9-30-07 – Chloe… its me chloe

*Ok so this was all in like 2 paragraphs and she didnt do the heading the way we do them now or make a category for herself, so I’m making this a little more readable.  Didn’t change a word tho.  Just fixed the heading and paragraphed some. …Cody*

*

Its me chloe.  yesterday was a bday party and it was at the churc cross the street and thye had a castel to jump in and it looked like such fun but we coldnt not do it. but that church gotted a new huge and huger swing and all stuff thing and i desided i would to and so i did. and then Susie comed out and she did to and she went higher and higher and it was so fun. and john tooked picturs.

and we only did it for a few minites but every thing we got hurt so bad today gbut it was worth it. swinged so high we feeled free for a few minites. til _ _ _ _ _ _ _  gotted scared and sayed stop it now so we did. and then but the swing was so high or maybe like john sayed we is so lite now but it keeped on goiing high and hardly slowing down and our arms got so tired and we got kinda scared

and then that bad girl gyspy but she not real bad like them ones just kinda like that drake boy.  but anyway so that gypsy girl sayed hey help me stop. but i dont care. i;d do it again in a minite and so would susie cos we dont hardly get no fun no  more not since evil started coming after us to distroy us forevir if they win.

i dont know why they wont stop. they has way won all ever time. and all the figting here even tho drake loosed that gyspy girl she sitll say we stand qwiet on our honor no mater what them evils say but i tell you i dont beleeve _____  sayed them things. no way. 

and i so scarred it gona end up with me being stiked out here alone agin in charge with a bonch of crying litles or somthing like last time we almots died but if i do i ready this time cos i lerned how to rite bills and them bigs even maked a big thing goes all cross the desk with strusions of axaktly what to pay when and so i can do it if i gota. i know i can. 

and if it hapens agin i can do it good  cos i know how pay bills this time and rite cheks and so i will even tho i actally only 12 to but i sayed 13 for a long time cos i thot itd make me seem  biger and get me loved but it didnt so ok. 

i not even dont get yeled at. i just get inored or yeled at to just like every all bodies here does to so wahatever ok.  i beened here forevir seem like. since we was a litle kid so i can take it. i beened abbused worsn this so if it come that i gota take care of everthing agin lik last time we amost diied i can so ok

chloe

9-12-07 – Amy… Go me. Trying again. Never say die. Never give up, never surrender or some shit.

NOTE:  3-2-09 – trying to make more entries openable so we’ve editted some - blanking out names and some other info and stuff. 

We got a right to die not totally silenced.  that’s all.    

this was all a long time ago – it aint no more than that – no trying to cause no trouble at all.   just needing to go out not feeling so triggered off, releasing pressure on us where we can so we can hopefully live longer.

*

Going nuts here without some kind of outlet since Gypsy and Cody shut everything down trying to get us out of _____’s line of fire while we fighting not to die.  Evil bitch.  I hope she falls in that ______ she loves so much and gets ate by a _________.  Well not really.  but she aint my fave person for a long time now and i’m even convinced myself that she’s dead-set on destroying us, literally seeing us dead.  i’m finally convinced.

k setting this up wore me out.  I’m pathetic.  Least I opened one back up tho so go me or somethin

Amy

5:30 p.m.

9-6-07 – Cody & Gypsy… 1st post-op visit of 2nd abd surgery

*Unfinished &/or unposted entry now posted courtesy of Eve*

*

**Cody started this last nite.  I’ll finish it.

  

So we went to the surgeon today for the first post-op visit.  We’ve made ourself get up and move around several times a day since the surgery last Thurs but its been rough.  Up more than a few minutes, and start feeling sick and dizzy.  And the pain shoots thru the roof.  Somebody here said percocet has been our friend.  I think that aint no lie.

Started doing some better yesterday, and today is better again.  Wouldn’t have made it to the surgeon if it hadn’t been even with the walker. 

yesterday, we only had to take 2 percocets and today only 2.  Across the board here people hate to take meds, especially pain meds, cause of the brother.  gigantic trigger factor.  and everybody here refuses to take anything that makes us feel any weirdness or drugged feeling at all.  and that makes it difficult as hell to treat a chronic pain patient like us.  anyway

*

So the wound surgeon saw the incision site yesterday, and the shocked reaction on his face scared us all shitless.  Then he busted out with “woo hoo! Happy doctor!”.

1st of all, thats just funny.  2nd he’s older than us in the body so that made it funny too.  I mean our body is full of teens but he’s older than us in the body so it just sounded funny hearing somebody older than our body saying that..  woo hoo is a very Okie thing to say tho.  And trust me, having the surgeon say that, or at this point, any med pro, saying something positive about our condition/situation made us happy campers. 

*

Anyway John had seen the mass in a lab container before it got sent off and said it was huge so obviously the outside which showed and was open and was around what was open was very deceptive and the dimensions we thot we could feel werent actually the size of the mass.  John said the mass was actually bigger than a ping pong ball. 

the surgeon said that we had “a quite large mass”, that it wasnt as deep as he had feared, but was bigger in circumference than he had thot (I guess so since we have a little over 3″ scar when we was expecting one about 1 1/2″ tops), and that it extended VERY near (and he strongly stressed the “very”) the intestinal wall, but had not broached it, and that the biopsy had come back showing “old suture material” in it. 

We feel so damn vindicated over that biopsy showing old suture material cause people here had been trying to tell them docs since the fucker started hurting 2-3 years ago that they thot a staple or sutures or something mighta been left in there.  so we’re all like YEAH we told you!  anyway

*

Obviously that damn fool surgeon who put the permanent feeding tube in 9 years ago at the last near-death when they found gangrene on our stomach, which immediately ruptured, had left the sutures in which connected the tube to the intestines. 

We know the OR nurse had told somebody here and the fam that, when they had filled our gut with air in prep for the surgery to remove the broke tube, the ruptured tube had popped out, and that the surgeon had got pissed off and just stalked out  of the room, and the OR nurses didnt know what to do so they just sent us to the recovery room.

Of course the damn idiot was supposed to have REMOVED the permanent sutures even tho the fucking tube HE put in busted.  And he should’ve cleaned and irrigated and sewn it up from the inside and all that shit.  But he didn’t.  So we ended up with a full-blown abdominal abscess that it took docs here in the city about a half dozen procedures to get rid of.  They did it that way cause we’d already had a laparotomy and we was so high-risk they didnt wanna do another general.  But even they left the “empty” abscess cavity.

So the “fix” lasted for 9 years, with the body forming a literal capsule of scar tissue around the healed rupture site, forming a mass bigger than a ping pong ball.  and it sat there, surgeon said today “festering” cause of the biopsy revealing old suture material in the mass, trapped in the scar tissue capsule til the area took a direct hit back in May when we fell out of a fucking chair, breaking the capsule cause the top hadn’t scar-tissued or whatever. 

Anyway so just under 4 months later, almost a week in the hospital, and an attempt to remove the mass under local, we finally got the fucker removed by a wound specialist surgeon.  Evidently like the only one in the city cause there’s only one “wound center”  for nonhealing wounds and he’s the only surgeon we’ve seen there. 

So much for the idiot surgeon who was consulted in the last hospitalization, which was over this wound, whose impression, without even  LOOKING at the site, was that all we needed was neosporin and a bandaid.  Stupid fucker.  I’d like to find him and kick his ass.  We’ll never forget his name tho and, over our dead body, will ANY member of our family ever see that man.  idiot

*

*

 *** K its the next day, and this is G and where I came in to finish this out  –

The wound surgeon was so happy about how our wound looked that it made us almost giddy.  the last thing ssaid to us had been our home nurse coming by the morning before the surgery to tell us this was do or die time when our body would prove whether it can still heal a wound or not.  and, if not, we’d be left with a surgical nonhealing wound now and with no hope of having the hysterectomy to hopefully save our life.  So that was like not a positive thing to be focusing on right before we went into surgery 

But its healing and the wound surgeon’s happy so we’re happy.  What’s bad tho is that we immediately lost 5 pounds!  We’re now hubbing on the 80’s, and that is so not good.  there aint no words for how not good that is. 

Means the cachexia is still not in control.  And that GYN and oncology docs are already so nervous about the hysterectomy they’re saying they aint doing it till we weigh 110 AND  they gonna put us on that TPN even at that before the surgery. 

110 pounds seems like it might as well be 1000 to us right now.  the weight issue haas become so overwhelming.  After losing 5 pounds immediately tho just on this relatively minor surgery, we can understand their nervousness about what a major surgery’s gonna do to our weight situation.  And that sucks  so bad cause we feel like we fucking eat all the time.  eat  eat eat  Its just fucking agonizing. 

*

Who would’ve ever thot eating would become like torture?   But it has.  Cachexia is a bitch.  dont let nobody tell you it aint.  and we’ve found out lots of facts about cachexia that we didnt see on any of the shit we looked up online or that even the docs have told us.  Home health and them DHS nurses have told us that they know way more about cachexia than even the docs do cause they work with cachectics every day.  and that makes sense.  anyway

Evidently our metabolism is like in hyperspeed, and that’s when  we’re relatively calm with the chronic pain fairly under control.  Let us get upset or some kind of trauma like that pretty minor surgery happen to us, or somebody who shall remain nameless totally go off on us or “mother punish” us some more, or some new nutty accusation get thrown out about us, and we can literally drop several pounds overnite that we dont gain back. 

Like I said up there, we lost 5 immediately after this surgery, and we aint gained a single pound back.  the  good news is that we’ve been fighting hard and eating ourself to death, even post-op, so we’ve been able to maintain at the 5 lost.  

we got this terror that’s hit us all, even the guys, that we’re gonna dip into the 80’s.  We are literally one traumatic episode or one going off on us deal from sliding down in to the 80’s.  And i dont care if our body is small, adults just aint supposed to be in the fucking 80’s.  then add on to that that we gotta be 110 to get our hysterectomy, we think about it and we’re like dude we’re so fucked. 

*

Sharon talked to the GYN nurse last week before our surgery tho, when our hysterectomy had to be put off afuckinggin over this gut wound, and asked her to beg the doc to accept 104 – which was what we weighed when we initially set up the hysterectomy.  Even 104 felt like a massive amount to gain.  She said “well what are you now”, and sharon was like “98″.  and there was a long pause, and the nurse said “oooooohhhhhh”.  

So I’m thinking the GYN and oncologists aint gonna be happy or accept or proceed with us in the low 90’s now.  Our terror, and one that all these home health people has counselled us on repeatedly and expressed too, is that our cachexia either wont stabilize or it’ll stabilize at a weight too low for the docs to be willing to proceed, making us inoperable, and dooming us to the either cancer or precancer developing staying in us and continuing to grow til we either die from it or from the cachexia or heart failure or whatever.  

Like that Karen Carpenter.  She died from an ED AFTER she was doing way better and had gained a bunch of weight.  Was young but her heart just gave out and she dropped dead.   and here we have a heart condition and are on heart meds.  and recent x-rays showed our heart at the upper limits of normal, and that can be a sign of onset of congestive heart failure, which is a complication of our disease too.

oh stop.  I cant think about that no more.  I’ll just overwhelm us all.   Basically, we finally got the gut on the road to healing and thats encouraging altho the cachexia might make it impossible for us to have the operation we gotta have cause we’re way in worse shape than we was in May when the fall happened that broke the abscess capsule.  And this just might be the time we’ve used up our 9 lives/miracles from God. 

*

trying to focus on what we’ve heard Sharon say so many times.  Since the last near-death, when the docs was so sure we was gonna die that they told john and Beth to contact a local funeral  home for our body’s transport back to Oklahoma, sharon’s said surviving that, every day we get since is “gravy”. 

Their prayers for all them years to survive long enough and functional enough to get the youngest daughter thru high school and set up in college, came and went.  and not only that, but we survived long enough to see them both get high degrees and become extremely successful professionals. 

And we’ve lived long enough to see them both married.  And long enough to, not only see our grandchildren born, but to have relationships with them, and to make them books of love filled with literally hundreds of what they call “stories” and we call “isms” about their life. 

And we’ve long enough that we’ve built up enough IRA again that john might not be financially devastated by our death if he’s smart about it.

So hey, like Sharon says, its all gravy.  Now, we pray every nite for enough days to see our youngest _ _ _ _ _ _ _ _ _ _ to reach 15, figuring that’ll give any more kids _ _ _ _ _ _ _ might have enough time to get old enough to have good firm memories of us too.  But, if we dont get it, we’ve still been gifted by God with over 9 years we sure wasnt supposed to get.  And we’re grateful. 

*

Could sure as hell use both of the two physically strongest people in this system tho, Drew being #1 and Drake being #2.  K Cody just said put him, Cam, me and Amy behind them, and I agree with that so here we are listed too.  

We need all the really strong people at the front we can get cause of the fact that only Sharon, Chloe and Susie made it thru the last near-death to remain fronters, and two them is kids.  So we figure, this time being way worse with the cachexia shit making us end-stage, we’re probly gonna lose some of our strongest people again even in best-case scenario.  So we NEED D back!!!   fuck his broken heart shit.  we need him.

It aint looking hopeful for my boy tho.  we aint giving up tho.  Trying other avenues to reach him. 

I keep telling myself what D swears, “there is ALWAYS a way”.  and he’s the expert.  He’s the strategist.  He oughtta know.  So i aint quitting on him.  no way.  and when I say I aint quitting on somebody i love, never giving up, I fucking mean it.  You can take it to the bank.

besides  I got a ace in the hole now.  Maybe 2.  Got Jess right here in  person – who is one of 3 people closest to D in the whole world – the other two having deserted him. 

I got at least one of his outside kids – Charlie.  altho cause of the depth of trauma he’s suffered over losing chosen kids, she’s not a chosen kid, she has remained his neice.  But she’s like the first chosen kid, even neice, he ever had cause these two system goes back as far as that first system that left them here so I’m counting charlie as a possible ace in the hole.

Jess has already pulled him out before when his whatever wouldn’t/couldnt/whatever.  I’m placing money she might be able to do it again or that Charlie might.  Hell I’m still placing money that I might. 

I know he loves me.  he needs to stop being stupid and irrational about outside people who love you and then dont, and put his energies in to them who really do love him no matter what.  And that #1 would be the ________ outside and me inside.  he needs to come back to us. 

Even tho the _________ is #1 ace in the hole, can’t really use them except for their presence even tho they know him personally and address him as “mister”.  its so cute.  anyway tho cant actually have them call him out. they’re too little.  but once we heal from this surgery and get these staples out, we’ll have the interim between til the next surgery, the big one, and I plan to have them here every minute possible to hopefully tap in to him cause Drake loves them with everything in him.

Oh and his dog.  D loves that dog.  And annie’s pathetic sometimes about him.  You can tell sometimes when she gets up on the bed and looks at us like she’s looking in to us, searching for him. 

She’s definitely DRAKE’s dog.  We call her the dark one cause she’s such a punk.  ha   its true tho.  she’s his dog.  and she keeps looking for him in us.  you can see it, when the monster doodle gets right up in our face, the searching, straight thru our eyes, her looking for her boy.

I’ll get him if its the last thing I do.  We need him.  Besides he is loved.  D is REALLY loved by so many.  He needs to buck up and not be destroyed by loving those who dont love him back, or at least not enough to stick with him.  Something’ll jar him.  Something’ll click.  I gotta believe that.

*

Gypsy. oh yeah and Cody did the 1st several paragraphs.  he secretly loves it when i jump in on his notes. 

9-5-07 – Amy – unsent… begging chosen fam to accept what we can do

NOTE:  3-2-09 – trying to make more entries openable so we’ve editted some - blanking out names and some other info and stuff. 

We got a right to die not totally silenced.  that’s all. 

this was all a long time ago – it aint no more than that – no trying to cause no trouble at all.   just needing to go out not feeling so triggered off, releasing pressure on us where we can so we can hopefully live longer.

*

*Unfinished &/or unposted entry now posted courtesy of Eve”

*

*

I’ve taken so long to respond cause I dont know what to say without getting yelled at.  I’ll just give it my best go.  but if what always happens there always eventually happens and some big jumps in and works me over, John’ll take this away from us too cause we cant take no more.

John saying we cant talk on IM right now aint got nothing to do with not loving you, any of you. constant being left and coming back and being dogged, and silence for four months, upsets people here so much we lose several pounds every time. and we’re trying to stabilize and not die  here. 

we are post-surigical right now with a huge open wound.  and we aint had the big surgery yet.  Our weight is almost down in the 80’s now.  we could die just from this and not even ever getting up to a point again where we’re strong enough to have the big surgery we gotta have to maybe save our life.

*

and now my dad’s gone for weeks, Drake.  and after almost four months of silence from you alll, it dont look like he’s gonna be back cause what did him in was the silence, voice connection taken away from him.  we told and told people there that so ya’ll know.  i aint revealing no shocking secret saying it.

 so ya’ll dont wanna talk to us by voice then ok.  but we cant talk on IM right now cause john says so. 

and i’m the only one left right now at the front to talk to that ya’ll dont hate for whatever reasons who’s stood thru the four months of voice disappearing thing.  if I aint good enough and my best aint good enough then i donno what to say.  but i love you and i’m here trying to do my best and John did NOT say no IMs against you at all.  He did it to try  to protect us a little bit cause he’s scared for us.

cant we just talk about regular stuff?  i so tired of all this trauma.  i need to be good enough for somebody.

just me amy

9-3-07 – Gypsy… just had 2nd abdominal surgery

 Had the 2nd of hopefully just 3 surgeries on Thursday.  2nd one on that old abdominal abscess site that got busted open when Drew fell out of a chair trying to answer a phone way back in the middle of May. 

Its still hard to process how such a little fall could cause so much trouble to the point of literally threatening our life.  We’ve now had 2 surgeries on it, and also spent almost a week in the hospital with all kinds of docs trying to figure out how to close it/get it to heal.

The morning of the surgery, our home nurse came by, mostly just to send us off with a hug and encouragement.  Jess sat in on the visit.  She/they are being such a tremendous blessing to us, taking care of us and the wound and shit.  They’re all excited to get to use that Medical Assistant training/certification. Its cute.  I said “cute”.  shoot me.   

anyway Hom’s also taking care of the house and feeding us and, well there aint no question in our mind but that God sent them to us, and to John.  We been so scared and worried about John that that alone has been making us sick. 

We should have our daily aide any day.  was supposed to have gotten her last week.  they might be hving trouble finding one who can, or will, cook good and cook our food for us who lives close enough.  Anyway will call about that tomorrow or next day if DHS dont call.

*

the home nurse said that morning before the gut surgery “well this is do or die time.  We find out now whether your body can still heal a wound.”  

None of the shit we looked up on cachexia said this but evidently another element associated with the cursed cachexia is that the body can become unable to heal wounds. Finding that out explained a lot.  Like why every single time a nurse or PT or whatever medical person thats come around us always asks if we have any new open wounds.  And the nurse has told us flat-out that the cachexia is at least part of the reason why this gut wound has been such a bitch to close/heal.

*

so we had the surgery Thursday.  the opening of the wound itself was smaller than a little finger nail, but the “capsule” around it, well before the 1st surgery, and was about the size of a quarter, and was so well-defined that you could even see it and feel it.  even we could feel it with our fucked up sensation in our hands.   So anyway it was overall about the diameter of a quarter and we’re so emaciated now that the docs and nurse could feel the bottom of it, and all estimated it to be about 2″ deep. 

So knowing all this, we expected an incision about 1 1/2″, thinking yeah they’ll just pop that thing outta there and it’ll be all good.  What we got was an incision that measures just over 3″ and connects to the original laparotomy scar cause the surgeon traced it all the way back to the intestines where the permanent feeding tube had been placed that last time we almost died and they thot our stomach was dead cause it had gangrene in it.   John saw the mass, and said it was huge. 

So we have this hella huge incision.  and it hurts like a sonofabitch.  I cant even think of a way to describe it.  its been like hell.  and every day has felt like its been a week long.  Percocet has been our friend.  But, even with that, its only just bearable. 

*

We’re gonna start tonite trying to leave the door unlocked again cause Hom wigged out cause they couldn’t check on us in the nite last nite, and the man has told us that he’s had a hard time dealing with it since people here started locking the door at nite cause one of his greatest fears is that we’ll die in our sleep and he’ll find us dead, so he always checked on us throughout the nite whenever he’s home cause he’ll jolt awake having dreamed we were dead, and at least always before he left for work (he works nites).  

He explained that thats why sometimes in the nite, he’d accidentally scare or irritate people here by knocking on the door – cause he’d just had a nightmare that we was dead and he couldnt bear it, had to check.  that made us feel both valuable (in a time when we’ve been so emotionally battered that most here got no sense or worth left) but it also made us feel bad for the occasional times in which somebody here has reacted to being startled awake by knocking that we’ve gone “John!  What the hell are you doing?!?!”  So now we know and we’re like awwwww and oh man at the same time.  We dont wanna worry him like that no more, so we’re gonna work on getting back to the open door, or at least unlocked door, thing. 

We had always slept with the door open cause people here felt safer that way with our big dog having the run of the house, more protected.  But, __ had some “insiders” who were “terrified” of open doors at nite so them here that had the fear of being closed/locked in worked thru their fears.  and, over time, a couple of the chics here decided they felt much safer too with the door locked at nite, so we’d just kept it up.  But, now, knowing that its reasonable for other people in the house to be worried about us and feel a need to check on us in the nite, we’re gonna work on moving the mentality back to it feels safer to have the door open and the monster doodle having the run of the house. 

*

Anyway so we’re post-op now on our 4th day out, still hurting like hell and miserable and so weak we can hardly move.  But we make ourself get up several times a day cause we have a degenerative disease and have lost so much muscle mass since last fall that we cant take no chances of losing any more from inactivity no matter how much it hurts to move.  the wound looks good altho by the end of the day, its all swollen.  i figure that’s from all the moving around  and up and downing.  But the swelling goes down overnite and there’s no signs of infection.  Oh but DAMN the super antibiotics hes got us on makes us itch til we feel like we’re fucking dying from the itching alone!

So now we just gotta wait this out and hope and pray with everything in us that, when the surgeon removes the staples, the wound stays closed cause if that fucker busts open, we are so screwed.  Our home nurse and also the DHS APS nurses have told us that one of the reasons its so hard to keep cachectics alive is cause of nonhealing wounds/infection and that, plus its hard to keep and get us stabilized weight-wise, and that people never get off home health once cachexia hits. 

So, if it busts open after the staples get removed, not only will we now have over a 3″ nonhealing wound but we won’t be able to have our hysterectomy.  and we know that, at the very best, we have recurrent dysplasia/precancer of the same type as our prior cancer there. 

 plus hell we now gotta gain 16 pounds!!!!!!! before the hysterectomy.  we knno that cause the doc wrote in the last discharge plans that they’re gonna put us on that TPN (total parental nutrition thru the vein) before the hysterectomy. 

Now, we understand why cause we immediately lost 5 pounds after this surgery.  boom.  just on this “little” surgery.  So we’re now at a new lowest low.  but we’ve maintained for 3 days so that’s good. 

we’re trying hard.  and its fucking hard to eat when your hurting so bad you cant even think straight.   we’ve now lost over half our body weight.  its still hard to even process that. 

Gypsy