drug of her chemo and just early this week when she was due for the second drug, they found her platelet count has dropped and she has developed an infection where the stents were earlier put and today they removed some bile deposit as well.
I have been working nights to keep my job and taking care of her during the day. Sometimes, I feel like crying so hard till my heart finally stops. She is my best friend – my only true friend. We used to sing, dance, watch movies and yap a lot, today she stares into the blank space, looks at me with empty, hopeless eyes. Every day I hold her hand and murmur in my heart – “Mom you don’t have permission to leave. I love you so much. I need you, I want you”. But I can’t see her like that anymore. A part of me dies everyday, each time I step into the hospital. Things look good momentarily and then suddenly all hell breaks loose.
I was never religious but I liked to think of myself as a spiritual person. I don’t get it – Why us, Why her? If there is a God he does not have a heart. She taught me how to love God not fear him. Even today she prays – I know I am supposed to too. I can’t. I am angry, I have a lot of questions but there are no answers. The doctors have withheld her chemo since this week and everyday the doctor steps into the room my heart just stops. I got married a year ago, on this very day that I am writing to you. Memories keep playing into my head too. I can’t sleep I can’t smile. I wake up screaming at nights sometimes. Sometimes, I wish I stopped breathing and could just go away with her. I know I am supposed to be strong for my family but I am human. I can imagine what you feel like. Everyday I think may be today is the day. Sometimes, I think the doctors are all nuts, they misdiagnosed everything and we will get to go home and will have her life back. My mom is one of the most health conscious people I know – this does not make sense. Hope keeps draining everyday and with my mom I keep letting go of God too. I am lost but I can’t see my mom, my baby like that any more. Maybe I am selfish and am being punished for not taking care of her enough. But I know how you feel. I know how it feels like when your friends don’t get it, they can’t. Unless you have suffered through this, no one can. I wish I could give you a hug and cry, but from the bottom of my heart I can only say this, I understand.
DeeJanuary 11, 2013 at 5:21 pm #68268darlaParticipant
I agree with you that everyone grieves in their own way and time and only you can know what that is. I feel your pain and know what you are going through and unfortunately no one can do it for you. I am so sorry for your loss and the pain and confusion you are now going through, but only you know what is right for you.
Try to take some comfort in knowing that your mom is no longer in pain or suffering and has gone on to a better place. It is hardest on those of us left behind. Keep her forever in your thoughts and memories and talk to her all you want. I’m sure she hears you even now. Also keep coming here and talking things out or even just to vent when you need to.
Thinking of you.
Love & Hugs,
DarlaJanuary 11, 2013 at 5:03 pm #68267pamelaParticipant
I think you are so right that everyone grieves in their own way. You don’t have to do anything you don’t want to. Your friends are probably suggesting a grief counselor because they are trying to help. It might be too much for them to handle and they want you to talk it out with someone trained to help you understand your feelings. We are here for you so you can come and talk about your Mom, vent, and just let it all out. I am sorry for your pain.January 11, 2013 at 2:25 pm #68266
Everyone has their own way of grieving. I don’t like to hear that I have to go to a grief counselor like most of my friends are suggesting. I feel like it’s either too heavy for them to hear or they’re tired of hearng it. In a grief book that I’m reading, it says to talk about it as much as you want to.January 11, 2013 at 2:19 am #68265pamelaParticipant
Your post is so heartwrenching. I am so sorry to hear of your mother’s passing. I think it is normal to be in a state of shock and cry a great deal of the time when you lose someone you love. It has only been 6 weeks and everyone grieves at their own pace. If in time you feel you need help, maybe talking to a therapist or grief counselor might help. I hope your pain fades and is replaced by wonderful memories of your mom. Be easy on yourself.
Love and hugs,
-PamJanuary 11, 2013 at 12:22 am #7839
I am devasted by the loss of my mother on November 29, 2012. Instead of Christmas cards, I received Sympathy cards. I personally didn’t celebrate Christmas in 2012.
My mother lived overseas and therefore I could only see her every 2 years. Well in 2012 I was suppose to see my mother in October after my cousins and aunt visited her. On my birthday, Sept 30th, my mother age 83 1/2 all of a sudden had double vision and was rushed to the hospital. She was eventualy diagnosed with advanced and aggressive Bile Duct Cancer. She however, improved and was no longer yellow and was released from the hospital only to return a week later with excrutating pain on the right side of her abdomen and her back. The right side of her face was deformed because the cancer had jumped behind her right eyeball which shut it and caused a lot of pain. The right side of her mouth was immobile and it wasn’t because of a stroke or anything like that. I was fortunate to see her 4 days before she passed.
I spent the first 2 nights with her in the hospital and she was so quiet and only spoke when spoken too. When I asked her if she was interested in hearing some music, her repsonse was that she wasn’t interested in anuthing, which was so unsual but it was because she was so sick. She was surprised that I didn’t comment on her looks but I responded that I expected it. It was a terrible sight but I still had hope that she would pul through this, until she said on both days “I know I’m not not going to get well.”
The 3rd night my cousin stayed with her she was rushed to the ICU early the next morning. When I saw her in ICU, she had internal bleeding in her stomach which was being drained out through a tube from her nose. It was a horrible sight!! However, she could still talk and I told her that I loved her very much in which she responded the same thing back to me. I was only allowed to stay with her for one hour which really upset me. The next day, during my one hour visit, she was worst and intubated and I was extermely upset as I knew this was the end of the line. The good thing was she still had her mind. She wrote on a piece of paper (which was hard to read) “Take me home if you love me.” I told her that I would ask her doctor but knew deep down that she couldn’t be transferred home. I kissed her forhead which she was are of and again I told her that I loved her so much.She was breathing really deeply and I knew how sensitive she was because my body is the same way.
The last day she was alive, the ICU called saying that we needed to come right away because they had to revive her once already and didn’t know if she would make it. ON the way there, I had a feeling that I would not see her alive, which was exactly what happened. She died.
I was devastated beyound belief. I wanted to die. She was the only one I had because my 2 cousins turned against me after that, without going into details for now.
I buried my mother and have been in shoch ever since. People don’t understand my grief and all I’ve been doing is staying home. I enlarged some pictured of my mother from 2 years ago, framed it and hung them on the wall right in front of my computer. I speak to her every morning but miss her so much and can’t stop crying. I’m the only child. I’m hurting so badly even after 6 weeks.
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