Completely Obstructed

Amy0309

Hello, my 82 year old mother was diagnosed with hypopharangeal cancer T3 N0 October 4, 2012.  She was an alcoholic most of her life, she fought it and was not a bad mother but never overcame the disease.  She has managible emphysema from smoking which she quit 10 years ago.  She had a debulking of the cancer in early October and made it through all the radiation.  She had swallow therapy throughout her radiation treatment on January 9th, no chemotherapy.  She has been on complete PEG tube feeding since surgery, she could swallow a little in the begining but was aspirating.  Her PET scan came back all clear.  Last Thursday she went to have the esophagus dilated.  The scarring is so severe they were not able to get through.  They went from the mouth down and from the PEG up.  No lumen(opening) was seen.  She has always been extremely small, currently she is probably barely 5 ft. and 90 lbs.  They did say they would try to dialate again in six weeks.  She is not really the kind of women that is the wake up and smell the roses kind.  My father 83 is alive and pretty well for his age.  I believe my Mom would like to to dialate again, but if that does not work I do not believe she would like to live.  Her back has been acting up at L4 and we are going to that doctor later this week.  My mother will not have anyone for help in the home.  They are managing and are quite cognisant but she is now so depressed and negative about everything.  She has been on Ativan(help with withdrawls) and very small amounts of hydrocodein, but since her most recent surgery last week they told her take whatever she needed, so she has been taking more hydrocodein and to a very small addict, the effects are not very fun to deal with.  My poor Dad just cannot take it anymore.  I work, my husband has his own businesss and live 45 mins away, but I still manage to take them to all there appointments and an emotionallly there for them 24/7.  I am worn out, I cannot imagine how they are surviving.  That is it in a nutshell.

 

Any thoughts on what the chances are of getting through the scar tissue to dialate?  If that does not work, and she wants to die, how can I help her.  I know that may sound morbid, but I know it is what she wants.  She had a great fun life and has given this all she has, so I do not blame her one bit.  What should we expect next.  I am sorry that I  am just coming her asking for support without offering anything at this moment.  Please if anyone has input it would be truely apprectiated.  Thank you, Amy

paul61

You are there to support your Mom and that is what she needs now

Hello Amy,

I am sorry you find us under such difficult circumstances for your Mom. Gastroenterologists tend to be very cautious when it comes to stretching the throat stuctures; a tear can be very difficult to deal with particularly in your mom’s delicate condition. This group primarily deals with esophageal cancer, that of course occurs father down the throat than your mother’s cancer, but the issues are certainly similar when it comes to swallowing and nutrition.

There are people who survive without the ability to swallow through the use of feeding tubes and other interventions to deal with elimination of saliva and other issues normally dealt with through our ability to swallow; but there is certainly an impact in terms of quality of life.

 You asked what you can do to help your mother in this situation? I think you are doing it. You are there to support her and your Dad when they need assistance; and to listen when they need to talk about their frustrations and needs. In terms of helping your Mom through the “quality of life vs. quantity of life” analysis I would suggest:

1. Don’t cross the dilation “failure” bridge before you get there; things could improve over time.
2. Educate yourself about the feeding options for people who do not have the ability to swallow so you can support your Mom with knowledge if it comes to that.
3. Tell her that you are there to support her decision no matter what it is. Some people feel they need to continue to fight even after they would like to rest because they feel their family members expect it. She needs to feel she can make the best decision for her without the judgment of others.
4. Perhaps you and your Mom could talk to her medical oncologist about some psychological counseling to help her with her depression and perhaps your Dad as well. These circumstances are certainly debilitating and it is normal to be depressed.

Here is a reference to describe a "j-Tube" a common form of intervention for inability to swallow food:

http://www.dukehealth.org/cancer/health_library/care_guides/treatment_instructions/jejunostomy

I am glad your Mom and Dad have such a strong advocate during this difficult time. Many folks their age find themselves alone at a time like this. I am sure they are thankful you are there.

 

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Amy0309

paul61 said:

You are there to support your Mom and that is what she needs now

Hello Amy,

I am sorry you find us under such difficult circumstances for your Mom. Gastroenterologists tend to be very cautious when it comes to stretching the throat stuctures; a tear can be very difficult to deal with particularly in your mom’s delicate condition. This group primarily deals with esophageal cancer, that of course occurs father down the throat than your mother’s cancer, but the issues are certainly similar when it comes to swallowing and nutrition.

There are people who survive without the ability to swallow through the use of feeding tubes and other interventions to deal with elimination of saliva and other issues normally dealt with through our ability to swallow; but there is certainly an impact in terms of quality of life.

 You asked what you can do to help your mother in this situation? I think you are doing it. You are there to support her and your Dad when they need assistance; and to listen when they need to talk about their frustrations and needs. In terms of helping your Mom through the “quality of life vs. quantity of life” analysis I would suggest:

1. Don’t cross the dilation “failure” bridge before you get there; things could improve over time.
2. Educate yourself about the feeding options for people who do not have the ability to swallow so you can support your Mom with knowledge if it comes to that.
3. Tell her that you are there to support her decision no matter what it is. Some people feel they need to continue to fight even after they would like to rest because they feel their family members expect it. She needs to feel she can make the best decision for her without the judgment of others.
4. Perhaps you and your Mom could talk to her medical oncologist about some psychological counseling to help her with her depression and perhaps your Dad as well. These circumstances are certainly debilitating and it is normal to be depressed.

Here is a reference to describe a "j-Tube" a common form of intervention for inability to swallow food:

http://www.dukehealth.org/cancer/health_library/care_guides/treatment_instructions/jejunostomy

I am glad your Mom and Dad have such a strong advocate during this difficult time. Many folks their age find themselves alone at a time like this. I am sure they are thankful you are there.

 

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Dear Paul

Paul, thak you for the words of wisdom.  They help me to know to continue to accept whatever her decision is and to stay positive that a dilation could work.  I was on the phone with a home health nurse yesterday whom knows our family personally, well she is with the same agency that handles services for the hospital center we are with and she read parts of the operative report and there was a grade II tear during the procedure.  Should we be overly concerned with this or only if she continues to have pain and blood.  She did cough up some very dark blood over the weekend, it was not a lot and not new?  Also, she does receive all nutrition and medication through the PEG and has since October.  Thank you again, for the positive feedback.  Amy

rose20

Amy, my heart goes out to you

Amy, my heart goes out to you and your mom...A very difficult road you are both on and your dad.

My heart goes out to anyone who cannot swallow. My brother had to endure this. It is awful.

I will add you all to my prayers.

And Paul, I agree, your words are so wise, you said it all.

 

rose

 

Amy0309

rose20 said:

Amy, my heart goes out to you

Amy, my heart goes out to you and your mom...A very difficult road you are both on and your dad.

My heart goes out to anyone who cannot swallow. My brother had to endure this. It is awful.

I will add you all to my prayers.

And Paul, I agree, your words are so wise, you said it all.

 

rose

 

Thank you very much Rose.

Thank you very much Rose.