How bad can it get?!
My grandmother was diagnosed in March of 2013 with DLBCL at 71 years old and scheduled for 6 R-CHOP treatments. The first was terrible and she was hospitalized for 21 days. Each new treatment got easier and more tolerable, and she was able to receive outpatient cocktails through her port. Right before her 6th treatment, in July of '13, she started loosing her balance and strength and fell on her way to the ER For pain. She suffered stroke like symptoms with her left side pretty much paralyzed. After Dr decided she was too weak for 6th treatment she was transferred to a rehab facility to work on strength. While at the rehab for almost 3 weeks, she deteriorated rapidly. Lost feeling in right hand, food went from chopped to liquid to nectar to a feeding tube. She cannot speak, have a sip of water, nothing. She has good days where we can almost hear her whispers and she has bad days where we wonder if she'll make it through the night. She was transported back to hospital where they have now found the cancer in her brain and spine. She got an Ommaya port and started cytarabine. Has anyone eer experienced this much? How much is too much? Have you witnessed or lived through this terrible of a nightmare? We are so scared and continue to pray constantly, however, hearing a similar story would help me get through this. I search all day and all night (I have a newborn) for similar stories and all I find is brief survival stories with "it was rough." Is there somewhere to go to read how rough it actually got? I'm spinning in circles and every corner is making this nightmare worse...
Comments
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HOW BAD CAN IT GET
Ruddashley:
I cannot answer your question, but here is the link to Memorial Sloan Kettering in New York City, one of the best. Perhaps you can communicate with someone there and get information:
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Grandmom
Ruddashley,
My mom underwent essentially everything you described about your grandma. But, she NEVER HAD ANY FORM OF CANCER OR CHEMO. And, her agony lasted 8 years. It was called "vascular dementia." The last two years were in diapers, and she did not know my name, or my siblings' names. She did not know HER name.
When a person is horribly ill with a variety of problems, such as what seems to be a stroke, it becomes impossible to conclusively differentiate which symptoms are caused by which diseases or issues. Of course, a stroke can have different causes, and her "stroke-like" symptoms may have been caused by the cancer activity in the crainum.
The "short" answer to "how bad can it get" is: Death. It can get bad enough to die. It happens a thousand times a day in the U.S. from cancer. A lot of former contributors here are now dead, which we learned from their loved ones subsequently.
I am assisting a dear friend currently with prostate cancer, and got a wake up call (literally) from his neighbor this morning, and had to rush over. She was sure (due to some changes in his routine) that he was dead. Not yet, thankfully, but the doctors have been giving him "weeks" to live for three years now (he has been Stage 4 for many years, and has had cancer for 13 years).
It was difficult entering his house, to "see" where he had passed. I was very releaved to hear him answer when I got inside and called to him. He is nearly deaf, and never heard my phone calls earlier...
Read your local Obits. Most of the people (or at least a very high percentage) who died before 60 will be cancer-related. That, or auto accidents. That is how bad it gets.
MOST of the stories here are success-related, and the folks get well enough to face another day, another treatment, another trial. A large portion get fully into remission, and never hear from cancer again, even after decades. "Success" can be defined for one patient as living another two decades. Or, for another, it can be defined as living two months, to see a child get married, or graduate from school. I had a dear friend named Deborah whom I met at infusion. Sher always sat in the treatment chair next to mine. She had had colorectal for five years, and that was her dream, to see her son graduate high school in a year. She did not make it, which tore me up pretty badly.
I hope your grandmother recovers, and that this nightmare clears into a more pleasant time. Some times it does, and sometimes, as I was saying, it does not.
max
.
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Hi MaxGrandmom
Ruddashley,
My mom underwent essentially everything you described about your grandma. But, she NEVER HAD ANY FORM OF CANCER OR CHEMO. And, her agony lasted 8 years. It was called "vascular dementia." The last two years were in diapers, and she did not know my name, or my siblings' names. She did not know HER name.
When a person is horribly ill with a variety of problems, such as what seems to be a stroke, it becomes impossible to conclusively differentiate which symptoms are caused by which diseases or issues. Of course, a stroke can have different causes, and her "stroke-like" symptoms may have been caused by the cancer activity in the crainum.
The "short" answer to "how bad can it get" is: Death. It can get bad enough to die. It happens a thousand times a day in the U.S. from cancer. A lot of former contributors here are now dead, which we learned from their loved ones subsequently.
I am assisting a dear friend currently with prostate cancer, and got a wake up call (literally) from his neighbor this morning, and had to rush over. She was sure (due to some changes in his routine) that he was dead. Not yet, thankfully, but the doctors have been giving him "weeks" to live for three years now (he has been Stage 4 for many years, and has had cancer for 13 years).
It was difficult entering his house, to "see" where he had passed. I was very releaved to hear him answer when I got inside and called to him. He is nearly deaf, and never heard my phone calls earlier...
Read your local Obits. Most of the people (or at least a very high percentage) who died before 60 will be cancer-related. That, or auto accidents. That is how bad it gets.
MOST of the stories here are success-related, and the folks get well enough to face another day, another treatment, another trial. A large portion get fully into remission, and never hear from cancer again, even after decades. "Success" can be defined for one patient as living another two decades. Or, for another, it can be defined as living two months, to see a child get married, or graduate from school. I had a dear friend named Deborah whom I met at infusion. Sher always sat in the treatment chair next to mine. She had had colorectal for five years, and that was her dream, to see her son graduate high school in a year. She did not make it, which tore me up pretty badly.
I hope your grandmother recovers, and that this nightmare clears into a more pleasant time. Some times it does, and sometimes, as I was saying, it does not.
max
.
That was beautifullyHi Max
That was beautifully written...Thank you Max!
^_^
take care buddy (((Hugs)))
Sincerely,
Liz
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Thank you for your replies.Grandmom
Ruddashley,
My mom underwent essentially everything you described about your grandma. But, she NEVER HAD ANY FORM OF CANCER OR CHEMO. And, her agony lasted 8 years. It was called "vascular dementia." The last two years were in diapers, and she did not know my name, or my siblings' names. She did not know HER name.
When a person is horribly ill with a variety of problems, such as what seems to be a stroke, it becomes impossible to conclusively differentiate which symptoms are caused by which diseases or issues. Of course, a stroke can have different causes, and her "stroke-like" symptoms may have been caused by the cancer activity in the crainum.
The "short" answer to "how bad can it get" is: Death. It can get bad enough to die. It happens a thousand times a day in the U.S. from cancer. A lot of former contributors here are now dead, which we learned from their loved ones subsequently.
I am assisting a dear friend currently with prostate cancer, and got a wake up call (literally) from his neighbor this morning, and had to rush over. She was sure (due to some changes in his routine) that he was dead. Not yet, thankfully, but the doctors have been giving him "weeks" to live for three years now (he has been Stage 4 for many years, and has had cancer for 13 years).
It was difficult entering his house, to "see" where he had passed. I was very releaved to hear him answer when I got inside and called to him. He is nearly deaf, and never heard my phone calls earlier...
Read your local Obits. Most of the people (or at least a very high percentage) who died before 60 will be cancer-related. That, or auto accidents. That is how bad it gets.
MOST of the stories here are success-related, and the folks get well enough to face another day, another treatment, another trial. A large portion get fully into remission, and never hear from cancer again, even after decades. "Success" can be defined for one patient as living another two decades. Or, for another, it can be defined as living two months, to see a child get married, or graduate from school. I had a dear friend named Deborah whom I met at infusion. Sher always sat in the treatment chair next to mine. She had had colorectal for five years, and that was her dream, to see her son graduate high school in a year. She did not make it, which tore me up pretty badly.
I hope your grandmother recovers, and that this nightmare clears into a more pleasant time. Some times it does, and sometimes, as I was saying, it does not.
max
.
Thank you for your replies. Maybe what I should have asked more clearly was "how bad DID it get during your experience?" I guess I wasn't looking forward to the literal answer to how bad CAN it get, because that answer is right in front of my face and directly in the back of my mind.
I'm just looking to relate though hearing others' stories and finding strength through that. My family and I ask ourselves how much is too much to put my grandma through, where do we draw the line? Of course I want her to keep fighting, but the look in her eyes are pretty much telling us to stop trying to save her...Max, I'm sorry for all the heartbreak you experienced through the years, and I'm sure it was very difficult to see your mom go through it for 8 years. I cannot imagine the feeling you had while entering your friends home. You seem to be a very kind, generous, big hearted kind of person, and I'm thankful for people like you who make the world a better place. You are a stong fighter, Max! A great warrior!
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My Grandmother lost herRuddashley said:Thank you for your replies.
Thank you for your replies. Maybe what I should have asked more clearly was "how bad DID it get during your experience?" I guess I wasn't looking forward to the literal answer to how bad CAN it get, because that answer is right in front of my face and directly in the back of my mind.
I'm just looking to relate though hearing others' stories and finding strength through that. My family and I ask ourselves how much is too much to put my grandma through, where do we draw the line? Of course I want her to keep fighting, but the look in her eyes are pretty much telling us to stop trying to save her...Max, I'm sorry for all the heartbreak you experienced through the years, and I'm sure it was very difficult to see your mom go through it for 8 years. I cannot imagine the feeling you had while entering your friends home. You seem to be a very kind, generous, big hearted kind of person, and I'm thankful for people like you who make the world a better place. You are a stong fighter, Max! A great warrior!
My Grandmother lost her battle this evening surrounded by her loved ones praying her to have peace. She is in a better place now. Thank you for the support I found with the CSN, and I pray that there are many many more survivors out there.
Sincerely,
Ashley
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I'm so sorry sweetie.Ruddashley said:My Grandmother lost her
My Grandmother lost her battle this evening surrounded by her loved ones praying her to have peace. She is in a better place now. Thank you for the support I found with the CSN, and I pray that there are many many more survivors out there.
Sincerely,
Ashley
I'm so sorry sweetie. My thoughts and prayers are with your wonderful grandma and all her loved ones...
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Your GrandmotherRuddashley said:My Grandmother lost her
My Grandmother lost her battle this evening surrounded by her loved ones praying her to have peace. She is in a better place now. Thank you for the support I found with the CSN, and I pray that there are many many more survivors out there.
Sincerely,
Ashley
Ashley,
I am very sorry for your loss. I pray that God comforts you and your family as He holds her by His side.
Karl
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GrandmotherShoopy said:Your Grandmother
Ashley,
I am very sorry for your loss. I pray that God comforts you and your family as He holds her by His side.
Karl
Ashley, I am so sorry to hear about the loss of your beloved Grandmother. I pray for peace and comfort for you and all your family. I hope that soon your memories of her will make you smile and no longer feel sorrow.
Rocquie
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So sorryRuddashley said:My Grandmother lost her
My Grandmother lost her battle this evening surrounded by her loved ones praying her to have peace. She is in a better place now. Thank you for the support I found with the CSN, and I pray that there are many many more survivors out there.
Sincerely,
Ashley
Ashley,
I am so sorry for your loss....So glad everyone was there to surround her and give Love and Prayer
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