any news on Juliej?

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juliej
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Re: any news on Juliej?

Postby juliej » Thu Dec 27, 2012 1:27 pm

I was released before Christmas with a big bottle of oxycodone :D and a huge sack of 4x4 gauze pads and 4x7 microfoam pads :(

The drainage tube incision just would not stop gushing. This caused a small battle between the nursing staff and the attending physician. Head nurse says I can't/shouldn't be released with that much drainage. AP says "she's healthy as a horse... it'll taper off and she'll be fine." Head nurse calls in pain management team to help her case, but I'm not in major pain so no help there. She then calls in wound care team, but before they can get there the AP has signed my release papers. (Cleaning staff is probably sighing with relief since I've literally depleted the supply of clean gowns, sheets, and blankets on the 15th floor :D )

I take a taxi to my apartment and start an endless cycle of bandage changes. Every 1-2 hours I soak through five 4x4 8-ply gauze pads. The output is so heavy that I "float" the microfoam coverings right off my skin. I don't dare sleep in my bed (since I don't have a cleaning staff to do my laundry like at MSK). I seriously think about wrapping myself in plastic and sleeping on the floor. In the end, I decide to sleep on the couch and set an alarm for every 2 hours to change the bandage. Once in awhile it only takes an hour to soak through and soon my pajama top is covered in yellow slime.

After 2 days of this, I am tired, cranky, and "slimed-out." My skin, which hates tape anyway, has big, red, bloody lesions from the 8-10 times daily bandage changes. My right side looks like I've been in a fight with a slimy alien and lost the battle. The rate of drainage is not decreasing a bit. I reread the discharge instructions and laugh when I get to the part about "cover the drainage tube wound with a small band aid if you like."

I head to ER. Of course I forget I'm officially registered as "infectious" until pathology finishes analyzing the excised tissue. I put on the mask and they run a bunch of tests. I'm running a slight fever and am dehydrated, but everything else checks out fine. They call the AP and he comes in full of apologies. He raises my gown, sees the bloody lesions and visibly winces. He says my skin can't handle anymore bandage changes (Duh!) and he is going to stitch the wound shut. He promises he will do his "cosmetic surgeon" stitches. He stitches away, once in awhile making me cough, which makes yellow slime ooze out between the stitches. Then I lay still for a few hours while they give me saline and we both pray the stitches hold.

I left ER around 4 pm last night, just as a nor'easter was working its way into the city. I stood in ankle-deep water to hail a taxi, got to my apartment, and belly-flopped onto the bed. Even the wind howling outside my 32nd floor apartment windows didn't keep me awake and I had 8 glorious hours of uninterrupted sleep. :D

I guess if I learned anything from this, it's that no two surgeries are the same, even for the same person. While the drainage problem was annoying rather than medically dangerous, it felt wrong -- mainly because nothing like that happened after my other two lung resections. Not only is each person's surgery experience unique, but even for the same person having the same surgery, each experience is unique.
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

skypup
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Re: any news on Juliej?

Postby skypup » Thu Dec 27, 2012 1:36 pm

You have my vote for the Brave CCer of the YEar Award!!! I hope the ooze stops oozing. But if they stitch you shut, where does the slime go?

usopen
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Re: any news on Juliej?

Postby usopen » Thu Dec 27, 2012 1:36 pm

Oh my Julie, i don't know what to say, but glad you went to the ER.
I do have a question. I didn't know you would be able to be sutured up with that amount of drainage.
Where is all that going now?

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BrownBagger
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Re: any news on Juliej?

Postby BrownBagger » Thu Dec 27, 2012 1:50 pm

Ooooh. Welcome back, Julie. I'm sorry things didn't go as planned this time around, but you made it all the same. Did you have a "full T" or just a VATS?

What's supposed to happen, I'm sure you know, is that as soon as the chest drain is removed, the ribs move back into place, effectively protecting the wound from further expansion, and presumably constricting the flow of slime out of the wound. Apparently, it didn't work that way. Any idea why?
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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juliej
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Re: any news on Juliej?

Postby juliej » Thu Dec 27, 2012 3:55 pm

Skypup wrote:But if they stitch you shut, where does the slime go?

My question exactly! I had visions of swelling up like a balloon in the Macy's Parade! :shock:

The doc mentioned something about "back pressure" -- I guess the idea is that after the slime realizes it has nowhere to go, the back pressure makes your body quit producing it. He said there might be some slight swelling, but I should reabsorb that amount in a few weeks.

BB, I had VATS. At the last minute Dr. H said the more he looked at the CT scan, the more he thought it would take a full thoractotomy, so I was expecting that. As usual for him though, he managed it anyway. So I was pretty happy when he told me in the recovery room.

About the wound, the AP (Dr. H's fellow) said the lung was already sealed shut. He said that I heal very quickly and have strong lung tissue so it sealed up right away. He could see that clearly in the x-ray. He said that a channel/tube formed outside of it and it was at just the right angle to make a perfect funnel for the drainage fluid. Normally, as the drain wound heals, the fluid builds up back pressure, which slows down the fluid production. Because of the angle, mine was flowing too fast and I would have continued to produce slime forever. If anything it was producing more in an attempt to fill the void and create back pressure. In other words, I had the equivalent of a super-secret-worm-hole route. :shock:
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

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CRguy
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Re: any news on Juliej?

Postby CRguy » Thu Dec 27, 2012 4:10 pm

Glad the Time Lords reclaimed your slime TARDIS juliej!!!!! :shock:

Continued good healing and Cheers !
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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BrownBagger
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Location: Central NYS

Re: any news on Juliej?

Postby BrownBagger » Thu Dec 27, 2012 4:54 pm

Kind of like a fistula, no?
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

SkiFletch
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Re: any news on Juliej?

Postby SkiFletch » Thu Dec 27, 2012 6:54 pm

In other words, I had the equivalent of a super-secret-worm-hole route.


*snicker*

That's a good one Julie :). Glad to hear you're healing well despite scaring all your fellow patients. Hope the storm didn't treat you too harsh. We got SOCKED here in the Buff :shock:
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

JAZZToo
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Location: New York City

Re: any news on Juliej?

Postby JAZZToo » Thu Dec 27, 2012 7:43 pm

Do hospitals still use the drainage tubes ending with a large round bulb (about the size of a baseball)outside of the skin that you can drain when it fills up, by removing the cap dumping the contents then reclosing it? That certainly would save the wear and tear on the skin of constantly taping and retaping gauze to soak up the fluid. In 1995 after my hysterectomy I was sent home with the drainage tubes still in place and it was removed a week later during a visit to the surgeon.
Leslie

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Jack&KatiesMommy
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Location: Columbus, OH

Re: any news on Juliej?

Postby Jack&KatiesMommy » Fri Dec 28, 2012 1:19 pm

Wow, Julie....that sounds tough...and being by yourself doesn't help! I know because after my LAR and Pump l=placement, my family went home and I stayed at our apt (rented) for another week by myself. I had to walk to get food and drink (less than a week after surgery....and things were pretty sore and tough. But....you do what you have to do....and it sounds like you handled yourself pretty darn well!!!!! Hope you are feeling better today?

Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

jacekica
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Re: any news on Juliej?

Postby jacekica » Fri Dec 28, 2012 1:37 pm

what experience......Juliej you have such talent for writing in in such manner it sounds lighter, and if we know what this all means it was hard journey, but you did it - two sentences were the best - when doc said you are strong/healthy as a horse, and after coming home nicely stitched you slept 8 hours.
When you wrote about back pressure it sounds so simple and normal but I didn't know that, so doc was OK, appologizing and stiching with cosmetic stitches. Stay well and healthy as a horse :mrgreen: I think you are happy every time you remeber his words. We all are very suceptible to some words spoken just when people don't think too much and just say what they trully think, and doc thinks you are strong and healthy
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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Phuong
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Re: any news on Juliej?

Postby Phuong » Fri Dec 28, 2012 9:04 pm

Julie, you just continue to be a wonder. Way to take on a scary situation with the calm of a zen monk!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

Mona
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Re: any news on Juliej?

Postby Mona » Sat Dec 29, 2012 8:44 am

Oh Julie,
You are one strong woman.
Julie: "give it to me and I will show you how to handle the sytuation!" I am glad that you went to emergency room for help. I hope that you are better today.
Big hug.
Maria
At age 46 DX 7/21/10 Stage 4 colon cancer with mets to the liver.
8/10 Folfox 6 tx
11/10 Colon/liver resection 1/29 nodes
12/10 Folfox 6 tx, NED
3/11 chemo done
11/11 recurance liver
12/11 liver resection/Hai pump
01/12-07/12 Fudor/Folfiri

Seriously, WTF?
Posts: 602
Joined: Wed Nov 17, 2010 10:48 pm

Re: any news on Juliej?

Postby Seriously, WTF? » Sat Dec 29, 2012 9:20 am

Thinking about you! ❤❤❤❤❤
ALWAYS IN MY HEART!
5/7/2013

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Stomatrooper
Posts: 488
Joined: Fri Dec 31, 2010 11:56 pm
Location: Auckland New Zealand

Re: any news on Juliej?

Postby Stomatrooper » Sat Dec 29, 2012 2:51 pm

Wow - seems only yesterday that you were 'boasting' great pulmonary function test results - then this - you can expect a few bumps on this cancer road but you just negotiated a mountain - good-on-yer for taking it in your stride - all the best for the recovery from here.


John
John, Diag. 20 5 2010 @55
Rectal, 2cm dia, 3cm from anal verge
T2N0M0
5.5 Wk Chemorad
ULAR Oct 2010
Temp Ileo, infection; blockage; incisional hernia
Takedown Jan 2011
Hernia fix - June 2011
Clean CT 2011; 2012 & 2015
Clean scope May 2013


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