Topic: What I would have done differently if I would have known better

If I could rewind to july 1st 2009 I would. I would have asked for a 2nd opinion before allowing my mom to receive chemo. I would have gotten the 2nd even though my mom did not have insurance yet (or medi-caide). I would have opted for another form of treatment less invasive. I would have, I would have, I would have...

Side note...Having insurance in America greatly improves your ability to stay alive and fight!

During my mom's second opinion appt in Portland, on Wednesday we were told that the tumors in her liver were making her sick and not the chemo. We knew she had bile duct cancer w tumors in her liver only it has not spread...but I guess those tumors were enough. Dr told us she only has weeks left. The chemo and cancer have robbed her of strength to walk or move unassisted. She cannot eat without vomiting. They sent in social services to help us with hospice.

We decided to rent a mini van and drive her home to southern ca (from Eugene Oregon 14hours) Dr advised us that she was to sick to ride a 2 hour flight!We are in the process of getting her approved for medical. The hospice care we chose is nation wide granted we had medical pending.

The Dr helped us by getting her a Paracentesis on the Thursday before we left. And prescribed Marinol(not covered by insurance, pill form marijuana for nausea which worked wonders by the way made her sleepy and hungry)

We made it (she was a trooper, considering we had to lay her in the back on memory foam! Getting her in and out of that thing was like watching the 3 stooges!))

The swelling is back, of course and so is the vomiting...It is so hard to watch her suffer, day after day. She is scared. I wish we could have done something to save her. She is still here in pain less the n half the women she was.

Is there any hope at this point? Does anyone have a story out there that was given weeks but is still here fighting?

so sorry this is such a bummer post, you guys are always so positive. Sorry

Blessings, Elicia

2 (edited by marions Sun, 23 Aug 2009 23:09:59)

Re: What I would have done differently if I would have known better

Elicia......your posting describes the reality of the situation so please; do not feel the need to apologize for anything you are saying.  I assume that Hospice is by your side now.  Your Mom should not be suffering from any pain as there is plenty of medication readily available by means of a physician's prescription or, Hospice should be able to provide it for her.  Vomiting can be a horrible side effect of this cancer.  My husband experienced it and we have seen it on this board, frequently.  In our situation we found suppositories for pain and vomiting to be quite helpful but, others faired equally well with oral medication.  Elicia, this is a difficult cancer and I don't think that you should trouble yourself with what you could have, or should have done.  You have done everything to the best of your ability.  Of course, there are people who have been given weeks to live and who have far outlived that prediction.  But, first your Mom's pain has to be controlled and her vomiting  be reduced to a minimum.  Does she tolerate water, or Ensure?  Does her vomiting occur after food intake only or, does it happen randomly?  You are a wonderful daughter to your Mom.  Please, stay strong and continue to reach out. Also, by using the "search function" and entering "pain" and "vomiting" some previous postings might be of help to you.  My heart is with you.

Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What I would have done differently if I would have known better

Dear Elicia,
                Being positive on this site is mixed with realism and genuine understanding.False optimism is sometimes quite depressing.I think it best to accept your mom is gravely ill and say and do all the things that need to be said and done.Gather all your supports,the hospice section on this site is a good place to post as people have great knowledge in this area too.
Sometimes people do rally and other times you get a little window where they improve   for a time but comfort is the aim,and that goes for all of you.
   I,myself regret the chemo that my husband recieved as it seemed to make him worse.Others might regret not getting it.Its all hard going and that trip you made sounded like a superhuman effort!
                    Best of luck and let us know how things are going
                                                                             Janet

Re: What I would have done differently if I would have known better

Dear Elicia we are so very sorry for this nightmare you are encountering. We always say that the one thing we know for sure about CC is that we know nothing. Therefore, there is no way possible for you to have done anything differently than what you have done. For each person wanting to do the chemo, there is a person who does not want chemo. Not all the surgeries are successful and the doctors don't know how things will turn out until they actually go in for the surgery. The most important thing now is that you are at your mother's side and that Hospice keep her as comfortable as possible. Your family and mother are i our prayers. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What I would have done differently if I would have known better

Hello Elicia, what a challenge- I can't imagine. You're an angel to your Mom, and she knows it. If you can e-mail me at e-mail hyperlink by my name, I'd like to share a presonal story with you. You and your family continue to be in our thoughts.

Tess

Re: What I would have done differently if I would have known better

Elicia,

From the start you have made every effort to do what is best for your mom, never second guess yourself. Like others have said, stay focused on her care - hospice should be ready to assist before the insurance details are ironed out. If the one you are working with does not step up, call another and just be there for your mom. Your presence and support is invaluable.

Bz

Re: What I would have done differently if I would have known better

Dear Elicia,

I agree with everything that has already been said.  We all have our share of "what if's" and regrets, but I am really beginning to believe that we all have done the best we can with the situations that we have been given and that is all we can do. Take care & know that my thoughts and prayers are with your Mom, you and your family.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: What I would have done differently if I would have known better

Thank you everyone, we are still waiting for hospice services, we are using Drs and nurses in the family until they finally get started. until then it's the meds we brought and my mom's family and 5 kids. We are trying to find a pharmacy that has the suppositories been looking since yesterday.
Thank you! Elicia

Re: What I would have done differently if I would have known better

Call the Hospice you plan to work with and ask if they have the med you need in a suppository - they likely do.  A hospice pharmacy would be more likely to stock, I think.

Bz

Re: What I would have done differently if I would have known better

Elicia, you have come to the right place; this is a good site. people on this site are living, breathing, loving fighters. I want to add my voice to those saying don't second guess yourself! It was a temptation for me, too, but led nowhere. I don't think there's any validity to second-guessing at all, it's just a little mental habit that is not needed at this time! You made the best decisions you could, in the most loving way. I made the best decision I could at every step, given the advice i received and trusted. This is a difficult disease and there are lots of uncertainties, from the docs as well as the patients. Warmest wishes, Marjoriekc

Re: What I would have done differently if I would have known better

Your story sounds so familiar to my sister's.  I swear she suffered no matter how much medication we had.

Re: What I would have done differently if I would have known better

well hospice has started, even before we were "Medi Cal pending" you guys were right. Thank you! They are helpful. My mom wants another paracentesis (spell). Her hospice Dr, says it may shorten the time she has left, but she is so looking forward to it, not doing it would kill her spirits (it will be her 6th one). She is suffering, no matter how much meds we give her. Zofran or Zophran is a God send, the only med to keep her from throwing up all day and night. Not covered by hospice..of course! Why would it be:/ it's like 50 bucks a pill, so we use them as our last hope. Thanks for all your well wishes, please keep her in your prayers. We are praying that her last journey be without pain and suffering! Thanks again, Elicia

Re: What I would have done differently if I would have known better

ok I guess I was signed on as my mom as I am using her computer...LOL the last post is from me Elib03 not victoria's secret, that's my mom. smile

Re: What I would have done differently if I would have known better

Dear Elicia,

I am so sorry that things are not going well for your Mom, but atleast now you have help. I think the most important thing is to keep her as comfortable & pain free as possible.

Make the most of what time you have left with her and know that  you are doing your best by her.  We all know what you are going through and it isn't easy for anyone, the patient or the care givers and family.

Please keep in touch and let us know how things are going.  We are all here for you.

Your Mom, you and your family are in my thoughts and prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: What I would have done differently if I would have known better

My mom passed last night surrounded by family. 11 days from the day they said chemo was no longer working. She had a paracentesis (spell) Friday night. She passed away at 11pm Sat. Yesterday morn she was vomiting and we began morphine drops, she stopped talking and began to sleep deeply...for the first time. Her entire family came and we said goodnight, and then she left us, no coma for days, she left her way.

Thank you all for your support- Elicia

Re: What I would have done differently if I would have known better

Elicia, we are so very sorry about your mom. Now she has found peace without
pain and you must know how fortunate she felt to have you by her side through her journey. Mothers never really leave you know, she will always be watching over you and forever in your heart.  Our prayers go out to you and your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What I would have done differently if I would have known better

Elicia,
How are you holding up? You have been fighting this by your mothers side and I am sure it has taken its toll. I am so sorry for your loss but I am happy it seemed peaceful at the end. I will keep you and your family in my prayers.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: What I would have done differently if I would have known better

Dear Elicia,
                  How wonderfully you managed to care for your mom,bringing her back with you like that.My sincere condolences to you and your family.
                        Kind regards Janet

Re: What I would have done differently if I would have known better

Dear Elicia,

I am so sorry to hear of your Mom's passing, however it sounds like it was peaceful and although it went so quickly, at least she did not have to suffer long and is no longer suffering from this horrible disease.  She is at peace.  She will always be with you in your heart & memories. My thoughts & prayers are with you & your family at this very sad time.  Take care Elicia.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: What I would have done differently if I would have known better

Dear Elicia.....how fortunate for your Mom to have been surrounded by her family and all due to your loving intervention.  This cancer does not play fair with us and I am so sorry to see someone as young as you having to become the caretaker and decision maker for your Mom.  Peace to you and I am wishing for your heart to begin to heal...one day at a time.
All my love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What I would have done differently if I would have known better

Elicia ... I too am saddened to learn of your mom's passing. Take strength in knowing that her family was with her and she knew she was deeply loved.  And from a daughter who cared for her dad to you, a daughter who cared for her mom, I know that you did the best for your mom that you could, never second guess that.

Bz

Re: What I would have done differently if I would have known better

Elicia,
So sorry for the loss of your mother. Please try not to second-guess your decisions (though we all do it) - as others said, there are no right answers with this cancer. My mother also had tumors just in the liver, but there were so many of them, and it's considered metastasis Stage IV if it's in the liver, so it usually IS completely hopeless. My mother tried chemo and I believe it hastened her death, so really, you never do know. But she wouldn't have last that long, anyway - once the liver is afflicted that heavily, there usually is not much time. My mother lasted two months after diagnosis.

You are a WONDERFUL and CARING daughter and I'm sure your mother told you how much she loved you, in actions if not in words. You did the best you possibly could, and she loved you for it.

Joyce M

Re: What I would have done differently if I would have known better

Thank you all for condolences, we had her services yesterday, and they were beautiful. We are going today to spread her remains in the ocean and have a beach party exactly as she would have wanted. I will put her picture up w a quick bio, her name was Victoria Fraser, age 55. She just turned 55 on Aug 15th.

Re: What I would have done differently if I would have known better

Elicia, I know your pain and how you are feeling. My Mom is accepting chemotherapy for stage IV cholangiocarcinoma now. She was diagnosed on July 31. At the begining, I searched information about cc on the website, and I found it seems nothing is effective for stage IV cc. But later, I got more and more information, and found it seems still has many methods are wothy to try. Although from literature search, I found almost all research paper recognize chemotherapy is "ineffective" for cc, my Mom still wants to try it.

Originally, I prefer to give up chemotherapy. Because I am afraid of that if Mom only has few month to live, I don't want her be very weak and uncomfortable. Since the research paper shows chemotherapy is "ineffective", why we still need to try it? At that time, I was very struggling with should I make a decision for Mom or let her make choice by herself. Until now, I still has such kind of problems, for example, using Chinese medicine or not, doing Qigong or not, eat some supplement or not....

I think maybe this kind of struggles  is a path that we ( Patient's family )all have to walk on. I am very sorry for your Mom passed away, but I still hope you can release your sorrow soon. Just like jmoneypenny wrote "You did the best you possibly could, and she loved you for it."

Re: What I would have done differently if I would have known better

That sounds lovely,Elicia-your mom was 3 years older than me-pretty young I say.We live next to the ocean too and its a big part of our lives.You did really well in very tricky circumstances,I still marvel at that that trip of yours.
                                 Very kind regards    Janet