Pray for my sister (I am new to this board)

LilSisterNY

Pray for my sister (I am new to this board)

LilSisterNY

Hi,

My sister (agee 48) was diagnosed back in 2/09 with Stage IV breast cancer.  She had a double mastectomy 2 years ago as well as a hysterectomy.  She had radiation and chemo and seemed to be doing well.  Until this year.  Back in February she went to the ER with chest pain and it she was diagnosed with fuid in the chest cavity that tested positive for breast cancer.  She had been in & out of the hospital with recurrent bouts of this fluid effusion and procedures to stop the reoccurences did not work.  Her oncologist at the time was not honest with us (or her) when asked what the future holds.  Due to issues with her liver she was not able to tolerate aggressive chemo treatments.  She was uncomfortable with this onc, so she found a new doctor about 2 months ago.   This new MD did many tests (PET scan, bone scan, etc.) and we found out she has an inoperable tumor in her lung that cannot be radiated due to scar tissues, and 2 others in the chest cavitiy.  She also has tumors on her spine, her bone marrow was positive for the cancer and some lymph nodes.   Her options for treatment were limited to xeloda and the PARP Inhibitor clinical trial program at Yale.  Since she was too weak to travel, that was no longer an option.

Because of her diagnosis, we started looking into hospice.  We've heard so many stories of people who waited too long and wished they had contacted hospice sooner.  While my sister was in the hospital 3 weeks ago, she requested to speak with hospice. on her own and asked that we attend the meeting.  We thought we were going for an informational meeting but apparently she had already been certified to hospice with her condition listed as poor.  Since there was nothing else they could do for her breathing in the hospital, she was discharged to hospice the next day.  She indicated that she wanted to go home and face the future with dignity, rather than back & forth to the emergency room with hospitalizations that can't help her.

I cannot even describe the shock when hospice showed up 10 days ago and told us she would go quickly, in about a week to 2 weeks!!!  We thought we were bringing hospice in early and that she'd have some quality time at home with the understanding her condition would worsen over time.  We had no idea that things were this bad...

She is suppposed to receive Roxanol and Ativan every 4 hours and was taking oxycontin 3 times a day for breakthrough pain.  However, since she sleeps most of the time she is probably only getting these meds 3-4 times per day.  She started chewing her oxycontin pills this week so hospice switched her to a duragesic patch 125mcg.  She sleeps most of the time and doesn't eat (maybe 1 or 2 spoonfulls of applesauce or pudding) and a glass of water per day.  When she gets up she is completely disoriented and talks about random things.  I go back and forth wondering what happened in the last 2 weeks and why the sudden decline in condition.  Could it be the narcotics?  

It is so hard to see her like this and is very hard for my parents as well.  At times I want to cut back on the meds so see if she'll become more coherent but then I also know she needs the meds and it's not going to change her prognosis anyway.

 Sorry to ramble, it's all just such a shock.  Three weeks ago we had discussions in the hospital and now she is either sleeping or unable to communicate when awake.  This is difficult waiting and wondering "when"...

Thank you for letting me get all of this out and please pray for my sister this Thanksgiving day.

Thank you!  Lisa 

scarlett1955

Dear Lisa,

I read your note and it broke my heart.  It seems that cancer is a very, very unpredictable disease. I've heard of situations as your sister; one woman in my support group was told the night before she wasn't expected to live through the night.   She and her husband were in shock.  She passed away early the next day.

I'm a 12 year breast cancer survivor and I've met many people who've endured this disease, some better than others, depending on the aggressivness and the stage cancer they have.  I know you want your sister to be more coherent but also keep in mind if she's in that much pain that you do not want her to suffer.

I am so sorry Lisa.  I don't know your sister's name but I will ask God to watch over her, you, your parents and family and friends.

God is with you.  He is right there, right now.  I pray that your sister is in minimal pain.  I pray that you will be given calm and peace during this difficult time dear.

Love, Linda

LilSisterNY

Dear Linda,

Thank you so very much for taking the time to reply to my post.  

I am deeply saddened to say that my beloved sister, Carol Anne, joined the angels in heaven on Saturday morning, November 28th.  Her funeral was yesterday.  This has been a very difficult journey for all of us.  There's so much that doesn't make sense and we're having a tough time understanding how this happened so quickly. A lot of confusion, a lot of unanswered questions and a lot of sadness.

My sister struggled tremendously with her breathing the last few months .  The pleural effusions could not be managed and she was so fearful of this.  I do know that she went peacefully in her sleep and and that she is now free from the pain & suffering she endured for so long.  

Thank you again for your very kind and thoughtful reply.  I will pray for you & your family too!

Love, Lisa  

Maryiz

Lisa, I am so sorry for your loss. I have three sisters and I know how devastating it would be to lose one of them.  I can understand your confusion with this disease. Everyone's disease is different and I believe the medical field differs greatly in their practice and protocols.  I am hoping that we can continue to make progress and push for better therapies, as well as a better understanding of this disease.  There are too many young men and women dying from this disease.  I don't believe we truly understand the urgency in getting a cure.  There are all too many myths about this disease, i.e., you have to be BRCA positive to get breast cancer, when, in fact, most are not BRCA positive.  Thank you for posting.  Maryiz