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Old 04-27-2006, 09:44 PM   #1
al from Canada
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linda update

I am deeply saddened to tell you all that Linda died today in the comfort of her own bedroom on her new 4-poster bed. Linda had been far more comfortable since we brought her home as her breathing had no apnea and was very regular. Around 2 this afternoon, I was holding her hand talking to her when I noticed she failed to take her next breath. Total peace and tranquility and her lips immediately turned into a smile. This was day # 15 since Linda lost consciousness and day# 10 with IV support!

Linda and I had a very close blended family. Linda leaves behind her two children 21 & 20 and my three; 19, 24 and 32 and our little grandaughter, 18 mos.

Linda, true to her giving nature, has donated her eyes to the eye bank for transplant, the one body part a cancer patient can donate. As well, there is a plan in place for further support to our local community hospital. I will elaborate later.

I would like to make two final comments: first, if you or a friend are considering having your final days at home; providing you have a full time support staff and appropriate pain management, it can be a bonding and life altering experience for your family and a very warming and relaxing place for the patient. Second, this support group has given us the courage to fight, look death in the eye and walk away, and in the end, with the strength of all your thoughts and prayers behind us, having the courage to fight, amaze the doctors again and again and finally, remind death that we are not going willingly anymore.

I plan to re-join the group as an active participant when things settle. You may ask why? Because I still have 2 daughters and a grandaughter PLUS, all my friends here in the support group.

not a good day today,
Al
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Old 04-27-2006, 10:01 PM   #2
StephN
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"You tried your best"

The above is a quote from my husband upon my sharing this sad news with him. You have our complete sympathy in this exhausting moment of your life, Al.

Home is normally the best place to pass, if, as you say, the appropriate support is there. I feel that Linda knew where she was and that you were by her side as usual.

We ache for you and Linda. Once again I want to thank Joe and Christine for having you and Linda as part of the group in San Antonio last December. It seems like such a short time ago and I can hardly believe what we have been through since that time.

Last edited by StephN; 04-27-2006 at 11:04 PM..
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Old 04-27-2006, 11:20 PM   #3
karenann
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Al,

Your Linda was beautiful inside and out. I am so truly sorry for your loss. I send my love, hugs and prayers to you and your family, as I know this is a very hard time.

Peace and strength,

Karen
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Old 04-28-2006, 12:42 AM   #4
bjj
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Al

I am so very sorry to hear about Linda. How kind of you to come and tell us all and to still be able to find it in you at this sad time to offer your advice for anyone considering to spend their final days in their own home. You are so generous at such at sad time.

I am pleased to hear that you intend to re-join the group as an active participant.

My thoughts are with you and your family.

bjj
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Old 04-28-2006, 01:51 AM   #5
chrislmelb
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Dear Al, so sad to read of Linda's death. I'll be thinking of you and your family. May she rest in peace.
Christine
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Old 04-28-2006, 03:42 AM   #6
emmasmom
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Dear Al - I am so sorry to hear about your loss. May you be filled with peace. Know that there are so many prayers for you and your family.

Lisa
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Old 04-28-2006, 04:41 AM   #7
Sheila
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Al
My deepest sympathy to you and the children and your grandaughter in the loss of Linda...she was surrounded with love, and will continue to be in our hearts. I am so glad to hear you will rejoin the board...what a fitting tribute to Linda, and benefit to us all.
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"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 04-28-2006, 04:59 AM   #8
saleboat
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Dear Al and Family,

I am so sorry for your loss.

Peace,
Jen
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Old 04-28-2006, 05:27 AM   #9
kristen
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Dear Al,
Most of us didn't get the honor of meeting Linda or you in person, but here we feel very connected through writings and I am so sorry for your loss. I think we all feel a loss too. She was a beautiful woman. You two brought something intangible here, a love that spread across postings, a feeling of the love you two shared and shared with us. Thank you. I pray that the memories and moments of your life together will comfort you as you forge ahead in this difficult time. God Bless.
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Take care, k
DX: 10/29/03-Stage IIB, 3/12 nodes +, er/pr-,
Grade 3
MRM: 11/07/03
TX: TCH-BRICG Study-6 tx's; 12/15/03
Herceptin; til 12/14/04
Rads: 30 days
BRCA neg
S-Gap: 12/15/04
Oct 05: LAVH
NED
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Old 04-28-2006, 05:37 AM   #10
IRENE FROM TAMPA
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I am so sorry Al

Nothing I can type in this post can express how terribly sorry I am to hear about Linda. Your love for each other always came through so strongly in life, as I am sure will continue in your memories of Linda.

Thank you for letting us know even through your time of sadness. My prayers for you and your family.
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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 04-28-2006, 05:39 AM   #11
lu ann
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I am deeply sorry for your loss. Lu Ann
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Old 04-28-2006, 05:59 AM   #12
DeborahNC
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My deepest sympathy for you and your family.
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Old 04-28-2006, 06:17 AM   #13
Dalye
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Dear Al & Family;

I too want to extend my deepest sympathy to you and your family.
Al, you truly are an inspiration to other family members by showing us that our loved ones are not is this battle alone. When you told us of Linda's passing, with a smile on her face, it should be a reminder to us all that she is starting a new chapter and it is just a pause in the conversation & we will all meet again. God bless you and your family!


love & peace

Eileen
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Old 04-28-2006, 06:25 AM   #14
Yorkiegirl
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Dear Al & Family,


Please know that my prayers are with you during this time.

I am so very sory for your loss. I am at a loss for words at the moment, but many prayers continue.



Vicki
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Old 04-28-2006, 06:28 AM   #15
tousled1
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Dear Al,

I am relatively new to this message board but want to extend my deepest sympathy to you and your family. I am truly happy that Linda got to spend her last days at home with a loving family and environment. Please know that you are in my thoughts and prayers.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 04-28-2006, 06:47 AM   #16
Rozebud
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I just don't know what to say Al, other than I am SO sorry for your loss.

More than any other man I've ever known (and I know I've told you this before), you were more a part of Linda's journey with your knowledge and activism than any man I've even known. I can probably speak for most women on this board (including myself) who have great husbands but were still a little jealous Linda had a great guy like you. She was really blessed, and I know you were too.

This is selfish of me to say, especially since I'm not on as much anymore, but I do hope you come back when you're ready. You've offered us all SO much, and still have so much more.

God bless you my friend. And God hold Linda in love forever.
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Rose

Dx'd 1/04 at 33, while 33 weeks pregnant

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7 (IDC)/7.6 (FSH), 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin (BCIRG 006), mastectomy, rads (7 weeks), zoladex (5 years) with tamoxifen (2 years)/aromisin (3 years), bilateral SGAP summer 05 at NOLA

Oops, retested tumor and I guess I'm er/pr- after all.
Stopped all hormonal tx 10/07. Periods resumed 6/08. Bye bye hot flashes!!!!

http://www.edrie.com/kopecky
*~VISIT OUR FAMILY!~*
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Old 04-28-2006, 06:48 AM   #17
Becky
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Al,

I am deeply sorry for the loss of your beautiful Linda. I am thinking of you and your family constantly. Remember your friends here at Her2. We hope you will be back soon so we can comfort and help you as you have us.

With kindest regards,

Becky



DEATH be not proud, though some have called thee
Mighty and dreadfull, for, thou art not so,
For, those, whom thou think'st, thou dost overthrow,
Die not, poore death, nor yet canst thou kill me.
From rest and sleepe, which but thy pictures be,
Much pleasure, then from thee, much more must flow,
And soonest our best men with thee do go,
Rest of their bones, and soules deliverie.
Thou art slave to Fate, Chance, kings, and desperate men,
And dost with poyson, warre, and sicknesse dwell,
And poppie, or charmes can make us sleepe as well,
And better then thy stroake; why swell'st thou then;
One short sleepe past, we wake eternally,
And death shall be no more; death, thou shalt die.


by John Donne (1572-1631)

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Old 04-28-2006, 06:56 AM   #18
Lee
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I'm so very sorry for your loss, Al.

I'm glad Linda got to spend her final moments with you, in your home, together. I will keep both of you in my prayers. God bless.
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Old 04-28-2006, 07:21 AM   #19
Vi Schorpp
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So very sorry, Al

Al, I'm so sorry for your loss. There is nothing else you or your family could have done for Linda. What you did was extraordinary and touching. While there's peace in the promise of everlasting life, it's not much comfort as you're going through this.


My husband died earlier this month on April 9th. We had hospice and family at home and it was a beautiful experience. I described it as gut wrenching and beautiful, but it was life defining, both for me and my daugher and son. Helping someone get through their final journey is a gift -- both to them and to ourselves. We look back with many emotions -- but among these emotions are pride in our ability to help comfort them, and gratitude for the life we shared with them. I look back with no regrets and I'm sure you do too.

My husband and I would have celebrated 32 years of marriage in May. We have two children and two grandchildren. Our 7 year old grandson decided that he could help Pappa by playing guitar for him, so he picked up the guitar and played 3 songs for him. Mind you, he has not had a lick of instruction, so you can imagine the sounds! When I went into the kitchen where the family was I said that maybe Pappa thought he was in heaven with that guitar playing. My sister said, "or, maybe Hell." It was funny, but again, our grandson felt he too could help in the process. I will never forget it.

I pray that you will find comfort in the prayers and messages from everyone on the board.
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Old 04-28-2006, 07:21 AM   #20
Tom
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With great admiration

Dearest Al and Linda,

You are both my heroes.

God Bless You Always,
Tom
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