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Update-post surgery decline-More Update

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

UPDATE-Scan shows blockage in her kidneys and they are performing surgery to remove the blockage. Has anyone experience with this?

I just returned from seeing my sister (dx 03/09 aborted liver resection 2/5/10 and another resection 2/5/10 due to blockage) after two weeks of being home from surgery. Somehow in that short amount of time, she has managed to take a 360 turn for the worse. I had no idea how bad she was until I saw her. We speak every day and she gave no indication.

She is as tiny as tiny can be. She was already thin going into the surgery and well, 8 days in the hospital with a feeding tube and I know she has not been eating since she was discharged, that what I saw scared the daylights out of me! I encouraged her to eat, and she did eat some. She is having digestive issues since her colon is virtually non-existant, nausea from the chemo she re-started and severe back pain. On top, she is depressed. She lays in bed with her curtains closed. I managed to get her out to enjoy the beautiful Santa Barbara weather and take a short walk. She is seeing a psychiatrist and I know she is on anti-depressents. She has no energy for her three young kids, and I am sure it is a vicious cycle, not eating, no energy etc.

I came back to the bay area last night and got a call from her in tears the next afternoon. She went to get a cycle of chemo and they took a urine sample. The doc. says she has jaundice and is ordering a scan of her kidneys; I fear perhaps it is liver failure. Although I cannot imagine if her end is near they would continue to infuse her with the chemo? They aborted the liver resection because when they went in, the cancer was too far spread even though it did not light up on the PET and her liver was deemed not resectable.

My question for all of you long-term survivors, does it get worse before it gets better? Can they do anything to help her eat and gain weight? Do they tell you if the end is near? Can you recover with such a frail frail body?

Please keep us in your prayers. Fortunately my parents are with her now and will stay with her for awhile. I need to tend to my own family but am having the guilt of not being there at this moment.

Thank you all!
Marie

Jaylo969
Posts: 827
Joined: Jan 2010

If positive thoughts count, then know that you and your sister have a multitude of friends sending out good vibes for you and to you.Sisters have such a bond. My sister took my illness harder than I did. She has taken me to every chemo treatment, sat in on the visits with the oncologist...taking notes so I can review and remember later.I'm sure your Sister is as appreciative of your love and concern as I am toward my sister.Don't feel guilty at all. Your Sis wouldn't want that and she would feel a burden if she knew you felt guilty.

Wishing you better days ahead. My heart is sad for you and I hope someone else will answer more of your questions.

Peace & hope.
-Pat

1survivor010
Posts: 8
Joined: Jan 2010

I lost my mother to this disease and they will tell you if the time is near. They likely will put your sister on morphine for the pain if she continues to slide and she will pass peacefully. It is hard to watch her in pain as it was for me to watch my mother decline and when she went it was and this is hard to say to you a blessing because she died peacefully.
I certainly hope this is not the scenario that plays out for your sister but as a survivor of CRC I know that my disease could return and well you just never know. Just be there for her and your family and if the guy upstairs calls for her be there to hold her hand and help her to pass.
I send you and your family my love and I will pray for your sister.

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Marie,

I had the same problem when they opened me up to cut cancer from my liver 11/08. It also did not show up on the PET. I even contacted Hospice as I figured it was all over but the shouting. That is when they went to plan B, liver embolazation 12/08.

My weight also dropped from 185 to 160. Then I figured out with prep for 2 colonoscopies plus surgery in one month, I had not eaten anything for a damn week +.

Yes it is a dark place to be when you hit bottom but you just have to keep the fight up.

Never give up hope. Never give in to that damn cancer. My case is a prime example of that. One month after the embolazation, my scans showed NED.

Hang in there.

Kerry

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

*hugs*

I have no answers for you Marie, only support. I echo others that my sisters, my twin in particular, were so much a part of my cancer recovery and really made me aware of that close and wonderful bond we share. I share with you that my sisters were the ones I trusted would take care of everything and were the ones I was able to let go with and tell my fears. They stood up over and over and over again and showed me they not only would be there for me no matter what, but would take care of my kids and now, grandkids. Although things like this are never easy to talk about, I can not tell you how much they helped me face my cancer and deal with it. My mother, who I love dearly, just couldn't talk about any of it, not wanting to cross any bridges until I got there. Typical Mom- just wants her kids to "stuff" unpleasant things :) Never, never, never let guilt be a part of this Marie. If any of my sisters had said that I would have slapped them silly!

AnneCan
Posts: 3692
Joined: Oct 2009

Marie,

I am so sorry to hear this. I want you to know that I am thinking of your sister, you + your families. I hope your sister has just needed some time to recover from her procedures + disappointment that the surgery didn't go ahead. I think Kerry's story is inspirational, as are many others + hope you + your sister will derive new hope from his post

coloCan
Posts: 1956
Joined: Oct 2009

help if there is no/little desire to eat. Make sure sister not getting dehydrated on top of everything else. Sorry can;'t be more helpful. Hoping things turn for the better....Steve

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Marie,

I am sorry to hear about how your sister is doing. I don't have any experience with getting to "the end", but I imagine that all doctors, surgeons, and hospital staff are all different in how they handle this. You're wondering if they would keep giving her chemo if she's near the end. I don't know- maybe it's time to confront the dr. and ask for a timeline. I actually can't believe I'm saying that, because I've been one who has never, ever wanted any dr. to tell me such a thing. But maybe it's important to be more realistic at this point and ask. Maybe that would focus on stopping the current chemo treatment to something that isn't making her suffer (I wonder how much of her current decline is just a reaction to the chemo itself).
If you do get a timeline, I don't know that I'd share it w/ your sister- not yet, anyhow. Maybe even at this point it's not such a good idea- something about hearing such a thing would likely be something that would make your sister give up. OR maybe it would help her get fired up about looking into an alternative treatment asap & prove everyone wrong! Things could still definitely turn around, despite what any dr. might say- they can only go by what they see and experience w/ other patients, but everyone is different.
I wonder if you could even look into an embolization, like someone else mentioned.
Since the chemo doesn't seem to be doing the job, what about looking into something alternative, like Issels.com or the Gerson Institute? I'm not advocating either because I don't know anymore than what I've heard or read about them. BUT I would definitely check them out asap! What would your sister have to lose? (except maybe money- but you and your family would have decide on that- there are ways).

Please don't feel guilty- I am sure it must be hard to not live nearby, but you have done so very much for her already. Your parents are there & you have to take care of yourself and your own family. Please do check into the alternatives available for her, however. It might be something that could work for her!

Blessings to you and prayers for your sister-

Hugs,
Lisa

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Marie,

I know how scary this can all be. I looked much like your sister this fall. I was so thin that my docs all wanted me to eat around the clock. My appetite was low so I couldn't eat much at a time. I found out that fudge covered oreos have 100 caloried EACH. I kept them by my bedside and would eat in the middle of the night when I woke up. Sometimes I couldn't even eat a whole one.

I don't crave sweets, so this was difficult, but I just couldn't stomach shakes. I would eat small meals and tried to snack on whatever was high calorie and I could tolerate. I did come back from that. I'm still having issues, but I made it. She can to. Hide calories. Add cheese to her soup, make things with real butter, etc. Right now isn't the time to push any particular eating regimine. She just needs to eat. It always amazes me how I lost weight lying in bed.

When you call her, try to get her to laugh. It will help her depression so very much. Even if she doesn't laugh, she'll smile. Figure out how to have fun with her, even if it seems too little. Quality of life is at an all time low for her so shake things up a little.

Know that we are all thinking of you, your sister, and her family. Hang in there.

Outwit. Outplay. Outlast.

Kimby

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I have followed your story and know that you have been nothing but a good sister to your sister. You can certainly feel very good about that - it must be so hard to watch your sister decline like this and I cannot begin to understand what you are both feeling right now.

It's good that your parents can step in for you and let you regroup your life back at your place with your family - you've been at this a long time and I'm sure you are very tired.

I agree with Kerry to fight this thing tooth and nail - to the very end if that's the way it goes - better to keep on tryin' 'cause things can happen as in the case with Kerry's story - good job, man!

I just wanted to offer you my support - you have always been so supportive to me in your posts. I just will hope for a turnaround for her.

And I think everyone had some good advice on this post.

ADDING THIS:

I just saw Kimby's response and she makes great points - she's been to the mountain top and has lived to walk back down the other side - so when she talks, I listen...great job, Kimby - you are uplifting and inspirational and your suggestions are great for Marie and her sister.

-Craig

zenmonk
Posts: 198
Joined: Nov 2009

This is difficult. I guess I can only answer your question based on my experience. For me when they told me I was all clear on my pet scan I had to wonder. I was feeling terrible. So for me yes it did get worse before it got better. I had to start drinking a high calorie nutritional shake in order to keep weight on. Your sisters body may be frail but the mental aspect is just as important. If she is feeling defeated mentally the body will follow. Anything can happen at anytime with cancer both good and bad. I will pray for you and your sister. Much Respect.

thready's picture
thready
Posts: 475
Joined: Sep 2009

Marie,
I don't know about additional treatments, but I know about love between sisters, my sisters is the most awe inspiring individual, she is beautiful on the inside and outside, she is my hero!

You have talked often about your sister and what a wonderful person she is and I bet she thinks the same about you, and you have shown how much she means to you.

I know it is hard on you being away from your sister, but I bet she understands and knows that you would be their if you could. I have a wonderful sister who has had to deal with so many things one of which was taking care of her daughter who was going through a lot with Crones syndrome, and now her daughter has a lot of emotional stuff that she directs towards my sister. I can also tell you that during these difficult times I could not be with her because I had my family who needed me, it was really tough, but she understood.

My sister has come to visit me twice since my diagnosis. She can not come as often as she would like again because she needs to be at her home and take care of her life, I fully understand that and I am sure your sister also understands. Please be gentle with yourself, not accept the guilt that is creeping in. You are there for your sister and you love her. And since sisterhood is so dynamic I am sure she is aware and understands, plus she would want you to take care of your family also.

You and your family will be in my prayers and thoughts.
jan

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

We all understand when our loved ones can't be here because of needing to tend to their own families and issues. We feel your love and totally appreciate even the phone calls! My sisters are both over 7 hours away, so when I need them, I call and they are always there! They have both come to visit when they can and it's always wonderful! I maintain a blog as a way for my distant family to keep up with how things are going for me! When I'm in treatment, it is an invaluable asset not only for me to work through stuff, but for my loved ones to know exactly how things are going without having to worry about when the "right" time to call is! I think all survivors can say that it is SO much worse for the loved ones who have to sit by and watch what goes on, while we have at least something active to do to fight the beast! Don't worry about the times you can't be there, just cherish the times you are, including phone calls and online connections! With today's technology, none of us ever needs to be alone!
mary

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you for your continued support and advice.

dorookie
Posts: 1736
Joined: Jul 2007

Sorry I dont have any answers for you, but wanted you to know that I am praying for your sister and for your whole family. Stay strong, and keep the faith. God Bless you...

*HUGS
Beth

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you for your kind words of encouragement. This has been one heck of a journey and you all on this board have given me strength, hope, kindness and some relief. I cannot tell you how much you all mean to me.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

we'll be here when you need us....Love and Hope to you and yours....Clift

amyb15's picture
amyb15
Posts: 109
Joined: Jun 2009

hi marie
i have been reading all of your posts and I am sorry about your sisters latest news. There is always hope. I will be prying for you and your family. She is lucky to have such a great support system!!!!!

amy
p.s. what your sisters name? I don't know if you've ever mentioned it

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Marie,

I'm praying for you and your sister. Talk to her doctors and see if they will give you their thoughts on her prognosis.

Try not to lose hope, dear.

*hugs*
Gail

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

And from what i have learned, she too has what Pat was experiencing and will undergo the same procedure as Pat. I have talked to her about not giving up and I hope that this will ease her pain and let her start living her life again. THANK YOU to everyone here, you are my sanity and my support. I appreciate all of your replies and prayers.

mom_2_3
Posts: 965
Joined: Nov 2008

I check the boards every day looking for a post from you...praying and hoping that you will post good news about Christina. I think of you so often, of how hard a time your sister is having and what a wonderful support you are for her but how hard it is for you too. You are in my thoughts and prayers daily.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Marie,
I continue to hold you and Christina in my prayers. You are a beautiful sister and I know you have been wonderful for Christina. So good to hear there is a plan. Thanks for keeping us updated.

Aloha,
Kathleen

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

I would like to share my experience with my father and maybe it could help aid you in your choices you may or may not need. Hopefully a trial of some kind will come out. My dad had a heart attack at home. I lived just around the corner I was there in one minute. My brother was there visiting he had already started CPR. I sat and helped do compressions with my brother doing the breathing until paramedics arrived. When they arrived I said a short prayed "Lord please take my father now or bring him back full of life and vigor like he was before, for dear Lord he would not want to be here half the man he was." and he had always told us,my brothers and myself and mom that he never wanted to be left in a wheel chair or home. But none of those choices bother me at all. March 1, 2010 was 15 years he has been gone and I remember it like yesterday, I remember him laying in the den floor, so helpless and not a damn thing I could do for him. I hate that picture in my head. When I remember him, That is always the first picture that goes to my head. Yes I remember a thousand billion others but that one last moment when he gone is always first and I hate it. I wish I would only remember seeing him happy and not on that floor. So you have the choice editing your memories if you need to. Hope this helps some.
Goofyladie (Cass) I apologize ahead of time if this offends I am not meaning to, I just want you to be aware of the emotions that follow.

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

I have sent you a private message with rest of story to give and share HOPE with Christina I too lost alot of weight down to 118 pounds. I am 6 feet tall. I finished chemo at 164 pounds. I am here 12 years later. So never give up the fight. I wanted you to hear rest of story so much here at home I didn't have time to fit it all in.
Huge hugs,
Goofyladie (Cass)

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