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Old 01-24-2010, 11:20 AM   #1
IRENE FROM TAMPA
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Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
Re: Irene From Tampa

Sorry I've not posted for a few days, but they've been both evenful and tiring.

Irene's birthday was a happy day...yet sadness was lurking. So many friends and family members came with best wishes and happy hearts that at times the air was filled with happy laughter and friendship. Tears of both joy and saddness could easily be found.

The hospital had to ask the overflow to contain themselves when in the hallway. They've been nothing but hardworking, understanding, caring and kind during the entire ordeal and I want them to know that its recognized and taken to heart. It takes a special heart to remain strong amongst such trying circumstance - yet these people can do it.

Irene's white blood cell count had dropped below 1 - so surgical masks and antiseptic soap were required by all. Her counts havent been this low since the stem cell transplant.

We hope to bring Irene here tomorrow. Hospice didnt show up yesterday so our meeting was delayed by an administrative snafu. So I hope to meet with them this afternoon...hopefully time enough for them to get the necessary equipment to the house.

The girls and some friends are coming over today to help take down the Christmas tree and decorations which have remained in place since the house was evacuated about a month ago. Its odd to be walking amongst gift packages and alike that bring only an odd sense of detachment and sadness.

Its early Sunday and I'm at home.
I came here yesterday evening to organize things a bit but simply ran out of gas and couldnt make the drive back. Andrea was good enough to bring me some necessary medicine so I could remain.

I'm totally exhausted yet cant find sleep in my own bed. I dont know whats to come of the future, but I foresee cold seas and I'm a tired swimmer. Best I keep thoughts to a minimum.

As I often do, I ran through my picture albums of better times...but must admit I'm crushed and they didnt have the desired affect. Hopefully next time.

I updated the Caring Bridge phote album with some more pictures of Irene during happier times and with good people.

Be well and all my love - John
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"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."
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Old 01-24-2010, 07:25 PM   #2
IRENE FROM TAMPA
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Re: Irene From Tampa

From Irene's Caring Bridge website:

Tomorrow Irene comes back home....to a spotlessly clean house. The girls, Irene's brother Paul, his Soul Mate Liz and the irrepressible Erma cleaned this house of dust of the ages. The dust of some dinosaur fossils were found...just before being sucked up into the vacuum cleaner!

Truly : they deserve serious praise for their hard, extensive work. For the honor they paid Irene.

Michele & I met with a Hospice representative at the hospital in the afternoon and arrangements were put into motion. Necessary equipment will be delivered before noon - then sometime in the afternoon I'll be dropped at the hospital so I can ride with her back home. She's coming home.

I found loading up the car with things from Irene's hospital room difficult. Over the years I'd wheeled cartloads of flowers,
clothes in plastic bags, luggage & medical supplies...from many of Irene's hospital rooms, but something was different this time...something undefined.

Until it hit me: it was the flowers.

These flowers would be different. Irene wouldnt be getting well this time and "suggesting"where I should plant them. Irene wouldn't be healing and tending to them months after...or being certain I did. Irene wouldn't be there to put cuttings into a table top vase and light up the room. It was the flowers. These flowers had no home and I found myself crying while filling my car with them.

There's so many things about this turmoil that simply destroy me. I see others struggle as well...but sense they have a better grip and I'm both puzzled and jealous. I know I'm suppose to find peace...find understanding in that she'll be in a better place...at rest...when this war finally ends...but my heart and mind simply aren't on the same page. They cant find accord...and I cant find peace.

Before leave leaving Irene for the night, I spoke to her.
The nurses had recently roused her...causing her to open her eyes. Andrea spoke to her Mother lovingly and Irene's face relaxed into peace fullness...her eyes closed contentedly as she listened. Then I told her how much I loved her and asked her to have sweet dreams: "to dream of Italy...to remember
Cortona...Kay & Ed....Fernando & Giovanna...dream sweet dreams darling...remember Italy." A tear formed under her eye which Andrea wiped away. I'll always remember that.

Before leaving the room I stopped and returned. Pulling some paper from my suitcase, found the prayer: Stay with me Lord - and read it to her. If she should pass during the night...if should she should pass in my absence...I wanted my last words to her to bring her comfort.

Although I've never felt such anquish before...and I hope never to again...I want to do this right. I need to do this right. I want her to know I love her...and that it was done right.


John


ps - theres some new photos in the album.
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"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."
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Old 01-25-2010, 12:18 AM   #3
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Irene From Tampa

John -
Thank you for opening your heart here and showing all the spirit the family and friends are pouring forth in these gut wrenching days.

You are " a prince of a guy" as my dad would day.
__________________
"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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