Feedback, pls, re:DD(step) & melanoma

[kdzgon]

Hi, all~

I don't know where else to turn, so I am hoping some of you might be willing to share some insight. I know this is long, but please bear with me if possible.

DH's DD was diagnosed with melanoma just days before Christmas. It came as a complete surprise, and was diagnosed as a result of a small lump found near her groin. The CT, MRI and PET scans showed she was Stage IV, and it had spread to numerous bones, all her lymph nodes and through her abdomen, but no major organs at the time. She refused to even consider a second opinion, and she was enrolled in a clinical trial. She developed a tumor in her lower abdomen (externally visible and increasingly debilitating) that grew at an alarming rate and began to weep and then bleed quite a bit. After two courses of the trial treatment she was removed from the trial due to the tumor. The dr then decided to surgically remove the tumor, a move that until then they kept saying was the worst possible move. After 5+ weeks of recovery, they proposed IL2 (interleukin) treatment. She had also developed numerous new tumors in her abdomen and groin. Unfortunately, she was not strong enough to start the treatment so in the meanwhile they started her on an interim treatment that included thalidomide and two other chemos (one oral, one IV) while hopefully she built up her strength. That has not happened and she has grown progressively weaker, and new spots were also found in her lungs. Her numbers have been so low she has required regular transfusions, has been hospitalized several times (a week or more at a time) for infections and/or complications. The dr told her "it's not over", but recommended she get her affairs in order. She was put on a "new" drug Gleevec (I know it's not new - that was a quote from the dr) but since then had been taken on and off the meds temporarily due to the low counts etc. She began retaining water - first her legs (they are now so swollen she cannot even bend them and they must be lifted in to the car or on to the wheelchair, etc) and now it is happening to her arms and hands. She is up >80 lbs with the water weight, she can barely walk and struggles to breathe while sleeping and after even a walk to the bathroom and back. She cannot even stand long enough to get weighed at her appts.

She was hospitalized again due to an infection, and remained there for a week. Her tumors are so bad they require special dressings that must be changed at least 2x a day (should be 3, but the insurance will only pay for 2x) and she requires lots of help for the most basic tasks. There is no question she can not be alone any longer, so she was to come and stay with us when released from the hospital - she lives with her boyfriend (for 10+ years) but he works during the day and DH has a more flexible schedule. Sadly, upon hearing of this arrangement, DH's ex pitched a fit and stormed out of the hospital. Consequently, DH's DD has returned to her own home instead where we cannot always be there to help.

The doctor has given her two choices: get off everything and they will make her as comfortable as possible through the end or go back on everything and double the Gleevec (her only hope, but essentially a "hail Mary pass") and deal with the severe side effects - she has chosen the latter for now.

The dr has told DH and me that the Gleevec is her only hope, that the fluid buildup, general weakness and breathing problems are from both the spreading cancer and her systems shutting down. He also said the fluid buildup is mainly from the tumors blocking the circulation. We asked about a nurse at home, and was advised that is up to the ins co. The ins co says she would qualify for hospice and nursing visits if her est life is 6 mos or less.

Now, finally the issue(s):during a discussion re: nursing care DH asked his DD about hospice, but she responded "that's the next level - I'm not there yet." Now, it is clear she needs more care than we can provide, but in order to do so it must be through hospice. While she would likely meet the criteria, she does not realize her time is likely quite limited. (When asked, the dr told DH and me that short of a miracle (with the Gleevec) she'll have approx 6 weeks or so.) This, in spite of having been told to "get [her] affairs in order", her obvious physical problems, the recent treatment choices given, the doctor telling her flat out that Gleevec is her only hope and the obvious increasing size and deteriorating condition of her visible tumors.

I don't know what to do. She absolutely needs more care at home than we can give, and there are times no one is with her (she has refused the offers of some people, including from her boyfriend's father). The only way I see to do this is via hospice, yet she is somehow unaware - or is just choosing not to see - that her prognosis is so poor she would qualify. Should DH be very frank with her and relay the conversation we had with the doctor so we can move forward with hospice or should we just let her believe what she believes and struggle being alone until she finally sees how bad she really is?

Please, I apologize again for the length, but any feedback would be wonderful right now!

Thanks so much -

Laurie

[Jcricket Fan]

Firstly let me say that this is heartbreaking and my prayers are with you all at this time.

You did not mention DD's age but I assume she is an adult if she has been with her BF for 10yrs. My personal feelings on issues like this are that the patient needs to be told very clearly what the reality is. Has the dr. spelled all this out not just elluding to "getting her affairs in order"? News like this raises peoples denial abilities to all new levels.

When the issue is life & death I am a full disclosure person. Adults need in my opinion to be able to be presented with the truth. Not all people will listen and some never come to the point of acceptance of what is heard even in death.

Sometimes the best we can do is to inform, comfort and let go. None of which is easy.

Laurie, you have asked what should your DH do and my answer would be to be as honest (so very difficult I know) as possible and explain that her comfort is of great concern and at this point whatever help is available (whatever name it is given ie: Hospice care Which is wonderful!) should be taken advantage of so that for however long she lives (6 weeks, 6 years) she can do that as pain free as possible.

Please know I will carry you all in prayer. Please feel free to come here as often as you want/need. You will always have a safe place here on this compassion board.

Peace.
Colleen

[kdzgon]

Thank you for the thoughts - this situation is by far the worst, but we have several life-altering situations going on right now...sometimes I feel like I am going to collapse under the weight of it all.

Yes, she turned 34 in March - too young to have to deal with these kinds of issues!

It is my feeling that she should be told so we can move on to what is best for her care given the current situation, but some people simply prefer not to know the truth. I am not at all thrilled with the doctor, but ultimately it is not my decision. I voiced my opinions, and I push when I can. We put a call in to the doctor last week but he is away and has not gotten back to us. He did have an assistant call us, but it is of no help - We wanted to have a discussion with the dr (without DD) to see if he will sign off on her status for hospice, because without that there is no insurance coverage for the nursing care. At that point (if he does agree to sign off) DD would have to hear the unvarnished truth. My thought is, if death is indeed a very real probability, why in the world should she not get all the assistance available to at least make her remaining life (relatively more) comfortable?

[Jcricket Fan]

You are so correct Laurie that she should get whatever help is available.

I must also say that you are in an interesting spot as the step-mom. I don't know how the situation is for you and it may not be the case but something I deal with as a daughter-in-law, family but a step removed.

Mom-in-law has terminal cancer and I have tried to offer my thoughts & assistance but I have been met by several of her children (not DH) with resistance on her care. Denial runs very deep in the family.

I had to pull back and let them handle her care the way they want even though I feel strongly about some of the decisions they have made on her behalf. It is hard to watch.

Please know I will be praying for added strength for you to carry the load.

Peace.
Colleen

[Tnkrbelle565]

I just wanted to say...don't give up hope! I had Stage 4 Melanoma 6 years ago...and I'm here to send you a message about it. I will keep your step daughter in my prayers :hug:

[tinkwdw47]

I Will Pray for your stepdaughter.....:hug: Hope everything turns out good for her and your family

[Mackey Mouse]

First, can I say your post brought me to tears this morning.. for many reasons..

Let's start with I have a daughter her age.. How would I handle this?` Melanoma is one of the worst, right up there with all the other big bad cancers that do not respond well to treatment.. I have heard a doctor say to my husband before.. get your affairs in order...he is still here and battling his cancer. His does seem to be slow growing, thank God for that..

OK.. if she chooses Hospice, it is my understanding that all treatment stops and the goal of Hospice is to make the patient painfree.....so that they can live the rest of their time without the pain that goes along with cancer, as best they can. To me, it sounds like she is not there yet....she has chosen to fight for whatever time she has left and since she is an adult, it is her choice.. I know how hard this must for you and your DH, but you have to respect her will to live.

Now.. I am not up on medical insurance and what they pay or not pay, I truly hate medical insurance and do battle everyday with them, I am just not where you are right now. But, I would think there must be something that can be done to have assistance in the home for her if the doctor says that she cannot be alone and needs that assistance..

Stage IV is just that words.. meaning that the cancer has metasases in other parts of the body....my husband has been stage IV for 3 years.. and he is living his life. We are living it together.

One more thought here, is she close to a minister, priest, rabbi, that could come in and talk with her... or maybe have the doctor recommend a counselor, I can only imagine what is going on daily in her head.. Do I battle or do I give up the fight and when do I make that decision?? All of this weighs pretty heavily on the patient as well as their caregivers...

Hugs to you, I have said a prayer for her this morning....that someone she received guidance and comfort and you and your husband as well on what to do..

[kdzgon]

First, can I say your post brought me to tears this morning.. for many reasons..

Let's start with I have a daughter her age.. How would I handle this?` Melanoma is one of the worst, right up there with all the other big bad cancers that do not respond well to treatment.. I have heard a doctor say to my husband before.. get your affairs in order...he is still here and battling his cancer. His does seem to be slow growing, thank God for that..

OK.. if she chooses Hospice, it is my understanding that all treatment stops and the goal of Hospice is to make the patient painfree.....so that they can live the rest of their time without the pain that goes along with cancer, as best they can. To me, it sounds like she is not there yet....she has chosen to fight for whatever time she has left and since she is an adult, it is her choice.. I know how hard this must for you and your DH, but you have to respect her will to live.

Now.. I am not up on medical insurance and what they pay or not pay, I truly hate medical insurance and do battle everyday with them, I am just not where you are right now. But, I would think there must be something that can be done to have assistance in the home for her if the doctor says that she cannot be alone and needs that assistance..

Stage IV is just that words.. meaning that the cancer has metasases in other parts of the body....my husband has been stage IV for 3 years.. and he is living his life. We are living it together.

One more thought here, is she close to a minister, priest, rabbi, that could come in and talk with her... or maybe have the doctor recommend a counselor, I can only imagine what is going on daily in her head.. Do I battle or do I give up the fight and when do I make that decision?? All of this weighs pretty heavily on the patient as well as their caregivers...

Hugs to you, I have said a prayer for her this morning....that someone she received guidance and comfort and you and your husband as well on what to do..


Dear MM,

First, I must thank you again because you invited me to this board ~18 mos ago, when my DD was diagnosed with cervical cancer. Thank God she has done well, getting cleared as of last November - in fact, she is on her way to serve a tour of duty in Iraq. She is active duty USN, but will be serving boots on the ground with the army for a year. Thanks to the kind support then, I knew this was the place to come this time, too.

I should have but didn't realize Hospice required cessation of active treatment, so yes, I agree it might not yet be time for that just yet. However, I am not sure she would still be undergoing all the treatments right now if she knew the truth of her prognosis. She has told us that if her survival is not to be, she would rather her suffering be over sooner rather than later.
I would be quite happy to respect her will to live, but truth be told, I'm really not sure what she is thinking. I am just not sure if it is because on some level she has chosen not to truly fight, or if it is more a denial that she could actually die from this cancer.

While she is taking the meds she has done very little else over the past months to help her body fight the disease. It took her months to stop smoking (she would stop and have "one last smoke" before she would go in for her chemo), her idea of a meal has been a bag of fries from McD (heating up any of the individual meals I would prepare and deliver was "too much trouble" even back when she was still mobile) even when she was supposed to be building her strength to start IL2, and despite the fact that she cannot even stand up without assistance she refuses to have a grab bar in her bathroom or use a hospital bed etc as it would "make her an invalid". This week she once again fought having a transfusion (her numbers were deadly low, despite getting regular transfusions lately) because she didn't want to sit around for it - she actually refused to speak to her dad because he agreed with the covering dr's recommendation to get a transfusion.

She flat-out refuses all offers and/or suggestions to talk to a counselor of any sort, so that is another dead end.

As to the insurance, the dr says "[he] has nothing to do with it", and the insurance co says the dr must first write a scrip or referral and then the visiting nurse service will make the determination as to what (skilled nursing) services the patient requires. The only other way to qualify for a nurse or attendant is if she is on hospice.

MM, I know you and your DH have been fighting a tough battle for a while, but I cannot describe just how bad DD is. Her legs are so swollen and she is so weak that someone needs to literally lift her legs for her to get her in to a car, a bed, a wheelchair etc. She is a big girl (~6' tall and broad) - it is getting difficult for DH to lift her limbs as they are SO heavy. They cannot weigh her at her appts because she cannot stand long enough. She cannot walk (even with the cane or full walker beyond a couple of shuffles), cannot get in or out of bed or a chair, cannot dress herself, cannot even aid in doing these things. (We got her a lift chair, but she still needs assistance.) Now her arms, hands and as of the other day even her face is becoming swollen (she is not on steroids). She can barely talk because she is so short of breath, her chest rattles and she struggles to breathe while sleeping (I don't know why it is worse while sleeping, but it is) and she cannot eat solid foods. She is "uncomfortable" or in pain at all times. Her tumors are so large she looks noticeably pregnant, and they span from just below her navel down to her pubic bone. They bleed and weep so badly they are bleeding through the special bandages several times a day, and they are changed twice a day already - they are also so bad (and large) that she cannot bandage them herself.

It's not that I want her to stop the treatments, as I fully respect her right to make that decision herself. I DO wish she (or at least some of those around her) might comprehend just how bad she is right now so she can start making some informed decisions and perhaps accept a bit more help that is being offered. I just don't see how she has any chance of beating this if she doesn't really fight.

Do I think she's going to beat this? Sadly, not likely. I am still willing to do whatever I can to help her fight IF that is truly her choice, but from where I sit it doesn't look like a clear cut goal on her part which contributes to my own ambivalence.

BTW, I've watched this scenario too closely all too often in recent years, watching my daughter's best friend (9 yrs, bone cancer), my best friend's daughter (4 1/2 yrs, lymphoma), my sister (2 bouts, 4 yrs - breast cancer), my BIL's father (multiple cancers, 5 mos), my son's godfather (renal), and my daughter (cervical) each battle cancer before this round with melanoma. We have lost four out of six in less than 5 yrs (plus my SIL had thyroid cancer, but I didn't see her often during her fight), so now it is torture watching DH's DD...(oh, and "just for fun", DH was recently diagnosed with skin cancer himself for the second time in three years, although fortunately it is much more treatable than melanoma). In some ways all that experience makes things tougher to just stand by, not easier.

As anyone that has waged this war knows, it doesn't happen in a vacuum..for us, that "other stuff" includes a DD and family moving to Japan for at least 3 yrs while her DH deploys every other month or so from there (USMC), another DD deploying to Iraq (plus we have her young son living with us), another DD just had a new baby a month ago, DDIL had a miscarriage and now a high-risk pregnancy (due in late Nov), DH got pushed out of his job forcing an early "retirement" until he can find another job (not easy based on age), and a move to another state (~1,200 mi away) that was planned after the job surprise but just before everything else happened. That house has gone from being an intended rental for 2-3 yrs to a planned early 08 relocation and has since been delayed several times so far due to the rapidly progressing cancer.

OK - so, another novel...I'm sorry again, but I really need to share someplace far away from those close to this fight. Thanks for listening (again), and double thanks for the thoughts, words and prayers!

[Mackey Mouse]

First, thanks to you daughter, I will keep her in my good thoughts for safety while she is in Iraq.

You know I have sent that message out before to people I have read battling with an illness and I am glad that you felt comfortable coming and posting here..

My thoughts.....from what you described to us the condition she is in....how weak she is and once the transfusions start etc...it is usually the beginning of the end.. I have not gotten there so I can only say what I have seen in the hospitals.. It sounds to me like she may be angry, who can blame her and in denial. But as you and I both know, she is an adult and unless she becomes incapcitated, she is calling the shots.. I wish someone could reach her and help her make the transition to hospice..

My heart aches to read about her condition and also how helpless you all must be feeling because you cannot force her to get treatment, transfusions, and how difficult it must be on your husband to see as well never mind the lifting and taking care of her.

Please know we are here for you.. vent away, novel or not, I will read and others read here as well.. Take care of yourself and your family.....

[Pea-n-Me]

What a very sad story. It sounds like her care could be managed better, and not necessarily with hospice. In the condition she's in, if she were to go to the ER, she would likely be admitted to the hospital for further management. There she could connect with a good social worker and/or care coordinator who would arrange services to meet her needs - whether that be home care or sub acute care. She is at risk at home by herself in the condition she's in. If there's someone in her corner who can help advocate for her, that would be ideal. Not too many people who are at odds, mind you - just one capable person who can help get things situated.

As far as "telling her the truth", that's a difficult situation. She obviously wants to continue the fight. IMO, there's lots of room for improvement - with the fluid buildup, for instance (called anasarca). If that were managed properly, people might not feel as strongly that she's so close to the end. So that's something that needs to be addressed asap. Sending prayers. :hug:

[Mackey Mouse]

Thanks Pea-n-me for bringing another set of eyes to this thread. Sometimes it is hard for me to read and digest and not get emotional knowing that it could be around the corner for us at anytime..

I think you gave valuable advice here and I only hope that when kdzgon reads it, it will help with some decision making concerning their dd. I am glad that you think that she may be better managed in a hospital setting, the fluid build-up etc. and if I read it correctly then they can be assess her condition and put in place some home healthcare for her.


I have to tell you this.......I feel the social workers at the hospitals are overworked.. In the three years my husband has been going to the MGH, we never once saw a social worker.. we never knew someone should have been assigned to us, so finally someone told us who to ask for, we met with her but it was clear that at that time, we were doing ok coordinating ourselves and she was available to step in when we needed her. And that is fine, in the case, we are talking about on this thread, sounds like they would definitely benefit for some help from that department..

I sometimes wonder and I am speaking from experience here how they just send people home after huge operations, treatment and expect the family to all of sudden turn into nurses to do the homecare. I am not trained, and yet that is what I did.. It makes me very upset being put in that position, changing dresses, emptying drains, and all the home healthcare falls on the family.... ... we had a visiting nurse come in once a week....I emptied drains at least 10 times a day and kept a chart....and changed dressing at least 3 times...bathed and took care of my husband. Do not misunderstand me here, I was only too glad to help him, but it would have been nice to have some more assistance in the home. Just as this poster and her family need the help now, there seems to be there has to be another way other than hospice.

I am glad you mentioned that this family needs that help now..

[kdzgon]

What a very sad story. It sounds like her care could be managed better, and not necessarily with hospice. In the condition she's in, if she were to go to the ER, she would likely be admitted to the hospital for further management. There she could connect with a good social worker and/or care coordinator who would arrange services to meet her needs - whether that be home care or sub acute care. She is at risk at home by herself in the condition she's in. If there's someone in her corner who can help advocate for her, that would be ideal. Not too many people who are at odds, mind you - just one capable person who can help get things situated.

As far as "telling her the truth", that's a difficult situation. She obviously wants to continue the fight. IMO, there's lots of room for improvement - with the fluid buildup, for instance (called anasarca). If that were managed properly, people might not feel as strongly that she's so close to the end. So that's something that needs to be addressed asap. Sending prayers. :hug:

I looked up anasarca - while that might be her condition, it is worse than what I saw on the sites I was on. There is no dent left, as thanks to the volume of fluid, her legs are rock-solid. She was on a diuretic even before this due to drug side effects, but I am not sure she is still on any at all.

I fully agree re: the hospital, but unfortunately the dr does not. She was in the hospital and we were scrambling to find home care for her - the nursing staff and wound care specialist wanted her to stay one more day for wound care at least (I simply cannot describe just how bad that is!) as there would be no visiting nurse until her second day home. Her dr refused to sign off allowing her that one more day - he says she does not need to be in the hospital. He did say she could go to a rehab center (I don't really understand the reasoning) but that it would not be the best place for her, so she won't go there either.

As to the fluid buildup, when it first began happening, the dr told her "let's not worry about that right now - there will be time to address that later". She was so uncomfortable I pushed her to ask him again, so he sent her for a couple of Doppler tests, but that was it. When it started getting really bad (she had put on ~50 lbs, and it was not from eating) I called the dr myself (something as a step parent, I don't usually do). He told us the fluid is from the size of the tumors and there is nothing that can be done about it. She has since put on another 30 lbs or so, and cannot even bend her legs at the knees, and the swelling is spreading, although the amount of swelling will come and go in certain limbs right now. IMO, the fluid can just as likely kill her before the actual cancer as it taxes all her systems, already so weak from the melanoma.

She won't talk to a social worker, counselor, pastor, priest, etc - flat out refuses, saying she doesn't need it. (Personally, I think it should be required as part of the treatment - at least a visit or two.) Her dr will not push the issue - he told us he offered a couple of times, and would do so one more time, but will not do a referral if she doesn't want to speak with anyone.

The hospital is supposed to coordinate her home care, but until I stepped in and pushed the insurance company, the nurse was only going to come 1x a day to change the bandage and only for 7 days. They are coming 2x a day, and I don't know for how long, but it has been over 2 weeks so far.

The sad thing is she was supposed to come and stay with us for a while, where there would have been someone with her all the time and the visiting nurse would have been scheduled for our house. Unfortunately, after >15 yrs, DH's ex still harbors great resentment towards him (and I'm sure, me). She threw such a fit over the arrangements while DD was still in the hospital, storming out of the hospital in a rage. Due to our big changes going on here, we are not in a position to sit at DD's house with her all day instead, and she is too weak and in too much pain to make the ride to us. It's one thing for me to pack while she rests or sleeps here, something completely different to be 40 min away from what needs to be done. We have already put off the move for ~ 5 months, but we cannot keep carrying the double mortgages, especially if DH keeps taking unpaid time off. Her mother won't take (paid time) off work to be with her daughter, though - all she cares is that DD is not with her dad (my DH). She now visits DD during much of the times that DH would go, so his time with DD has been lessened significantly, too.

She refused to go see the dr yesterday (it's the only day he would be in until the 12th) and will see a covering dr again on Wednesday. So far though, our experience is most covering drs have been reluctant to do too much of anything and say even less. It will soon be a moot point though, I think. The wound is starting to get a slight odor again, so it appears infection is beginning to set in once more. Once that happens, she'll be back in the hospital. As low as her numbers have been, I don't know that she'll be out soon, if at all, but at least (hopefully) she'll get more professional care.

I agree there is a huge void within the medical system, and they expect an awful lot out of the average lay person. God bless every one of the friends and family that step up to be care providers - it is truly a burden of love.

[Pea-n-Me]

I understand just what her fluid build up and wounds look like because I've cared for many, many people just like her over the years in the hospital (believe me).

It sounds like a very complicated situation and additionally not an easy personality to deal with.

I don't know where she gets her healthcare or what hospital she's been in. But I see you're in NJ so you must have some pretty good ones around your area. What I'm suggesting (since you're having so much difficulty in your present set of circumstances) is that if you were to go to the best hospital around, ie a major university affiliated teaching hospital, via the ER, she would likely get admitted and hopefully have her care better managed and coordinated for discharge.

While I completely sympathize with your family situation and complexities, I think it will help the situation the best to look forward and not backward. There are obviously hard feelings and such which really have to be put aside right now to help this young lady achieve the best outcome she possibly can, in the time she has left, with the situation as it is, IYKWIM.

My best wishes to all of you. :hug:

[Pea-n-Me]

I sometimes wonder and I am speaking from experience here how they just send people home after huge operations, treatment and expect the family to all of sudden turn into nurses to do the homecare. I am not trained, and yet that is what I did.. It makes me very upset being put in that position
It upsets us too. There is so much pressure today to get people out of the hospital. And it's for many reasons, not just money, but infection and other issues which occur from hospitalization. It's hugely complicated. Unvelievably, really. It almost makes your head spin when you try to sort out the issues. I've come to believe there are no easy solutions, either. It's a frustration we all have with the "system". I wish people could experience the level of pressure we feel trying to work under these conditions every day. It was interesting for me being a patient myself, seeing things from both sides. Sigh...

[kdzgon]

I understand just what her fluid build up and wounds look like because I've cared for many, many people just like her over the years in the hospital (believe me).

It sounds like a very complicated situation and additionally not an easy personality to deal with.

I don't know where she gets her healthcare or what hospital she's been in. But I see you're in NJ so you must have some pretty good ones around your area. What I'm suggesting (since you're having so much difficulty in your present set of circumstances) is that if you were to go to the best hospital around, ie a major university affiliated teaching hospital, via the ER, she would likely get admitted and hopefully have her care better managed and coordinated for discharge.

While I completely sympathize with your family situation and complexities, I think it will help the situation the best to look forward and not backward. There are obviously hard feelings and such which really have to be put aside right now to help this young lady achieve the best outcome she possibly can, in the time she has left, with the situation as it is, IYKWIM.

My best wishes to all of you. :hug:

I believe you know what it looks like - it's just it is beyond description for me. It is also mind boggling when I hear the dr tell her the yellow weeping (from the wound) is lymph fluid, but [the weeping] is a good thing, or that the tumors growing outside her body is good ("better than staying in her body") or the tumors bleeding is also good because it might mean they are "dying from the inside out". Maybe these statements are true, but they sound bizarre to me - at the least, I would want better explanations.

I appreciate your suggestions (and those of others). Yes, we are in NJ, but she has refused from the start to go anywhere else, be it for a second opinion or even to a closer hospital emergency room. DH and I would love to take her elsewhere but as has been said before she is an adult and has the ultimate say. IMO, the treatment has been erratic at best. Even the very best health professionals cannot possibly keep up with everything (including both treatments and remembering the exact status of every patient) so IMO one must participate in one's own health care. That includes asking questions and understanding both the goals and the treatment details. She chooses not to do any of this and instead just wait until the dr raises an issue, so I try and keep quiet. I will say if it were my child and not my step (or possibly if the family dynamics were different), I would not hold back in the same way. Right or wrong, I would not stand by while my child - adult or not - learns the hard way that she should have been more proactive, and I would bug him or her until seen by the best of the best for the particular life-threatening condition. I have warned them of this, though ;)

I also know right now I am in an anger stage - angry that things went poorly instead of well, angry that we need to stand by and watch another young friend or family member die all too early, angry (right or wrong) that the drs didn't help or at least communicate better sooner, etc, etc. I know some of the feelings are not rational, per se and that hindsight is always 20/20, but right this minute and maybe even this week, anger wins out over logic. (It is why I am here rather than ranting at the drs or non-cyber friends or family :))

We do try not to make waves considering the family situation but it does not appear that DD's needs are always put first (even by her). My poor DH is beside himself, trying to figure out the "right" thing to do...problem is, there really IS no "right" thing in such a difficult situation overall. It seems like years since we agonized how she would take us buying a cane and a bath seat - while she was already struggling, it is a hard realization at the age of 33 (now 34) that you might need those aids. She was actually thrilled, which is why I am a little confused as to her current reluctance...guess it must be her anger, too.

MM, I know your DH is (relatively) better than DD, but any insight as to something that might be a welcome move from her view might be helpful, if you or he are willing to share. (Same goes for anyone else that might read this thread and have first-hand experience to share.) How does one feel "normal" (even if just for a few short moments) at all, or is it not possible? I am not and have never been even close to being her mom, but my heart bleeds for her. I don't want to step on her toes or make her uncomfortable, but I'd sure like to do something to offer a short respite from focusing on the elephant in the room.

[Mackey Mouse]

I am at a loss here.. I have to tell you. My husband has wonderful doctors at Mass General here in Boston. We are so fortunate to have a great oncologist, awesome surgeon, and a wonderful radiologist. They are his team, and they say that to him. Actually DH's doctor calls him coach.. and DH loves that. When we have insurance issues... they help us, when we have disability issues, they handled the insurance company.. They are wonderful and by they I mean the nurses, the office staff, I cannot tell you how wonderful they have been to us.

I am wondering here about the doctors. I am sorry but it sounds like the dark ages. I agree with Pea-n-me, if you can get her to agree to go to one of the teaching hospitals.. up on the newest and latest, that might be a good thing. It sounds like she is angry too and has given up. I cannot imagine what it is like to live with her body giving out, swollen and uncomfortable, open wounds that ooze, I just cannot imagine.

My DH has great faith......he feels that is why he is still here. He has many people praying for him and his family is around him backing him 100%..... Not to say, we do not have our moments.. but the main thing in our life is him and his quality of life. We live our lives one day at a time... not looking into the future or looking back at the past, we stay in the present. He takes his time getting up in the am, he does have digestive issues from his surgery and on his time he gets dressed etc. I get up early and go to the gym, if I did not have that time alone with my gal pals, I would be crazy. I come back and then he and I may go out and do something or we may not. It is up to him and how he feels. We also have the new grandchild and he is our joy and we cannot wait to see him, kiss him, hold him. It gives us something to look forward to, he is now 1 year old.

I guess what I am saying here is my DH is living under a dark cloud, but we take our glimpses of the sunshine wherever we can get it. One day at a time, going for the gusto and living for the minute. I do not know how we could bottle that and send it to you DD, I wish we could. It sounds like she cannot get out from under her dark cloud, but here is the thing, she has to want to. She has to fight and continue to do whatever she can to get herself comfortable so that she can live for moment.

I am not sure I helped you.. but I am here and I am reading.. and I thank anyone else who may see this and try to help the OP.

Hugs all around.

[Pea-n-Me]

It sounds to me like she has the desire, but not the knowledge or resources/support to help her (and I don't mean her family; I mean medical support). Here's an example of what I mean. Someone with fluid issues like this needs education in dietary and daily management of the fluid. Yet here she is eating McD's french fries by choice. That would be something that a good care team with help her with, even insist upon. There are many other things like this that can be done, but it sounds like they aren't, or haven't been. What a shame.

Mackey, my experience is like your own. We are fortunate to have gotten what we need from our health care teams here in Boston. I agree that it sounds like this girl has not, unfortunately. I realize in talking to many people in both my work and personal life, not everyone does. And it's not necessarily in rural communities. It happens right here in our own backyards, too. It just depends on all the parties involved.

[Mackey Mouse]

I wish I could reach out to this woman.... I hate that she is in such a bad way. I agree with her Pea-n-me she does need some dietary counseling....cut down on the sodium intake etc... I feel that someone should be helping her. I agree PnM, we are lucky that we have a great hospital and good doctors to help us, but if DH's doctor was falling short, he would have been gone and we would have tried to find another one. The key is the team working together for the welfare of the patient.

I wish I had more answers here....hugs to the OP and prayers for the DD..

Is there such a thing as an advocacy person, independent of the hospital, for people in the hospital? I am sure someone must have tapped that industry as there is certainly a need..

[kdzgon]

Just a note, you help in that if nothing else I know I am not crazy in being so upset over the whole mess re: the overall care she has received. I can provide a long list of arrogance ("we have all the same clinical trials as MD Anderson - you don't need to go there" - um, no...you had 12 or 14, they had >120..), lack of up-to-date info "early May: let's try this brand new drug, Gleevec - we won't know too much, though as it is brand new"..well, maybe new to you, but not to the oncology community) and what I believe to be less-than-professional actions by this dr ("oh, yeah - my assistant was supposed to find out about that treatment and that phone consult [months ago], but I don't know what ever happened"), yet everyone else wanted to "wait and see what happens".

DD is often like a petulant child, refusing to eat (she was quite happy to be losing all that weight early on - DUH) or more recently refusing the transfusion and dr appt. I understand her frustration and we can all be contrary at times, but IMO (and yours, if I understand correctly) that is when the team should be stepping in - after all, what grown adult wants to listen to parents? (or even a spouse many times, I guess) Yet, more than once DD has spent more than a week in the hospital (seeing one or more of her drs daily) and the team coordinator did not even know she was in the hospital. The dr told us she cannot be alone but did not tell her that, so "[we] are treating [her] like a child".

Well, it's back to a covering dr tomorrow so we'll see if fresh eyes will make a difference. Today was a bad day, so maybe tomorrow will bring a change pixiedust:

[Mackey Mouse]

Hugs to you.. I am praying that someone will step up to the plate and help this woman.......

And for some reason all of them resent MD Anderson.....I have had DH's doctors make remarks about that hospital as well. Bottom line is you go where you can to get the best treatment. I do not think this hospital and doctor are doing the best for your DD.

And yes, they need to talk with her and take you all out of the hot seat..... you are still the parents, they are the doctors, the experts, they need to step it up a bit and help her.

I am annoyed myself at this treatment.

[Pea-n-Me]

How did it go today, kdzgon?

[kdzgon]

How did it go today, kdzgon?

It went badly (for our hearts) but better for our DD. It was a very long day.

It started out with a phone call from her live-in boyfriend - the visiting nurse told him she likely would only have two weeks left, and strongly recommended we try to get her admitted to the hospital. Of course we already knew this, but it was quite a shock to him.

We arrived at DD's house shortly after (~10 AM)- her appearance was shocking to say the least. She had some difficulty talking, and she was slightly confused as well. (The nurse had started her on oxygen, but she didn't want to use it and had already taken it off.) I got her settled with fresh water and ice, something for her severely chapped lips, cleaned up her area, etc. By time I was done, the visiting nurse stopped back, as she was very concerned that DD was alone (she didn't know we were on our way when she left).

We discussed DD's condition as well as the fact that it appeared DD really had no clue just how little time she has left. She had deteriorated quite a bit in the 24 hrs since the nurse had seen her, and some confusion was setting in, most likely due to the lack of oxygen. Based on the rate her numbers have been falling, her hemoglobin is probably somewhere ~4 or so (even her mucous membranes are drained of color, and her teeth are stained with the sloughing cells, etc.) The nurse also recommended she be transported by ambulance - even without seeing her, I would have agreed - I had already spent the night before on the internet searching for transportation options.

DD was NOT happy about either the suggestion to be admitted or the ambulance. She did agree that IF the doctor recommended it at the appt, she would go in to the hospital.

Lots of phone calls ensued - to her insurance co, more than 15 ambulance providers, several to the doctor, the county human services dept, etc. No ambulance would transport her to the hospital where she has been treated, with several refusing to transport her due to low blood O2 levels. I then called the doctor back - who, BTW, is a covering doctor, and absolutely wonderful. (Had her regular dr been available, I would have pushed to have her transported to the nearest hospital, which also happens to be connected to one of the best cancer hospitals in the country.) I told him we had two choices - go by ambulance to the closest hospital, or come to his hospital via our private vehicle, where the dr had already arranged to have a special nurse available to meet her upon arrival. We spoke at length about her condition, her knowledge of her disease progression and the family's knowledge, and the reality that there was nothing more that can be done to fight the cancer. He then offered a third option: we take her - by ambulance if possible, car otherwise - directly to the hospice facility run by the hospital. It has only 12 beds, is peaceful and quiet, she would be admitted and placed in a room immediately (our avg emergency rm wait at the hospital has ranged from 10 - 18 hrs before admittance and rm placement), they would care for her properly as well as make her as comfortable as possible etc.; he would make all the preliminary arrangements for us. She would then be evaluated and meds adjusted as needed. Once there, he would also help transition her (and remaining "clueless" family members) to the realities of her condition. We would have to sign a DNR, but she could always choose at any time to transfer to the hospital if she decided she wanted to continue the fight.

I absolutely agreed this was the best option and asked him to make the arrangements. I then discussed it with DH, who agreed it would be a good option. I contacted the nursing station at Hospice, and they took a bunch of information incl her pain meds, as they needed to order them and have them on hand before she could be admitted. They switched her oxycontin to a patch and her other pain med to a liquid as they said she would soon be unable to swallow the pills. As the pain meds would not be there until 6 PM or so, we had to wait until then to bring her in. The social worker then called me, and we reviewed more info, and I told her of the problem I was having getting an ambulance. She said she had one more to try, and would get back to me. She called me back in a short while, and had an ambulance willing to transport her. It was a company that had turned us down earlier - apparently the difference was we were now going to Hospice and not the emergency room, so their parameters are different.

The next step was harder - breaking the news to DD. We committed a lie of omission, and did not tell her there was a choice. We told her this is where the doctor wanted her to go as admission would be easier for her, it was quiet and peaceful, family can stay overnight with her, she would then be evaluated and could always choose to transfer to the hospital. (All true, even if not all the truth.)

I was on the phone with the social worker when DH came running in a panic - DD needed to go to the bathroom, but was unable to walk the 6' or so - in fact, she was unable to take a single step forward. Problem was, there is no bedpan, and DD is up around 280 - 290 lbs right now. I managed to fashion one out of the raised toilet seat, a bowl and use of the lift chair. DH helped her stand again while I got her bandages in place and her clothes on, and we got her seated again. I relate this story because not a half hour later, DD is complaining about "do we really need to use an ambulance?".

The ambulance arrived around 5 pm, and they were great with her and extremely efficient. It's a good thing I had my gps, though because they were gone in a flash. I met up with DH and DD at hospice - by time I got there, they already had her in a room, pain meds administered and all set up with ice chips, call button, tv remote, etc. She refused the O2 when she first arrived but agreed to put it on just as I walked in. The staff at this Hospice is absolutely wonderful - I just cannot describe how great they were. They are all aware of DD's apparent fragile remaining grasp of hope and our method of gaining her admittance there and just operate around it. They say they will continue to take their cues from her as their only goal is to make sure she is as comfortable as possible. She also has no advanced directive, no will, no living will and is now to medicated to legally sign any docs. DH signed the admission forms and signed the DNR on condition they not reveal that fact to DD until after the doctor has had time to transition her as to her prognosis.

So, it was a wonderful day in that it is a 180 change from the treatment she has been receiving (visiting nurses excluded - they have been great) and we know she is in a good place for where she is in her life right now. I know DH had to finally truly accept what is to come but is much more at peace with the inevitable now that she is where she is. It was a terrible day because there is simply no hiding from the fact that she needs to be here, and she will continue to deteriorate, most likely at a rapid pace. I will be surprised if she makes the weekend, a sentiment when expressed not challenged by either the visiting nurse or the hospice staff.

Thank you so much for sticking with me these last days - the burden of knowing what was happening was simply too much to carry alone any longer so I appreciate the extra hands and shoulders you so willingly extended.

[Mackey Mouse]

ok..tears dripping down my eyes here..

God bless you all, I am usually very good replying.. maybe later tonight I can think a little more clearer, I am overwhelmed..

She is so lucky to have you as her StepMom.. so lucky.. hugs to you and your husband and prayers for DD..

Please let her have no pain and God be good to her..

[Pea-n-Me]

I'm so glad she's in a good place and being well taken care of. Nice work. :thumbsup2

I hope you can rest a litte easier today. You will all remain in my prayers. :hug:

[kdzgon]

A quick update between visits: it seems DD's last conscious day may have been yesterday. She was in a lot of pain early this AM, so they have doubled her patch pain meds, and re-administer every two hrs. It keeps her totally out of it, but it is for the best.

How's this for a tear-generator: they were getting ready to change DD's bandages, and DH pointed out the ones we had brought with us (they are special order w/ silver nitrate, and we thought they might not have them on hand). The nurse commented to DD that "[her] dad is a really special guy", to which she replied "yes, he is".

To the best of our knowledge, that is the last clear statement she has made, as just an hour or so later conversation attempts resulted in lots of unrelated, mumbled responses or just plain gibberish. She has not spoken at all since late last night. She will likely have many visitors the next day or two, but it is unlikely she will be able to communicate with them in any "normal" way. Her condition has worsened significantly and they expect the trend to continue. I really think it is God's way of dealing with this for her, as she just did not want to confront the reality of her situation.

[Jcricket Fan]

My prayers continue to go out to your DD and you & DH.

I am glad that Hospice care is bringing some relief.

Peace be with you.
Colleen

[Mackey Mouse]

Her Dad is truly a special one. It is hard for me to read these sometimes because it is a reality that loved ones face when their family member or dear friend is at the end of their battle...

Please know we are here for you and I do believe that God has stepped in and taken control. Please let her have no pain...

HUgs to you and your husband.. prayers for DD. It is so nice to know that when it gets so bad that Hospice is there for you..

[kdzgon]

LOTS of people visiting last night, although she was not responsive, except with the nurses when they changed her bandages (a very painful procedure).

I'm pretty sure she is aware, though - I truly believe while the pain meds put them "out" in many ways, they are more cognizant of the presence of others, much in the way a person will sleep better when his/her spouse is present even if sleeping deeply. I think that particular "sixth" sense heightens as our other senses fail us (her sight was going as of Wed evening - she was complaining she could not see, which the nurse said was all related to her failing systems).

DH told her she should go if she wants to, that it is OK. I don't think she's ready yet, though. I think the transition will be more difficult because she didn't really have time to process it all, but I hope and pray she manages to find peace before leaving.

Thanks again for the prayers and thoughts.

[Pea-n-Me]

Thanks for keeping us updated.

[kimis]

You are in my prayers. There is nothing else to say except I have been there also. However I love Hospice. They were great for my mom and our entire family.

[Mackey Mouse]

Thanks for keeping us updated... prayers for her and for all of you...

Thank God there is such a thing as Hospice.

[dee47]

First of all, you are all in my thoughts today. I am so sorry you are going through all this, especially of the heels of other similar tragedies you've suffered in recent years. However, at least you are in the best place possible, under the circumstances, right now. :hug: :hug:

Regarding the 6th sense you mentioned: I've seen it as a hospice volunteer and also, more recently, when my ex-MIL was in hospice dying from gallbladder cancer (an evil disease -- 3.5 months from diagnosis to death, in her case). She was in a coma, and her vitals were so bad the nurses were saying she couldn't possibly last another hour. However, her younger son was on a plane on his way to CT (he lives in FL, and she deteriorated INCREDIBLY fast, so everyone was scrambling). She lived for another 6 hours (!), enough time to allow him to get there, talk to her (though she was supposedly in a coma), and hold her hand (along with the rest of her family) as she died. We can absolutely control when we go, to a degree most people don't appreciate. And people are more aware, even in their final hours, than we sometimes realize. That is why in hospice training they always drilled into us to watch what we say around the patient, no matter how "far gone" he or she looked.

I wish you all peace. :hug: :hug:

[safetymom]

I am so sorry to hear about her health struggles. She may already know what is going on but hasn't told anyone. Just support and help her and she deals with all of these.

I will keep you all in my prayers.

[kdzgon]

Thank you all for your kind thoughts, words and prayers. We lost our DD Friday evening at 10:45 PM. I know she is finally out of pain, but there is a hole in our hearts.

I really think her rapid decline was God's way of helping her deal with the fact that she did not want to acknowledge the reality that her time on Earth was coming to a close. She passed peacefully and without a final struggle.

Laurie

[Pea-n-Me]

I'm so glad she made it to the facility where she could pass with dignity, and I'm so sorry for your loss.

You can be proud of the good work you did to help her. :hug: :hug: to you and her Dad.

[safetymom]

Oh my goodness. I am so sorry for your loss. I will keep you in my prayers.

[antmaril]

I am very sorry for your loss.

[Mackey Mouse]

Laurie and her dear Husband..

I am so truly sorry for your loss. I know how hard you and your husband worked to keep your DD comfortable through this horrendous disease. Know in your hearts that you did everything possible to help her and she knows that too. Sometimes it is so hard to face that realization that there is no treatment that is going to make this disease stop and finally your body says enough, but your mind isn't quite there yet. Thankfully, you were able to get her into a caring Hospice, thank God for those wonderful people who work in these facilities..and they took care of her and took away the pain.....from everyone.

Please know that we will be thinking of you all the next few days. Take care of yourselves and your DH...we are here to listen if you need us.

Hugs to you both.....

[dee47]

You are wonderful parents. I am so sorry for your loss. :hug: :hug: :hug: :hug: :hug: :hug:

[kimis]

I am so sorry for your loss. I know from expierence that words don't seem to help right now but soon you will look back on what all of your friends said and you will be comforted. I know the whole in your heart and it will always be there. However I have found that when we lose someone so close to us and our heart seems empty and has a huge hole in it than for some reason our heart just grows bigger to make room for other memories. Thank goodness she left this earth knowing she was surrounded by the love of her family and with dignity that Hospice gives its clients. You and your family will be in my prayers for a long time.

[Jcricket Fan]

My deepest sympathy to you Laurie and DH for the loss of your DD.

I will be keeping all of you in my prayers.

Peace.
Colleen

[Tnkrbelle565]

So sorry for your loss:hug:

[mommasita]

I am so very sorry :hug:

[DebbieinWA]

I am so sorry for your loss. My thoughts and prayers are with you and your family right now.

[kdzgon]

Well, the services are over, and now comes the hard(er) part - adjusting to life without DD. I just wanted to say "thank you" so much for all the support and kindness from everyone here.

We are scheduled to move over 1,100 miles in just a week from now - a move we have delayed due to DD's condition. So, please understand if I disappear from here as quickly as I arrived at least for now, especially as DH is in no shape to help me get everything done that we need to do for the move.

I only hope that I will be able to come back and offer comfort to others as was done for me here,

Thank you, thank you, thank you.

Laurie

[Pea-n-Me]

Well, the services are over, and now comes the hard(er) part - adjusting to life without DD.
This, I understand more than you know. We lost my BIL just a few weeks ago, suddenly, at age 42. It's been difficult.

Good luck with the move, and we'll see you later. Glad we could be helpful.

[tray]

with the fluid buildup, for instance (called anasarca).

Does anyone here on the boards have anasarca (or had it..or know someone with the condition)? It's basically a generalized swelling (edema) from what I've read. On a large scale.