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.
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.
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.
I so wish that your sister wasn’t in this position. It’s so hard for her and your family to go through this.
No matter what she decides, it’s not going to be easy. Stressful and heartbreaking all around. I can’t even imagine how hard this must be for your sister.
Sending love and support your way as you continue to endure this difficult journey.
The doctors should be telling your sister the best outcome and the worst. They will do whatever she wants but she can't flip flop. With Lea and my sister, they had support. My Mom stayed with my sister the whole 8 months taking care of her 6yr old son. I went down on weekends sometimes, I worked and had my own girls. Who is going to VA to be with ur sister? She can't go out of State with Medicaid. Won't there be a bone marrow thing done? Who will be the donor? Your sister needs to allow you to talk to the doctors. Do you think maybe a doctor/s could declare her incompetent to make informed decisions based on her mental illness and you can get temporary guardianship. Then you can get the info needed to help ur sister make a decision. This is not something that will be taken care of with a pill or overnight. Hospice has been recommended because your sister is dying. Chemo will probably be a last ditch effort. And to be honest, I don't see ur sister doing it.
I so feel for you because you can't be right there. My sister was 2hrs away. You need to depend on ur sister to give u the right info and I am sure that is why you are so overwhelmed because u aren't getting enough info. If you could just talk to the doctor and have him be perfectly honest with you, you could have a little peace. My thoughts and prayers are with you,
I know the reality of my sisters cancer really only hit her today with the bloody stool. I think before that she was in pretty much denial regarding how serious this cancer was.
Unfortunately she won't allow anyone to talk to the doctors and they consider her of sound mind per the psychiatrist that evaluated her at the hospital.
I agree she either has to go all in and there can't be any flip flopping back and forth with treatment.
The thing is I don't think she will be able to handle the side effects and even if she did start I see her stopping shortly after starting.
The first month of treatment is done all in the hospital because I guess the chemo on this is pretty hardcore and change of infection, etc is really, really high. We were planning on speaking with the hospital social worker to talk about supportive services for her when she was ready to go onto the second stage of treatment, etc. So we could support her and get her through the next part of the process.
We weren't sure what that would look like but we were willing to do what we could to help support her in getting well. I agree having family full time with the person is the optimal and ideal scenario but it isn't always possible. Her mental illness and continual back and forth paranoia and personality changes make it really hard for us to have her come stay with family which is sad on a whole other level.
So sorry about sis going back and forth about treatment. Kinda more of the same . She has done this back and forth always for years . But the stakes are higher now.
Sorry about the dreams as well .
((hugs)))
There honestly is not a lot in my mind that treatment can do for her other than more torment. She is highly unlikely to get a cure, and I think the docs are telling her that.
That said, this is likely the best way to get her on hospice and the "good meds" and I think that is the goal.
I think that your sister is dying.
I doubt that any power on earth or any treatment can turn that back, and if your family had privileges to talk with the docs I am pretty certain they would level with you on that.
I thank you for keeping us updated because I know we are all thinking about you and your sis a lot.
I can identify with the dreams, but I would ask you to examine them and their messages to you, because while I am a believer in almost NOTHING at all I do believe in our own mind's ability to try to speak to us in allegory to get us thinking, accepting. I KNOW what you are experiencing a bit as my dream life was exceptionally active (usually for the good) in the last years of my brother's life. You know how much I loved him. I could honestly not imagine losing the Hansel to my Gretel. It is very tough stuff. VERY.
I really don't see where your sister could get treatment anywhere but where she is if on Medicaid. Even if she had her own insurance, most are State written. Then the cost, Hospitals are not going to do it for free. May not even take her without proper insurance. But I guess ur sister is not able to understand that with her mental illness. She wants it her way.
Your sister got the O thing backwards. O can give blood to anyone but O has to have O blood.
Again, so sorry your family is going thru this just know that you can't really do anything.
The best you can hope for is for sis to stay where she is . As Alva said, this is rare that they are doing as much as they are and willing to keep her . She won’t be treated as well anywhere else. You are right , she does not have the bandwidth to go through treatment . She would most likely not even get very far and abandon further testing or treatment . All you can do is encourage her to stay where she is safe and be made comfortable . But if she does not stay there it is not anyone’s fault . In the end her refusal of treatment is caused by her mental illness , not anything you or your parents did or did not do.
(((Hugs)))
Remember what I always say here about how inappropriate guilt is when you did not CAUSE something and you cannot CURE it. You are experiencing "grief" the other g-word and words we tell ourselves are hugely important.
You say she does not love. You are correct. For most with mental illness they are entirely self-absorbed and self-directed. They are unable to give love outward, and they judge incoming love by whether or not you will enable them. If we want to be BRUTALLY honest, most love for all of us is self-directed and born of need. We hear someone loves us from out bestie at school and suddenly we love HIM, because--hey, he loves US. I know how much I love my 37 years partner, N. But I also know I NEEEEEED him. We are basically selfish animals. Got some good empathy going, and can recognize what pain may be for others, so a few good traits going. Still..........And for the mentally ill it is all about me-me-me
I had no idea you were considering taking in your Sis for a moment, SP. Again, I think that is magical thinking, and my fear isn't so much that it will not be good for YOU--you are a survivor. But it will not be good for HER either. The worst people to handle the mentally ill is their families. As you are experiencing, it is all too involved with family dynamics, inappropriate guilt, and etc. And we see this EVERY DAY on AC.
Please don't go the magical thinking route. It will not only harm YOU, but will harm your sister.
As to calls. To my mind they should now come from her only, and know when you call her she will be unlikely to answer.
I am so sorry. But this isn't going to have any magical good ending, and the hoping for it is going to do grave destruction to you and your Mom. Your Dad already magically has this, which is unusual as usually men are "fix it men". The good thing is that your dad seems to know he cannot fix this, and has already some acceptance.
Are you sleeping? Eating? Taking care of yourself? Is your Mom? Because as long as they pour in the blood (and don't worry, they know what kind), your sister will go a while.
You only feel emotionally better when she acts out because you can "see her". When she begs, you go into magical thinking that there's something you can do for her. There isn't. She knows you and your parents are concerned for her. I fear that's as good as it gets here.
Love to you, SP. We all are so sorry, and I sure know how much you wish you could help your own sister, when I know there's something I wish I could do or say to help YOU. You are so often in my thoughts now. I so often think of all I had with my brother. End result is missing him. But there was so much joy.
My guilt makes me feel like I should take her in and that I am a terrible person for not doing that for her but my head knows that I could never do it because the end results would not be good for me or her.
Yes I agree as you said, "the worst people to handle the mentally ill is their families."
My dad has cried over the situation with my sister when we first got the news but as this has unfolded with her exhibiting her same behaviors that she has always done he is just done with it and now just keeps things light and breezy when he talks to her.
I agree I am not going to try and call her. I will let her make the call to me when she wants to. My mom is on the same page with this also. I expect in two or three days she will be calling my mom again with some other crisis.
And yes I expect with the blood transfusions that she will be around at least 6 months, maybe longer.
And thank you and everyone else for thinking about me and showing their support. I really appreciate it. It has been cathartic to work this out and get feedback here from everyone.
I talked to sister on 1/5/24 and she sounded really upbeat and in good spirits. No coughing, etc so I assume the blood transfusion she received the other day helped her feel better.
I got her to agree to let my mom talk to her doctors and nurses again by telling her that this way we can check on the medications she is being given, blood, etc as there was a concern about her not getting O- and RH- blood because she said the doctor told her that she was O- and could receive any type of blood - which isn't true.
So last night when my mom talked to her she kept talking about wanting to leave the hospital again and my mom told her that she has no where to go and another hospital won't take her if she won't get treatment, etc. She told my mom she was working on it with someone to get her out of there but wouldn't say anymore.
She asked my mom to call at 7 am so she could talk to the nurse but my mom slept in because she was up all night tossing and turning over the stress of everything. So when she called her 2 hours later then what sister said my sister didn't pick up the phone. Mom called the nurses station and the nurse said my sister told her that she doesn't want to talk to her.
So we are back to that again. I think this makes 5 or 6 times in just a little over 2 weeks and really is no different then what she has done to us for over 30 years.
This just solidifies to me that I could never have her move in with me during her cancer treatment (if she got the treatment) and neither could my parents. Her mood swings from one moment to the next are terrible and honestly I don't even think she loves us I think she just uses us for what she needs and when she doesn't get what she wants from us she goes radio silence until the next crisis.
Ironically it feels easier when she does this to accept her dying then when she is in the depression mode and crying and sounded so sick and pitiful and then the guilt starts up all over again. My dad just keeps things casual and light now when he talks to her because he knows that she is going to do what she wants to do and there is no point in even trying to help her with talking to the doctor or nurse.
I felt guilty that she is in the hospital all alone and dying but I know that if any of us went to see her she might just as well refuse our visit depending on her mood. So now I have to work on not feeling guilty anymore and letting her go. It's not easy but as everyone says you can't set yourself on fire to keep someone else warm and that is the truth.
To be continued....
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.
((hugs))
Sending hugs your way.
I just read an article backed by the CDC saying the flu shot is now thought to give us a higher incidence of getting the flu. Glad I skipped it this year.
I am so sorry your sister is going through this horrible ordeal. And your whole family as well. Its so awful seeing or knowing a loved one is suffering like this and being helpless to DO anything about it.
The thing about long covid is that this can also happen with the flu or any virus to a person. So it's not anything new but since covid was weaponized to be more lethal thanks to that lab in wuhan run by fauci and friends it makes the potential for side effects that much worse in some people, not all people.
Helpless is the exact word to describe it because she won't let us help. It's like she has resigned herself to this death sentence that doesn't have to be. I know side effects from the chemo can be bad but there are new drugs for AML that can get a person into remission without chemo if you have specific mutations - but she refuses to even be tested for that with the bone marrow biopsy.
Even for me, a western med, retired RN, TRUE BELIEVER, I am now s/p 7 Covid boosters in all. Is this why I am looking at a worrisome lump in my left breast, and on the way thru the diagnostics "machinery", and likely moving toward my second mastectomy after being cancer free for 35 years after the FIRST mastectomy?
At some point you wonder how many shots the immune system wants to deal with. A new flu shot. A new covid shot because hey-they-only-last-4-months? A new pneumonia shot because this one's better than the last you had? Another two-course shingles shot? And what about a little RSV vaccine, too?
So sometimes even a "true believer" of vaccines can tilt her head a bit, you know. Consider mine tilted, but still am a true believer. Just not in capitals.
So, just sayin. I doubt it. I doubt our vaccines cause much of anything and covid ITSELF is causing major long-covid problems, clotting disorders and so on. So, given that, leukemia IS kind of blood related.
Guess I will just say.........................who knowwwwwwsssssssss. (Every time I say that I remember them asking Donnie Rumsfeld how long the war in Afghanistan would go. It was his laconic reply. With a kind of smirky drawl. Turned out to be what--20 years? But sometimes it's the only answer. Who knows.
OK, on to Sis. I think you folks are seeing a nearing to the time the docs are gonna say "We understand the mental illness component, but we cannot keep you in acute care if we cannot treat you".
That's now my fear for your sister.
She is acute enough, needing transfusion almost to the level of a pint a day that they can muster up the codes to keep her in.
But the time will come. And I fear it's near. I want you guys ready for it, with a plan of your response, you and your parents.
And that's a crucial time for YOU and your folks. I will only say don't enable her in any way to get herself in a more unsafe position. Like traveling. Like new hospitals and new cities.
She isn't going to survive that and you don't want to be kicking yourself for participating in an unsafe discharge.
Sis honestly needs them to consider some state conservancy and placement for her if she insists on leaving, or if they discharge her, because she is now a DANGER TO SELF. But I fear if your parents or you take this on you will blame yourselves for any disasterous outcome. And none of this is on you guys.
I have thought about you so much, and mentioned to another on our site that we hadn't heard from you in a few days and was thinking of you so much. Know you are sooooooo in our thoughts.
My only hope is that there is some level of peace in your hearts, you and your parents, that there isn't anything to be done about this. Even with treatment likely. And certainly not without it.
Thanks as always for your update.
You know I'm sort of agnostic about flu vaccines, so my hubs and I got the very first 2-dose Pfizer shots but nothing since. I've had the original covid and my hubs had some later version of it. My 94-yr old Mom (as retired RN) who only got 1 of the 2 Pfizer shots never got covid until right after this Christmas. My hubs and I did, too. Hubs had a bad case and mine was milder but we both were on Paxlovid (I got mine 1-1/2 days into it and hubs got it on day 5). My Mom refused Paxlovid and was sick the least of us 3. I kept warning her to stop going out to the stores and in public because she wouldn't wear a mask but she did wipe down the handles on the shopping carts. My 104-yr old Aunt in FL got sick, too but didn't take a covid test. Hers was also mild and she totally recovered (she had been with tons of people over the holidays). My late 30s-ish and very active nextdoor neighbor has Crohns and is fully vaxxed and boosted (including his family), masked, etc. His whole family got covid right before Thanksgiving. Go figure. There is no magic bullet when it comes to covid. There isn't enough known about it or the vaccine effectiveness.
Her gums are hurting so they gave her some pain medication for that and she can only eat soft foods and she has lost about 25 pounds in a few weeks. I am going to mention to her to ask for ensure to help her from losing further weight.
Sister still won't let anyone talk to the doctors or the nurse. She won't answer when asked if she would do chemo in another hospital or if she will consider doing chemo at that hospital she is currently in - which to me means she has decided not to pursue life saving treatment options. She does have a DNR so if she stops breathing they will not resuscitate her or intubate her.
From what I have read acute leukemia doesn't have to run in families. That it is like a switch gets flipped and someone can just get it. I have to wonder if the covid vaccine is responsible for flipping that switch for my sister.
I did find a couple of studies in Taiwan that talk about people getting chronic leukemia after vaccination and another one where someone got AML after vaccination. Maybe decades from now after all the political pressure and financial incentives and threats of lost medical licenses and credibility are gone they will actual compile and do the research and studies to find out. Strangers things have been known to happen. After all it took a long time for ALL doctors to realize that hand washing saves lives and should be done. But before it became standard practice those who talked about it were considered outliers and were probably maligned and ridiculed for that belief.
So now it is just a matter of time and waiting for my sister to die. What a crazy, messed up world we live in where we are all waiting to draw that proverbial short straw that will take us out.
One of my cousins, dying at age 49 of cervical cancer, became enraged that her older sister (who was working full time, had 4 kids and was managing their elder parents' affairs) wouldn't take her on a trip to Egypt (they'd been to Lourdes the previous year).
"The trip" may be a stand in for a stand-in for the longer "journey".
(((hugs)))
Holding you all in my thoughts tonight. ((((Hugs)))).
Yesterday I told sister that Uber to NYC was off the table. She told me and my parents that she would be taking a bus to NYC. I asked her when and she said we didn't need to know because we weren't involved in getting the transportation for her (pretty typical of what she has done the past 30 plus years so no surprise there).
Talked to her a little bit ago and she asked me if I would drive down to VA and take her to NYC. I said no. It was one of the hardest thing I have ever had to.
Basically our conversation ended after that.
Everything in my being wanted to say yes and then do it. But I can't because I know what would happen and it would be all bad for me and for her. It wouldn't be like some great Hollywood drama where the estranged sisters - one with cancer have this amazing moment where the one sister helps the dying sister and they reconnect over this terrible disease and everything is all sunshine and rainbows and everything works out. If only.
So now I am starting the New Year doing the right thing and feeling like complete crap. My parents sound like they have aged about 20 years in two weeks too. It's just a mess. One big, fat, sad mess.
I can't fix her. I can't be the hero in her story and I really, really want to be that person. The truth is I don't even know my own sister. We have spent more time not talking then talking and when we do talk it's like walking on eggshells because if you say the wrong thing then you are cut off again until she needs something.
And her coughing is getting worse. She was up 18 hours last night coughing and took some pills this morning. I know she knows she physically can't make the trip to NYC by herself that's why she asked me to come and take her.
And that is the only word for it.
It is shattering.
And you made the right decision. Much as you want this dream, and you say it PERFECTLY right here:
"Everything in my being wanted to say yes and then do it. But I can't because I know what would happen and it would be all bad for me and for her. It wouldn't be like some great hollywood drama where the estranged sisters - one with cancer have this amazing moment where the one sister helps the dying sister and they reconnect over this terrible disease and everything is all sunshine and rainbows and everything works out. If only."
This cannot be. It would not be, not matter the Hollywood intentions.
Your sister is desperate and she is clutching onto a dream.
You are desperate for her and you know that the dream isn't reality.
And this will pain you to your dying day, I kid you not.
I can still remember the day my mother knew she had to move to care. I was in SF working my last years before retirement. She had had a fall that quickly progressed to end of life and hospice. And I still remember when, my brother and I, there to move her to a beautiful LTC facility with her last possessions, she looked at me and said "is there no way I could stay here (her little one room in ALF) until the end?".
And I swear to whatever powers may be that I would have stayed if I knew she had only weeks in Hospice. I could have.
But I DIDN'T know that.
And I can hear that request still at 81, ringing in my ear, the ONLY THING she ever asked of me in all her life--a life of devotion to her husband and kids--a life of love.
I know now, wherever she is, if she is anywhere, that there is perfect understanding for us. But I will always hear that somewhere in me. Always.
And you will hear this as well. This request of your sister.
But you are RIGHT IN YOUR DECISION.
And there is no other decision to be made here.
I am so sorry for all this pain. I feel I can slip into your soul as you suffer all this you are suffering, that is how much I trust what you have always been--here on AC. As much as I trust all you have said from your heart.
It hurts like Hades to see you go through this, SP. I hope you know that you have real friends here who have ALWAYS seen into your heart. Who can see into it now. Who think of you so very much.