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Old 06-08-2013, 01:04 PM   #1
CoolBreeze
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Re: Remembering jml our Jessica

Oh my gosh, she is a staple on this forum and I had no idea she was doing this poorly. I am so sorry for those who met her, who knew and loved her.

This is a horrible beast, cancer.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 06-08-2013, 02:41 PM   #2
ElaineM
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Wink Re: Remembering jml our Jessica

Thanks for this post. Wonderful and such a tribute to Jessica.
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12 years and counting
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Old 06-08-2013, 05:22 PM   #3
Jackie07
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Re: Remembering jml our Jessica

Found her very first posting on this site in 2006. What a wonderful soul!

Angela~
I'm so sorry that you're going thru the shock, disbelief, guilt, sadness and all the other confusing emotions that come with this disease.
I was diagnosed Stage IV (liver mets) since my primary dx in May 2002. It was particularly frightening because my perception of Stage IV disease was so dark & ominious. But I'd never met any Stage IV'er like ME!! If I knew then what I know NOW...!
I have continued to teach Pilates throughout (4 days after the initial lumpectomy,and also 6 days after a mastectomy, as well resumed teaching after a liver resection) w/a post-op drain still in place, stitches and even a portable pump w/a continuous IV for one treatment I was on, but most importantly, I have continued living well and being well. I hope and believe that being active & visible and sharing my experience with women (& a few men) who take my classes will help change their perceptions of this disease.
True, our journey as Stage IV'ers can be quite a bit bumpier that early stage BC'ers, with more complex treatment histories, more surgeries & procedures, requiring us to be more diligent about our care. And unfortunately as Stage IV'ers there is no 5-year mark to look towards to be deemed "CURED".
BUT very little of my life these past 4 1/2 years has actually felt dark & ominous! And you will find so many wonderful, knowledgable, empowered friends on this site who can say the same & offer you wisdom, encouragement, comfort & support, in every way possible. We all have continued to have full, rich, active lives as we are survivING this disease.
We know more today about this disease & her2 than we did even a short 5 years ago. We have more treatment options. We have longer term data to support our survivability. Be sure to check out Christine's note on 12/24 - so encouraging, SO EMPOWERING!
We are Changing the Face of Breast Cancer. And survival begins the day you're diagnosed, not after 5 years. I thank God for this site & am so grateful to Christine & Joe for the community they've created for us. And now I know I'm not a Stage IV Anomaly - I've found SO MANY women "like ME" here!

Stay strong, and when you can't, LEAN HARD!

Keep the Faith~
Jessica
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NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
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GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa

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Last edited by Jackie07; 06-08-2013 at 05:36 PM..
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Old 06-08-2013, 07:04 PM   #4
caya
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Re: Remembering jml our Jessica

It's such a shock to see another sister earn her wings. I hope Jessica is soaring up there with the others we have recently lost here.

all the best
caya
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1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-08-2016, 08:54 AM   #5
LeighHa
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Re: Remembering jml our Jessica

My name is Leigh Hays and I live in Atlanta. Jessica was my bestie, my sister from another mister. I was sharing Jessica's story with someone and they asked if they could share her story. As i was googling her for links of her story for him, this post came up. It's taken me all of this time since her passing to have any strength to pop in here and say hello.

Most of all, I wanted to share with you all, how much you all and this group meant to Jessica. She was often quiet about you all in terms of details but she would mention bits and pieces and most of all how much you helped and supported her.

Her dog - Polo - came to live with me. He is doing well (snoring as i type this) and will turn 11 yr in March. He visits his favorite places and people still here in Atlanta. My boy - Gus - and Polo had a bromance and he often stayed here while Jessica traveled. And the four of us would often walk the dogs and hang out.

Her family of friends in Atlanta (and across the country) still gather and celebrate her. Jan 4 she would've turned 47 yrs. and we had our potluck lunch just like we did with Jessica. She is still a strong presence for us and a testament to her fierceness and generous spirit that we all still gather together to celebrate her and have a slice of cake. I'm still strongly tied to JML's family. They are well and like everyone - miss her enormously.

Best to you all - Leigh
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Old 01-08-2016, 02:09 PM   #6
europa
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Re: Remembering jml our Jessica

Hi!
When I saw this thread pop back up it made me smile because I got to scroll through some of our angels that have left us. And we've had many amazing women leave this world. Jessica is one. Thank you for posting on our board. I remember emailing with Jessica about dating of all things. I really miss her. When she died I bought an orchid and named it JML. When she blooms I always feel like Jessica is gracing my home with her spirit.

Give a belly rub to Polo from me.

Thanks again for posting.
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


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8 YEARS NED
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