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More questions than answers.... Can you folks help?

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

I am new here and why I waited so long is beyond me.
Some history:
My mother is 61 and was diagnosed with stage 4 neck and throat cancer in January of 2011.
She has always been healthy and never drank or smoked(unlike me). She refused treatment as she and my dad have always believed in natural remadies for everything.
The prognosis at the time was bleak to say the best and that was if she did undergo radiation and chemo followed by surgery.
She turned to THC for pain relief and for 16 months it seemed to help, or at least slow it down a bit.
Like I said she was never a smoker and she finally decided to quit the THC because she just did not like it.
So in May of this year she got sick, a common cold, she did not tell me and even tho I spoke with her several times a day she never let on she was feeling bad. I went to her house to visit her and she was raging a fever 103 and it had been spiking that way for at least two days. I took her straight to the ER. The Dr did some scans and found that the tumors had grown and spread quite a bit. He got her stablized and on antibiotics and that was when she started to wake up to what her body was really doing.
The Dr recommended an oncologist that he felt my mother would like and we made an appointment.

Very long story made very short she started radiation and chemo in August. She has been in the hospital more that out. Infections with PEG tube, Vomiting and cannot keep anything down.
As I write this she has been in the hospital for a week this time.
Current situation: No formula intake that will stay down, they have her on 20 ml of 1.5 Osmolite and IV fluids. But after a few min she starts vomiting and they have to stop. She has not had a BM in 10 days and all xrays and scans show nothing in her intestine. She has lost 12lbs in 8 days.
Her Oncologist told us two weeks ago that she has made no survivor plan for my mother and today I saw the Dr in the hospital and asked why she had not been by to see my mother since she was admitted and she said because she saw no need.
My mother refuses to sign any livingwill because she sees that as a sign of giving up.
She has one more radiation treatment and one more Chemo treatment and the doctors have advised her to stop them as it is only compounding her situation but she is insisting on completing what she has started.
To make matters worse, my dad divorced her two weeks before treatmentts began and moved away due to his beliefs. So her emotional state is shaken by that to say the least.
So my questions to you folks are as follows.....
How long can she live in her current state? So little nutrition and constant vomiting.
She is on Fentnal patch for pain with oxycotin added for pain. Phenagran for vomiting and Adavan for emotional stablity. She has NEVER in her life had so many meds.
And if she is going to die from all this how will it happen? Starving? That seems so cruel and painful.
At this time I am the only one here for her all my brothers live thousands of miles away. No one will tell me what I need to do to help her! UGH I am so tired and she is too.
Tonight is the first night I have been home without her here and I cannot sleep, I keep calling the hospital.
Thank you in advance for reading my first post. I promise my next will not be this long.
And any misspelled words are due to the late hour or the day.

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

Sorry for your woes. Your mom has made lots of choices. There is no use for anyone to second guess them. They were hers to make. The lack of a living will is a big problem at the current time. It puts her at risk, and both you and the medical staff in a bad situation. I cannot answer your questions with any certainty, as there are just too many unknown factors at play. If only IV fluids are being given, and they are not paying careful attention to laboratory monitoring, she will not live as lomg as if they were going full court press to support her, for instance. At some point, this also has tobe about you. As hard as it is, you need to gain some peace of mind here. Your mom continues ro make the decisions, whether good or bad. All you can do is love her, which you have already proven.

Keep coming back.

Pat

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

Keep in mind these wars that all fighters are in are their war to fight, all we are caregivers can do is help with the daily battles.

keep smiling when around your mother and up beat when talking to her on the phone is one way to help her maintain a positive attitude.

keep pushing the doctor's with question, also you might want to change doc's to find someone that will be there to help

keep in your mind the word of cancer does strange things to the family and friends near and dear to the fighters, they do not know how to deal with it so they walk away. so sad but very normal. one way of finding out who the true friends and family really are.

keep in you thoughts to take care of self also, you mother needs you well and not doing well will not help your mother

keep believing all will be fine and it will be

keep and maintain a positive mental attitude

keep your faith in God

keep helping mom so the never, never, never gives up

keep asking questions here on a wonderful site, all hear want to help no matter how long the post or how big the problem

welcome to the most unconditional support and caring family for you, your mother and family

john

Barbara B
Posts: 40
Joined: Sep 2012

My comments would echo those of Pat and John on many levels. First I am not certain any of us can advise you what to do medically. Everyone's case is different and each doctor/patient relationship is different as well.

The living will is not giving up, it is being proactive about health care. It simply allows your mom control over her own health care in the event she cannot speak for herself. I would suggest you get some more information about what they are and speak to your mom when she is having a "good" day.

Another medical opinion may be helpful as well. Doctors are human and someone else may see your mom's condition/treatment in a different light.

Most of all for you, breathe, get some rest and simply be there for your mom as you have been. Stay as positive as you can and keep asking the hard questions until you are satisfied with the answers. Being a caregiver, which is what you are now, is one of the hardest jobs in the world.

It seems to me you are doing all the right things, just don't stop. Keep fighting. Stay positive and push forward. There are many, many people in this forum that will be here to listen and support you.

Barbara

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

Perhaps she needs a J tube instead of a PEG. A J tube goes directly into the intestines instead of the stomach like a PEG. Maybe that way she'd be able to take in some nutrition/calories and build up her strength.

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

Ask and then continue to ask questions of the doctors and nurses. You and your Mother deserve answers. God Bless

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Still haven't figured out how to reply to all so have patience.

She took herself off feeding again last night and said she hates it.
She has also told the Dr and I that she wants no more surgeries no matter how small. So I would think the J tube would be out as well.

It is a battle for sure, As far as the living will. I have come to terms with it. She knows its about taking control of her own care but somewhere in the depths of her mind it means failure and that is not an option for her. So I will stand by her. I have started recording her voice, at first it was for me and my children but as I was listening to the tapes I found she says a lot about what she wants her care to include/exclude. So if it comes down to it that may help me.

Thanks again everyone.

nick770's picture
nick770
Posts: 195
Joined: May 2012

My Prayers and thoughts go out to you and your mother. I don't know what else to say that others haven't. Keep In touch let us know how things are going, don't stop fighting we will stand with you

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

add me to list of folks who hope ya'll can get through these trying times.

only thing I can add is that I had a lot of vomiting at the end of tx too... but it wasn't from feeding, it was the rads. I was vomiting three times a night--if there wasn't anything left in my stomach, it was the dry heaves. tried three different meds, none helped. Ativan didn't really stop the vomiting, it just let me get a few hours of sleep between pewks. ;-)
but once radiation ended, the vomiting did too.

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

cricketskid,

Your Mom’s current condition sounded like my start on this journey. Following my loading dose of chemo I checked into the hospital for a PEG insert, a colonoscopy and endoscopy, following those procedures I spent the next 12 days in the hospital throwing up everything they put down my PEG. As it turned out I had Ileus and my lower half (GI tract) had gone to sleep and refused to wake-up. After, I guess around day 8 things started to work and at day 12 I went home. It was a terrible experience.

Not that your Mom has what I had, but there could be a reason not yet determined.

Best of luck and don’t give up.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

having to go thru this....your mom sounds like she wants to fight now. I'm wondering if we don't have a vicous circle of pain meds, empty stomach, and chemo...all making it impossible to keep anything down. In the last 3 months of chemo (for me)...I'd have it on a Tues., get a pump to take home till Sat...and all these days I'd take my anti-nausea meds, and all was well...however, by Sunday I'd have a mouthful of ulcers and blisters, so I'd have to do the pain meds, and invariably the puking would start.....it was so nerve wracking, because I KNEW I had to eat to get better, but everything I put in my tube came back up within minutes of putting it in....

So....to combat this problem....I keep VERY close to my anti-nausea meds, and would "eat/tube" within 30 to 45 minutes of taking them...then within 30 minutes AFTER that meal was settled I'd do the pain meds....this helped a lot, but I don't know if you can do that with patches.

We had another girl on here who was having an awful time keeping food down, and it turned out the oxycotin and the Fentenal had basically put her intestinal tract to sleep, once they lightened up on the nacarotics, her vomiting slowed down. Just things to think about.

p

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Glad they're installing the J-tube. A woman I know had similar issues with a G-tube, and did much better with the J-tube.

Sorry to hear about the aspiration - that's always scary. Hope they can get the fever/infection under control. Many of us here (myself included) had to be hospitalized for fevers during treatment.

Hoping you and your mom can get a second wind.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

Tomorrow they plan to incert j tube. If that does not work they will start IV nutrition on sat or Sunday. They found some nodes on her lungs that they are doing a Ct scan for any min now. While vomiting today she asperated and the Dr is watching for infection in lungs she has been running a fever all day.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

glad to see your mom getting a feeding tube.

You asked several questions to which many can't be answered because each person is different.

The one question you did ask that I can offer an opinion on is the statement which is really a question "no one will tell me what to do" ...may I humbly suggest several routes.

1. The hospital she is in will have social workers who can get you in touch with the proper agency that may have personnel there (like the American Cancer Society)
2. Contact your local American Cancer Society office / location and tell them you would like to know if there is a volunteer within their agency (or certified rep) who can help.

At my treatment facilty the radiation nurse provided me several phone numbers to "volunteers" who had a similar cancer as mine if I wanted to call them...I thought that was a neat touch. I never did call them only bc I felt my team of docs and my wife were all I needed at the time, but I had family around me and it sounds like you do not (bc your siblings are so far away)...

Whispered a prayer for you and your mother for strength and healing..

Keep us posted, I am sorry you are having to carry so much on your shoulders at this time...being a caregiver is just as hard as being a patient I believe....

Best,

Tim

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

for the pain your mother is going thru. My cancer is laryngeal, and therefore I did not have the problems your mother is facing. Consequently, I have no advice. Rick.

cricketskid's picture
cricketskid
Posts: 25
Joined: Sep 2012

First I wou;d like to say OOPS for al the duplicate posts. The internet at the hospiital is strange and it kept resending my final page.

My mother had the J tube incerted on Friday and within 12 hours had not improved. Vomiting constantly. So was taken off of tube feeding al together and is now on TPN.

She has been told she will not be able to go home while on TPN at this time due to her weakened state.
They have started her on Fentnal pump so she can now get her pain meds without having to wait on the nursing staff.
She had been on Phenagran for almost two months but today she had a reaction to it. Crazy but they took her off it none the less.
The hospital DR will be conculting with her Oncologist on Monday to see how they want to continue care.
The Doctor has a real fear that the TPN might cause more complications due to my mothers weakened state. Her lung function has decreased and she is no longer able to get up on her own.
My Mother is starting to talk like she really knows this is the worst case and that she may not make it. She understands that there is not much more they can do and they are trying to make her comfortable. The fear in her eyes is scary to see. I love her so much but the pain she is going through is horrible. She keeps asking me to look at her neck and see if the cancer is still there.
The Doctor is also recomending she stop Chemo because it will harm her more than it will help at this point.

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