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Old 05-07-2008, 11:16 AM   #1
Jean
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Cancerland

Cancerland

It is a place where you find new friends.
It is a place where you lose old friends.
It is a place where you shed tears.
It is a place where you learn to smile once again.
It is a place where you discover a new you.
It is a place where you face your fears.
It is a place where you learn how strong you really are.
It is a place where you can find your heart and soul.
Cancerland is a strange bitter sweet place.


Jean
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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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Old 05-07-2008, 11:23 AM   #2
Believe51
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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: 2,999
Talking Jean.......

Did you write that my little Sweetie?? It is as wonderful as you are!!>>Believe51
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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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Old 05-07-2008, 11:34 AM   #3
Jean
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Yes, Marie and thank you.
I have been pondering the high and lows of this strange journey we are all on.....there is a site that cancer patients can write on and one of the titles was cancerland. I just went with it from there and that is what I felt.

Hugs to you and Ed!
Jean
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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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Old 05-07-2008, 12:04 PM   #4
CindyE
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Loved the poem! The words are so true. Thank you for sharing such a beautiful message.
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Cindy

L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 05-07-2008, 12:26 PM   #5
Unregistered janieR
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what a lovely poem. I feel the same but cannot put it in to those words so beautifully. Thank you.

Janie
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Old 05-07-2008, 05:43 PM   #6
dhealey
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Location: moved to Lancaster, Pa in June, 2010
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Jean,
Loved your poem. Very well put. Mimics my feelings.
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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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Old 05-07-2008, 06:05 PM   #7
Bill
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Jean, that is an awesome poem. Thanks for sharing with us. Love, Bill
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Old 05-07-2008, 06:15 PM   #8
hutchibk
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Jean - you are wonderful and so is your poem. You need to send it to CURE or HEAL Mag - they would definitely publish it!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 05-07-2008, 06:29 PM   #9
Andrea Barnett Budin
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Cyber Hugs

Oh, Jean! Every word you wrote speaks the words I have come to know so well. They dwell in my heart. Thank you, thank you for expressing my feelings for me so very eloquently.

I have been trying to process all that has happened this week. We have lost 3 beautiful, wonderful Spirits who have graced this board for a long while. These are Sisters we have come to know and have felt so blessed to have them in our lives. We must all remember to say THANK YOU for giving us this gift! Out of our cancer experience come the most amazing bittersweet realizations and relationships.

We grieve now, as a virtual community (as Flori has wisely noted). Our hearts go out to the families of our Kate, Michelle and Carol! We are struck by the unspeakable sadness of having a loved one rent away. We understand on a level that is incomparable, as we live in Cancerland...

May their families know that we have felt very much a part of these brave warriors' journey. We have done our best to support and inspire them, as they have with all of us. There simply is no place like our unique community. We share a bond that runs deep, at our core. We love these Sisters in a most profound way.

I have been silent for a bit, reaching for some way to deal with so much that is truly mournful to me. I have chosen not to succumb to the temptation to completely identify with these great ladies who have lost their fight for life. It is easy to say -- When will it be my turn? Too easy. I cannot allow fear to rule my life.

My dearest friend Sue was at times my staunchest supporter. Sometimes it felt as if she was actually a blood Sister whose heart beat in rhythm with mine. Other times she was like a mother who wanted to protect and shelter me. And I hope and believe she felt the same about me. I adored her.

Sue had a rare stomach cancer and fought for nearly 15 years. She went through numerous chemotherapies, transfusions, surgeries, PET scans (and you know the drill!). In time, she was in constant pain and no longer wanted to live. You know for a long while I tried to inspire her not to give up, to try Reiki, supplements, whatever I could think of. Finally, I accepted that in the end it was her life and I had to respect her decisions. This is agonizing when you love someone with all your heart. But I did it. For her.

Sue told me emphatically and repeatedly to listen carefully -- WHAT I HAVE HAS NOTHING TO DO WITH YOU. YOU ARE GOING TO LIVE A VERY LONG TIME, ENJOY YOUR FAMILY, FINISH YOUR BOOK. YOU HAVE A LOT OF LIVING YET TO DO. When she died a few years ago I was devastated. But I remembered her oft told words. And I offer the same to all of you right now, my Sisters on this board.

We all know that though we each have been dx with bc, that we are HER2+, each of our cancers is different. There are so very many variables. We cannot compare apples to oranges. I had the roughest of times with Taxotere. It brought me to my knees. While others had milder side effects. Every tx, every drug we ingest effects one differently than another. This is what worked for my diarrhea, constipation, nausea, and so on. We try it and find, Yes, this is great. Or, No it did nothing for me.

So my point is that we must not look at this last week full of the worst of news and think the worst for ourselves. We must not compare what we have with what they (our Kate, Michelle and Carol) had. Each of us in unique. Each cancer is unlike any other. Each reaction and/or result differs.

And, truth be told, the greatest tribute to these valiant women is to consciously choose to live each day with zest and gratitude, love and joy. That is what they would want for us. To hate this disease called cancer, or to rail at the unfairness of it, does no good and in fact does terrible harm to our very Souls.

These fallen soldiers were killed in this war and our hearts are nearly broken that such fine and gentle Spirits have passed on (to what I believe is Heaven, or the Spiritual Realm). I know they suffer no more, that they are at peace and with God. That their loved ones will one day see them and be united with them again.

At the same time as I feel a burgeoning heaviness in my chest over the loss to this world, I will wake up tomorrow, remember them with great fondness and extraordinary admiration and then I will say, Thank you for this day. I will say it before I get out of bed. I will say it as my right foot touches the floor. I will say it as my left foot touches the floor. As I brush my teeth. And by the time I am clean, coifed, made up, dressed and ready to face the world I will have said THANK YOU 100 times.

It is now up to us to fight on, in their names, in their honor. I know it is what they would wish for us. Not to give in, never to give up. They each said it in a thousand ways and I for one will never forget the beauty of their natures. I will embrace the message and carry on... Just some things for you to think about, that I pray will ease your pain my sweet Sisters. I just felt I had to share... With big (cyber) hugs I wish I could deliver in person to each and every one of you...
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-07-2008, 07:32 PM   #10
Mary Jo
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That was a beautiful post Andi. Thank you for that. You are right, our lovely warrior women, wouldn't want us to cower in fear. We were meant to carry on - to trust our lives to the One who holds it in His hands and to live our lives in love and service. Losing loved ones is hard on us but for them their journey has been completed and they are living in total peace and joy right now. THEY are the lucky ones really. Although we can't even imagine being them.....one day this truth will be ours as well......as death will touch each of us at some point. Not necessarily from cancer either......but it will touch us....

For now though.........we will mourn for a while.....give thanks for these warrior women that have taught us so much about the business of living and for the fact that there suffering is now over and we will continue to spread that love to others as we walk a long this road....that's why we're all here.

So thank you Andi....for a well thought out and wonderful post.

Mary Jo
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"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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Old 05-09-2008, 12:33 AM   #11
harrie
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My dear sweet Jean....that was the most beautifully written poem which said it so comprehensively and accurately.
Thank you so very, very much.
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 05-10-2008, 10:50 AM   #12
Leslie's sister
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great posts

Jean and Andi:

Both the posts were great.

Jean you are quite the poet. Very, very nice.

Andi, you have written quite a bit in the past but I have to say that this post is the one that really touched me. Very well said. I also know that all your posts are written from your heart and are filled with your love.

Thank you both.

Lisa
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Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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