The miracle wasn't a miracle after all

Grandma Jo
Grandma Jo Member Posts: 36
in Esophageal Cancer #1
Good evening to all the wonderful brave people on this board. My life has been turned upside down again. The reading of the CT scan of November was a so called miracle to us. It showed that the liver spots had disappeared and the cancer was holding .They said it was an unexplainable event. We were so happy to have a little time to catch our breath we went ahead and had a special holiday . My daughter gained ten pounds and was able to eat small amounts of food and drink liquid. Then it all began : the food would only go so far and seem to stop , she would feel sick to her stomach and shortly after throw up the food almost the way it went down. The pain in her back was unbearable. We went to the oncologist where they put on a patch for her sick stomach, a pain patch for her back,morphine and 2 bags of water or fluid as she was dehydrated. All of this did not touch the pain. She had a CT scan with red dye ,could not take the barrium swallow liquid as she just kept throwing it up. So they did the test without the liquid and saw all the cancer in her abdomen. The test in November she drank the whole bottle and they saw no liver cancer . It just does not add up. The results of the latest test were we had to have the water drawn off , it amounted to 2700 liters . She vomited a liter off beforehand. We met with the oncologist the next day the results of this CT scan showed fluid , liver disease and stomach involvement now very substantial. They think the November test was misread. She has been vomiting for days and now we are trying to get into a gastro in Boston to see if there is a blockage in the area where the esophagus and the stomach meet. That is where she feels the pain. We all feel as if we have been kicked in the stomach right now. If anyone has any suggestions or has had this vomiting experience please post to us.
William you and I should have gone over to the office and checked the machine as we talked about. Someone did not do their job correctly and that is very sad.
I feel like my head could explode right now. She is in such pain and so hungry she hasnt kept food down for a week. This is such a torture for me to watch this. She stayed up all night with her son and then went to a full time job . Did not want to call me to drive up and help her last night. Thanks for being here my cyber friends I feel as if I can post this and you will understand what I am going through right now. Kind regards, Grandma Jo

Comments

  • oriontj
    oriontj Member Posts: 375
    #2
    Oh no....
    I couldn't believe this when I read it. I'm like you...I can't understand how it could happen...someone messed up and now this. We have to do the scans at the u of c...not allowed to do them locally..same machine...but if someone misreads them...what do you do?

    Please know I am praying for your daughter and will light a candle for her...

    I hate cancer and especially this one.

    jan
  • Grandma Jo
    Grandma Jo Member Posts: 36
    #3
    oriontj said:

    Oh no....
    I couldn't believe this when I read it. I'm like you...I can't understand how it could happen...someone messed up and now this. We have to do the scans at the u of c...not allowed to do them locally..same machine...but if someone misreads them...what do you do?

    Please know I am praying for your daughter and will light a candle for her...

    I hate cancer and especially this one.

    jan

    Thank you for thinking of us with prayer
    Thank you so much jan for thinking of us with your prayers . I see you joined in July of 2009 . My daughter was diagnosed in June of 2009 and it has been a hell for all of us. She had never been sick a day in her life and a very energetic person. She has a son that has end stage renal disease and a seizure disorder so my husband and I have always been close and supportive since day one of her son's birth 28 years ago. We do six dialysis exchanges a day to keep him alive and we have managed to cook a special diet and learn to do the dialysis and the Davita clinic says he is the star patient. I will still keep praying for a miracle to the very end One must never lose faith. Kind regards Grandma Jo
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
    #4
    Grandma Jo said:

    Thank you for thinking of us with prayer
    Thank you so much jan for thinking of us with your prayers . I see you joined in July of 2009 . My daughter was diagnosed in June of 2009 and it has been a hell for all of us. She had never been sick a day in her life and a very energetic person. She has a son that has end stage renal disease and a seizure disorder so my husband and I have always been close and supportive since day one of her son's birth 28 years ago. We do six dialysis exchanges a day to keep him alive and we have managed to cook a special diet and learn to do the dialysis and the Davita clinic says he is the star patient. I will still keep praying for a miracle to the very end One must never lose faith. Kind regards Grandma Jo

    My Prayers
    Grandma Jo -
    Dear Lord, please watch over Jo's daughter and grandson. Please give the whole family the strength that they need to get through the next stage of this difficult journey. I pray for relief of the pain her daughter is enduring. Guide them in the right path and stay by their side. I ask you Lord to be gentle with this family for they have struggled and suffered enough. Amen.
  • paul61
    paul61 Member Posts: 1,392 Member
    #5
    How could this happen????
    Grandma Jo,

    I am so sorry to hear about this latest development for your daughter. It makes me wonder how something like this could happen.

    I will be praying that God helps her medical team evaluate the current symptoms and defines an approach to give her relief.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Donna70
    Donna70 Member Posts: 852 Member
    #6
    paul61 said:

    How could this happen????
    Grandma Jo,

    I am so sorry to hear about this latest development for your daughter. It makes me wonder how something like this could happen.

    I will be praying that God helps her medical team evaluate the current symptoms and defines an approach to give her relief.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!

    just stunned
    Dear Grandma Jo,
    I just am stunned that something this important can be misread. My heart breaks for you and your family and especially your daughter. With your grandson being so sick, this is just too much for one family to bear. Does your daughter have a j tube? she needs nutrition and I can't feature how she is going to work during all this. I don't know what to do about such vomiting. I had vomiting after meals but still was able to keep 2 out of 3 meals down but I also was helped by a j tube after surgery for 3 months. My prayers are with you and your family. You all sound like the bravest people I know. take care,
    Donna70
  • sandy1943
    sandy1943 Member Posts: 824
    #7
    Hi, My heart goes out to you
    Hi, My heart goes out to you and your daughter. We have the test and expect the results to be read accurately. How sad that somebody could be careless enough to not see their mistake. Machines can only do so much. Humans have to do the interprating.
    I never experienced vomiting, so can't offer any advice to help her. I pray she can get releif soon.
    My prayers are with Your daughter and grandson. This has to be very difficult for you all. We are all here to give you support in any way we can.
    I pray for God to give you all, the strength to face what each day brings,
    Sandra
  • Grandma Jo
    Grandma Jo Member Posts: 36
    #8
    sandy1943 said:

    Hi, My heart goes out to you
    Hi, My heart goes out to you and your daughter. We have the test and expect the results to be read accurately. How sad that somebody could be careless enough to not see their mistake. Machines can only do so much. Humans have to do the interprating.
    I never experienced vomiting, so can't offer any advice to help her. I pray she can get releif soon.
    My prayers are with Your daughter and grandson. This has to be very difficult for you all. We are all here to give you support in any way we can.
    I pray for God to give you all, the strength to face what each day brings,
    Sandra

    thank you for your prayers and support
    Last night she tried to eat and is still vomiting the food . She has been able to sip on spoons of water and it stays down. She has pain still so took oxycotin and has the fenatol patch and nausea patch.I am afraid that she will become dehydrated and we have been down that path already last fall. I called this morning and she had already left for work and was putting a board packet together for her employer. I am packing a large suitcase this weekend. We go every weekend and stay until Monday helping out with her son and anything else we can do. My fear is she will lose important vitamins and minerals from not eating and that is a whole trying scene in itself. I can not thank you all enough Susie,Paul,Sandy , Jan and Donna who has helped me through with so much information. Just knowing this board has my back helps me a great deal. There is so much to think of and so many decisions to make I need all the help and prayers you send to me. Thanks again Grandma Jo
  • dwhite0002
    dwhite0002 Member Posts: 126 Member
    #9
    Grandma Jo said:

    thank you for your prayers and support
    Last night she tried to eat and is still vomiting the food . She has been able to sip on spoons of water and it stays down. She has pain still so took oxycotin and has the fenatol patch and nausea patch.I am afraid that she will become dehydrated and we have been down that path already last fall. I called this morning and she had already left for work and was putting a board packet together for her employer. I am packing a large suitcase this weekend. We go every weekend and stay until Monday helping out with her son and anything else we can do. My fear is she will lose important vitamins and minerals from not eating and that is a whole trying scene in itself. I can not thank you all enough Susie,Paul,Sandy , Jan and Donna who has helped me through with so much information. Just knowing this board has my back helps me a great deal. There is so much to think of and so many decisions to make I need all the help and prayers you send to me. Thanks again Grandma Jo

    I will pray for her, as
    I will pray for her, as well.
  • sal314
    sal314 Member Posts: 599 Member
    #10
    I stll Think God Gave You A Miracle
    You were able to have a "special holiday" with your daughter. I know it's not as long-lived as you would have liked, but he did give you that special time to make and keep those memories.

    I don't know if the doctor's read the reports wrong or not. My dad had a similar situation in that everything was stable and not getting out of control, a month later things just exploded on him. His doctor explained that all can very well change that fast, as cancer cells multiply so rapidly and there is no way to know how much cancer is truly running through the body at any given time. You can go from stable to major problems very quickly. Unfortunately, that's the nature of the "beast" called cancer.

    My thoughts and prayers are with you and your daughter. I pray they can control her nausea and pain. We were told by an ICU nurse when my dad was being treated that many times oral and pain patches aren't strong enough to control pain. My dad was on 4 or 5 different pain meds and a patch for his pain in the end and it did nothing but make him a zombie. Once they started IV pain meds, his pain was gone! You may want to ask the doctor about that. I think we would have tried that much earlier in the game had we known to ask about that as an option.

    Blessing,
    Sally
  • stepmj
    stepmj Member Posts: 32
    #11
    Grandma Jo said:

    thank you for your prayers and support
    Last night she tried to eat and is still vomiting the food . She has been able to sip on spoons of water and it stays down. She has pain still so took oxycotin and has the fenatol patch and nausea patch.I am afraid that she will become dehydrated and we have been down that path already last fall. I called this morning and she had already left for work and was putting a board packet together for her employer. I am packing a large suitcase this weekend. We go every weekend and stay until Monday helping out with her son and anything else we can do. My fear is she will lose important vitamins and minerals from not eating and that is a whole trying scene in itself. I can not thank you all enough Susie,Paul,Sandy , Jan and Donna who has helped me through with so much information. Just knowing this board has my back helps me a great deal. There is so much to think of and so many decisions to make I need all the help and prayers you send to me. Thanks again Grandma Jo

    Patches
    Hi Grandma Jo
    Although I read regularly, I don't post often. But when you mentioned the nausea patch I have to share some insight from the hospice nurse who cared for my Dad(EC Stage IVb). She said that the patches require “fatty tissue” to deliver the medicine. My Dad was so thin that the patches were not actually able to deliver the medicine and that is why they were not effective for him. What WAS effective was the dissolving Zofran tablets if taken before trying to eat.
    I am so, so sorry for the situation your family is in – it is truly unbelievable and so disturbing. I will keep your family in my prayers.
    MaryJo
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #13
    Grandma Jo said:

    thank you for your prayers and support
    Last night she tried to eat and is still vomiting the food . She has been able to sip on spoons of water and it stays down. She has pain still so took oxycotin and has the fenatol patch and nausea patch.I am afraid that she will become dehydrated and we have been down that path already last fall. I called this morning and she had already left for work and was putting a board packet together for her employer. I am packing a large suitcase this weekend. We go every weekend and stay until Monday helping out with her son and anything else we can do. My fear is she will lose important vitamins and minerals from not eating and that is a whole trying scene in itself. I can not thank you all enough Susie,Paul,Sandy , Jan and Donna who has helped me through with so much information. Just knowing this board has my back helps me a great deal. There is so much to think of and so many decisions to make I need all the help and prayers you send to me. Thanks again Grandma Jo

    Dear Grandma Jo
    Dear Heavenly Father please give Grandma Jo and her daughter the strength that they both need at this difficult time. Please give them some peace. Be with them, as you always are. Bring them to the place they need to be, to get the answers they desperately need. In Jesus' name, Amen. She must be admitted into a hospital immediately! She will dehydrate and her body will shut down.I would suggest she get a jtube in now. She also may do better getting her pain meds through an IV. Obviously the patches are not working. Sounds like the cancer is in her stomach and esophagus. How in the world is she still working? God bless her, you and your family.
    We are thinking and praying for you. Keep in touch.
    Tina in VA
  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #14
    So sorry
    So very, very sorry that this has happened to you all! We are praying for strength for you and for your loved ones. May he bless you, and give you peace in your heart at a time when it seems there can be no peace! no one can see how something so serious could have been missed, but we do just have to believe that things happen for a reason. Maybe that was Gods way of giving you some great days with your family! We are all prYing for strength for you!
  • linda1120
    linda1120 Member Posts: 389
    #15
    Grandma Jo said:

    thank you for your prayers and support
    Last night she tried to eat and is still vomiting the food . She has been able to sip on spoons of water and it stays down. She has pain still so took oxycotin and has the fenatol patch and nausea patch.I am afraid that she will become dehydrated and we have been down that path already last fall. I called this morning and she had already left for work and was putting a board packet together for her employer. I am packing a large suitcase this weekend. We go every weekend and stay until Monday helping out with her son and anything else we can do. My fear is she will lose important vitamins and minerals from not eating and that is a whole trying scene in itself. I can not thank you all enough Susie,Paul,Sandy , Jan and Donna who has helped me through with so much information. Just knowing this board has my back helps me a great deal. There is so much to think of and so many decisions to make I need all the help and prayers you send to me. Thanks again Grandma Jo

    Prayers
    Dear Grandma Jo,

    I am praying for you,your daughter, and the entire family. I am sorry you are going through this. It must be so painful to see your child suffering so. Know that we are there with you in spirit and in prayer.

    Linda
  • Grandma Jo
    Grandma Jo Member Posts: 36
    #16
    mlbrooks852 said:

    So sorry
    So very, very sorry that this has happened to you all! We are praying for strength for you and for your loved ones. May he bless you, and give you peace in your heart at a time when it seems there can be no peace! no one can see how something so serious could have been missed, but we do just have to believe that things happen for a reason. Maybe that was Gods way of giving you some great days with your family! We are all prYing for strength for you!

    The miracle wasn't a miracle after all or was it?
    Good afternoon to all my cyber friends here. I have just come home from a weekend at my daughters home and half day at a Yale physicians office for my grandson . Thank you so very much for the beautiful and meaningful prayers you offered up for our family. I honestly felt so tired and sad but a peace has settled over me to boost my strength , ability to comfort and make good decisions. My daughter was at peace last night just listening to music and quietly visiting with her family. I massaged her feet to make her comfortable and we talked about all the many places we have been and people we have met along the way as we traveled together from hospital to hospital with her son over the years. We always stopped at a little gift shop and bought a trinket to boost our spirits we would say. Your prayers are with me now helping me cope and ease my daughters pain. I thank you for the ideas of j tube for nutrition, pain meds through the IV ,the noting that the body needs the fatty tissue for the patches for pain and nausea to work,there is not one once of fatty tissue on her body. .Sherri thank you for taking the time to post and suggest that maybe the cancer just exploded in that short time and it was not a bad reading by someone. What a kind person you are to take the time in all your sorrow of Jims passing to help me to feel better , that perhaps it wasn't a human error but the beast of cancer rearing its ugly head and moving in warp speed. You restored my faith in the people we must rely on for information. A warm thank you to all of you that gave me another way of looking on our miracle. Yes maybe it was a small moment in time we were granted to make those memories that will be cherished forever. Maybe that was the miracle that we would be together in peace enjoying the holiday not that the cancer would be gone . Thank you my dear friends for a helping hand. Kind regards, Grandma Jo
  • sal314
    sal314 Member Posts: 599 Member
    #17
    Grandma Jo said:

    The miracle wasn't a miracle after all or was it?
    Good afternoon to all my cyber friends here. I have just come home from a weekend at my daughters home and half day at a Yale physicians office for my grandson . Thank you so very much for the beautiful and meaningful prayers you offered up for our family. I honestly felt so tired and sad but a peace has settled over me to boost my strength , ability to comfort and make good decisions. My daughter was at peace last night just listening to music and quietly visiting with her family. I massaged her feet to make her comfortable and we talked about all the many places we have been and people we have met along the way as we traveled together from hospital to hospital with her son over the years. We always stopped at a little gift shop and bought a trinket to boost our spirits we would say. Your prayers are with me now helping me cope and ease my daughters pain. I thank you for the ideas of j tube for nutrition, pain meds through the IV ,the noting that the body needs the fatty tissue for the patches for pain and nausea to work,there is not one once of fatty tissue on her body. .Sherri thank you for taking the time to post and suggest that maybe the cancer just exploded in that short time and it was not a bad reading by someone. What a kind person you are to take the time in all your sorrow of Jims passing to help me to feel better , that perhaps it wasn't a human error but the beast of cancer rearing its ugly head and moving in warp speed. You restored my faith in the people we must rely on for information. A warm thank you to all of you that gave me another way of looking on our miracle. Yes maybe it was a small moment in time we were granted to make those memories that will be cherished forever. Maybe that was the miracle that we would be together in peace enjoying the holiday not that the cancer would be gone . Thank you my dear friends for a helping hand. Kind regards, Grandma Jo

    Continuing to Pray
    for you and your daughter. Though it is a hard road, God can and will give you the peace and strength to get through it. All you can do is love your daughter and cherish being with her however long that may be. I'm glad she is at peace and comfortable.

    Blessings,
    Sally
  • 3Mana
    3Mana Member Posts: 811
    #18
    Grandma Jo said:

    The miracle wasn't a miracle after all or was it?
    Good afternoon to all my cyber friends here. I have just come home from a weekend at my daughters home and half day at a Yale physicians office for my grandson . Thank you so very much for the beautiful and meaningful prayers you offered up for our family. I honestly felt so tired and sad but a peace has settled over me to boost my strength , ability to comfort and make good decisions. My daughter was at peace last night just listening to music and quietly visiting with her family. I massaged her feet to make her comfortable and we talked about all the many places we have been and people we have met along the way as we traveled together from hospital to hospital with her son over the years. We always stopped at a little gift shop and bought a trinket to boost our spirits we would say. Your prayers are with me now helping me cope and ease my daughters pain. I thank you for the ideas of j tube for nutrition, pain meds through the IV ,the noting that the body needs the fatty tissue for the patches for pain and nausea to work,there is not one once of fatty tissue on her body. .Sherri thank you for taking the time to post and suggest that maybe the cancer just exploded in that short time and it was not a bad reading by someone. What a kind person you are to take the time in all your sorrow of Jims passing to help me to feel better , that perhaps it wasn't a human error but the beast of cancer rearing its ugly head and moving in warp speed. You restored my faith in the people we must rely on for information. A warm thank you to all of you that gave me another way of looking on our miracle. Yes maybe it was a small moment in time we were granted to make those memories that will be cherished forever. Maybe that was the miracle that we would be together in peace enjoying the holiday not that the cancer would be gone . Thank you my dear friends for a helping hand. Kind regards, Grandma Jo

    Thinking of you
    Grandma Jo,
    I'm so sorry that you're going through this with your daughter. It has to be so very hard to watch your child suffer. I hope you cherish every day you have with her. You sound like a great mother. Cancer is such a horrible disease and it can change your life overnight.
    I lost my husband of 46 years last March 25th. I can hardly believe it's almost a year since I held him in my arms.
    He had been diagnosed in January with lung cancer & lesions in his brain & spine. He had 2 weeks of radiation to his brain & spine which showed good results. Then he had his first chemo treatment with 3 chemos one of which was Avastin. He started coughing up blood before his next treatment, so they did a CT scan and said things looked good, but his next chemo would be minus the Avastin. Well it was too late. The damage from Avastin had already been done and he hemmorraged in the bathroom one night. It was traumatic & I couldn't do anything except call 911. They worked on him for 45 min. but it was too late. I question the Avastin because on the info it said "can be a RARE side effect--hemmorraging. Since it did say rare, guess we had faith that it wouldn't happen. But it did!
    Sorry I'm rambling. Please be strong and give your daughter a hug for me, okay?
    Friends, Carole
  • Grandma Jo
    Grandma Jo Member Posts: 36
    #19
    3Mana said:

    Thinking of you
    Grandma Jo,
    I'm so sorry that you're going through this with your daughter. It has to be so very hard to watch your child suffer. I hope you cherish every day you have with her. You sound like a great mother. Cancer is such a horrible disease and it can change your life overnight.
    I lost my husband of 46 years last March 25th. I can hardly believe it's almost a year since I held him in my arms.
    He had been diagnosed in January with lung cancer & lesions in his brain & spine. He had 2 weeks of radiation to his brain & spine which showed good results. Then he had his first chemo treatment with 3 chemos one of which was Avastin. He started coughing up blood before his next treatment, so they did a CT scan and said things looked good, but his next chemo would be minus the Avastin. Well it was too late. The damage from Avastin had already been done and he hemmorraged in the bathroom one night. It was traumatic & I couldn't do anything except call 911. They worked on him for 45 min. but it was too late. I question the Avastin because on the info it said "can be a RARE side effect--hemmorraging. Since it did say rare, guess we had faith that it wouldn't happen. But it did!
    Sorry I'm rambling. Please be strong and give your daughter a hug for me, okay?
    Friends, Carole

    Thank you for your prayers and support
    Dear Carol My heart just hurt for you as I was reading your post. I can not even imagine what was going through your mind as you tried to help your husband and all in vain. I had not heard of Avastin so I really am taken aback that it did so much damage in such a short time. Is this a new drug for chemo? I thank you for posting this as I will red flag this if my daughter decides to do the chemo again. Thank you for thinking of us in your time of sorrow. Friends in the most challenging times of our lives. Grandma Jo
  • Unknown
    Unknown
    #20
    3Mana said:

    Thinking of you
    Grandma Jo,
    I'm so sorry that you're going through this with your daughter. It has to be so very hard to watch your child suffer. I hope you cherish every day you have with her. You sound like a great mother. Cancer is such a horrible disease and it can change your life overnight.
    I lost my husband of 46 years last March 25th. I can hardly believe it's almost a year since I held him in my arms.
    He had been diagnosed in January with lung cancer & lesions in his brain & spine. He had 2 weeks of radiation to his brain & spine which showed good results. Then he had his first chemo treatment with 3 chemos one of which was Avastin. He started coughing up blood before his next treatment, so they did a CT scan and said things looked good, but his next chemo would be minus the Avastin. Well it was too late. The damage from Avastin had already been done and he hemmorraged in the bathroom one night. It was traumatic & I couldn't do anything except call 911. They worked on him for 45 min. but it was too late. I question the Avastin because on the info it said "can be a RARE side effect--hemmorraging. Since it did say rare, guess we had faith that it wouldn't happen. But it did!
    Sorry I'm rambling. Please be strong and give your daughter a hug for me, okay?
    Friends, Carole

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