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Another Update of Scott

Btrcup's picture
Btrcup
Posts: 287
Joined: Jun 2004

Hi all, hope everyone is enjoying this beautiful day (well here in Baltimore anyway).

Well, Scott is back in the hospital again. He went in on June 6 and was released this past Saturday (at least he was home for Father's Day). Then Sunday night into Monday morning he was vomiting again. Had to bring him back to the ER. He was supposed to come home today, but everytime he thinks about coming home, he vomits. I called him earlier today and as soon as he heard my voice, he started vomiting (I'm starting to get a complex!!).

My mom thinks alot of this may be psycological. The thought of coming home and something going wrong is making his so upset. He kinda agrees. He says he gets so anxious about coming home and he's so much better in the hospital. They give him his meds IV and when he comes home, he takes them in pill form, but can't keep them down. Then the pain starts and he's doubled over. Monday was so emotional for us both...all we did was cry all day. He thinks this may be the end stage and, honesly, I think so too. He is down to 130 lbs and nothing is getting past his stomach. He has a drainage tube in his stomach now so that he doesn't have to vomit so much.

I am leaving here shortly to go over to the hospital. I am going to stop at his oncologist's office and demand that he sit with me and tell me if we need to start considering hospice. Just the thought is scary, but Scott and I are both sick of the sugarcoated answers we get.

Every other time Scott was in the hospital, he always bounced back. I just don't think he's going to bounce back this time. I am now on, what I call, robot mode. I am trying to work, take care of 2 kids, a house, a pool, the lawn and spend time with Scott at the hospital. It is wearing me down.

OK, I bitched enough today. Thank you for letting me vent...once again. I'm off to the hospital to get Scott outside to enjoy this beautiful day. Love to all...

Linda (Baltimore)

themis01
Posts: 168
Joined: Feb 2005

Linda,
I am sorry to hear your news. I hope you two were able to enjoy the day as much as possible together without too much sadness. Let us know about the hospice care and if you all will be getting some help.
Erika

CAMaura
Posts: 719
Joined: Feb 2005

Dear Linda,

You have never bitched.....and even if you feel as if you are, you have a wonderful sounding board here. I find you to be incredibly strong - incredibly.

Your idea of sitting with tho oncologist is a good one. I so much hope that he is willing to take the time with to have a heart-to-heart and to let you know how he thinks Scotts truly is. My thoughtsa nd prayers are with you for this potentially hard conversation.

I am glad, though, that Scott is in the hospital where he can relieve you of his care and where he can feel safe.

I am so sorry that you are juggling so much. Again, good thoughts and prayers are coming your way.

Wishing you the strength of the angels right now.

Love and hugs,
Maura

pjenks57's picture
pjenks57
Posts: 112
Joined: Nov 2003

Dear Btrcup, you and Scott are in my prayers. Bless your heart you have to be awfully strong to hang in there but with the help of God I know that you can do it. I have been thru some bad stuff too and when it seems like your are about to throw in the towel if you pray to God something will take you by the collar and get you up and going again.
Take care of yourself too. Don't forget YOU.
We love you and support you and will pray for you and your family.
God Bless
(((((((((Linda & Scott & Kids)))))))))

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

You both are so strong, though I'm sure Scott isn't feeling that way right now. I'm hoping you can get some answers from the oncologist as well as some suggestions. for how to get through this time. Also it might be worth talking to the doctors at the hospital to see if IV therapy could be given at home. The VNA or Hospice (if they are involved) could care for that while he's home.
You are in my prayers.
Mary

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Linda,
I am so sorry to hear this news. I hope the Doc will give you some definite info. Sometmes they just don't know and they don't like to tell you that very often. I will keep you and Scott in my prayers.
Love,
Taunya

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

(((((Linda and Scott)))))
Thank you for taking the time to update us. Your strength is amazing; hope your doc can help you understand more of what to expect. You are all in my prayers. Judy

oneagleswings
Posts: 425
Joined: Jan 2005

Linda:
You are so strong to be able to come to the board and update everyone on what you and Scott are going through. Acceptance that this monster may be winning the war is stageringly sad- I hope that your oncologist can give you some answers and that there is some way that iv meds and at home care can be provided if that is what you and Scott want...I'm crying with you and pray for you and all your family.
Bev

tkd3g
Posts: 768
Joined: Aug 2004

Hi Linda.

I am so deeply sorry for these hard times you , Scott and your family are going thru.

Such strength, courage and fortitude.

Please know that we are here for you and you are all in my thoughts and prayers.

Please let me know if I can do anything.

Love to you and Scott,

Barb

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Linda:
I find your strength totally inspirational. Hang in there...
Buster

offutt9's picture
offutt9
Posts: 88
Joined: Jan 2004

Hello! I visit this page every once in a while. I have primary liver cancer. But I wanted to tell you that I think you are a very strong person. Its a very difficult time for you right now. I know that from visiting this page, that this is a very good place to vent and to get good advice. These people are very caring people. But Please don't forget to go to God in prayer. He will help us thru anything. Thats how I survive everyday. I'll be praying for Scott and you, and your family... In Gods Love Barbara

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Hi Linda: it sounds like it may be time for hospice; they can do wonderful, if not ordinary things to make Scott comfortable; please take care of yourself through this-no one seems to consider the caretaker, who really needs more care.. they say God doesn't give us more than we can handle, but sometimes I wonder..you and Scott are in my prayers. Nanuk

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Linda -

Sorry I didn't reply to you sooner...

First let me just say that you are not "bitching"... you are have a totally normal response to a totally abnormal situation. We do not live in a society where it is the norm for our spouse to be so gravely ill at such a young age. We do not live in a society where we find ourselves typically thrust into the role of Mrs. AND Mr. Mom, homemaker, pool cleaner, gardner, AND caregiver to an ill spouse. Your posting is quite healthy, I believe. You have so much on your plate, you need a place to vent andthat's why we're here. We may not be able to help you with the day to day things, but rest assured we're here to lend you emotional and spiritual support.

I think Bud and the others who have recommendad hospice or visiting nurses or some form of home healthcare are right on the money. Linda, I know you put on your Wonder Woman suit every morning when you get up (we won't discuss her Golden Rope...), but you know, every once in a while even Wonder Woman had to ask Superman to lend a hand (albeit just for the really BIG stuff like re-freezing the polar icecaps, etc.)

It's not a matter of giving up or even resigning yourself to this being the "end" with Scott if you get help at home. It's about keeping your family unit - frazzled as it may be - intact. It's about making Scott comfortable while he is at home. Allowing him to spend time with the people he loves most in this world and spending it in a place that reflects that love and spirit of family. He's sick. He's frightened. He needs that home environment - but he needs to be comfortable when he's there. That's what hospice does. I doubt you will find a "Length of Service" clause in their contract. I know people who have been on hospice care for a long time and some who have eventually sent them home because the patient was doing much better.

Hospice is not just about medical care - there is so much more to it than that. It is care that values quality of life until death (WHENEVER that is) that not only intends physical care but also emotional and spiritual support. It puts the patient at the center and in control of his or her own life and care. After all, that's we all want and need - some measure of control over our own life/destiny.

You come here and ***** anytime. Just understand that here we don't refer to it as "bitching", we refer to it as "Expending emotional flatulance" - we CRC folks relate so much better to the butt metaphores!

Looking forward to seeing you BOTH in a few weeks and holding you both in my thoughts and prayers until then.

- SpongeBob

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Linda....as usual I am at the end of the list of posts. I am still waiting for someone to get rid of "time zoning!"
Everyone has said it for me Linda but please know that Jen and I think of you, Scott and your kids every single day. With all that you have to cope with sweetie I find it incredible that you are able to come here to tell us how things are.....you are the epitomy of courage babe and we all love you for it!
It is time I give you something special.
Kanga's rainbows are for all those who need to be comforted in a very special way. The RAINBOW I send you Linda is for love, strength and compassion. Sent from my mind to yours. Close your eyes Linda and feel the love that comes with all the colours of the rainbow........love that you cannot touch ......but something that you can hold on to in thought. Jen and I would dearly love to hugg you both.
Be well and be safe Linda, Ross and Jen

JKendall
Posts: 186
Joined: Nov 2004

Hi Linda...I can't add any more to what's been said by the others; aren't they a great group of people? Just please remember to take care of yourself and try to get some rest, so you can be there with Scott. If church friends/family/neighbors etc are offering, let them help you out with the stuff like the yard and the pool, and maybe even making some easy to warm up meals for you and the kids. When my wife got sick some of my co-workers started a rotating schedule for meal prep. That was a huge help! And they truly enjoyed helping out. Angels...all of 'em.

And you're not bitchin'...come share with us anytime.

Take care. Jimmy

bsrules
Posts: 296
Joined: Mar 2004

Linda,
I am so sorry for not replying sooner!!! I want you to know that you are always able to vent here. I sure have alot in this past year and a half!!!! You guys have been helping me and now it is your turn to lean on us!!!!

I know to well how rough things are for you right now. Everyone here has hit everything right on the money. Hospice was a God send for Bob and I. If it wasn't for them managing the pain that Bob was in he wouldn't of been able to get around as much as he did. Sponge Bob is right they are not just for the end of life they are for most important QUALITY of life. That ment the most to Bob and I. They were a shoulder lean and cry on when I was feeling overwhelmed. They are super people!!! I look a them as a very special gift that was given to us.

Try somehow to get yourself recharged as you are going to need it. I don't mean to scare you but it is very tough. PLEASE take care of yourself as best you can!!!! I know you charish every moment you spend with Scott!!!!

Remeber that if you ever need to talk you can post here or email me!!! You were there for me know let me try and help you somehow if I can.

Prayers and Bright colorful Rainbows that were sent to me are heading your way!!!!

Love Always!!

Sue

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