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Old 11-10-2009, 09:14 AM   #1
Colleens_Husband
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Tales from the Surgery Waiting Room

Colleen is getting her port out as I am writing this post. They just wheeled her into the operating room and I am back in the surgery waiting room where I have already put in too many long grinding hours.

To me, getting the port out means that we are done. The oncologist has okayed the port removal because the blood tests showed no cancer markers, the latest mammogram showed no new cancer, and every indication (knock on wood) shows that we are done. To me this is the end of a long and trying journey.

Colleen's port was a double port put in for end of life treatment options. When the surgeon installed it, he thought Colleen had cancer in all 18 removed lymph nodes. She actually had a lymph node infection which was a result of the initial biopsy. The surgeon scared the crap out of me when he talked to me after installing the port. He said Colleen had a 'gravely serious' cancer problem and that I would need to start putting Colleen's affairs in order. It turned out that only three lymph nodes had any signs of cancer, and two of the nodes barely had any cancer.

Because it was a double port, it clogged up twice as much and it was nothing but a big pain in the butt. I am glad it is going to be gone in the next half hour. The surgeon said that they recycle the ports. I told the surgeon that Colleen's port had bad karma and shouldn't be put in anyone else. He laughed at that suggestion and said that unless there is an obvious defect, company policy stated that they have to recycle it.

Colleen's surgery was delayed two hours today because the surgeon had another operation prior to Colleen's go longer than expected. Since the surgeon only does stomach staplings and breast cancer surgery, I am guessing the person in before Colleen was going to have the axial node dissection which found positive lymph nodes and the surgeon is removing the lymph nodes. It is getting pretty late and there is only one other man in the waiting room and from the stack of magazines and empty coffee cups, I can tell that he has been here for a while. I went over and started to talk to him. I asked if his surgeon was Dr. Moiel. He said, 'Yes, how did you know?'

I told him my wife was next in line for surgery and her surgery was held up for two hours, since she was being wheeled into the operating room, that would mean his wife was getting close to being finished.

He asked me, "Why is my wife's surgery taking so long?"

I told him, "She is probably having an axial node dissection and they found cancer in that node so they are removing her lymph nodes."

He asked me why that takes so long. I told him that it only takes a few minutes to tune a car engine, but if you have to do it without opening the hood of the car, it is going to take a bit longer.

I noticed that this poor man was like a raw nerve. He was emotionally spent and worried to death. He asked several dozens of questions, and surprisingly, I actually had most of the answers.

I hope I made things easier for him. He was certainly glad to hear that my wife survived and that there is an end to the ordeal. When you are first starting out, it is hard to see that there will be a positive end to the story.

The surgeon finally came and got me and told me everything went well. I asked him if he was going to recycle the port. He said he wasn't, it was defective. I asked him what the defect was. He said he dropped it and stepped on it then gave me a wink. "You don't want me to put bad karma into another person do you?"

He really made me laugh.

Anyways, I am glad I was part of the HER2 community. It really helped with that poor man waiting too long to learn the fate of his wife. That is the good karma part of all of this.
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 11-10-2009, 09:33 AM   #2
Gerri
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Re: Tales from the Surgery Waiting Room

Aw Lee, you ROCK! The comfort you provided that husband as he begins their journey will probably pull him through some rough times.

I am so happy to hear that Colleen is now moving on to life "after" cancer. This experience changes us forever, but some of those changes are the best thing that could have happened - to me anyway.

Please pop in from time to time. You are family here.

Much love,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
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Old 11-10-2009, 11:10 AM   #3
vlcarr
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Re: Tales from the Surgery Waiting Room

What a wonderful day for you guys! Congrats!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 11-10-2009, 08:43 PM   #4
ElaineM
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Wink Re: Tales from the Surgery Waiting Room

Congratulations to Colleen. I am so happy for her.
Thanks for keeping the other husband company and answering his questions. That will help him take care of his wife and understand some of her problems.
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Peace,
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12 years and counting
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Old 11-11-2009, 12:12 PM   #5
ammebarb
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Re: Tales from the Surgery Waiting Room

Hope Colleen is recovering well from her port removal. My sis really hates hers, but knows it's making taking her treatment a bit easier. Love that Colleen's doc made the removed port "defective"! Now, on to NED for umpteen decades! My best wishes to both of you.

Barb A.
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Old 11-11-2009, 01:44 PM   #6
schoolteacher
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Re: Tales from the Surgery Waiting Room

Lee,

Tell Coleen I said, "Congratulations on the port removal."

Amelia
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Old 11-11-2009, 06:53 PM   #7
StephN
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Re: Tales from the Surgery Waiting Room

Guess it is a good week for port removals. I am feeling OK after having mine out yesterday. Hope Colleen has a big sense of relief.

But, GOLLY, I never dreamed they might recycle my port!!! I am sure they did not recycle the first one I had in for 6 years. Unless it got sent to a 3rd world country ... And the idea that mine could have been in someone else - ick!

I asked to see my port yesterday when they finished with closure of my incision. My surgeon held it up and I could see just how LONG the catheter is. There was a possibility that it might not come out in one piece since it was so badly clotted in the inominate area of my subclavian vein. I could feel the tugging during the removal. The thought crossed my mind to ask to keep it, but I let that go.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 11-15-2009, 07:21 PM   #8
Colleens_Husband
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Re: Tales from the Surgery Waiting Room

StephN:

Congratulations on your port removal! This must be a huge milestone for you after all you have been through. You have truly been an inspiration to Colleen and me. I am truly humbled that you have through so much more than us and still manage to be a pretty decent person. I don't know what else to say but live your life like it you got a second chance, because you truly did.

Colleen and Lee
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 11-21-2009, 04:13 AM   #9
Jackie07
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Re: Tales from the Surgery Waiting Room

Lee,

Glad to hear the Colleen had her port removed. I hope you stick around. You are such a story-teller, first rate counselor, and one of the best spouses...

Steph,

It has to be a 'relieve' to finally remove the port. I'm keeping mine for future blood draw since the technicians always have trouble accessing my vein. The last straw was when they had to 'stab' my fingertip to squeeze out blood. I showed those wrapped-up fingers to my oncologist and he agreed to leave my port alone.

Congratulations!
__________________
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Last edited by Jackie07; 11-23-2009 at 05:18 AM..
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