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08-21-2007, 10:42 AM
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#1
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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CAUTION~May Contain Depressing Thoughts About Husband's Progress!!
Not my normally LOL post, not even just a sad one...Pretty down right depressing!! My husband expressed his concern about his progression on this very troublesome journey. Yesterday he mentioned that he still did not feel the best and that he had started the chemo without listening to his body because he thinks the disease is taking over. He somehow knows that he had to start despite feeling a little under the weather, his belly was still not ready for this new regime. Of course this is not a reoccurance, we never really got rid the cancer in the first place. His quote was "Sweetheart, I really do not think I have much time left here with you. I will fight to get every second out of this, but I feel it is taking over right now and I need you to be prepared." What do you say to that, how do you deal with that?? Oh my God Girls, I will never be prepared for that, I will never be right without him even though life will go on around me. I know I have to wait for scans to be taken and read & that sucks, but it might be the inspiration he needs. Remember, last chemo was 4/12...radiation started 7/10 and he has not been right since.
All I can say is remember your first heartbreak when your heart literally hurt, I mean pain hurt....really deep-down ache that you thought would never go away?? That is where I am at and all along this journey I have dealt with my feelings and my heart hurt then too. Now is different especially since I have come to count on the signs his body gives us. As I wipe the tears of sorrow I must remember he is still here with us and until I know different I will still BELIEVE!! Thinking like that has me confused a bit, but that is what faith is minus those doubts.
I am scared girls, that conversation was not meant to scare me it was his honesty which has been incooperated all through this fairy-tale marriage. And that is another thing, we have been married 12 years on 10/21/07 and I feel this is not enough time with him. Our story cannot be done yet, we are not even in the middle of it!! (Cyring!!) These feelings of pain I have I did deal with and until recently I felt I was preparing myself rather efficiently. I cried all last night and finally fell asleep around 3 am and you know I try to limit my tears. I cannot get past this today, my heart is breaking. We all know that cancer is unpredictable and anything can happen, we know that there are statistics and why can he not be the next great statistic? Regardless, he is very concerned and I am very scared. I know my life will never be the same, I know that is is not being alone that bothers me. It is life without him, it is going on in life without my Knight. God has surely sent him to me, he is my gift for certain, I am sorry I sound so sad and greedy. By greedy I mean that I will take him anyway he is, but he is getting tired girls. It has been a year now and he is tired.
His journey has been tough, he is getting beat up with this hateful disease. Ed is the most disciplined, determined man but when he says he is getting tired, after I absorb that I again dry my eyes. If from the beginning of this fight he talked like that I would understand. My boy will continue to fight and get every moment possible out of this and I will try to push these "What If's" away. After all he is still here loving me and yes Marejo...we will love until we can love no more.
We picked out our burial plots finally, we will be side by side surrounded by woods and my Mother-in-Law will be getting us a Red Maple tree to go near us with a memorial plaque. Ed was a strawberry-blonde haired man with sensitive skin and I do not do well with the heat so a tree is a good bonus. It is not that we are ready for death that has me concerned, again we live in a terminal world as my friends have stated this week, and I do feel better having the plans that we want. I am so happy we have what we want and feel closure with this subject & upon analyzing my thoughts I know this is not the trigger for my grief. Again he is here with me and I am thankful for that, for every second, for each smile, for the comments that constantly remind me he knows me better than I know myself. I want no one to cry for us, this too shall pass. I just feel so depressed today and these kind of days makes it hard to trudge on forward.
I know I am talking in circles and maybe these things will make you sad knowing that you have people in your lives that feel the same way. I need to say that I really feel doom today and had to express it, sometimes I feel it is how I stay strong. These feelings of dispair I have not felt since his dx when I was green about breast cancer and look at me today wearing green shoes!! I did have reservations about this post seeing we have newbies, we have mourned another death of a Warrior friend, and so many friends have had some bumps in the road. No one makes me feel like you girls do, no one does it better.
Again he asked me, "Are you always going to keep in touch with the girls on Her2support?? It is important for you and to them Marie, that you finish your mission and advocacy and continue to help others". My answer was "Absolutely Babe, I could never leave this group of family, they are all in my heart and even long after you are gone I will find solice and peace being able to bring to them MYSELF, MY PRAYERS AND MY BELIEFS!!"
My Goal Today: I will try not to cry anymore, I will continue to push the "What If's" away and incooperate some laughter tonight. My candles will burn with the fierce intensity of prayers. I ask again for no one to cry for us, we are in need of some prayers and maybe the positivity that we are lacking this week. I am sorry if anyone feels sad after reading this post, I just needed you all and like I said....no one does it better!!
I send love and prayers your way, today and always. I promise I will feel better after talking to you girls, after I escape into the flame of that candle...but especially when I push them "what if's" away. I am not being negative, just facing reality of the severity of this disease and our particular journey.
And Girls he is still here and.....I Still Believe!! (crying, but believing!!)
Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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08-21-2007, 11:55 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Well, sorry but asking us not to cry was a little unrealistic! But thank you for sharing your most private and personal moment.
I have no words.
You do not yet know what will come to be, perhaps this is the moment of darkness before the dawn, perhaps not.
I do actually have some words about tears. A dear friend of mine told me this, maybe in response to her daughters question about why she cried when singing beautiful music, maybe in answer to a different question - I don't remember. But I remember the answer: When you cry, that's how you know God is there.
God is there, here, in the pain and sorrow and the joy and love we share.
Know, Marie my dear, that you and Ed right now have our love and hearts wrapped around you tightly.
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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08-21-2007, 02:21 PM
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#3
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Marie, My heart aches for you and for Ed. Just aches. Life certainly is not an easy place to be at times, is it? But, waiting in the wings, is our Heavenly Home where pain, sadness and unrest are NOT ALLOWED.
I honestly don't know what to say but to say that my heart is definitely with you. My prayers for peace and for God's loving Arms to hold you both close are being said.
Sending love and gentle hugs to you and Ed.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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08-21-2007, 02:50 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
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Marie:
I have a hard time responding to your post. It hurts my heart to see you hurting for your husband. I know that I would be feeling the same if it were my husband.
My thoughts and especially my prayers are for the two of you today. May our Lord and Saviour give you a peace about this. He is with you, and I know you must feel Him as your signature says. That doesn't keep our hearts from breaking.
I wish we could give you a big hug and a shoulder to cry on. Just imagine our arms wrapped around you and many shoulders bearing your burden. We love you.
Linda
S. Mississippi
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05
"Worry looks around. Sorry looks back. Faith looks up."
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08-21-2007, 03:20 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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It's tough to be so upset and scared!!
Hi Marie,
My heart just goes out to you. You certainly conveyed your fear and sadness in your post. Nevertheless, your husband has just finished a very difficult year. I am hoping that Tykerb and Xeloda will work for him, and that he will start to feel better soon. He has been through so much this summer and certainly has a right to gripe.
I can somewhat relate. I have been off chemo since last November and off Herceptin since May. I need to be off chemo in order to get into a trial that is supposed to open up soon. As a result, the bone met in my hip is growing and is making it difficult for me to sleep at night. I saw my oncologist today and he has scheduled a pet/ct for next Wednesday to see what is going on. If the hip looks really bad, then I will have to have radiation. After your husbands experience, I really do not wish to have my hip radiated. I have had bad experiences with radiation. When I had radiation to my chest nine years ago the top layer of the skin was gone by the end of it. I was not tired from it, but I was in a lot of pain by the end, but didn't miss a day from my classroom. Three years ago I had stereotactic radiation after my brain surgery. As a result, I had to have two more surgeries due to radiation necrosis. So you see, I do not have a favorable feeling about radiation. What will be, will be, but I hope this trial opens up before I need radiation.
You and your husband are in my thoughts, and truly feel, he will feel positive again soon, and be ready to endure what he needs to do to win this battle. He is lucky to have a wife who "truly believes." It sounds as if you have a wonderful marriage.
Best wishes,
Barbara H.
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08-21-2007, 03:10 PM
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#6
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Marie,
My heart is breaking for you. You and Ed sound like you have so much love for each other. This disease is horrible and destroys so much of us. The one thing it cannot destroy is your love for one another or your memories. You will always keep those close to your heart. I pray that god wraps his loving, healing arms aound you and Ed and you find some peace.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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08-21-2007, 03:35 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Dearest Marie,
I don't know what to say. Your post has brought tears to my eyes. Cancer takes too much away. The innocence of knowing that you will grow old together with the person you love most in the world is snatched away. Please hold tight to the time you have with your dear husband and lean on the Lord for the rest. There just is no other way to rationalize or get through without that comfort.
Hugs and Prayers,
Lexi
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08-21-2007, 05:03 PM
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#8
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Senior Member
Join Date: Jan 2007
Posts: 144
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Marie
I feel your pain. We all feel your pain and know how your heart aches. I have been married to the most patient, giving, trusting, loving man for only 22 years and I still feel like it is not even close to enough.
The only thought I have for you is to remember that we never know the big Plan. Not ever. We can guess and we can question, but we will never know. Please try to enjoy your days, hours, minutes with your love and give him your strength.
You two are in my heart and my prayers. Keep us up to date.
Peace be with you Marie,
Emelie
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08-21-2007, 05:07 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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My dear Marie,
My heart breaks for you. But I know how Ed feels right now I felt that way three weeks ago I honestly didn't think I was going to make it. But I am doing better being on this new chemo. And I pray to our dear lord that this is what is going to happen for your Ed. I wish I could give you both the biggest hug going! I am here for you both for anything. God I so stink at writing how I truly feel. But I know you will feel better you are a survivor and warrior to my friend and we love you so much, please let me know how you both are doing and I am praying and commanding a miracle for Ed too! I love you my friend.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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08-21-2007, 06:27 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Maire,
As I read your post the first thought in my mind was "I am glad that it was I who had the cancer and not my husband." It is so painful for our loved
ones to endure the disease. Your pain and sorrow screams out from my
lap top. I am so very sorry that you and Ed are in so much pain for each
other. I do know how much you believe - so do not give up (even though
Ed is tired) and he has a right to be. My heart also aches for the feelings
of doom that you are having. Remeber - there certainly are miracles. I
am keeping both of you in my prayers for peace and continued strength.
Please continue with your warrior mentality - and know your comrades are
with you - praying hard for Ed.
Warmly,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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08-21-2007, 07:40 PM
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#11
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Oh Marie (tears), I started to read your post before dinner. Had to stop. Started to cry and it is my husbands 52nd b-day today. He was grilling steaks while I caught up on my addiction (this site). Left the computer. Ate a wonderful meal. Had way too much Chardonnay. Came back, avoided finishing your post. Had to finally come back to it. Jeff is out dropping off an emerg sump pump to a friend. We have been together since we were 16. Can't imagine life without him and I constantly worry how he will handle life w/o me. All I can say is that the deep deep sorrow you are already feeling can only be attributed to the bottomless love you share. I must stop now. Jeff will be home any second now and I don't want to ruin his birthday. Try to stay as strong as you can for Ed's sake. So sorry if this is post is a mass of jumbled thoughts. The tears and wine are making it very hard to think straight. I pray you have a restfull night and become re-energized tomorrow. Jeff just walke in. Good Night Sweetie. Karen
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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08-21-2007, 08:19 PM
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#12
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Senior Member
Join Date: Dec 2006
Posts: 136
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Oh Marie -
I read your post---twice. I don't know you one bit but I have never wanted so much, to give two strangers a huge hug as I want for you and Ed. My heart just breaks for both of you. It is so hard sometimes when we are grieving, the world goes on and we want to say "stop"----we are grieving for something here"; but life for everyone unaffected goes on as normal.
I just hope you both find the strength to hang on to every moment for what time you may have together. We do know, this disease is so unpredictable. I would guess you are on the minds of many right now.
__________________
Debra
Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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08-21-2007, 08:29 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 215
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Marie
My heart goes out to you and your husband Marie. I do know how you feel. I have been married for 45 years to a very loving and wonderful husband and father. Although it was not cancer my husband had, it was still very traumatic. He has had open heart surgery three times, two small strokes and gall bladder removed. he has died on the table twice and they were able to bring him back to me. I simply refuse to let him go. He is a man of very deep faith and will accept whatever the good Lord hands him. Keep the faith Marie and you will get thru this. Hugs and Blessings to you and Ad. Jeanette
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08-21-2007, 08:47 PM
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#14
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Marie,
My heart aches for you and Ed and your post brought tears to my eyes. I don't know what to say to you except that I'm here for you. Ed has been through so much in the past year so I can understand how tired he must be. Perhaps now that he has started the chemo he will soon start to regain his strength. You are a true believer and don't ever stop believing. Miracles do happen! You and Ed are in my prayers.
__________________
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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08-21-2007, 09:24 PM
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#15
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Member
Join Date: Jun 2007
Location: Birmingham, Alabama
Posts: 17
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Dear Marie: Your post reflects all the feelings and emotions that I have been feeling for months. I am so sorry that you are having to endure the hellish roller coaster ride. My partner , Patricia, has been in the hospital for 3 of the last four months. she has been fighting this disease since 2001 and basically became an invalid in Feb. We have been together 14 years and it is breaking my heart to see this disease destroy her life. About two months ago I thought for sure her fight was over but the women on this board encouraged me and and gave me the hope to believe in a miracle. Pat tried another chemo and it pulled her out of the jaws af death. She is still fighting and I am still searching for another miracle drug and praying everyday.I can understand your feelings of despair when your husband says that he is fighting but his body is tired. When Pat says these things I get a punch to the chest feeling and I am unable to see how I will go on without her. I am just glad that we have each other here on the support board. Thank you for sharing your innermost feelings.
Donna In Birmingham
Pat Bailey 55 yo
2001 DX DCIS, mastectomy & reconn
2003 dx mets to lungs, double thoracotomy for bx, herceptin, navelbene,carbpl,
2005chest wall reoccurrance, rads, repeat herceptin, navelbene,carbopl
2006more mets to chest wall, axillary and rt neck lymph system, Taxotere, herceptin
x 2 treatments, inflammtion to lungs,pneumonia, stop taxotere , rads
2007disease progression to small intestine, rt. axilla, lungs,epirub,5FU,cytoxan x 2 tx
disease halted but counts so low and so weak that chemo stopped.
July2007 disease progression, given 3 weeks to live. Began herceptin, doxorubicin
2 weeks later ready to leave hopitaland ambulatory with assistance. 1 week at home then
signs of lymphedema and epidermal skin rash returning. #2 dose of doxil given with no response.
Gemzar started while back in hospital with slow positive response. Back home but terrible weakness and stomatitis.
Stop doxil. Start Gemzar, tykerb and herceptin on 8/21/07
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08-21-2007, 09:53 PM
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#16
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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My heart is breaking, also. What a wonderful relationship you and your husband have together. One thing that kept coming up for me while I was reading your post is that when I initially started treatment, I felt so much worse than before treatment, that I thought, surely this disease is spreading or I wouldn't feel this bad. After 6 months of tx, I was NED for 6 months and then had a small reoccurance. Again, after I started tx, I felt so bad that again I felt like the disease was spreading rapidly and I must be near death. So the point I am trying to convey is that I feel so much worse during treatment than I when I am not on treatment, so I am hoping that is what is happening to your husband. I will continue to keep both of you in my prayers and I will keep believing in a miracle for you, your husband and all of us.
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08-22-2007, 05:58 AM
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#17
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Marie
I too had a hard time reading your post....I could feel your pain and sadness. It is because of the great love shared by you and Ed that this vital core of endurance and oneness seems to be shattering around you. I am hoping for a miracle for you both, that Ed will continue to get stronger to fight this. You are both in my prayers everyday for strength during all of this.....you have given each other the greatest gift in life... love
__________________
"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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08-22-2007, 06:39 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Believe's
Eternal
Love
Impresses
Everyone
Very
Emotionally
because we all love you and Ed.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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08-22-2007, 09:10 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Your post brought up alot of memories for me. When I was diagnosed with liver mets in Jan 04, my liver was shutting down, my skin was yellow, even the whites of my eyes were yellow.
My liver was completely covered with tumors. A month after my diagnosis, I took a one week chemo break to go on a planned ski trip to Sun Valley Idaho, not knowing if that would be my last outing with my husband and my friends.
My friends that shared the condo with us honestly feared I'd pass away while in Sun Valley.
I was on Navelbine/Xeloda and Herceptin and they turned the tide and 13 months later my liver was NED. While there is life, there is still the chance for treatment to take effect. This is a tough spot for you, I'll be thinking of you and supporting you in spirit no matter which way things go.
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08-22-2007, 08:17 AM
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#20
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Deceased
Join Date: Mar 2006
Location: Virginia
Posts: 113
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My Dear Sweet Marie
I can feel your deep seeded fear and pain from here. The love you and Ed share for one another is the same as what my husband Billy and I share for one another. We have known each other since I was two years old. We grew up across the street from one another in Chesapeake, VA. He was my brother Scott's best friend, our Mother's were best friends too and I was best friends with his younger sister. My Mother was like a second Mom to them and their Mother a second Mom to us. Our families were like one. The bond we share goes deeper than anything I have ever known. My family moved away from VA to NY when I was around 12 years old. We all kept in touch though over the years, Billy even came to visit us in NY, and after Billy and Scott graduated HS they attended college together for a while in VA. After college Billy got married and had three wonderful children. Billy, his wife and children even came to visit us a couple of years after my brother Scott died in 1986 in a drowning accident in an AZ River where he was then living with his fiance and her son, he was only 23 at the time. After Scott died Billy made a point of staying in touch with my Mother, sister and I. He was like a son to my Mother. Many years passed and our contact with one another became less and less as we all got caught up in our own lives, although we still would touch base with one another once in a while. Both Billy's Mom and my Mom passed away in the 90's to breast cancer. Billy and I hadn't seen each other in 10 years but I received a phone call from him and he told me how sorry he was to hear about my Mother's passing. His Mother passed away before mine in 1990, my Mom in 1995. We talked on the phone for about 8 hours that night. He told me how him and his wife had split up a year before and that she was about to remarry and how difficult the break up had been on him and the kids. From that phone call on we started talking by phone on a daily basis. We finally reunited in person a few months later at a mutual childhood friends house in Chesapeake, VA. I was living in NC at the time, Billy was still living in VA. When we first saw each other for the first time in 10 years we embraced each other tightly and all I could feel, think or say as we were hugging was "Oh, wow, I feel like I just came home." It was the best feeling in the world, I knew immediately that I was right where I belonged. I had been praying for years for God to send me a man that would be my best friend, my confidant, my rock through thick and thin, my loyal partner through life, my soul twin (we have so much in common it is almost unbelievable) and soul mate. I had been through so many trials and heart breaks in my life and really bad relationships and I had promised myself that I would never settle again for a man that wasn't worthy of my love or what I had to offer as a person and a woman. Well, God answered my prayer when He brought Billy back into my life. He is more than worthy of my love, it is I that at times. doesn't feel worthy of his love, he spoils me rotten every day. We have been together ever since that 10 year reunion. We had our 7 year wedding anniversary this past June 17. These past 7 years have been the best 7 years of my life. Every day spent with Billy is like my prayers being answered all over again, like Christmas morning, my birthday and wedding day all rolled into one. Every day I thank God for bringing us together in marriage.
The thought of cancer separating us is like a knife stabbing through my heart. Billy and I have both been through so much already in life and have lost way too many loved ones along the way. I can't imagine God allowing cancer to take away from us what we have been searching for our whole lives only after just 7 years of being together as man and wife. I want to grow old with Billy more than anything else in this world.
I don't know if you have been following my recent posts or not with all that you and Ed have going through lately. But starting about two weeks ago we have had the biggest nightmares of our lives. It first started with the news of me having multiple brain mets and having to go through WBR, then with us being told by way of phone call on our drive home from chemo, not to go home but to go straight to the ER because they thought I had a blockage in my liver and needed a stint put in. Luckily I didn't need a stint put in but my liver function was/is in terrible shape. I have been very jaundiced and extremely weak for weeks. The worst was the Friday before last though. I went in to have my monthly Zometa and they ran blood work while I was there and the blood work came back showing that my liver was in even worse condition now and that I needed to see the nurse practitioner. The nurse prac. gave me a very cold and blunt prognosis of just a couple of days, maybe weeks to live and told us to go ahead and contact Hospice now. Well, you can imagine our shock, horror and utter terror. It made no sense, how could I be dying when I was up walking around, eating well, feeling pretty good over all except for the pain in my liver and being tired. The nurse prac. even went as far as to call me a living miracle already because she couldn't believe that I was up walking around. This being a Friday made it all the worse because my Onc. wouldn't be available until Monday morning sometime. What if I died before then and Billy later found out that something could have been done to prevent it. The weekend was pure hell for us. We had to contact family members and tell them that I had only days or weeks left to live. Telling my sisters was one of the hardest things I have ever had to do in my life and poor Billy was frantic as all get out all weekend watching me for signs of rapid decline. Well, Monday finally rolled around and we were able to get in to see my Onc. and her prognosis was completely different from that of the nurse prac., it was like night and day. She couldn't believe that the nurse prac. had told us that and couldn't state enough how wrong the nurse prac. was. It was the biggest sigh of relief that Billy and I have ever breathed. You can imagine all of the emotions we went through and how relieved and angry my family members were at the nurse prac. for putting us all through that. You can read more about this by going back to my posts titled "Weekend from H, E, Double Hockey Sticks" or "Kicked in the Teeth..."
To make all of the above even worse, as you know, we had been waiting to get me started on Xeloda ever since I had WBR and my insurance company kept denying us. We were down to our last appeal and all of this waiting and not being on any chemo of any kind was only allowing my liver function to grow worse and worse and by the day. Every day was like a nightmare until my Onc. was able to get me on Xeloda after my weekend hospital stay. We also went ahead and started paying for the Xeloda out of pocket until we got the final answer from the Ins. Co. Luckily after a lot of phone calls by my Onc., an advocate at the cancer center, myself and a plethora of paper work the Ins. Co. finally approved it.
I had drastically changed my diet after being given a death sentence. I went to eating fruit and veggies all day long, no red meat, no sugar at all and nothing to drink but lots and lots of water. Just by drastically changing my diet and lots and lots of prayers I was able to get my liver function numbers to stop jumping sky high repeatedly in just over 3 day periods as it had been doing since before going into the hospital. I have been on Xeloda now for 2 weeks, I am on my one week off right now which started on Monday. I just had blood work done yesterday to recheck my liver function and I am ecstatic to tell you that my liver function numbers have started to drop. My Bilirubin went from a 12.3 to 11.7, SGPT from 759 to 409 and my SGOT from 453 to 242. I am thrilled to pieces as is my Onc., she said Xeloda can take up to a month to start working in some patients and this is a very good sign that mine has already started to work which is incredible since I have only been on it a short time. She also said that because I haven't had any side effects as of yet from it that she is going to increase my dosage from 3 pills in the morning and 3 at night to 3 in the morning and 4 at night. If I start to get any side effects I am to stop taking 4 at night and call her immediately to let her know.
Before being reassured by my Onc. and having these recent blood work results I was having feelings and thoughts like this.
Having failed on my last three chemo's, my liver being in such rough shape, and just "what if" the prognosis from my nurse prac. were true?? I couldn't stop thinking about it. I was really starting to become deeply afraid. I truly felt that everything was down hill from here and that it would probably be a very rapid decline. I was having terrible thoughts and couldn't stop picturing my Mother's last days of life and how horrible they were and thinking that would be me very soon. I couldn't stop crying and worrying about Billy and my sisters and what this was doing to them. I was even plagued with guilt from having all of these negative thoughts. Where did my faith, unwavering trust and belief in Christ to heal me go??? Then like a loud voice booming inside my head I realized I was allowing satan to invade my thoughts! I had left the door wide open for him and of course he wasn't going to let an opportunity slip on by. Once I realized what I had done I began to pray. I asked Christ to forgive me for my moments of weakness and for Him and God to surround me with Their armor so that satan couldn't slide in with his negative thoughts and worries. I asked for Them to give me the strength to keep him at bay and to fill me back up with my strong faith, unwavering trust and belief that Christ would heal me. Well, that is exactly what Christ and God did, They are soooooo Good, praise the Lord!! They have filled me back up with my faith, unwavering trust and belief, an inner peace, a quieting of the mind, over flowing joy and have set me on my path to healing. Since then I make sure to have little conversations with Them throughout my day, to constantly praise and give thanks to Them no matter what kind of day I am having. As you can see the Lord and Christ are blessing me with the healing I have asked for. Not only am I feeling better spiritually, emotionally, mentally and physically but my blood work results are proof that Christ is alive and working in me. He can do the exact same thing for Ed, Sweetie. Don't let satan take from you what you know to be true! Just keep praying and asking the Lord to make it all so and I will be praying every day for you and Ed asking for the same thing and I know the Lord will hear us and that He will answer.
I can't recommend the books enough that I mentioned in my last few posts. Please Sweetie go out and get them, either from the library or a book store. If you are unable to then please let me know and I will get them for you and mail them to you. They truly have done wonders for me and gotten me to where I am now health wise and in my closer relationship with God and Christ. They also have taught me the right way to pray when praying for a miracle.
Here is a simple healing prayer that Ed can pray every day or you can pray for him.
Father God, I thank You for creating me in Your image. I praise You that I am fearfully and wonderfully made. I confess that You are the God that heals, You and Christ are the Greatest Physicians that ever existed or ever will exist. I ask You to heal my body from the top of my head to the soles of my feet. I pray that You would regenerate every bone, joint, tendon, ligament, tissue, organ, and cell of my body. I ask You, Father, to defeat satan again, as You did on the cross, and defeat any disease that's trying to take hold of this body, You so marvelously created. This is the day that the Lord has made; I will rejoice and be glad in it. In Jesus' powerful and precious name I pray with love, gratitude and many thanks. I love You, Lord God. AMEN.
I also repeat to myself all day long that "God is All and All is God, if God is All and All is God, then God resides in me, and where God resides can only be good things, pure things, and no evil, disease or negative thoughts can reside where God resides."
I love you my Dear Sweet Marie, and you and Ed are in my thoughts, heart and prayers daily. If you need me for anything don't hesitate to e-mail me directly at VaMoonRise@aol.com. I will even give you a phone call if you would like, we can chat, vent, cry, laugh and pray together.
Love & God Bless,
Nicola
PS: Told ya, that once I get to talking it is hard for me to stop, lol. I could have kept writing a bunch more but thought that other readers might not appreciate my ramblings as much you will, lol. I hope that if we talk by phone we can both get a word in edge wise, lol.
__________________
March 18, 2004, Age 36
Diagnosed: High Grade DCIS, Microcalcifications, Solid and Comedo type, Nuclear grade 3 with 1mm margins, ER+, PR+, Stage "0"
3-8-04 Left breast lumpectomy.
4-1-04 thru 6-24-04 Adjuvant XRT.
11-29-05 Gallbladder attack.
12-01-05 Surgery to have gallbladder removed, discovered cancer spread throughout liver in both lobes, HER2+ amplified by FISH and interestingly enough negative for ER and PR.
12-9-05 Clinical trial consisting of Tykerb, Taxol and Herceptin along with Zometa once a month. On clinical trial for 15 months before liver mets started progressing. Started on Navelbine 3-9-07. Navelbine failed, switched to Gemzar July 07. MRI of the brain on July 7, 07. Results revealed multiple brain tumors. Taken off of Gemzar immediately and began 15 rounds of WBR which I completed on July 26, 07. CT scan on 7-26-07 significant progression in the liver mets. I am now getting ready to start on Xeloda along with Herceptin and Zometa once a month.
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