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Old 10-22-2008, 09:59 AM   #1
loveher
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Join Date: Jun 2008
Location: NY
Posts: 81
Wanting to escape

Lately, I've been feeling really conflicted.

Im away at college about 5 hours from home and when im here i feel "normal". I forget that i have a mother who's illness is incurable. I like this normal feeling but then I feel guilty that i'm being irresponsible.

I keep think of last november my mom went through a horrible surgery, and i felt partially at fault. she had a lot of back pain and the doctor didnt address the issue properly and her mets went unnoticed for way too long. I was away at college and my parents kept me completely in the dark. i knew something wasnt right bc my mom just didnt sound like her perky self on the phone. She was actually getting radiation, she had so much pain she slept in a chair and was taking morphine. but it didnt work and she went in for emergency surgery, she only got partial anethesia and was conscious through the whole thing.

when i got home, all my dad said was that my mom was in the hospital. I felt so alone in the empty house, i kept expecting to hear her call me but she wasnt there. the next day i went to see her in the hospital and she look unregocnizable her whole body was extremely bloated, she had bruises all over her because she struggled during the surgery. i thought for the first time that maybe she might not get through it.

She's stable now but she is just not the same, shes so much weaker and im still not completely sure how extensive the mets are and if her back is holding up.

I feel that i should be on top of her treatments and talking to her doctors during her appointments and keeping track of her tumor counts. my parents have once again started to keep me away from the truth.

It's difficult because im terrified of hearing about her condition because in the end, i know her disease isn't curable. so part of me wants to just stay at college the whole year and stay in my bubble and ignore the problem.

on top of that, im at an ultra competitive college where im lucky if i get around the mean on tests.

Everyone tells me to be strong but it's hard.

fellow caretakers: do you ever want to just escape?
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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Old 10-22-2008, 02:24 PM   #2
Rich66
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I hear you. I just returned to my own abode for a couple days and I feel the guilt for not being there..even when there isn't much I can do. And yes..when I'm in the midst of "normal" life, or feeling healthy, it's easy to feel guilty about enjoying it. I try to keep in mind the notion that our folks don't want us to be consumed by their issues. I look at it as trying to find a reasonable balance in an unreasonable situation. Oh..I'm far from achieving it but want you to know you aren't alone in your feelings.
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Old 10-22-2008, 09:00 PM   #3
ElaineM
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Red face wanting to escape

I am so sorry to hear about your mom. I am sorry you are both having such a hard time. Can you have a family meeting to discuss whatever needs to be discussed? Are you listed on the list of "in case of emergency notify" in her doctor's office? Can you talk to a counselor or instructors at your school-----people who could help you get your school work done during this difficult time for you and your family?
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
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Old 10-23-2008, 12:31 PM   #4
Colleens_Husband
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Hey Sue:

Thanks for posting and thanks for being so open and honest with all of us here. I know this wasn't very easy for you to say.

Sue, you have nothing to feel sorry about or to apologize for. You live a full five hours away and you have your own life to live. With you being away to college, you are doing the absolute best you can for your mother. The best thing you can do for your mother is to live the best you can and become the best person you can possibly be.

You may want to make inquiries into a thing called 'survivor's guilt'. This may help you see that you are having perfectly normal and predictable feelings over an emotionally devastating situation.

I don't wish to get away from it all because I know that each and every day I spend with my dear wife is a precious gift. Try to make the time you spend with your mom mean something and you may not feel so bad when you go away to college.

And don't take this trying to be strong stuff too seriously. Sometimes its okay to lean into your fears and pain. Its often the easiest way to get through all of this.

Sue, you are in our hearts and prayers.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 10-23-2008, 02:37 PM   #5
BonnieR
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Hello Sue. I wonder if your parents are not "keeping you in the dark" so much as they are trying to protect you and allow you to have as normal a college experience as you can. It probably makes them feel better to think you are living your life. That is their dream for you. It is not your job to manage her care, as much as you wish you could do so.
It is normal to feel powerless and even guilty sometimes.
Is there a patient advocate sort of person, or a social worker or psychologist associated with her hospital who could discuss things with you? Or as someone else suggested, a counselor thru your school?
Your devotion to your mother must bring her great comfort. As Lee said, just be the best person you can and that will make her proud...
Keep the faith.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-23-2008, 02:53 PM   #6
Jackie07
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Hi,

Not sure what to tell you since I don't have any children. I think your Mom would not want your schooling be interrupted or affected.

It is very hard to concentrate while your Mother is fighting cancer. Please utlize the counseling services provided in your college and get some professional support.

Can you stay in touch with your Mom and family members through phone calls? I've talked with my family overseas every weekend just about for the past 20 years.

And take very, very good care of yourself, because that's what all parents worry about - their children's welfare.
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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.
"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

Advocacy is a passion .. not a pastime - Joe
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Old 10-24-2008, 10:01 AM   #7
loveher
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Thanks guys!

Im feeling really upbeat today. I have good days and bad days. yesterday i had an occasional bad day mainly bc i was studying for a midterm and kept thinking about my mom so I felt the need to post and get it all out.

I know my parents want me to do well but its a bit hard for me to see things from their perspective.

I saw my counsellor yesterday and he actually recommended me to take a year off. grrr it made me so mad bc it wouldnt solve anything, I cant imagine what i would do, sit at home and knit scarves? My biggest goal right now is to make my mom proud and graduate!!!

usually parents call their college kids and nag them but actually i call my mom everyday and shes always like "stop calling im doing laundry" or something of that sort.

I guess the what im learning is that I can't escape the fact that cancer is part of my life but there's still lots to celebrate and i cant let it overshadow all the good times i've had with my mom.

sorry for being super cheesy, thanks for listening to me rant you guys!
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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Old 10-24-2008, 11:18 AM   #8
SoCalGal
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Hi Sue-
Here's my two cents... Let go of the terrible memory of your mom in the hospital (living in the past). Let go of the fear of her death (living in the future). Live in the present...the greatest gift you can give your mom and yourself.

Your mom wants you to graduate. I am 100% certain of that. You are a good and loving daughter. I am 100% certain of that.

Posting here keeps you strong. People say "stay strong" because they know you can. Focus on school and your friends - that's your job! Go see your mom and little bro over Thanksgiving break

Sending you a big hug today. Study!

Love
Flori
__________________
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.
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Old 10-25-2008, 03:58 PM   #9
loveher
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Thank you Flori

I think that really gave me a better view of things.
I've always tried to live in the moment but i dont think i've fully let go of what happened last fall. But now i see that i gotta let the past go.

Im glad everyone is reasurring my desire to do well in college. Its frustrating hearing my cousellor and a couple of my friends suggest that I take a leave of absence.

Ok ill go study now.
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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Old 10-26-2008, 03:17 PM   #10
Jackie07
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Sue,

Coming from an oriental background, I understand how your Mom is feeling right now. Please concentrate on your study. The cultural tradition is such that there's nothing better than achieving your goal (good grades, good jobs, ...etc) if you want to make your mom happy. As a matter of fact, it could well be the best incentive for her to keep on fighting so she could see you graduate, get married,...

My parents are in their 80's and 90's, yet they worry about my health because I've had several surgeries. Be sure to take good care of yourself. It is hard , but you can do it.

Say a little prayer to calm yourself before studying. It could help with your concentration. And remember that both you and your family are in our prayers.
__________________
Jackie07
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.
"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

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 10-27-2008 at 12:06 PM..
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Old 10-26-2008, 11:07 PM   #11
harrie
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Sue, hi...its me again....
I really like that pic on your avatar of you, your mom and your brother. You seem to look a lot like your mother!
Anyways, its normal to have your up and down days. I am glad to hear that you are working hard with your goals and ambitions. I am sure you make your parents proud and in that respect you are doing your part well in supporting your family.
I know your mom must have her good and bad days, but for her to go to sleep at night knowing her kids are doing well with their lives is VERY comforting. That in itself I am sure helps her get through her difficult times.
When my mom was having her hard times and would be in the hospital, I remember very well that feeling of flying over to where she lives, walking into the house and knowing she is not there. It can be tough. But do remember, she is in very good hands. I know you are very smart and caring young woman and so I would presume your parents are also very smart and are very capable of staying on top of all her medical concerns and making sure the very best decisions are being made.
Take care. Please feel free to email me if you like.
Much aloha,
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 06-21-2012, 05:27 AM   #12
karen z
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Re: Wanting to escape

Hi Sue.
I think you have gotten some wonderful advice here and you might have more than noticed the common themes. It sounds like you are feeling better and stronger and I think the advice to live in the present, continue your studies and continue to make your parents super proud of you (and not to beat yourself up) is all very sound. You love your parents and they know it.
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Old 07-01-2012, 04:36 AM   #13
norkdo
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Re: Wanting to escape

Sue,
I am writing to support you. Parents should not "protect" you while you are away. I wrote a blog on this topic last summer because my best friend, away in Europe for many months, was lied to by her dad about her mom's b.c. condition and returned just in time for the end. I saw firsthand the terrible compounding of the sad situation of her mom's death by the coverup. My thoughts are with you.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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