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Old 06-19-2009, 09:50 PM   #21
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
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Jackie, I am so sorry for their lack of understanding and patience. It is their loss for not giving you a true chance to prove your worth. I give you an A+ for giving it a shot, for trying your best. Please do not beat yourself up, try again, give yourself another chance. Someone will see your worth and appreciate you as you are, wig or no wig even!!>>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 06-20-2009, 08:51 AM   #22
Jackie07
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Thank you so much, Believe. I have a huge scar (3/4 of a 'circle' on the top [and front] of my head. Because my hairs have been thining (thanks to the good genes from my Dad I look almost bald with the huge circular scar on my head. It doesn't look good.

I wore the wig for a couple of days at the beginning of the training. It was very cold in the classroom. For some reason, the temperature setting was changed and it became too hot for me to wear the wig ( I have very oily skin). (The instructor also had reminded me one time that 'hats' were not allowed according to company rules.)

Also, I was called to the office to filled out a form giving them the name of my counselor at Texas Rehabilitation Commission about 10 days into the training. There were a couple of other girls who were there also to fill out forms on their 'Welfare to work' status.

From my husband's observation - I was completely oblivious - I have not been able to hold down a full-time permanent job ever since my brain (tumor) surgery in 1990. The longest period of empolyment with a single employer was at Central Texas College Library. I worked part-time (19.5 hrs/week) as a reference librarian for almost 5 years before my job became full-time after the expansion of the building. Barely 6 months into my FT (with benefit) job I had to have Gamma Knife to curb the suddenly enlarged tumors. (I was sure it was caused by working directly under the terribly smelling tar roof that had been repaired the previous summer.)

And '14 working days' is not a record. There was a job that I had stayed on for only 4 days before I was told to leave before the end of two weeks.

Never realized the 'power' of chemotherapy until my IQ showed a dropping of 21 points according to the tests given by the neuropsychologist. According to the common IQ test used by the psychologist, my IQ remains constant and I am still very smart. But the fact that I couldn't hold down a new job during training says something about my very damaged brain. I have the hardest time memorizing people's names ('face recognition' has been a tough task for me since I was little - though eventually I will get it.) Detailed information on procedures and policies has always been hard for me to retain.

Thanks again for your encouragement. I am going to check into jobs that I might be able to 'work from home'. I can be a good translator since I know both English and Chinese well. In the next 2 months (The lady at TWC told me I could continue collecting my unemployment regardless of the severance pay,) we should be able to figure out something.

My husband hasn't been working for 7 years. Though he assured me this time he will go get a job, I can not really pin my hope to it. He's a very nice guy, just doesn't have any professional skills and can't stand unreasonable bosses. He's been suffering from 'depression' because of all the illnesses and job losses in the family. (My Mother-in-law passed away early January after suffering from Alzheimer's for more than 7 years. Father-in-law has had two hip surgeries. I've got two brain surgeries and two breast cancer surgeries in the past 19 years. Hubby himself got two stents put into his coronary arteries in 2002 when he was only 45.) My Oldest Brother commented one time giving hubby credit for sticking with me all these years.

But we'll make it. We've always survived and thrived after the catastrophies. And I was brought up by parents who have survived World War II and the ensuing hardship bringing up six children after fleeing communist China. My in-laws grew up during the depression era. The word 'impossible' is not in our dictionary.

I will bring good news to you all soon. Thanks again for writing.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

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
Vertigo
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.
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Last edited by Jackie07; 06-21-2009 at 12:23 AM..
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Old 06-20-2009, 11:59 AM   #23
Believe51
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Since you have known me so long I feel I can say this and you will not take it the wrong way. With the patience and love that encompasses you, have you ever considered working with handicapped or special needs children or adults?

I say this because I worked in the field and truly miss it dearly. You are appreciated and loved right back and the rewards are priceless. Also, they amount of things they can teach you, no book could teach. I feel that working with them was a rewarding and precious gift. I also see you as someone who would be perfect to appreciate them because they are all Warriors too.

Just thinking outloud Jackie.

Much has happened in your lives and marriage in the last 7 years. If impossible is not in the volcabulary in two different languages, well then time will bring those things when you both are ready. Both of you be gentle to yourselves as you wipe your skinned knees and more forward. Love will carry you a million miles together and this is something I do know!!>>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 06-20-2009, 02:26 PM   #24
StephN
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Dear Jackie -

You seem "with it" enough here. As qwe all age we need to keep sharpening our "tools" the best way we know how. Stay active, keep oxygen going to the brain and find things that interest us.

And, by the way, just keep in mind that knowing and working within our weaknesses is our greatest strength! You have no trouble in that department, but find a way to overcome or get around them.

Keep it up, dear friend!
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Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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