It was a shock hearing this news over the weekend and something I never expected as leukemia doesn't run in our family at all. This after she changed her phone number and cut off all contact with me 3 years ago because she didn't like something I said.

Sister thought she had the flu but started having chest pains when exercising so thought maybe a heart issue or stress. On Friday she couldn't stand up and was taken to the emergency room.

At first they thought she had COVID but blood tests revealed she was in blast cell crisis. They had to transfer her to another hospital where she got a blood transfusion and received a diagnosis of APL.

She is now on ATRA and will be in patient for 90 days while they try and treat the cancer and she also has pneumonia and is losing her eye sight from the cancer.

I am not sure how to feel about the whole thing. I don't want my sister to die but I can't imagine going through all this and living in a shelter plus her untreated mental illness. Tragically this has been her life for almost 30 years. She gets independent living and finds something wrong with it and leaves to go back into the shelter system. It is never ending.

I would never tell her this but I am fluctuating between feeling like it would have been better had she chosen to not get treatment. But then I think maybe this will help her turn a corner in her life (but I know it won't because she has been at ground zero before and nothing changes).

Just feeling sad and scared for my sister.

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Final Update: My sister died January 27th.

It doesn't feel real because I talked to her Wednesday and so did my parents. She still was unable to really talk clearly because of her mouth sores but I did tell her I loved her. They said she sounded pretty bad in the morning but they called her again that evening and said she sounded a lot better. She gave no indication to them or me that she knew she was going to transition into dying starting on Thursday. I was going to call her Thursday but decided to wait until Friday to call her and tried around 1 PM her time but she didn't answer the phone so I assumed she was sleeping. She died at 4:40 PM.

I had expected she would live until at least March or so and I even mailed her a card on Thursday the day before she died that she will never get.

She died keeping her family in the dark about everything and at a distance.

On Monday my parents were finally able to talk to the doctor and the nurse who was with her on her last day. He said that she refused all IV's, and all pain medications and even water that was offered to her. He checked in on her every 10 minutes all day Friday and she did not appear to be in any severe pain though he did offer liquid oxycodone which she declined with a grunt as she was not able to verbally speak. He said her eyes were open and she appeared to be looking at things around the room ( I wonder what she saw as I have heard of people seeing loved ones, etc before they die). The last and final time he checked on her she was gone and he said her face looked peaceful and relaxed. More than likely she bled to death internally since they had no indication of cardiac arrest and she did not have trouble breathing. My parents are refusing to do an autopsy and I have no say in the matter since they are the next of kin.

There's just so many emotions when someone you love dies like this and you are not even able to have one real and meaningful conversation with your loved one because they don't believe they are really dying and before she was unable to talk she was cycling manic and paranoid for most of the time and didn't want to hear anything negative. So everything that should have been said was left unsaid, except I love you, but did she even believe that? I will never know.

I am happy she is finally at peace and that she died safe and warm and taken care of in the hospital instead of the street. I just wish she didn't have to die to get that safety and peace and comfort she had been searching for most of her life.

I told my parents I would make a memorial video for the family and even that is really hard because there are so many decades of gaps in regards to pictures, etc that is bringing up so much traumatic stuff to deal with. I am lucky though that she sent me a bunch of pictures in 2019 but that is the most recent ones I have.

For so long I had to compartmentalize the fact that my sister was homeless. I would think about her every day but tried to push the homeless part out of my mind because it was too hard to think about.

When my mom told me that the funeral home would take her body and send her belongings to them it really hit me how painful and difficult her journey has been on and off since she was 16 years old. The only thing she had with her in the hospital was a green and white striped bag that contains most of her life. Thinking about that is devastating. Wondering what is in that bag is even more devastating. I checked my PO Box today hoping she had sent me a letter but it was empty. I am hoping that she wrote us all letters and they are in that bag.

My parents are bringing my sister home one last and final time, this time it is forever.
Helpful Answer (13)
Reply to sp196902
Tynagh Jan 30, 2024
Condolences on the passing of your sister. May she rest in peace and may you find comfort knowing that doctors and medical staff took care of her during her transition. Sending hugs.
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I am so glad, SP, that when the doctors ask your sis if they could put her on a vent, that she said no to them. Their next step would have been to have social workers do the magic trick where you or parents are as the next of kin the decision makers, and would want permission to treat. It is better she be allowed to go. If she continues to refuse blood transfusions she will sleep away and slip away very peacefully and very quickly almost certainly.
Thinking of you, SP.
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Reply to AlvaDeer
ElizabethAR37 Jan 1, 2024
Sounds like time to consider Hospice or palliative care--if sis would accept that on some level, she likely could die more peacefully.
Dear SP
We are with you.
Those of us who have our own loved one seemingly adrift in mental illness know this day will come for us all.
Wishing you and your parents peace and much courage as you accept your sister’s autonomy to choose her own path and honor her life.
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Reply to 97yroldmom

Update: 1/13/24 - Per my sister she is now on comfort care at the hospital. She has stopped all medications (whatever they were I have no idea). Yet she tells me she isn't going to die and I really think she expects some kind of miracle or that the hospital is wrong and she will walk out in a few months. She won't. I told her that comfort care means that she is going to die but it's like she is not hearing me.

She also said the medications she was on were causing her mouth sores and bloody stool, maybe but blood cancer can cause them too.

I thought I would be happy that she made a decision but I am sad and mad all at the same time that her decision is to die. Especially when reading other AML forums about how people have done the treatment and recovered. Not many even talk about having bad side effects from the treatment either. But my hands are tied (as my parents say) and there is nothing I can do to change her mind and get her to consider fighting. She said my time to help her was when she asked me to come to VA and take her to NY. It wasn't even like she was saying it in a mean way, just as a matter of fact. I know I did the right thing but it was hard to hear.

My only hope is that she will die in her sleep before things get really bad for her. I don't want her laying in the hospital as the cancer kills her slowly organ by organ.

I always thought some day my sister would get things together and some day we would be close the way I always wanted us to be. But that some day is gone.

Even as she lays dying there will never be long sisterly talks or any full healing of her trauma from living on the streets and suffering from her mental illness. There will be no healing for me either as she has effectively shut down because there truly is noting left to say but I love you and even those words seem almost hollow now because of so much that will be left unsaid.

I envy those rare few who get the gift of reconciliation before an estranged and troubled family member dies.
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Reply to sp196902
AlvaDeer Jan 13, 2024
Sp, bipolar doesn't go away.
There IS healing in being able to recognize the end and give the comfort of "I love you".
What was unsaid was never going to get said, and would have made no difference in anything. Grief is still the walk that will be taken here.

I think that you comforted yourself by some magical thinking that things might change/could change for your sister "some day". And while she lived they could have (unlikely, but possible).
But on AC you have seen children live TORTURED lives until their ABUSIVE parents died, just hoping against hope that some sacrifice of theirs would bring the words "I love you; thank GOD I have you". It does not happen. It does not happen. It does not happen. Redemption is that rare thing we can find in the movie theater.

I am so relieved that your sister has chosen comfort care. Yes, leukemia can cause mouth sores and is in fact an early sign of it at times. BUT the mouth sores of the chemo for it would make your sister think she swallowed fire every time she tried to swallow her own saliva. For what? Some dim and very unlikely hope for a cure, so that you could hope her bipolar would go away "some day".

I am so sorry for your grief. I had a brother who was just about attached to my hip we were so loving and so alike genetically, and so a support to one another life- long. I can assure you, there is no more comfort in losing such a one and traveling a SCARY world without him. Which comes to us all with loss. Grief is grief. It awaits us all.

Your sister will speak nonsense now, as well as perhaps some not nonsense. Her saying "Your time to help was when I wanted you to bring me to NY" is, of course, nonsense. But she believes it, so it will hurt you. OK, bang. Done. That hurt. There's a whole WORLD of hurt here for a life spent bipolar. A whole world of it. That's the cruelty of it. But YOU and YOUR PARENTS didn't do anything cruel.

I am sorry. But again, I am so happy your sister will now be medicated to comfort. I do not believe for a nanosecond this would have ever had any other outcome. Even if it had--to what end? Facing down death is facing down a finality. And we all will face it, have faced it, will make our own journey into it. There is no philosopher out there who does not say that final journey is done alone no matter how much love at your side.

I am so sorry for YOU. But for your sister I cannot, given what she has had to endure of life, mourn for her now being in comfort at her end. I spent my life as a nurse. Doctors are STILL not honest with their patients about what that end fight can look like. Trust me, CIA nor any others, have torments that can BEGIN to compare to what our medical system offers in some cases. I am glad that doesn't have to be the final torment your sister endures. I have seen people BEG for death.
I am so sorry. I am sure I have said too much. But I am just so sorry.
Sorry sp,

It’s so difficult for all involved watching your sister struggle with illness and the decisions she struggles to make. It is a difficult situation even without mental illness. Your poor sister, has an added degree of pain in this , and so does the family.
Helpful Answer (7)
Reply to waytomisery

I hope and pray your sister receives a peaceful and quiet ending to a difficult life, and for you as a so often heart broken sister to be at peace with it all
Helpful Answer (7)
Reply to Daughterof1930

SP, I'm just so sorry. Your love for your sister is so evident in your writing about her.

Helpful Answer (7)
Reply to BarbBrooklyn
sp196902 Jan 30, 2024
Thank you Barb.
I hope it brings you comfort knowing that the final words to your sister were loving and not angry. She's at peace. And I hope you and your parents find peace knowing that she's free of her demons.
Helpful Answer (7)
Reply to NYDaughterInLaw
sp196902 Jan 30, 2024
It does. Thank you.
SP, I am so very sorry.

I know you know this, but there was no way "Spring" was going to happen. Without pouring in almost daily blood she couldn't survive. Even IF she couldn't survive.
And not so much she was bleeding inside but that her bones marrow could no longer make the componets needed to make blood for her. As I told you, the not having the red blood cells is not a hard way "to go" relatively. And I told you of my friend making that choice in the ER. Finally. After a torturous fight to live.

Your Sis died as she lived, SP, and in my experience most people do. And however we may judge how they lived, it was how they lived. As Oliver Sacks said, the mind beset with mental illness and dementia has a REAL world. It just isn't our world. Did he die of Leukemia? I seem to remember he did? Or another blood dyscrasia.

You are right. I believe she had very loving care. I was an RN, and when once my brother worried over a friend who left everyone, who would care for him, a man with HIV, I told him the loving nurses and docs in a hospital would care for him. It was the best part of my job, that the homeless got the SAME care I could give to Milton Friedman when HE was my patient (the admins sent nicer flowers, that's all) .
And sometimes some people are more comfortable with that--with the loving care of strangers0 then with family believe it or not. Sometimes family is the worst to deal with issues, and the least trusted.

I agree with others. Your words of "I love you" is all we have. It is the only worthwhile gift we can give to another EVER. It asks nothing. It is simple. It is that you have memories of love. And you will love even when you cannot understand. And that is what you and your family did.

She is at peace. Grieving is so much easier when all issues in a relationship are resolved. It is harder when there are "what ifs" and wondering. But your sister is at PEACE and free.

SP. It is where we are ALL HEADING. I know that's hard to get, but as one of the Buddhist teachers says "We are all just walking one another home". Or in your case, TRYING to walk her home; she wanted to do the journey on her own. And that was HONORED. She may have suffered from her own expectations of family, and family's hope and expectations of her for long enough. Life can become too hard.

My love out to you. I knew we hadn't heard from you for a few days, knew that couldn't be good. I wish peace on your Sis. She played her cards as they got dealt to her, and she did it her way. And now she is free, and you NEVER HAVE TO FEAR FOR HER AGAIN.
Helpful Answer (7)
Reply to AlvaDeer
ElizabethAR37 Jan 30, 2024
Very well put.
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I am sorry that you and your family are grieving. And at the same time probably thankful that your sister is no longer in physical, mental and emotional pain.
Helpful Answer (7)
Reply to Grandma1954
sp196902 Jan 30, 2024
Thank you.
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