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lost my mom to AML treatment, please help.

ceesfire
Posts: 1
Joined: Dec 2005

I'm 23 years old. I lost my mom when I was 20 at midnight on August 10, 2003. I was there when she died and she did not die in a hospital thanks to hospice. But, she did suffer, more than I thought was humanly possible over a period of four years. She was diagnosed on July 4, 1999 the summer before my senior year in high school, when I was 16. She underwent brief chemo, and when it didn't work she got a bone marrow transplant from one of her 11 siblings. Despite the fact that she had 11 siblings this marrow was not a good match; it was a 5 out 6 match, not the ideal 6 out of 6. The transplant and radiation and chemo that mom received before it almost killed her. No one told us what this transplant might be like. During the year that followed I was her primary caretaker. The transplant ended up being hell on earth, literally. Her doctor even siad at one point that everything that could have gone wrong did. I have never seen or heard of such suffering. It should be a crime to put a human through this. I felt like we were part of a Nazi death camp experiment. She was treated by the VA. My sister, who had graduated high school the year before refused to care for our mother; she more or less ran away from home to avoid it. I am still mad at her for this. My maternal grandmother cared for my mom when I couldn't because of school; but she was diagnosed with lung cancer on March 17, 2000 and died July 17, 2000. My mother almost died because of the stress caused from her mother's death. I got an early glimpse into my own furture. I was 17. I went to college later that summer and I had to leave my mother's side. To this day i wonder if my absence shortened her life. I have two brothers and a sister and my father was there too, but no one else seemed to have time to care for her as I did. My mom was my best friend, but she grew apart from me when I was in college, even though she insisted that i go. During my freshmen year of college, my youngest brother was diagnosed with a heart condition and hospitalized several times. On Good Friday of my sophmore year, our house burnt down. It was the house that i grew up in. My father began an affair this year as well; I did not tell my mother becasue i did not want to hurt her. But, my dad brought the woman around me and my boyfriend (now my husband) and I did not know what to do. On some level I understood his need for support, but it was so wrong that he was doing this to my mom. the fall of my junior year, my mother found out about the affair. I told her that i had known, but did not know what to do about it. She was angry and very very sad, but still she clung to life. At this point in her treatment, she had already been at the point where the doctors told us they weren't sure she would make through the night, not once but twice. her unbreakable will, now seemed broken. She served my father with divorce papers with all of her cildren present in the room; the divorce could not have been messier. Mom needed financial support, my father did not want to give it. Mom was slipping. She was 44 when she was diagnosed, and she beautiful, healthy and very health concious, she looked young for her age. When she died at 48, she had aged 40 years in four years time. She was frail, hunched and wrinkled; scars from ports and bruises from weak skin and bloodthinners covered her once soft and smooth skin. her hair once red and shiny was now brittle and black when it grew in. She had suffered diabetes, kidney and liver failure, and CMV retinitis which caused partial blindness. At many times she was too weak to walk or even stand, and bloated beyond recognition by her very high doses of steriods. Her body was ravaged and raped by her "treatment." Not to mention the intense and horrible emotional trauma that she suffered. I still have nightmares about her suffering and her death to me seems like a blessing, so that she does not have to suffer anymore. Please help me deal with this. i just want to hear if anyone else has felt this way. Though I appear well adjusted and happy, I still think about this almost daily, even though it has been two years since she died. I'm trying to be at peace with it. Please help.

Ellen0629
Posts: 4
Joined: Dec 2005

Hello,
I am very sorry about your Mom. I just lost my Mom two weeks ago. She died on her birthday. She was only 49. My Mom found out she was sick in June. We didn't even have time to really fight it. Before she got sick my Mom was the bikini wearing Grandma. She was amazing, never looking or acting her age. She was always so self assured and independent. By the time she passed, she couldn't even brush her hair or put her teeth in. To walk a few steps was painful. We took her in to see another new doctor. He hospitalized her on the spot. I work nights and when I left she was sitting up watching t.v., talking, laughing. She had an attack in the middle of the night while I was at work. They put her in ICU. I went to check on her and found that she was stable so I left to try and get a little rest before heading back to the hospital then to work again. My sister called me 1 hour after I left. Mom had taken another turn for the worse. When I got there, they were back trying to drain fluid from around her heart. She passed while I waited to see her. My sister blamed herself but it was no one's fault. I'm at the stage now where it doesn't seem real. I still have dreams about her. Most of all, I feel so alone without her. She was all my sister and I had growing up. She was strong and beautiful. I miss her so much. I understand what your going through. If you ever need to just yell or get anything off your chest give me an email.
Ellen

Mylin
Posts: 7
Joined: Aug 2004

I completely understand a lot of what you are going through. I'm 30 now, but when I was 21 my mom was diagnosed with breast cancer. She was cancer free 2 years later and then in 2002 she was diagnosed with secondary cancer in her ribs. In summer of 2004 it spread to her liver, lungs and brain and she passed away in aug. of 2004. I was only her caregiver at the end, but I watched it all end. I have a reoccuring nightmare in which my mom is really bad off, but then gets better and then gets bad again. I'm grateful for the extra time in my dream, but hate losing her over and over again. I find talking about it and telling anyone who will listen to help. I am always available as well for you. My stepdad quickly found another woman as well and I feel that though it is WRONG I think it's to fill the void of the women they are losing or lost you know? Not a day goes by that I don't think about all she went though. It's normal to think about it. I recommend a book called "Motherless Daughters" you can find it on amazon.com. My mom read it when she lost her mom to cancer and then I did too. Not all sections apply to you exactly, but you will find solace in a lot of the testimonials finding out that your deep dark saddness and fears are felt by many. I feel so much better when I talk to others about it. But I daily wish to have my mama back. quick questions: Do you ever obsess that you too might have cancer? sometimes even a cold gets me into a panic.
melinda

AuthorUnknown
Posts: 1563
Joined: May 2006

Dear ceesfire,
I am so sorry for what happened to your mother and what you are going thru. If it is of any consolation to you, please know that your mother is in much better place right now with God, and she is not suffering any more and is free. My heart and prayers go out to you. I think that you really would benefit from grief counseling in your local area where you could meet face to face with other people and somebody who could professionally counsel you. I hope that your husband is supporting you. e-mail me any time if you feel like.

janet600
Posts: 1
Joined: Dec 2013

I just came across this thread even though it it now 2013. My sister was diagnosed with AML one year ago. I have no words to express the horror of what they are putting her through. I think her doctor could actually be classified as a serial killer with a license. I cannot believe what they have turned my sister into. She cannot walk or speak. she has no hair or eyelashes or eyebrows. She is anxious and cries and weeps all the time. And now they are myeoablating her entire system to ready her for a transplant. They are torturing her and I am feeling like doing something drastic to them. She has FLT3. They KNOW THAT WITH HER CYTOGENICS, A TRANSPLANT WONT HELP HER yet they still plow ahead on their money assembly line. I cannot believe this is legal. I do not know how these people sleep at night. I want to take her home and have her die in peace. They want to destroy any last shred of dignity that she has left. I thought the hippocratic oath that all doctors take says "DO NO HARM" That's the very first order of the business of being a doctor. They are doing a lot of harm. They are barbaric. And sick. And dangerous.

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