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Old 04-20-2016, 11:53 AM   #1
SoCalGal
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Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
Today marks 9 years living with cancer; stage 4

Today marks 9 years living with cancer; stage 4. I like to re-post this spontaneous stream of thought from 2007, when I was first diagnosed with mets. I can remember feeling so much grief at the news, and thinking, oh gosh, I'm in real trouble. This is IT, the beginning of the end. I was frozen in fear. That's when I found this group and when I realized that you could live with this beast. Never, EVER did I imagine I would live 9 years. So, with gratitude and appreciation, I repost this - it is something I still feel today. I am every woman, we are all one-love.


I AM EVERY WOMAN©

I am every woman with stage-four breast cancer.
I am every tear ever shed.
I am every pain,
every fear,
every test,
every scan.

I am every unpredictable tumor marker.
Rising to diminish hope,
Sinking to diminish fear.

I am every feeling of despair, of fear, of loneliness, of isolation, of shame and of worry. I am every woman longing for her breasts, grateful for how they nourished her children and satisfied her lovers. I am every woman mourning their loss. I am that empty space; I am every missing breast. I am every lopsided shirt, every uncomfortable bra, every prosthetic, every implant, every insert, and every effort to camouflage and fill in the void. I am every reconstructed nipple trying to match what only God could make.

I am every child who has watched their mother fighting for her life. I am every child who has lost their mother to the fight.

I am every hair,
floating from its scalp
falling in clumps,
in tufts,
in long winding tattle-tails
until nothing is left but a newborn’s head.

I am every woman’s broken heart as she stands in front of the mirror;
Pale from chemo,
Breastless and bald,
Naked and vulnerable
TRYING to be a warrior.

I am every woman as she puts on her warrior paint. I am every hand-drawn eyebrow, every glued-on eyelash, every pot of blush, every wig, every scarf, every turban, every cap, and every hat. I am every woman warrior, painted bravely for battle.

I am every woman with stage-four
(metastatic-shhhh!)
Breast cancer
Trying to sleep at night, trying to find comfort and safety and hope.


I am stage-four (metastatic-shhhh!) breast cancer.
Dividing for NO reason or for too much? estrogen, progesterone, sugar, stress…
OR genetic damage,
Or not enough? Antioxidants, amino acids, omega 3’s, omega 6’s, melatonin, vitamin d, vitamin e, vitamin a, vitamin b, vitamin c, green tea, red tea, black tea…

I am every woman with METS
to her lungs, her sternum, her bones, her lymph nodes, her spine, her liver, her kidney, her skin, her brain, her body, her heart (BUT NOT HER SPIRIT).

I am every woman with Stage-Four Metastatic Shhhh! Breast cancer to her life.
Mets to her family, her friends and her lovers.

I am every woman with STAGE FOUR metastatic breast cancer (out loud), desperately awaiting a cure. Wishing and hoping and praying and begging and fighting and fighting and fighting.

I AM EVERY WOMAN WITH STAGE 4 (of 4) METASTATIC BREAST CANCER (LOUD). Running for a cure, walking for a cure, painting for a cure, writing for a cure, researching and networking, and donating, and praying and hoping and fighting and fighting and fighting and fighting for a cure. I am every woman, demanding a cure. I am every woman, with stage-four metastatic breast cancer, DEMANDING A CURE.

(c)2007
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.

Last edited by SoCalGal; 04-21-2016 at 01:29 PM..
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