Home again!!

Question

I just got home again (for the 2nd time this week) from the hospital, I went in for pain control on New Years day. They got the pain under conrol. They drained 3000cc off my belly and the pain stopped so I came home the nexy day. I was good Friday night and all of Sat,then Sunday the pain started again,unrelenting pain throughout my stomach,sides and lower back..no relief with my pain pills(I took so many I was beginning to feel scared that I could OD myself)  SO back to the hosp. I was placed on Duladid 2 mg IV..the pain stopped. So Monday my Onc comes and tells me he want to pace a catheter in so I can drain myself to help with the pain.  That is done that day..now they just removed 3000cc's on Sat..they drained another 1000cc in just 2 days!!!  At the same time they are trying to get my pain under control They found that the IV duladid per hour did the job.  Then they switched me onto pills to try to control it that way..it didn't work. So my Onc told me that going home with a PCA pump was next to impossible and most insurance will not pay,all he could offer was Hospice..but that would mean stopping any chemo.  So that sucked really bad and my Onc told me that he was afraid that my decline in health was gonna get worse and that Hospice would at least keep me stable.  Well thanks to all the great PRAYER WARRIORS on this site and many like it you have been praying..I did get a miracle...my insurance will pay for my PCA pump, as well as for all the home health to train me on keeping the drain site dressing clean and how to pump the fluid out, as well as change out my port access needles.  I can now also get my taxotere that he wanted to start me on!!!!!  So I'm excited...I will call the Onc tomorrow and get them to set up the taxotere ASAP!!!  The sooner the better...Now I'm at least able to fight back with some chemo.  However he's a up front and honest Onc and  told me that it will be like this for me and it is likely only get worse.  I see some of the effects already...major weakness in my legs..can't seem to get back up standing at times depending as to how far down....But my appetite is back..and I haven't been nausea oe had any vomiting or diarhhea for at least 4 days now!!! I'm sure once I start the chemo, start eating food and keeping it in me I will gain it all back.  I feel at least a little more positive than I did,but I need to face some things I have put off doing...things that are needed like a living will or is that a advance directives??  no matter it is something that I need to look into.  I'm really scared and so mad right now..  So I'm home..with my new catheter to drain the ascites and 24/7 IV pain meds!!!  I'm really sorry to dump on you all,but you all know how I'm feeling....but please if I upset any one please e-mail me personally and tell me so..I mean to not scare or hurt anyone..  Thanks for all your prayers and love I;m sending them all back at you !!!!((((hugz)))~~~~Joanne

crecco · Answer

Joanne,
    If anyone can do it, you can. You will catch on in no time and be able to get rid of those nurses.
   You know that you are always in my prayers.
  Love Chris

Beachwalker33 · Answer

Animals are so helpful in situations like this.Just by petting them ,your blood pressure lowers and experts say pet owners heal much faster,they bring so much comfort don't they? I'm glad you have your precious pooches in bed with you.Just be careful not to strangle them with the stuff your hooked up to,just kidding.Get better girl and a big hug to you and your pooches! Jen

jane65 · Answer

Hi Joanne, Your posts sound more and more positive and stronger, that's such a comfort. Be well and you know we're all thinking positive thoughts about you!
Are all your doggies in bed with you? They know when something's going on and when their love is needed.
Maybe we can all have a cyber coffee klatch, or cyber luncheon since we're all over the world. We can raise a cup, or a glass to good health and peace in this new year!
Take care of yourself,
xoxo
Jane

jlock · Answer

Thank you all for the prayers and love. I would certainly be 1/2 crazy by now... if not for my wonderful family and the ladies of several other forums they'd be admitting me. Life is a bit different now. I keep forgetting to grab the purse like thing they gave that holds the pump and fluid..and sometimes have strangled myself getting up to run for the bathroom!!! Kinda funny at times...kinda heartbreaking at the same time. There is a home health nurse everyday to change the dressing and to keep teaching me and my family how to use the abd. cath, last amount taken was 200cc..much better than the numbers I have been draining lately. I know I have the dressing changes down ..but need to watch more of the draining of ascites. I want to get it down so there will not be a need for that nurse to come out...therefore going back to life before this all started. Anyway ladies thanks alot for the love and prayers. I have seen some miracles the last few days,like my insurance paying for the pain control!!! I have tears now for all your love and support....I wish I could meet you all and give each one a hug. (((((hugz))) love to all~~~~Joanne

dian07 · Answer

Hey there, girlfriend.  I am glad you are able to be home with the little dogs you love so much.....I hope they give you comfort and joy....I'm sure they do.  I also hope your son is around as often as you need him to be.
It is so good you are able to have some control over your life....good luck with your new chemo.  Please do keep us posted.
Peace.
dian

Beachwalker33 · Answer

Oh! You did get the pump for I.V meds good,If you need any support whenever I don't sleep much.You can still overcome this you know.Whats going on with blockages that were starting,Can you keep any thing down,building up your strength is very important.An advance health care directive needs to be done or who will make decisions regarding your health for you if you can't.Talk to an attorney,the social worker at the hospital can help you get this started,and of course a will.And you need to make a decision whether you want a do not resesitate order also! So sorry but these things are important.Rest,Jen

Beachwalker33 · Answer

I've talked to you a few times,noooo hospice that means all life saving measures are stopped and comfort control is what they concentrate on .Ask about liquid morphine,can be taken quite often and Dilaudid pills for breakthrough pain.I know i.v. Dilaudid,theirs nothing better.Once pain gets to a certain point its harder to get under control.Fentanyl patch and transderm patch,ask about those,too!! I'm so sorry.I sware if you lived close I would take such good care of you.God Bless and fight this girl and win!!! Prayers and loving healing thoughts I'm sending your way! Love,Jen

Sandymac · Answer

Joanne,

Sharing.. the good and the "not so good".. That's what this forum is all about. Really happy to hear the Insurance news. Keep up the fight !!! Thinking of you,

Sandy

cirella · Answer

Wow, Joanne, I'm so happy your insurance is allowing you to get the help and relief you need at home.  What a blessing that is.  I hope the new treatment is good for you.  Keep fighting and we'll keep praying.

~L

doicat · Answer

You keep on fighting!  You are such an inspiration for me and no,,,you don't scare me!  I'm glad to know you from your journal etc and just want you to get stronger and hope the new chemo works for you.  You focus on getting better and know that all of us are praying and sending you healing thoughts!  Let us know how you are doing.

Teresa

ladyjogger31 · Answer

Dear Joanne,
I want you to know I'll be praying for you and hoping the treatment works. Just keep on fighting and kicking this monster in the butt!!
Buckets of Teal Hugs and Prayers,
Terry

JC145 · Answer

You are such a brave soul .. God Bless you.  Judy

fungirl1011 · Answer

Joanne, I am so sorry that didn't get the news that you hoped for.  Thank God, that your insurance is at least paying for your pump.  I will be praying for you.  Good luck on the new chemo.  Kasie

marie3B · Answer

Keep up the fight and I will be hoping and praying the treatment works well for you.  Marie

jane65 · Answer

Hi Sweetie,
I feel the same as Gail and Chris, so glad that you're home in your own bed and that you've got things under your control. It's good news that you'll have the pump and home health training, and that the ins.co will cover it.
Your appitite coming back and your tummy working normally is wonderful, I know what a problem it's been for you. Now you can get some of that weight back,and feel better. 
I know that you're anxious to start the new chemo again and start killing the cancer bastards that invaded your body uninvited. Prayers and best wishes to you.
You don't scare us by anything you say my dear, it's the cancer that scares the heck out of us!!!!!
Feel better,and have a good night.
Hugs back,
Jane

crecco · Answer

Joanne,
   You know that our prayers are always with you. I am glad the set back had a bright side. Now you just need to focus on getting better again, and don't give up because it will happen!
  Hey don't ever worry about scaring or upsetting anyone. There is a side to this that we all tend to not talk about much, but in reality we need to, as it is part of the whole journey that we face. I say this a lot but our fear of the unknown, is really the biggest fear that we face. It would help a lot of us to talk about this side of it more, get it out in the open, and realize that it is not just one of us that have these feelings and emotions, but each and every one of us.
  Hang in there!
  Love Chris

bcppc · Answer

Joanne,
  Lord Bless you!  I am so sorry to hear what you are having to deal with now.  I am so inspired by your strength in even sitting at the computer to tell us all about what is happening to you.
 your post does not scare me!  if anything it sure helps to hear what you are going through so we can pray that much harder for you!  
 God is Good!  I'm so glad you got the equipment and care you need at home approved!
    Keep Your Head To The Sky!!
Ana/bcppc

Teresa222 · Answer

Joanne,
Keep up the fight! That is exactly what it sounds like you are doing.  Be strong.
Teresa

TrudieC · Answer

I'm so happy this setback has a little bit of a silver lining and will allow you to continue your fight.  My thoughts and prayers are with you.

dawnlyn · Answer

Joanne,

I am so sorry my heart goes out to you, I am glad your insurance is going to take care of paying for the pump and what you need at home.  You are in my thoughts and prayers.

Love,
Dawnlyn

gah_70 · Answer

I can't imagine anything you said scaring anyone.  The most upsetting thing is that you've had to spend so much of the last week in the hospital.  I'm glad they have your pain under control, and you'll be able to drain the fluid off instead of having to go in every other day to have someone else do it.  I hope you'll be able to start Taxotere soon and see if you can get this thing under control.  What a relief that your insurance is going to pay for the pump and the Home Health training!  One less thing to have to worry about since your plate is already full. Continued prayers for you and wishing you better days ahead!

Gail