Sister's Cancer; Please Answer!

[PPL]

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.

[justrisabovit]

DEAR SISTER, I AM SO SORRY ABOUT WHAT YOU ARE GOING THROUGH WITH YOUR SISTER. I HAVE WORKED AS A HOSPICE AND PALLITIVE NURSE FOR THE PAST YEAR, AND I WAS CONCERNED WHEN YOU MENTIONED THAT THE HOSPICE NURSE TRIED TO TALK YOUR BROTHER THROUGH IRRIGATION OF THE LEFT NEPHR. TUBE, UNSUCCESSFULLY. MOST HOSPICE NURSES AT THAT POINT WOULD GO OUT, REGARDLESS OF THE TIME, AND VISIT THAT FAMILY AND PROVIDE WHATEVER NURSING CARE IS NEEDED, WHETHER SUPPORT, HANDS ON AND/OR

TEACHING. IT MUST BE TERRIBLE FOR YOU AS A NURSE TO BE IN THIS POSITION. I URGE YOU TO BE A SISTER, AND ALLOW YOURSELF THE LUXURY OF FORGETTING YOU ARE A NURSE. ASK, OR DEMAND, WHATEVER NURSING SUPPORT IS NEEDED FROM THE ORGANIZATION YOU ARE RECEIVING CARE FROM FOR YOUR SISTER, AND ALLOW YOURSELF TO JUST BE HER SISTER, WITHOUT THE PRESSURE OF HAVING ALL THE OTHER ANSWERS. GOD BLESS. R.

[PPL, BSN, RN]

I know, I was surprised too! He's a trooper though and has been elevated to saintly status! Anyway, the tube is draining for now, so we shall see what happens next. I'm planning a visit after the New Year. She lives with my other sister and her husband, who we call "Mission Man" as he's always being sent out on little missions and/or coming up with ways to make my sister's days easier; some of them quite creative! I have tried to distance myself, since I am a nurse and let the other nurses take over; easier said then done, for sure! Since you work in Hospice, can you tell me how the end might come, as far as any experience with this type of cancer? Thank you all for your posts!

[JillR]

PPL,

It has been a long time since you wrote that first post. I have not responded because I really have no knowledge that can help you. But I just wanted you to know that I have been following your posts and am wishing the best for you and your sister. Just wanted you to know that I did not forget you.

Cancer is a big problem in my family. My uncle was just recently told he had the green light after his second fight with Lung CA, and now I have an Aunt that is recieving radiation tx due to a malignancy they recently found in one of her lymph nodes, and my cousin with breast CA is still refusing tx. Both of my grandfathers died from CA, and it feels sometimes like I am just waiting for the next diagnosis. Who's next?

You are a strong and wonderful sister, your sister is very lucky to have you. Keep us posted on your sisters condition. Good luck during this trying time.

Jill

[ktwlpn, LPN]

Originally posted by PPL:

I know, I was surprised too! He's a trooper though and has been elevated to saintly status! Anyway, the tube is draining for now, so we shall see what happens next. I'm planning a visit after the New Year. She lives with my other sister and her husband, who we call "Mission Man" as he's always being sent out on little missions and/or coming up with ways to make my sister's days easier; some of them quite creative! I have tried to distance myself, since I am a nurse and let the other nurses take over; easier said then done, for sure! Since you work in Hospice, can you tell me how the end might come, as far as any experience with this type of cancer? Thank you all for your posts!

I have been thinking of you and your family and wondering how things are going...it sounds like kidney failure will probably be the way your sister will leave -I am sure you know that this is not a painful process..however any kind of complication could occur and you may never really know the whole story-this took me a long time to come to terms with when it was happening to my father and mother.No autopsies were done and now I try not to think about the whys and how but instead focus on how close we were during the last months.We worked hard so that my mom could die at home in her own room-where she most wanted to be...The only regret I have is that I feel that her pain could have been better controlled at the end-we met with some resistance with a particular hospice nurse who was not anxious to come out to the house in the night and star a morphine drip.I should have been more demanding at the time-but s/l roxanol held her til the next day when another nurse was able to start a subq infusion...she died the next morning.Every hospice has different policies but sometimes we must be strong advocates...

[PPL, BSN, RN]

Hi everyone, and thanks so much for posting. We have ovarian, breast, colon, prostate cancer in our family. Not too good, but my sis was in the lowest risk group for ovarian, so go figure. She has been having excruciating rectal, stabbing like spasms, and has to evacuate herself manually for the most part, as there is bowel encased in tumor, partial bowel obstruction, etc. But today she's doing better, as they have increased her Duragesic, and also has Dilaudid, and Percocet, I believe for breakthrough pain. Also, they gave her a topical anesthetic oint too, which has helped. I have to say, they've been really good about getting her the pain relief that she needs; they are not shy about that. She emailed me about her Christmas gifts she received, and the ones she gave, which especially gave her pleasure. She is profoundly deaf, and of course unable to work since is so ill, and receives a little disability check. Of course, she should not be spending money on ANYONE, but you know, that is the thing that has really lifted her spirits, plus the things she received; mostly comfort products and also tells me about visits from different ones. She's waiting for that new grandchild too! Jill, is your cousin's ca contained to the breast or mets? How is she doing? I'm happy that my sis'd kids are grown. It would really be awful to have younger children, like your cousin, and then choose NOT to fight anymore. Well, goodnight all and thanks for being there!

[JillR]

PPL,

I am glad your sister had a good christmas, I know I get more pleasure out of giving presents than getting anything. If this gives her pleasure, then good for her.

As far as I know my cousins CA has not metastisized yet, but I am not sure she would tell me if it had. She told me last night that one of the reasons that she is not getting tx right now is that she just wants to be a mom to her kids and not sick all of the time. She has lost so much time with her children due to illness that I think she just wants what is left of the time with them to be normal (if there is such a thing).

She is also HIV positive thanks to her drug addict x-husband (you just never know when you get married what people are really like soemtimes). She takes so many meds that it is hard to have a normal life as it is. I think she has given up hope to tell you the truth. She has other medical problems on top of all of that.

I know I have to respect her decision, but it is so hard to do. She has really been a great friend to me all of my life and I will miss her tremndously. I am in WI and she is in AZ and I don't even know if I will ever see her again. I would love to take the time off work to go out there, but I am really trying to save the time for when she gets really sick. We were able to spend some time together last summer and that was great.

Anyway, enough about my family.

Please keep us posted on your sister.

Jill

[PPL, BSN, RN]

WOW! Your poor cousin DOES sound like she's on a sinking ship! Still, I think of the relatively long periods of time that my sis had good health between treatments, and after a course of chemo was over and done with, a three year long remission, the first time; it's really hard NOT to want them to fight, but of course, I don't mean now, as she has too much mets. I can't imagine what it would be like to take chemo along with the drugs for HIV; that WOULD be frightening! Also, my sis had two misread CT scans during approx a year-year and a half long period, which did NOTHING to help her situation, so things that might have been acted on, weren't, until things got out of hand. And so it goes in our less than perfect world! Thanks all and Happy New Year! I worked and helped to bring in Y2K last year, and now, I'll be working to ring in this New Year too!

[PPL, BSN, RN]

Hi. Thanks so much for posting. There has been some talk about a pump, but it seems from your post, that should be the last resort, correct, because then they're teathered to a pole? I know she has quite a bit of nausea and takes Reglan for that, but she's still swallowing and eating. She has mets up by her diaphragm, indenting her liver, plus in other places within the peritoneal and pelvic areas. It DOES help to know about the different forms of pain relief available for her. Thanks

[justrisabovit]

dear PPL,

I hope your sister is comfortable at present. I agree with the person who thought that renal failure might be one type of direction she goes in, however that also encompasses so many other systems, that it is best to just take each day and each symptom as it comes and deal with it at that time. Sometimes you can worry so much about certain symptoms or problems that might be a possibility and they actually never occur.

I do want to really emphasize that our hospice group has managed to make even the most complex patients quite comfortable on sub-lingual liquid meds such as morphine and oxycodone, which are used when a patient can no longer swallow or take their usual meds by mouth. These come in liquid, highly concentrated forms, 20mg per ml, and use an eyedropper delivery, and are given as I mentioned s/l or buccally in the cheek. They really can provide excellent comfort to the majority of patients. There really are only a few circumstances, for example, if a patient has nerve pain or bone pain, or pain that has not responded to these meds after a reasonable trial and titration up to higher doses, then a sub-cut., IV or epidural pump might be used. If a patient has pain that has been well managed with opiates orally, there is no reason to worry about staying with the sub-lingual morphine or oxycodone.

Sometimes patients and families worry that an IV or other infusion is the only way to make someone comfortable, and that is just not actually true. But that misconception can prevent a patient from experiencing comfort and confidence in their pain management regime, so I tell you this in order to help you feel more secure if your Hospice nurse elects to use the sublingual meds first, as I am sure he or she will.

What you are going through is hard and painful, but I promise you there are so many gifts within the process, for you and your loved ones. Allow yourself to see these things and experience them fully.

God Bless.

[justrisabovit]

Dear PPL,

I am new to this format, so I may not be very adept at following the computer things, but I have not seen any posts from you since December 29. I am worried that things have changed for you and your family, although certainly I can hope that things are also stabilized and you are all okay. I have thought of you so much, and hoped that you are all doing okay no matter how it has turned out. Many thoughts and prayers are sent your way. God bless.

[PPL, BSN, RN]

Hi posters. My sis has only one functioning kidney now. They capped off the left nephrostomy tube, as no urine for several days. The right one seems to be doing well on it's own, so far. Other than that, she still is eating, having daily struggles with bowels, and pain seems to be under control; which is the most we can hope for. Thanks everyone.

[PPL, BSN, RN]

Dear nursing friends, it has been so long since I have been on the site; so many changes! I wanted to post that my sis passed away @ 10:28 am on June 24th. She was able to be cared for lovingly at the home of my other sis until her death; and I am so grateful for that! I have been working full-time and traveling back and forth to see her every other weekend, faithfully. My sisters and I had some wonderful visits, right up until the week before her death! I am two and a half hours away, so did not get there in time, but she was surrounded with the love of my other sis, brother-in-law, wonderful friends and care givers and the Hospice nurses. She donated her body to science, but they were able to keep her body until I could get there to say my good-bye and see her for the last time. When they return her remains, she will be cremated and buried in my mother's site. My father is still alive but when he passes, he'll be there too. She was struggling alot just before her death, and I believe internal bleeding and seizures. She did not seem to be in pain and they were giving her everything for comfort. When she finally stopped struggling, she took her final breath and had a beautiful smile on her face! The following weekend, her youngest son was married, and though she did not get to be there, we really believe she was there in spirit! My other sis and I were there and it as all the more moving and many tears were shed, tears of joy and healing and release. I thank all of you who posted to me. You were a comfort and a help. Thank you all so much!