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My mom is in the suburbs outside of Washington DC, so she has access to some great treatment.
The prognosis is not good. Everyone I have spoken to (family, doctors, friends) are all saying to prepare for the worst and steel myself for the fact that she does not want to fight this. My sister sent me a pic-- she looks alarming. Color is terrible, she has lost a lot of weight since I last saw her, she has deep circles under her eyes. The docs are saying that they have to do chemo to shrink the mass at the opening to her stomach so that she can get some solid food down, but she is saying that she is not sure she wants to go through that for a few extra months of life. I am really broken up about this-- my mom and I are not super close, but yet my reaction has been much more than I would have expected. I don't know what to do or how to help.
Is she being treated at Hopkins? If not; have your sister get her there asap.
They can put a feeding tube in. Have your sister make an appointment with a gastro. My hubs was done by a general surgeon; I do not suggest that.
I don't understand why her prognosis is so grim? So many people have fought this & are ok.
Yes; chemo will make her tired but it's not that bad. My dad had leukemia; the chemo for that was horrible compared to the chemo for something like this. Hub was tired but still made it to radiation 5 days a week for 33 treatments. He had 3 chemo. They give decent meds; my hub didn't get sick once. Are they talking about radiation too?
Your mom is only 65; she's too young to just give up.
Give your sister my email if you'd like; I'd be happy to speak to her. Did you send her the info I gave you?
Is she being treated at Hopkins? If not; have your sister get her there asap.
They can put a feeding tube in. Have your sister make an appointment with a gastro. My hubs was done by a general surgeon; I do not suggest that. I don't understand why her prognosis is so grim? So many people have fought this & are ok.
Yes; chemo will make her tired but it's not that bad. My dad had leukemia; the chemo for that was horrible compared to the chemo for something like this. Hub was tired but still made it to radiation 5 days a week for 33 treatments. He had 3 chemo. They give decent meds; my hub didn't get sick once. Are they talking about radiation too?
Your mom is only 65; she's too young to just give up.
Give your sister my email if you'd like; I'd be happy to speak to her. Did you send her the info I gave you?
Try to hang in there.
Its really a question of attitude. She wants to go, and she isn't willing to do anything to prolong her time with us. She refuses to go to Hopkins or anywhere too far from where she lives-- the doctor mentioned Georgetown, and she doesn't want to make the trip into the city because its too far (its a 20 minute drive). She has said that she isn't sure she wants to cooperate with any treatment other than palliative care. Its ultimately her decision, and I will support her, but its heartbreaking. She is someone who has suffered from a variety of health (mental and physical) disorders over the years and has always been preparing for death. Her mother died quickly from lung cancer at 64, and she has said for years that she will "go the same route." She thinks that this will make her less of a burden. She also works in real estate, and doesn't have any security with her job. She had planned to retire in a few years once she had saved enough, but is quitting immediately due to her level of fatigue. And yes, her docs want to begin chemo and radiation as soon as possible.
My sister is closest and she is a nurse at the hospital where they are seeing her, so she is in good hands. My concern is for her comfort and quality of life as she struggles with this. I do not live close by-- I used to and moved in April, which I am now re-thinking. I am visiting this month, and have been sending things she wants. She has asked for some toys from her childhood and a couple of movies. I don't know if she will change her mind and start to fight, but right now, we are all being told to brace ourselves.
Anyone can tell me their experience with esophageal cancer, stage 4,
has traveled to lymph nodes; liver, lungs and now right leg. Doc says
till 2nd round of chemo, cannot tell how much time. July 31, when DH
vomited blood, biopsy revealed cancer.
First round of chemo, 4 hours at the clinic, then a fanny pack for 4 days.
Radiation five days a week so the bleeding will not occur again.
Thank you for sharing.
There is a smaller dosage but may take more time to get dosages it needs. This article is a bit older so maybe they've made progress. I Don't want anyone to get their hopes up, though.
Its really a question of attitude. She wants to go, and she isn't willing to do anything to prolong her time with us. She refuses to go to Hopkins or anywhere too far from where she lives-- the doctor mentioned Georgetown, and she doesn't want to make the trip into the city because its too far (its a 20 minute drive). She has said that she isn't sure she wants to cooperate with any treatment other than palliative care. Its ultimately her decision, and I will support her, but its heartbreaking. She is someone who has suffered from a variety of health (mental and physical) disorders over the years and has always been preparing for death. Her mother died quickly from lung cancer at 64, and she has said for years that she will "go the same route." She thinks that this will make her less of a burden. She also works in real estate, and doesn't have any security with her job. She had planned to retire in a few years once she had saved enough, but is quitting immediately due to her level of fatigue. And yes, her docs want to begin chemo and radiation as soon as possible.
My sister is closest and she is a nurse at the hospital where they are seeing her, so she is in good hands. My concern is for her comfort and quality of life as she struggles with this. I do not live close by-- I used to and moved in April, which I am now re-thinking. I am visiting this month, and have been sending things she wants. She has asked for some toys from her childhood and a couple of movies. I don't know if she will change her mind and start to fight, but right now, we are all being told to brace ourselves.
I do understand her reason to not want to fight; something tells me she may have to take some sort of chemo as a comfort measure due to the location of the cancer. This could be a really painful way to die; I'm not sure. The way to answer that would be to check the links I gave you.
Even though your sister is a nurse; the oncologist may not see a lot of this type; it is worth it to bring her to Hopkins or one of the other larger centers to get an opinion. She does not have to accept treatment there; but they will give a better idea of everything; from odds to her not accepting treatment. Your sister may be able to go without her as long as she has a medical power of attorney & copies of her records.
Does anyone have some suggestions on good tasting baby food that isn't full of additives? For the time being, that is what her docs want her to eat if she can keep it down, and I am trying to have a case sent to her. We find out more today about feeding tubes, so this may change, but I want to be ready with some palatable options. She has been complaining about Ensure-- she doesn't like anything with a milky taste.
Does anyone have some suggestions on good tasting baby food that isn't full of additives? For the time being, that is what her docs want her to eat if she can keep it down, and I am trying to have a case sent to her. We find out more today about feeding tubes, so this may change, but I want to be ready with some palatable options. She has been complaining about Ensure-- she doesn't like anything with a milky taste.
Did you tell your sis about getting a gastro to do the feeding tube? There is a board on Inspire by the Oley group- link to their feeding tube web site not message board.
Your sister can make her own; fresh with foods your mom likes. I used to puree all sorts of food for hub when he was going through radiation. I boiled chicken to make soup; the broth can be used as stock for the puree. I used a lot of pastina & smaller noodles for calories. Peanut butter is also high in calories.
There was info in that super thread I linked you to; whole section on things pertaining to foods that are Easy To Swallow recipes
She can also do a google search for home made baby food. The healthier the better. Buying ready made baby food for an adult may get expensive. Has the Dr given a script for it? Possible it can get covered under insurance. The liquid medical food (Ensure type) is also covered under insurance via script. The Ensure & others that you buy over the counter contain a lot of sugar from what I've read. It also gets expensive. I used to buy from CVS when they had a sale with coupon. He did not drink them much. homemade baby food recipes
Also look into Nutri Bullet/ or Magic Bullet. There should be recipes on both sites. IMO; I would buy the NutriBullet. The commercials are convincing. I also know people that use it & swear by it.
Your sister can email me if she wants. I don't bite.
Last edited by Roselvr; 01-11-2013 at 09:46 AM..
Reason: Add info
Did you tell your sis about getting a gastro to do the feeding tube? There is a board on Inspire by the Oley group- link to their feeding tube web site not message board.
Your sister can make her own; fresh with foods your mom likes. I used to puree all sorts of food for hub when he was going through radiation. I boiled chicken to make soup; the broth can be used as stock for the puree. I used a lot of pastina & smaller noodles for calories. Peanut butter is also high in calories.
There was info in that super thread I linked you to; whole section on things pertaining to foods that are Easy To Swallow recipes
She can also do a google search for home made baby food. The healthier the better. Buying ready made baby food for an adult may get expensive. Has the Dr given a script for it? Possible it can get covered under insurance. The liquid medical food (Ensure type) is also covered under insurance via script. The Ensure & others that you buy over the counter contain a lot of sugar from what I've read. It also gets expensive. I used to buy from CVS when they had a sale with coupon. He did not drink them much. homemade baby food recipes
Also look into Nutri Bullet/ or Magic Bullet. There should be recipes on both sites. IMO; I would buy the NutriBullet. The commercials are convincing. I also know people that use it & swear by it.
Your sister can email me if she wants. I don't bite.
My wife discovered the NutriBullet and later got the MagicBullet and we love it.
Its really a question of attitude. She wants to go, and she isn't willing to do anything to prolong her time with us. She refuses to go to Hopkins or anywhere too far from where she lives-- the doctor mentioned Georgetown, and she doesn't want to make the trip into the city because its too far (its a 20 minute drive). She has said that she isn't sure she wants to cooperate with any treatment other than palliative care. Its ultimately her decision, and I will support her, but its heartbreaking. She is someone who has suffered from a variety of health (mental and physical) disorders over the years and has always been preparing for death. Her mother died quickly from lung cancer at 64, and she has said for years that she will "go the same route." She thinks that this will make her less of a burden. She also works in real estate, and doesn't have any security with her job. She had planned to retire in a few years once she had saved enough, but is quitting immediately due to her level of fatigue. And yes, her docs want to begin chemo and radiation as soon as possible.
My sister is closest and she is a nurse at the hospital where they are seeing her, so she is in good hands. My concern is for her comfort and quality of life as she struggles with this. I do not live close by-- I used to and moved in April, which I am now re-thinking. I am visiting this month, and have been sending things she wants. She has asked for some toys from her childhood and a couple of movies. I don't know if she will change her mind and start to fight, but right now, we are all being told to brace ourselves.
No matter how difficult it is, you have to let her be in control of her life. If she doesn't want treatment, so it be. I totally understand her. Everyone I knew who had that kind of cancer went through a terrible time with chemo and ended up dying anyway. If she wants to get her affairs in order and go peacefully, so it be. Any decision she takes it's the best decision. Like I said, it's her life after all.
So PETScan results-- cancer everywhere. Consult at Johns Hopkins and no one recommends anything but palliative care. The feeding tube is being put in direct to her stomach on Monday. I am flying to see her ASAP. Prognosis is a few months at best if she can intake enough calories.
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