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Old 09-24-2012, 05:00 PM   #1
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daughters need advice!!

My beautiful mom was diagnosed with pancreatic cancer last May, (2011) she was fortunate that she had some of the signs and symptoms (stomach cramps and mostly pain in her back). About a week later, she finally went to her internist who sent her right to the hospital because he didn't like how her eyes looked and she was becoming jaundice. They did some tests and within a few days we knew what was going on. Luckily, my mom was a candidate for the "whipple" surgery. It was a nightmare for my sisters and i as we waited over 7.5 hrs for the surgery to be completed. The surgeon said she did really well but will need lots of rest. After 7 weeks in the hospital, mom went to rehab to help her get stronger. We knew that PC is the worse cancer to get but my mom was strong and a fighter. She started her chemo and radiation in August of 2011 and February 2012 she was cancer free.. needless to say my family was thrilled but this past May my mom had some tests done again and the cancer was back. This time it is really taking a toll on her. She has chemo but she is so weak, tired, has no appetite and her coloring is not good. She doesn't do anything because she is so weak and we believe depressed as well. I just went to the oncologist with her and I spoke to the dr in private..i wanted and needed to know the truth..what is really going on and what can we expect. The dr was honest with me, told me that the chemo is not agreeing with my mom, that it doesn't seem to be working. Sadly, I agree with her and I had to know....what is the plan now???? The dr sent her for a MRI and we just got the results...it is not good, there is fluid around the pancreas and now she has bloating in the stomach from the fluid. The dr will stop chemo and believe she has less than 3 months. my 2 sisters..I am scared, nervous for us but more scared for her. What will she experience?? How do we know she is at the end??? She is hardly eating and sleeps all the time...The most important thing is that I don't want her to be in any pain or suffer..Someone please respond. I want to be prepared because I know she is very ill.. I love my mom so much and of course i am crying as i am writing this, i cry when i leave her and I have been saving every voice mail from her...don't know if it will be the last time I hear her voice....



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Old 09-27-2012, 06:19 AM   #2
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Re: daughters need advice!!

Hello B,

I'm sorry that I didn't get back to you sooner. Thank you for taking the time to reach out to me in my posting. I'm very sorry for what you and your sisters are going through with your mother. I know how scarred you are. As you know I am dealing with the same thing with my younger sister, and I just lost my Mom this past October. It has been over whelming to say the least.
The only advise I can give you is to take care of yourselves. You will need your health to get through this. The stress can do a lot of damage. As I am finding out. A least you have your sisters. Be kind to each other, and treat all concerned the way you want to be treated. This will also help your mother, at this point I can tell you that she is worrying about her girls. I would get hospice involved, it will a great relief for all concerned.
My thoughts and prayers are with you.
L

 
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Old 09-29-2012, 12:25 PM   #3
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Re: daughters need advice!!

Hello, I am so sorry to hear of your mom and family's situation. Cancer is a very scary disease and I know your mom appreciates her daughters love and concern. I am a hospice nurse and first, you should get hospice involved. Hospice is available for most people ( depending on insurance) for anyone who has 6 months or less to live. Hospice is for the whole family...loving caregivers who surround the pt and their families. It includes a medical director, nurses, home health aides, social workers, volunteers, spiritual counselors and many other therapies. The goal of hospice is comfort care when someone decides or MD recommends no further treatments like chemo. Comfort meds for pain, anxiety, nausea, vomiting, and fever should be made available immediately in case needed. Please check with your mom's MD and or hospital social worker. My love and prayers go to your mom and your family.

 
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Old 09-29-2012, 05:12 PM   #4
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Re: daughters need advice!!

Thank you so much for reaching out to me. My sister and I were visiting with her today. She has been complaining that her stomach, (which is bloated with fluid) was hurting her like cramps but once she went to move her bowels, she felt better. She also complained that her stomach felt hard...which does not sound right and is not normal. If she is only bloated from fluid would her stomach feel hard??? She also said she can't eat because she can't get food down. Wish her dr appointment was before Wed. My mom is very stubborn and wants to be so strong and brave for my dad and us. I am sure that the dr will suggest hospice, I just want to know how long do I have with my mom..

Thanks again, it is so comforting to have outside support!!!
B

 
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Old 09-29-2012, 05:18 PM   #5
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Re: daughters need advice!!

Thank you L.

I know what you mean about my mom worrying about my sisters and I. I am sorry to hear what you are going through and I understand about taking care of us as well..we are all stressed out and we are exhausted. Dr. appt for mom is Wed and i am sure she will bring up hospice. Please feel free to reach out to me for support, it is comforting to have communication with people going through the same thing..

B

 
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Old 09-29-2012, 11:40 PM   #6
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Re: daughters need advice!!

Hello B ~ So sorry to hear about your mom and knowing that you are losing her to cancer.

My dear mom had biliary duct cancer (cholangiocarcinoma) which is quite similar to panceatic cancer but by the time it's diagnosed there is no treatment other than palliative care (keeping her as comfortable as possible).

This came only months after losing my younger brother so you can imagine how upsetting this was for our family.....feeling as if we were getting the wind knocked out of us and in the ring for another round without a chance to catch our breath.

But somehow we made it through......as difficult as it was.

The doctors told us that she only had a few months to live and that as the bile levels went up in her blood that she would be less able to eat, have more nausea and some pain. And that depending on how things went it would be a matter of controlling the pain OR her growing more and more tired and confused and eventually going into a deep sleep (coma) and eventually pass on.

My mom opted for the second scenario and that is what happened.

Sadly, my mom was healthy as can be prior to being diagnosed. She walked 4 miles a day & had never had any health problems other than a bout of pnuemonia and out of the blue when going to the doctor after falling on the handle of her suitcase to check for a broken rib the exam revealed an enlarged liver and with further testing, the cancer.

Our family decided to have one last vacation together before my mom wasn't able to do so. At the time my hubby and I were sonwbirding down in FL as a respite after losing my brother and so my other brother and my dad flew down with my mom and we spent a week together.

She was weak and in pain but the doctors gave us a plan to manage it so we could make the best of this time together.

My brother and I tucked her in each night and we all took her out to a restaurant she had always wanted to go to that is only down in FL. We played games and she laughed and I put together a Bath and Body works gift bag upon her arrival which I used to help her shower and bath one night, something she wasn't able to do herself and told her it was her Spa Day.

When I dropped her off at the airport with my brother and Dad as she hugged me she told me it was the best vacation she ever had.

And 3 months from that day she was gone.

So my advice would be to have Hospice come in to keep your mom as comfortable as possible and when the good moments are there do something special together.

My most precious moment came when my brother & I tucked my mom into bed together each night of that vacation like she use to tuck us in with love and hugs and kisses.

And when I bathed her and rubbed her down with the fragrant lotion and she thanked me telling me how much she needed that.

So salvage the moments and take care of one another during this time.

The best gift you can give your mom is to let her know that you will be okay and will be by her side on this journey surrounding her with your love.

Say the things you want to say and give her the gift of peace and love each day.

As far as what to expect, everyone transitions differently but Hospice pretty much knows the course and will go over that with you. They will be able to control any pain and by what you describe she is nearing her time.

Some towards the end will all of a sudden get a burst of energy, euphoric and almost as if appearing well again only to go to worse and eventually passing on.

For my mom, she pretty much slipped into a deep sleep.....they called me and told me her time was near and I flew from Florida to her.

When I arrived my dad and brother had been there and I went to her and as I hugged her she moaned what I heard as "I love you" and passed on.

She waited for me so that all of us were with her and with one another....that's the way she was, always thinking about what was best for everybody and making it happen.

I wish you and your family much love and peace at this time as you prepare for this final journey with your mom.

The blessing I saw in all of this was that we had time to prepare and to say the things we needed to and to be there to make the passing easier for both my brother and my mom.

Talk to her even when you feel she doesn't hear......she does and as difficult as it may be, give her permission to go when you feel the time is right.

Before I got on my flight the nurses put the phone to my mother's ear and I told her it was okay to go, that I was on my way, but if she needed to go before I got there that it was okay.

But like I said, she held on and drew her last breath to let me know that she loved me....a gift that I will always cherish.

I hope my sharing my experience has helped in some way and I send you (((HUGS))) and prayers, asking that the Lord be near you and your family during this difficult time.

~ Ivory

Last edited by Ivorygirl; 09-29-2012 at 11:47 PM.

 
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Old 09-30-2012, 07:26 AM   #7
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Re: daughters need advice!!

Hello B, please know that my prayers are with you and your family as you walk this journey with your mom. Someone with pancreatic ca usually develops ascites or fluid in the belly. The abdomen can become bloated and feel hard. Sometimes the MD may suggest tapping the abdomen for fluid or put in a drain to continually drain the fluid. Of course, your mom would be followed by a visiting nurse or hospice nurse to help with symptom mgmt. It is normal to refuse food as the stomach feels compressed. It is normal to feel weak and tired as the body is dealing with everything and taking her energy. Your mother's MD can order anxiety meds and any other comfort meds NOW if your mother needs them. You do not have to wait until Wed or until she gets nursing services in. Please start to research your local hospice agencies or ask around. They are not all the same. I chose the company I work for because it has a great reputation..stable staff and it is large enough to have available staff. Please also remember that your mother may not open her heart with all her fears to her family. It is normal for a mother to want to protect her children and spouse. That's when she really needs the support of hospice staff so she can talk freely about what she is going through.
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Old 09-30-2012, 07:43 AM   #8
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Re: daughters need advice!!

Ivory,

Thank you so much for sharing your personal experience with me (and so many other people who may be suffering as well).Your story was beautiful and I am so glad that you had that special moment with your mom and she waited for you!!

My mom is the "ruler" of the family. She is always smiling, everyone loves her and she has so many friends in the adult community where she lives. My mom was a very intellignet business woman and both my parents owned their own business until they sold it to enjoy their retired life together. My mom too was also very healthly, although throughout her life has broken more bones in her body than anyone I know. She always puts her family first, my dad, 2 sisters and her 3 grandchildren who are now 17, 20 and 25. The two youngest ones are my children. My mom wanted to make sure that all of us had a college education and to make sure we could all be independent women in case we had to support ourselves. I am the only child now divorced and raising my two kids by myself wasn't easy but with her guidance and support I did it. I don't know what my life would have been like if I didn't have her encouragement or always asking for advice.

My family is very close and this is going to be very difficult for all of us. I am concerned about my children too, they are very fortunate to have grown up with my parents and my ex-mother in law with whom they are close too as well. They did know 3 of their great grandparents but all of them passed when they were young so they have not experienced a family member so close to them dying.

My mom used to be so energetic and seeing her the way she is now is heartbreaking. She won't wear her dentures because they are too big and uncomfortable and refuses to leave the house. My dad also is ill, he was diagnosed with lung cancer this past June and is also inoperable but thankfully he is fighting with everything he has. My sisters and I spoke with him last weekend to kind of "prepare" him about mom. He is very upset to say the least, this Oct, they will be married for 54 years and together since they were both young teens. Luckily, during the day they both have home health care nurses who take care of them. They cook, clean and help both of them with showers. My moms sister will be flying up from FL next week and I do understand what you mean when you said your mom waited for you.. I think that is what my mom will do, she will hold on until her baby sister is here.

Wednesday, Mom has an appt with the oncologist and that is when the subject of hospice will probably be brought up. I am going with her and so is my younger sister. At this time, my mom who is so brave will be the one in charge as she always is. She NEVER takes any kind of medicine, her stomach could never handle it so I don't know how she will feel about morphine. Right now, she is not in any pain. She does say she sometimes has cramps in her stomach, (which now is very bloated and hard as a rock. the dr said she has fluid around the lining of the stomach but i don't know why it is hard) or discomfort in her back. I think she is looking jaundice again, and that is probably because of the liver bile being blocked. The dr said she will pass not from the cancer but complications from another organ. My sister said yesterday that when she was sitting next to her she smelled an odor. My other sister said she smelled it a few days ago. Not sure what that means but i did google it, and it could be the release of toxins from her organs beginning to shut down...

We all plan on letting her know when the time is right that it is ok for her to go...she would want to still remain strong and in control in the last days and that is how I want to remember her. I don't want to watch her suffer or be in pain or discomfort but I do want to be able to hold her, to tell her how much I love her and to thank her for always being the best mom in the world and one of my best friends....and to let her know she doesn't have to worry about us...

thank you again Ivory and everyone else. This is a terrible disease and I am grateful that for the support I have received!!

B

 
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Old 09-30-2012, 09:12 PM   #9
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Re: daughters need advice!!

(((((B))))) <<<< those are cyberhugs

Your mom sounds like a beautiful soul and I can only imagine how difficult it is to see her so weak when she is the one who usually takes care of everybody else.

How wonderful that she was there for you when you were divorced and raising your two children, she truly sounds like a remarkable woman.

Like you describe, my mom was the matriarch of the family....and she had one sister who she basically raised and pretty much was the glue to our family.

The most difficult part for her and for us was to see her become so weak as you are experiencing with your mom, however, there was something to be said about the beauty in the journey when we were able to take care of her and make her feel special like she did for us all of our lives.

If I may suggest, take some time to do some hands on comfort for your mom such as putting some cream on her legs and feet when she is bedridden. Brushing her hair or changing her socks if she likes that.

Also, try to take turns being with her so that you don't exhaust yourselves as a family.....this also allows you each to have more one on one with her.

Our family is very close and openly talked about things.

My brother actually told me that he would always be near me even after his passing and I asked him how I would know.

He told me to look for a butterfly especially when out on the water.

Within days of his passing when I mentioned his name a butterfly would suddenly appear......we live on the water and go out boating and shared a love of boating with my brother. Many times while out on our boat a butterfly will come to the bow of our boat and like a porpoise would appear throughout our venture and then float off when we came in.

I feel my mother's presence since her passing as well in the most remarkable ways that only I can understand she lets me know she's near.

Not everybody understands this but if you're open to it love can transcend all distance and time even between heaven and earth.

I know this is so heartbreaking and I still cry missing my mom's daily presence in my life especially the daily phone calls we shared.

Still to this day, I go to reach for the phone to tell her about my newest news or wanting to ask her advice and that is the hardest part of it all.

I am sorry to hear about your dad's failing health as well, this can't be easy for you and your family. I am sure that your mom is worried about your dad as well so easing her mind and letting her know that you will all take care of your dad will be something she will feel relieved of.

I was able to ease my brother's worries about being there for his 6 kids to make sure that they remembered him. To this day I have kept that promise by taking each one of them for one week during the summer. My sister in law has told us what an incredible gift that is to her kids in keeping their dad's spirit alive in their lives.

When we met with my Mom's oncologist it was good to be part of assisting my mom in making the best decisions regarding her final journey and the doctor was so compassionate to making sure that all her needs were met and respected.

The oncologist was very aware of my mom's fears, like your mom she didn't want to have too many meds. So she started with Vicodin pills and when they didn't help she was advanced to pain patches to help with breakthrough pain. And when time comes that the patches don't help, they will give her meds through an IV.

My mom thankfully didn't need anything in an IV until her last day....she was a fighter and just wanted to be as alert as possible but controlling the pain as much as possible.

I hope that once you meet with the oncologist some of your concerns will be alleviated once you know what to expect.

Again, I wish you peace and much love during this time.

The best gift you can give your mom at this time is peace of mind to know that you and your family are going to be okay, that you will take care of one another when her time comes and continue to live your lives the way in which she has taught you.

My daughter's college Graduation was only weeks after my mother's passing, she wanted so much to be there and picked out a special necklace of hers to give my daughter to wear on her Graduation Day.

My other daughter's High School Prom and Graduation was only a day following my brother's funeral. It was my mom who said that we needed to celebrate each and every occasion and even after losing her youngest son fully celebrated my daughter's festivities because that is what she did and what she taught us to do.

And so, somehow we find strength during these difficult times and learn that the best way we can honor our mothers and loved ones is to live in a way that they did, with love and joy carrying them each day with us as we do.

One day at a time, B., and know that you will find the precious moments even on the journey ahead. And that all that your mom has given to you will carry you through the difficult days ahead.

(((((HUGS)))))) from me to you ~ Ivory

 
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Old 10-01-2012, 12:10 AM   #10
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Talking Re: daughters need advice!!

Hello,
I read your condition i just can say tack care you and you mom and sister. I do not believe in god but my wish is to have safe future to your family...

Last edited by hb-mod; 10-02-2012 at 05:43 AM.

 
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Old 10-15-2012, 01:16 PM   #11
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Re: daughters need advice!!

Hi B ~ Just checking in and sending you ((((HUGS)))), prayers, love, and peace your way knowing that you and your family could use them.

I am thinking about you and hope that you are feeling the love of your family and friends around you as you go through this difficult time.

((((HUGS))))) and prayers from me to you ~ Ivory

 
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Old 10-15-2012, 06:52 PM   #12
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Re: daughters need advice!!

Thanks so much Ivory,

I must tell you, I have the best family EVER!!! All my family has been flying up from California, Florida and North Carolina. They all want to see her and spend time with her. My mom was thrilled and enjoyed every moment but was totally exhausted, (even lying in her bed most of the time). Right now, she is in the hospital. She just had her stomach tapped....5 quarts of fluid!!! She feels much better now but is having difficulty urininating and her urine is brown and has an odor to it...We have to see what is going on with her kidneys!! it just saddens me so much the most important thing is for her to remain comfortable and remain brave!! Thank you so much for checking in on me....you and this site has been so supportive!!! I just hope that one day SOON they find a cure for pancreatic cancer.

B

 
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Old 10-16-2012, 01:18 PM   #13
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Re: daughters need advice!!

Hi B.....so glad that you have the support of family.

Yes, it warmed my heart when our family came together in much the way you describe.

I tried to space it out so my mom had some rest time inbetween the visits, but as much as I did so, she was exhausted much like you describe but also enjoyed seeing everybody too.

The dark urine you are speaking about could be the result of her bilirubin levels increasing which produces "tea colored" urine.

It is all part of the progression of the cancer.

My mom was like your mom of wanting to brave it out....and she did to the very end.

I wish for you and your family as many special moments with your mom as possible.

The time I spent with my mom at the end is forever in my heart. There were so many special moments we shared in those last weeks that I shall forever cherish.

I am hoping the same for you and your entire family.

(((((HUGS))))) from me to you ~ Ivory

 
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Old 10-16-2012, 07:25 PM   #14
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Re: daughters need advice!!

Ivory,

You are so sweet and so understanding.....I so appreciate you keeping in contact with me. What do you mean by the billirubin?? What exactly does that have to do with her situation? I am assuming its not a good thing

Today my mom was really good!! In great spirits, very chatty and was awake the whole day. She is still having difficulty urinating and the dr is concerned that even with an IV she is still having a hard time urinating. The kidney specialist doesn't think that she is having a problem with the kidneys. She was going to do an ultrasound on her stomach to see whats going on. She had diarreha today and they are doing another sample of her stool and urine.

The most important thing is that she feels comfortable..the hardest thing is look at her, watching her and fade away...I know I am being selfish and i should just be grateful that she is calm and comfortable. A priest came in to talk to her, just to chat and she told him (according to my dad) that she is not afraid or worried...maybe thats a good thing but I am afraid and worried. The thought that I will be losing my mom is destroying me and I must come to terms with it because she is not going to get better.....I need to treasure every second with her everyday!! Thanks for the hugs....I just don't know what to expect from here on in

B

 
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Old 10-16-2012, 11:04 PM   #15
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Re: daughters need advice!!

Hi B. ~ I hope that I didn't cause you undue worry.....you had said that your mom was already appearing jaundice which is seen when there is an increased level of bilirubin in the blood.

My mom had this with her bile duct cancer (which pretty much has the same symptoms and prognosis as pancreatic cancer)

This usually occurs when there is a blockage within the pancreas/bile duct and/or liver causing a back up of bile into the blood stream.

Usually when there is jaundice (yellowing of the skin and sclera/eyeballs) there is also more bile in the urine as the kidneys try to rid the body of the excess bile which gives the urine a darkened or tea like appearance.

You will also see an increase in diarrhea since the bile that is usually released to aid in digestion is no longer available to digest the fats which irritate the digestive system leading to diarrhea.

They do have a medication which can help with this that your mom can take before meals to keep things more in control.

I share this from my personal experience and know how understanding what's going on helps in terms of decreasing anxiety.

I am so glad that your mom had a good day today and that you are taking each moment and cherishing it.

Everyone is different and your mom's time will come sooner than you are ready for no matter when that may be.

But with pancreatic cancer they say 4-6 months and my mom was diagnosed on New Year's Eve and we lost her on March 23rd.

And like you, it was so difficult to watch her fade away and I selfishly wanted her to be around longer than what the doctors told us she would be.

My mom, like yours, was calm and full of such grace......she wasn't afraid and was more concerned about us and things being in order. She even taught my Dad what she called "Laundry 101" and how to use the microwave!!!

So cherish those moments, soak it all up and all the love that you have for one another.

Be there as a family, surrounding your mom with love in her final days. Her seeing that love of family and the peace it brings will be your greatest gift you can give her at this time.

A mother's love crosses over all boundaries, it really does.....so remember this as you make this journey with her.

I wish you much peace on this journey you are making, as sad as it is, it also holds much beauty in the sense of being able to help your mom through this transition with love and grace.

I am thinking about you and will be here for you if you should need an ear, a few prayers or an extra hug or two.

~ Ivory

Last edited by Ivorygirl; 10-16-2012 at 11:13 PM.

 
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