Sister's Cancer; Please Answer!

[PPL, BSN, RN]

My sister is losing her fight with ovarian cancer. She was just released from a well known cancer center in upstate NY, and is coming back home, probably to die. She has failed chemo Rx's, most recently Taxol. Her latest crisis was hydronephrosis, due to both ureters blocked. Nephrostomy caths were placed bilat. to drain urine externally. I am a rehab nurse, so am not familiar with this. The doctors seem dead set against any more surgery, but I have not received a satisfactory explanation for this. She may have one option, and that is to have radiation to shrink the tumor enough, at which point, they might be able to do surgery to place ureteral stents(sp?). I don't understand why they can't go in again and remove what tumor they can surgically, and place the stents at the same time. Can anyone enlighten me re this, and also on the care of these nephrostomy tubes? Also, I am in tears writing this because I want to do SOMETHING to help organize the march, because I believe in it so much, and I feel like I'm letting everyone down who is working so hard. Can one of you great organizers come up with one thing that I could do that would be MY contribution and that would also be very helpful? Of course, I am still telling everyone that will listen about the march, and after the night I just spent at work(backbreaking), I just want to participate even more, but I am also overwhelmed with what's happening with my sister. Thanks so much, everybody.

[JillR]

PPL,

I have not answers for you. I am sorry about that, but I jsut wanted to let you knoww that I will be praying for your sister and you.

I am so sorry that she is going through this. I just wanted to let you know that I will be thinking fo you and your sister.

Jill

[PPL, BSN, RN]

Thank you Jill! I don't know why I am so focused on the surgery question, but since I don't have enough information from the medical professionals treating her, I am getting bits and pieces from her, and trying to put it together. Also, I think she is giving up, and I know that has to be HER decision, but I'm not convinced there still isn't something to be done; keeping in mind quality of life issues, of course. I will be picking her up tomorrow and will know more then about what she's feeling and what she's willing to do; if there's something to be done. Maybe someone can answer what's the danger of the surgery, if a person is likely dying anyhow; what's the sense in NOT trying it? That is the puzzle for me. Thanks again.

[JillR]

PPL,

I can't say I know how you feel, because I don't.

I have a cousin who is on her third time fighting breast cancer. We have always been close, I lived out in Detroit with her and her family for a while.

The first time CA was found was about 10 yrs ago at the ripe old age of 25. A few months ago the found more CA, in the breast again.

She has chosen not to take tx this time. It breaks my heart. I can't say that I agree with her decision, but I also intellectually know that she is the only one that can make this decision. BUT, what I know intellectually, does not make me feel any better about the decision emotionally. She has two children one is 13 and the other is 4. I know that she has planned well for the care of her children after she dies, but can't understand how she could make the decision to not fight at all with the children being so small. So I have all these conflicting emotions and knowledge going on, and I am finding out that none of my nursing knowledge means a thing when it comes to personal delemma's (SP) such as this.

I find it hard to communicate with her, without being too pushy. I try to respect her decision, but find myself wanting to scream at her to DO SOMETHING!!!

I could not possibly know what it has been like for her to go through multiple chemo, radiation and surgical intervention, but I have this overwhelming emotion in me that really wants her to try just one more time.

All of this nursing stuff we learn in school about respecting the patients decisions means nothing when you face something like this in your personal life, and now I can finally understand why family memebers try to take control of their loved ones care.

I am telling you all of this because I suspect that you are having many of these very same feelings.

Maybe the concentrating on the surgical thing is you way of having some control of a situation that feels way out of control to you.

Good luck, PPL. Hang in there.

Jill

P.S. This is amazing, I didn't even know that I had many of these feeling because I never verbalized them before ( not even to myself, in my thoughts). So thank you for letting me face my fears.

[Julie, RN]

I too am very sorry to hear about the sadness

and frustration that you and your family are

going through. I am an inpatient oncology nurse. On my unit we care for external neph tubes by flushing them with a syringe qS /c 5-10cc of NS. There is usually a colostomy bag surrounding the tube to catch the urine and the flushes.

Here are some site that you might find helpful:

NIH Neph Tube Care: http://www.cc.nih.gov/nursing/nephrost.html http://www.cc.nih.gov/nursing/nephros.html

"The Cancer Connection": http://www.geocities.com/CollegePark/Union/1521/

You are in my thoughts,

Julie, RN

[PPL, BSN, RN]

Thank you both! Jill, what you mentioned is my problem exactly! I feel she's dragging her feet, and too soon, there will be no choices left to make. I TRY not to push her, but than she turns to me when each crisis develops, and I feel helpless to undo things; you KNOW what I mean. Julie, thank you for the site; it was EXACTLY what I needed, so I printed it out and am taking it with me. Thanks nurses, so much! I'm off to vote now!!!

[PPL, BSN, RN]

Hello nurses. I posted with a smiley face to lift my spirits and the spirits of those who work with the terminally ill. I have been off the site until yesterday, helping with my sister, and it has been a rollercoaster, let me tell you. When I first picked her up, she was asleep, and I thought she was dead! I was shocked to see her, compared with the previous month, before she went to NY. It turned out(after spending several hours, observing her, interacting and assessing,etc.)that she was WAY, WAY overmedicated, talking out of her head, falling asleep with food spilling on her lap, during mid bite,etc. I reduced her meds slowly and within 72hrs, she was becoming much more alert, interested in eating, safe to leave alone, getting about some, and at one point, woke me from a dead sleep in the early am, to take her to Cracker Barrel for a huge breakfast! We were able to talk about Hospice, and though it took some organizing, I got her all set up/signed up, wheel chair, tub chair, meds dilivered to the door and even though she was doing pretty well on just darvocet, she had the strong stuff available per Hospice, which then gave her some peace of mind and control to increase her meds if needed. Then, it was off to the Radiologist for evaluation, and to set up rad Rx to hopefully reduce the tumor and pain and swelling to her leg, with the understanding of absolutely no hope for a cure. This was made quite clear to us. The next day, a CT was done to prepare for Radiation, and to compare with prev Ct done in NY. No sooner got home, when we rec a call from the radiologist that she had a blood clot in her pelvis and it was arranged for her to be adm to the hospital for anticoagulation Rx. Hospice and the Dr and I had quite a discussion, as he believed this to be a very possible cause of her pain and swelling, and considered it quality, NOT heroics. Hospice disagreed! So, off Hospice she went and back in the hospital for three days. Since then, she was having less pain and swelling, plus had started Rad Rx, and has had four treatments so far. Well, our spirits were improved, and I was able to come back home, planning to see her Dec 8th for our yearly sister Christmas. Now I just found out that she is vomiting, has terrible abd pain, most likely a bowel obstruction, and the Dr is unwilling to treat or refer her to a Dr that will. He said if she chooses agressive treatment, "she'll have to shop around for another doctor," as he "can do no more for her at this point, and neither can anyone else, except Hospice." So, that is the situation, Hospice is coming back onboard, and the future at this point looks very bleak. I thank you for listening to this update and hope you all had a great Thanksgiving, as ours was really great during our brief reprieve, and just prior to this latest crisis. I am following the MNM site as much as possible, but wish I could be of some help. I am contacting my state rep to see if there is something helpful I can do from the computer, as wherever I am, home or with my sisters, I have a computer available. Thanks sisters and brothers in nursing.

[ktwlpn, LPN]

Originally posted by PPL:

Hello nurses. I posted with a smiley face to lift my spirits and the spirits of those who work with the terminally ill. I have been off the site until yesterday, helping with my sister, and it has been a rollercoaster, let me tell you. When I first picked her up, she was asleep, and I thought she was dead! I was shocked to see her, compared with the previous month, before she went to NY. It turned out(after spending several hours, observing her, interacting and assessing,etc.)that she was WAY, WAY overmedicated, talking out of her head, falling asleep with food spilling on her lap, during mid bite,etc. I reduced her meds slowly and within 72hrs, she was becoming much more alert, interested in eating, safe to leave alone, getting about some, and at one point, woke me from a dead sleep in the early am, to take her to Cracker Barrel for a huge breakfast! We were able to talk about Hospice, and though it took some organizing, I got her all set up/signed up, wheel chair, tub chair, meds dilivered to the door and even though she was doing pretty well on just darvocet, she had the strong stuff available per Hospice, which then gave her some peace of mind and control to increase her meds if needed. Then, it was off to the Radiologist for evaluation, and to set up rad Rx to hopefully reduce the tumor and pain and swelling to her leg, with the understanding of absolutely no hope for a cure. This was made quite clear to us. The next day, a CT was done to prepare for Radiation, and to compare with prev Ct done in NY. No sooner got home, when we rec a call from the radiologist that she had a blood clot in her pelvis and it was arranged for her to be adm to the hospital for anticoagulation Rx. Hospice and the Dr and I had quite a discussion, as he believed this to be a very possible cause of her pain and swelling, and considered it quality, NOT heroics. Hospice disagreed! So, off Hospice she went and back in the hospital for three days. Since then, she was having less pain and swelling, plus had started Rad Rx, and has had four treatments so far. Well, our spirits were improved, and I was able to come back home, planning to see her Dec 8th for our yearly sister Christmas. Now I just found out that she is vomiting, has terrible abd pain, most likely a bowel obstruction, and the Dr is unwilling to treat or refer her to a Dr that will. He said if she chooses agressive treatment, "she'll have to shop around for another doctor," as he "can do no more for her at this point, and neither can anyone else, except Hospice." So, that is the situation, Hospice is coming back onboard, and the future at this point looks very bleak. I thank you for listening to this update and hope you all had a great Thanksgiving, as ours was really great during our brief reprieve, and just prior to this latest crisis. I am following the MNM site as much as possible, but wish I could be of some help. I am contacting my state rep to see if there is something helpful I can do from the computer, as wherever I am, home or with my sisters, I have a computer available. Thanks sisters and brothers in nursing.

My heart is breaking for you and your family. I read your posts with tears in my eyes and I would like to offer a few words of advice and encouragment...The most precious gift we can give a loved one is to help them die with dignity -on their own terms..and it is so hard... For your sake you must recognize that a time may come for you to be "sister" instead of "nurse"-try to have your support system ready-I will be thinking of you-and will keep you all in my prayers..

[PPL, BSN, RN]

Thank you for your kind words. My sis was re-evaluated for Hospice since I posted and they are ready to come onboard at any time. They suggested that my sis cannot really make a decision about treatment/or no treatment until she finds out if she for sure does have a bowel obstruction, vs symptoms from Rad Rx, and also, needs to know the exact results from her CT scan. All they told her was that she had the blood clot, which they then treated, but gave no other info re the extent and spread of tumor compared with the previous CT. So, that is the current plan, plus, if she wants treatment, and treatment is possible, she would have to find a Dr willing to treat. Obviously, the previous Dr who is no longer willing, has seen the scan, but she at least needs to have the full results in order to help her in her decision making. Emotionally, I am in a fairly good place, as I feel that if she would even pass tonight, I have really done the best by her that I could. Nevertheless, we're hoping for this last Christmas, if it's to be. Thanks everyone!

[PPL, BSN, RN]

My sis emailed me that her left nephrostomy tube has stopped functioning, no urine all day. She is two and a half hours away right now, so I feel pretty helpless to assess. I guess the Hospice nurse talked my Brother-in-law through the irrigation procedure to no avail. She says the right tube is draining, but looks concentrated. They have checked for kinks, etc. I have referred to the sites listed above, but have no further ideas that they might try. I do not understand this stopcock, and wonder if it might get turned off somehow by accident? Worse case senario is that her kidneys are shutting down? Is this usually how these patients die? I am sorry to post on Christmas, but if anyone can advise, I would appreciate it, even if it's bad news. Thanks everyone.

[PPL, BSN, RN]

Oh yes, you are so right; I can't fix her! I saw the results of the latest CT scan! However, today when I called, I found out that when she woke up this morning, there was glorious yellow urine draining from that left kidney! I do not know what the problem was, but for today anyhow, she awoke with this great Christmas present; and for that, I am grateful. She has a new grandchild due any time, and she would so like to be alive to enjoy the baby a while. My other sister and I are trying to prepare for the worst, whatever that is and whenever it DOES happen, but then when a crisis occurs, if there IS something simple to be done, it's hard NOT to respond, because her fear is so great! Nothing heroic, and she started to talk about dialysis, if those kidneys do shut down! I certainly do NOT think that would be a good idea! Hopefully, Hospice can help her see that even if this was possible, it would just prolong her agony, waiting for the next and then the next crisis. Do you happen to know how these patients usually go? Hospice thought most likely kidney failure, but I have very little experience with these patients. Thank you for your post, and I hope everyone DID have a great Christmas, because my sisters and I did

[mustangsheba]

Dearest PPL: It doesn't sound good, honey. From my own experience of looking back and wishing I had done things differently, I would say to you put everything else aside that you possibly can and go be with your sister. You really can't fix her. Just be with her. Let her talk. Really listen. Talk about all the things you love about her. It will give her comfort to know you're there for her. I know you're frustrated and even angry, but this is her process, and what she needs right now is your love and support as her sister. Give her your permission to die if that's possible. Let her feel your caring. It sounds as if there are many prayers with you today, mine as well. You are not alone.