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Hello after a while - update

nhldaughter
Posts: 69
Joined: Nov 2010

Hi friends.

Life got really tough.  Those who read my earlier posts and responded and consoled me, thank you!  I believe in my latest post I updated you all that after the 10 days of the ICU and the month hospitalization (due to C-diff which lead to sepsis) at our local hospital my mom was diagnosed with a second cancer of adenocarcinoma type.  As you may recall we rushed her to City of Hope and after some workup they could not find the origin and called it CUP (cancer of unknown primary).  They suggested no second cycle of REPOCH as it wouldn't address the adenocarcinoma and was too strong...a combined chemo to keep the large b-cell and that new cancer at bay was cooked up, this other chemo which I believe was sort of like R-CVP caused the SAME agony!  the C diff came back, it lead to sepsis, despite our plea at City of Hope to take preventive measures they didn't and hence she ended up at their ICU again.  There they poorly mananged the fluid they gave her and it lead to what they believed was heart failure.  Her lungs were overloaded with fluids too.  We had to make decisions like whether we should have her be DNR or not.  Those were the WORST days of my life.  I thought our days at the local hospital was bad, I was wrong!  Things were much tougher at City of Hope.  We spent another month there with major heart issues that came about also.  My poor mother suffered so much and we along with her.  Each one of us lost 10 lbs in those 2 months!  My dad went through some depression and we had to worry about him too. We got ourselves ready to say good bye to my mom, many times.  But, she hung on.  Even so, they told us to take her to hospice  care as no chemo is further recommended.  We as a family had agreed anyway that we would not do any more chemo.  My mom's mind and body couldn't take it anymore.  So as soon as she got somewhat stable they told us to sign up with hospice and sent us home.  We decided we would try palliative care first (perhaps we are in denial) and then transition into hospice.  Things are okay now.  Each night I go to sleep with fear and the next day I fear what will happen that day.  We keep thinking... "when will things act up?"  We've all taken off work and spend every second together.  We eat breakfast, lunch and dinner together.  We try to do fun things.  We give my mom 100% attention.  My mom has now been home for a month and she says she feels human again and has loved being home after about 3 months of misery in hospitals.  But, we all fear that time is running out.  I had a hard time logging on right now and talking about all of this. I have been pushing away thoughts from a month ago.  I never thought I would be able to have another meal with my mom or hug her standing up.  But, God saw us worthy of it.  Now we just continue to pray really hard that He see us worthy of more stable time with her.  I pray that all the suffering may be done, I pray that when it is time for her to go, that he will take her peacefully and does not give her any more suffering.  Please keep my family in your prayers.  My mom is our world, she is the reason life is worth living to us...she has three daughters and a husband who would be nothing without her.

DadysGirl
Posts: 322
Joined: Aug 2011

I can understand exactly how you feel and what you're going through and im so very sorry. You are so very lucky to be able to have this special time with her. My Dad's situation changed sofast at the end I wish we had more time with him :( I'm happy you are all taking time to be with her and wishing you will have a lot more time with her with good health. Wishing God to give all of your hearts, minds and souls the strength and comfort during this time and a very long healthy lives together to all of you... As difficult at it may be to all of you girls sometime they say it is more difficult to the spouse.

Ps. Your Mom is very lucky to have you all as her kids... They have raised great kids, it's so obvious with the love you all have for her... 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Daughter,

I can, to a limited degree, appreciate what you are dealing with. For the last year or so I had been assisting an older friend from a previous job who was dying with prostate cancer.  He had had the disease 13 years, and had been Stage IV for around seven years.  Chemo, which for Stage IV prostate is never curative, did him very badly, and he was off and on with treatments during his last two years.   His PSA would go astronomically high, and I would encourage him to go on chemo, which he did a few times, but his attitude was never good -- he was always ready to go ahead and get things over with.  His situation was different, since he had few relatives, and they all lived out of state, and more-or-less ignored him.  He was blessed to be clear-headed until around 48 hours before he passed a few months ago.  He had become skeletal, and ate nothing for the last six weeks or so, surviving only on a fluids I.V.

You and your relatives being there for your mom is a blessing, but recall that you all have lives and must care for yourselves as well.  Passing is a natural part of the cycle of life.  Realize that it comes to us all at some point.  From afar as a stranger, reading what you have written, I must say that it does not sound like there is a lot left to do for her, in the medical realm.  My mother lived with dementia around ten years, and her last two years were an agony for us, but Hospice was inevitable the last two months. 

We all pray that we have children like you toward the end of our time on this earth,

max

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Shoopy
Posts: 210
Joined: Jul 2013

Your mother is so very lucky to have you as her daughter.  I pray God provides support, comfort, and peace to all of you.

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

You are in the same place my family and I were 1 year ago.  I will pray for you!  Your family also sounds just like my family.  My sister and I slept in ICU.  My mom also with Lymphoma and also went septic several times.  And she also had fluid overload which caused heart problems.  I'm sorry to say we lost her March 16.  It has been very tough on  me, my sister, and my dad.  Life will never be the same.  I remember when my mom was home for 3 weeks.  It was the best 3 weeks ever.  I spent all my free time there.  I had dinner with her every night.  I still can't believe she is gone.  The chemo was too much for my mom.  Wish we  made the decision to stop her chemo.  You made a very good choice.  We also hoped for hospice, but her infection got worse.  God Bless your beautiful family.  All my best.

 

Emily

Mary N.
Posts: 87
Joined: Jun 2013

I sure wish all of you peace and hope that you have a bit more time.  I also agree that your parents raised a wonderful daughter..  It is never easy to loose our parents and I will keep you in my prayers. 

nhldaughter
Posts: 69
Joined: Nov 2010

Thank you all for the kind words.  Tough days are here again.  Our good days ended with the new year.  Nov and Dec were great months, we got to enjoy her temporary health  I just posted the below mesage on the Peritoneal Cancer forum.  If anyone knows anything about the catheter placement, please give me some info...  No r one knows what is going on inside her body.  Major lumps in her abdomen area, could be lymphoma or the other cancer.  Doc says Perotineal is more likely to cause fluid build up, so maybe the lymphoma is quiet?  Or maybe both are destroying her body??? Her left breast looks bigger, fuller and hurts a little.  Telling the doctor does nothing as she is in palliative/hospice care.  They just say take pain meds.  No scans, no light shed.  We just wait and see her suffer.  God help us.

 

 

Hi all,

Our struggles with my mom's PPC continues.  In one of my earlier posts I explained our situation (she has/had (?) lymphoma also, you'll see several posts of mine in the NHL discussion boards too).  In any case, they said no more chemo and sent us to hospice care on 10/30/2013.  Her CA-125 was 245 when released from the hospital after several stays of ICUs for chemo.  Two weeks ago it was 5000 and last week 10,000.  We don't know how long she has left.  For now she gets fluid built up in her abdomen very quickly.  Within about 8 days she gains 10 lbs and she's had 3 parcenthesis procedures so far, the last one took out 4.4 liters from her abdomen.  Her doctor recommended the catheter (pleurex).  It sounds scary.  She has a very difficult life as it is with major bloating, discomfort, pain, constipation and the paracenthesis doesn't do much, after the fluid gets taken out it comes back so quickly.  When it is out too, she doesn't have much  quality of life.

I want to know if anyone has had any experience with a catheter placed in.  Can you please share your experience?  We are looking into doing it next week.  Please advise.

illead's picture
illead
Posts: 540
Joined: Aug 2012

I'm sorry that I am of no help with the catheter situation.  You are going through the worst possible situation with your dear mother.  Please accept my warm thoughts and prayers.  I am hoping that although your mother is suffering she is comforted by such a loving daughter and family. 

Please know we all care here on this forum and I hope that gives you some strength,  Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1123
Joined: May 2012

Nhldaughter,

No, I have no familiarity with the placement of your mother's drain. It sounds like at this point it is not an oncology question, but a question for a general or thoracic surgeon.  He or she is certain to know where to best place it.

I have followed two loved ones in Hospice in the last 18 months, and my own mother in 2005.  

One was the mother of a best friend. She had renal and other organs fail (not cancer related), and they literally laid open her chest cavity to "relieve pressure." It became hideous.  It should not have been done; the doctors had been telling the family it should not be done, but there was no living will or Power of Attorney, and the siblings argued.  She suffered an additional, mind-numbing month due to that.

I am NOT likening that to your mom's proposed abdominal drain: a drain is a quick, easily done proceedure, and is common in pallative care, care to minimize suffering.  I hope and suspect that it will comfort your mother.  What I DID take from his mom's treatment is that the caregivers have to be able to recognize the end.  It is harder when you are a child.  We put my own mother in Hospice in 2005, and although she had a living will, and although I had a full and binding power of attorney, some of her brothers and sisters (my aunts and uncles) argued with us, and that got ugly as well.  There was no reason for it, other than human nature, I guess.  My brother and I were more-or-less tortured by their venom, despite the fact that we were doing what the doctors said was the only route, and which agreed with mother's own, stated intentions.

The other case was my older firend Gary (72). He had had prostate cancer for 13 years, and the end was finally at hand. His only family was out of state, and I got more-or-less stuck caring for him and getting him to the cancer center. This, despited the fact that I had no authority of any kind in his case.  His closest relative would come down once every two weeks or so, but Gary was in ICU or on the oncology floor most of the time, clearly terminal.   They would not discuss Hospice until way too late. When he finally went to a very nice Hospice facility, he died in three days. He should have been there months before, for his welfare, and everyone else's.  Be very clear: the oncologist's said there was NOTHING that could be done for him. It was clear-cut.  There was no ambiguity, no alternatives. 

What I learned (to restate) from these recent,  agonizing experiences is that the most loving, humane thing to do is being able to recognize the end.  Passing is a natural part of the cycle.   Know that the surgeon will know what he is doing.  The cancer doctors are not being mean or irresponsible by not running further scans or tests. 

Following my mom's last stroke, I met her gerontologist in the ER and asked her, "Is it a rupture stroke or a blockage stroke?" The doctor looked at me and said "I have no idea." I said "What do you mean 'you have no idea' ?"  

She looked at me and said, "We have run no tests. It does not matter what type of stroke it was. This is the end."

I was stunned, but later realized that the doctor was totally correct.

Bless you , and bless your mom's last days, whenever they arrive .

max

 

Rocquie's picture
Rocquie
Posts: 496
Joined: Mar 2013

Dear Rory,

I am so saddened to hear that your beloved Mother continues to suffer with her health. As a result, the entire family is suffering. I want you to know that I am thinking of you and I have wondered how your Mom is getting along since I became aware of her struggle. If I remember correctly, your Mother is not very old? Bless her and I pray for your determination and faith to help you meet each new day. 

As the days and weeks come and go, be assured you are with me in my hopes, thoughts, and prayers.

Love,

Rocquie

 

allmost60's picture
allmost60
Posts: 3171
Joined: Jul 2010

Dear Roya,

   I'm so sorry your mom is not doing well again. I don't know anything about the catheter placement, but did a quick search and found a web site that might help.pleurxcatheters.wordpress.com. I'm saying prayers for your dear mother. You have all been through so much for such a long time now. I remember when you first came to the group back in 2010. God bless you sweetie, and remember we are here for you.

Much Love...Sue 

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