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.
My own LO recently declared she did not hit her head in a recent fall. Despite visable blood on the carpet. Despite seeing blood on her hand after touching her hair.
Didn't WANT it to be true - so decided it was NOT true.
Seen this before. Idk whether to call it denial, effects of mental illness or magical thinking, but I can not reason with such lack of reason. (So I let the paramedics decide on course of treatment).
Sadly I see this lack of acceptance of a leukemia dx as the same problem. It would be a hard dx to accept.. you can't even see it! It would take a massive amount of trust in other people. People she probably never met before. Maybe that's part of the NY plan? Wanting connection to someone or something she trusts?
When I worked in a small hospital many moons ago , I remember some frequent flyer patients with mental illness who came in and out like a revolving door who had more minor medical problems than Leukemia .
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.
Just offering you and your parents strength and support.
In difficult times like these I try to stay "in the day."
Thinking of you, SP.
I’m so sorry that your family is going through this. It sounds like it’s a very confusing time for your sister.
Wishing you and your family peace as you continue on this difficult journey.
Sending a million hugs your way today!
Although it sounds like she’s in total denial of her diagnosis again .
If she really understood what she needed to do to try to make this trip she would not have stopped treatment .
Although as I have been thinking all along , based on her history , she would not see the treatments through even if she got to NY .
I’m so sorry . This is so terrible for all involved .
(((hugs)))
may she and you find peace.
Maybe approach the situation as we can't get you to NYC because of the New Year, etc., etc., but can get make arrangements to get your stuff here on short notice -- helping her be more comfortable with staying put?
She told my mother that the doctor asked her if they had permission to put her on a vent (because they know what is going to happen once all the medication and transfusions are stopped) and she said no vent. Which I agree with because a vent would not cure her or make her well and just prolong her suffering. I will be calling her in a little while and tell her the NY thing is a no go.
But the price you will pay for this is very long waits in the ER. Think hours and hours. But if your sister is serious about wanting treatment, this might be the most sensible choice.
Keep in mind trying to get her ANYWHERE into Manhattan today will be virtually impossible, between the Times Square celebrations and the ongoing protests about the Middle East. And that will be regardless of what sort of transportation you choose to use.
Is she anywhere near UVA?
The study revealed that New York's average wait time is 201 minutes, or 3 hours and 21 minutes. (Not including holidays)
Without an oncologist in NYC who knows her case, how will she get treatment she's ALREADY getting where she's at??
Sp, this plan makes NO SENSE. Stop using your heart and start using your head. What would your common sense approach advise someone else to do in this situation?
Btw, big hugs out to you. I feel so badly for you, words can't even say.
Thanks everyone for your support and encouragement in this.
I live in MO and my parents live in FL. So she has no family near her.
I really don't know why she thinks she will get better care in NY instead of where she is at. Her logic is that because they kept changing her diagnosis that they are not competent to treat her there. The reality is that the first hospital diagnosed her based on her flu like symptoms and when they got the blood tests back they found the leukemia. The second hospital gave her the APL diagnosis but I am assuming that once they ran more tests it was determined she didn't have APL but AML. They were supposed to do the bone marrow biopsy Monday. I am sure it would have been sooner but she would not consent to the biopsy sooner.
My sister has always done the back and forth thing. With every place she has been and especially every place that has tried to help her. Always finding fault and leaving just when she is close to actually getting help. So I think it is just her mental illness at play.
I agree that I am basically chasing waterfalls here in thinking OK if she goes to NY she will do the treatment. But in reality she will probably find fault at those hospitals too. My dad thinks she wants to go to NY to die. I think she might but I also think she has stuff in storage in NY that she wants to get before that happens. My sister has many secrets and reveals only things to get her what she wants. It has been that way a long time.
It's a holiday weekend and from what you say about her cancer, she could die within days if not getting treatment.
Which hospital is she thinking about showing up at? Has she called them and asked about getting treatment immediately?
Frankly, this sounds like the delusion of a mentally ill person who is running away from her illness and from reality.
I am really worried the family getting involved with this transport and so on and do believe this is entirely unrealistic and will lead to disaster. And do think it is delusional thinking on Sis's part. I wish family was united in "You stay there and you get care and treatment and we can't participate in anything else".
I talked to my sister on the phone and she is only 55 but sounds like she is 80 years old. I didn't even recognize her voice when she answered. Of course it has been 3 years since the last time we talked so there's that too.
Now she has me looking at ways to get her to NYC because that's what she wants and who doesn't want to help a dying loved one get what they want, right?
I spent hours trying to find alternatives and even called a medical transport company which was $5,000 but they said they couldn't take her and just drop her off at the ER unless someone was there to meet the transport because it would be like doing an ER dump.
So I looked up long distance taxi services, etc and found out that UBER can drive up to 8 hours so I told her about that (which I now regret). My parents said they would pay for it but really the train is faster at 3 hours and then she started talking about finding a storage locker to store her belongings in before going to the emergency room and after I was done talking to her I stayed up most of the night just going over everything in my head and stressing about it.
While talking to her I asked her about the chemo, etc but she still doesn't believe fully that she has the leukemia and that she needs chemo. She doesn't realize how sick she is and how much time is of the essence at this point.
I asked her if she can walk up and down the hallway and she said that they won't let her because she has RSV(but I don't think she can physically) but in the next sentence she tells me she is almost over the RSV but then she tells me they won't release her until the RSV is gone. So it's back and forth with mismatching answers and responses and no one is allowed to talk to the nurse or the doctor anymore.
I am supposed to call her tonight and I want to tell her that finding an Uber driver is going to be next to impossible because they would be losing money on the almost 5 hour ride back from NYC to Virginia. I feel like if she has all this energy and is feeling better then she should be able to take an Uber to the train station and get to NYC that way. It is faster then traveling by car at only 3 hours.
I have heard that NYC is overflowing with migrants right now and they stopped the shelter in place so many are seeking refuge at the local emergency rooms. Plus all the shelters and over flow housing are full too with so many being given one way tickets to NY right now.
The whole thing is a mess and I just don't see this working out for my sister. But I can't let it kill me too. It is so hard to detach from it and try and be a voice of reason. Though I know the minute my sister doesn't get her way or I tell her something she doesn't want to hear she will stop all communication with me. That may be easier for me to be angry rather than feel guilty I am not doing more.
And I have to say I am surprised you have agreed to participate in this.
Please reconsider and let your sister know you are sorry but you can't be involved in any such search and move.
If you partake in this move you are participating in an unsafe discharge. This is just the sort of impending disaster that can happen when the patients run the asylum. SP your sister is making the decisions now of the mentally ill. Please tell her to stay put, get treatment, and that you will not participate in anything less than that.
Please don't do this. The NYC hospitals will have this woman on the streets in days.
You have been here long enough to know it is not guilt you are feeling, but grief.
You didn't cause your sister's mental illness or her leukemia and you cannot fix them. Without causation you cannot be guilty of anything.
If you or your parents participate in your sister's leaving that hospital by any means I think you are participating again in a very unsafe discharge.
The NYC hospitals won't allow her to stay in hospital treated or UNtreated; she will go back and forth about treatments; and they will very happily send her into the streets.
I beg you not to do this.
If you do this I honestly cannot watch. I so know the outcome. I fear you do as well.
I don't have the will to watch it. I will likely remove myself from these threads if you try this, but please know--because this is true, I care about you-- and I wish you WITH ALL MY HEART and whatever soul I may have, the very best.
You must and will make your own choices.
.
AML is a grueling course of treatment to endure . Although older people primarily get it , my nephew’s wife had it soon after having her second child . She endured painful tests , sickening chemo , being in reverse isolation , transplant from her sister . She was not able to see her kids except to FaceTime until it was safe . The children were 2 years old and 6 months old when she fell ill . She was young and determined to get back home to her kids . She said that’s what got her through . Fortunately she has been ok the past 6 years.
I fear your sister can’t focus to get through this entire process . ((Hugs)).
She has had 3 different doctors from the oncology department talk to her and tell her what she has and what treatment is needed. They are all pretty upset about the situation at hand and having her change her mind about getting treatment or not getting treatment.
They even had a psych evaluation done on her and it was concluded that she is capable of making her own decisions so my parents cannot even get control over her and her getting treatment since she has been deemed competent.
She continues to say she wants the hospital to transfer her to NY, but they won't transfer a patient to another state for something like this. She would have to walk out of the hospital and take a train or bus to NY. I think she knows she can't physically do this because if she could I know she would have done it already.
Sister thinks because she is feeling so much better that she is not as sick as they say she is. The only reason she feels better is because she is getting daily blood transfusions. I forgot to tell my parents to ask how long it would take for her to go downhill once those daily transfusions stopped.
The oncologist said that sister has given one time only permission (today) for the doctor to talk to my parents because she won't sign the HIPPA paper giving them full on permission.
From what I understand my sister has until Monday to decide if she will get the treatment there at the hospital, this includes the bone marrow test or choose to go on hospice. If she goes on hospice she has maybe a couple of weeks. Probably less because I don't believe they will give her blood transfusions on hospice and once those stop her body will start the organ failure process one by one until she dies.
We sent her some balloons this morning. My mom advised that I shouldn't try and call to talk to her because she is in a manic state and it might make things worse and then she may cut off complete contact with them too.
She may well agree to treatment, but she will change her mind in seconds, and they cannot force hospice on her either. So she will just likely go back and forth continuously. They may well tell her that if she doesn't get treatment they will release her.
She is getting daily transfusions then she would be gone in less than a week without them, and more likely in days, SP. If you recall, that is how my friend chose her end, and she didn't even make it out of the ER room. She would fall into coma very quickly without the blood transfusions.
I am glad, in all truth, that your parents are not made her guardian. What would they do, have her placed in four point restraints and treated. Treatment of leukemia of this severity is to my mind nothing short of torture and that includes the bone marrow testing. It is nothing but pain and to no avail.
What I hope for your sister from all you have told us now is peace, and finality.
I hope this is soon over for her, for there is no place good for this to go. It takes tremendous courage to sign up for treatment in a case such as this, and it would almost certainly be to no avail.
I am so sorry.
As always, thoughts with you and your family and thanks for your update.
It’s a flood of many emotions for all of you . Mental illness on top of Leukemia ,
such a tough situation. (((Hugs)))
And I think that is the way it will go.
Barb is so right that this is very much reminding me of Liz Scheier's memoir Never Simple.
There just isn't a darned thing anyone can do and that includes families and the entire social services system in league with the medical help system. Nothing to be done.
To me you are right that your Sis won't be around in a year. But I think things will crash a good deal before that. Even were she willing at this point to take the treatments, without a bone marrow transplant she would not be likely to make it, and that is grueling even for the very strongest with the very toughest determination and family support.
It's a crucible and often doesn't work.
There is just not a lot to do but be there. Your parents are standing witness to this and that's all they can do, and reassure your sister they are there, and hoping for the best for her. As to you, the sweet card here and there just to say "thinking of you" and nothing more.
I am sorry. At some point NOT FIGHTING this illness is quite honestly an option. At my age it is no question the option I would take, asking for for the "good" medications and the right to die laws if they were in the state I lived in (which they are here in my own).
I think none of your sister's thinking is grounded in reality. That is the worst of it. Because were she making decisions knowing reality/being in reality, it would be some comfort.
And no, there is nothing that can be done. With mental illness there would never be allowance for guardianship; and I think that is a good thing. Because guardianship of someone who doesn't wish to cooperate is just awful. Torment to all involved. And to what end. There's never a good end to it.
Thanks for your update.
It reminds me so much of the end of Liz Scheier's book about her mom. NYC social workers had gotten him into a nice Assisted Living place in Brooklyn that accepted Medicaid; she insisted on signing herself out to go to a hospital in Manhattan because that was the only place she thought they could treat her end stage COPD.
So sad for you, her and your parents.
She said the doctor threatened her. When she was asked how she was threatened she said the doctor told her if she doesn't take the medication she will die.
She wants to check out of this hospital and go back to NY so she can get better treatment. Yet she can't see, can't hardly walk, etc.
And she may just do that as she has always done things like this with wanting to go back to this city or that shelter because the current city or shelter has x, y, and z wrong with it. That is her mental illness.
The problem with this is that it would be a couple of days before she could even get back to NY and get into a shelter (if she could at this point) and she would most likely need to be admitted immediately to the ER there. So the cancer which is not under control would start the rapid process again.
In all honesty as much as it makes me sad to say it I don't think my sister will be consistent enough with treatment for her leukemia and I don't think she will be alive this time next year.
The doctors can't force her to take the treatment, they can't keep her in the hospital and she won't give my parents access to talk to the oncologist or anyone at the hospital so they are at the mercy of when my sister calls them.