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Old 07-27-2014, 08:22 PM   #1
DogLover
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Do you ever stop thinking about cancer?

I am wondering if those of you who are further out in your treatment can comment on if you ever stop thinking about cancer and having cancer. I have not had a single day since my diagnosis when I have not thought about cancer, thought about having cancer, and most days read as much as I could about cancer and cancer treatment. Is this my new normal? Will cancer invade my life on a daily basis from now on? It isn't as if I am depressed or anything. It is just that I am surprised that I think about this diagnosis at least once per day even though on most days I feel good. Any thoughts or comments?
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age 60, postmenopausal
8/13 suspicious mammogram, left breast
9/13 core biopsy
9/13 dx invasive ductal carcinoma
9/12/13 lumpectomy with SNB, ER/PR/HER2 +, nodes negative, clear margins, 2 cm tumor, stage 1a, grade 2
10/21/13 port surgically implanted
10/28/13 first chemo today, TCH
3/3/14 Started H alone every three weeks
3/10/14 Started radiation
4/29/14 Completed radiation
10/28/14 Completed Herceptin
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Old 07-28-2014, 12:00 AM   #2
BonnieR
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Re: Do you ever stop thinking about cancer?

I know exactly how you feel. I had the same concern. Cancer owned my every waking moment, it seemed. But now, I never think about it. It's as though it happened to someone else. I know that it has changed me forever and given me some attitude adjustments but they are part of my "new normal", my fabric. But I don't fret about it or dwell on it anymore. It's behind me
I think we all go through a process of stages. I'm sure it's normal and you are where u should be at the moment. But it will pass and one day you'll realize that you haven't been thinking about cancer. And it will be very liberating!
Keep he fsith
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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 07-28-2014, 04:36 AM   #3
suzan w
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Re: Do you ever stop thinking about cancer?

I still think about cancer every day. In the beginning it was all about fear, anger, grief. Now it is about gratitude (imagine...grateful and cancer in the same thought!!),determination, and knowledge. And a little bit of fear!!! I don't think that the fear ever really goes away. Like other traumatic life events, cancer is always in the back of my mind. There are reminders everywhere. Every morning in the shower, there it is, BOOM!! No breasts! Oh, yeah!!! Cancer! I feel powerful for all that I did, and continue to do to fight the beast...for myself and for all affected.
Yes, I think about cancer every day. It floats through my mind like a cloud, some light and fluffy thoughts that pass by quickly. And every once in a while a dark angry storm brews. Cancer is now on my list of life experiences. Not one that I chose, but there, nonetheless.
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 07-28-2014, 06:17 AM   #4
europa
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Re: Do you ever stop thinking about cancer?

Hi there. I don't think of cancer every day but it does come to mind when I'm triggered. Certain things trigger it, rubbing alcohol, hospitals, if I have an unexplained pain...etc.
When I went through treatment I thought about it all the time and so I went to see a therapist who I still see today. She has helped me tremendously with my new normal. She once told me that cancer is like a huge oversized sofa in a very small room. In the beginning you think of it all the time because it's so intrusive and it takes over your life. But as you get further from treatment it shrinks and becomes a chair, then a coffee table and eventually it's a small magazine rack that you run into every once and a while. But it takes years. I would suggest you see a therapist. I saw mine once a week during treatment, now I see her every three weeks for a mental check in. Hope this helps.
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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.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 07-28-2014, 09:08 AM   #5
'lizbeth
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Re: Do you ever stop thinking about cancer?

It will sneak up on you - and then you will realize that hours or days have gone by where you have been living a normal life without thinking of cancer.
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Old 07-28-2014, 09:19 AM   #6
sarah
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Re: Do you ever stop thinking about cancer?

Yes, many, many days and weeks go by without thinking about it. You're new to it and it's typical to think about it a lot but you'll think about it less as time goes on. In a way it's ok to think about it and be prepared for it but life is a wonderful gift and we shouldn't miss out on living it fully.
I see you've finished your treatment, congrats, you're free! It takes everyone a different amount of time to really believe, hey, I'm going to live!!! All I can say, is get there as quickly as you can.
I'm also getting older and that makes me think, wow how much time do I have left because of that as well. I am enjoying life so much. So don't forget to enjoy life.
hugs
sarah
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Last edited by sarah; 07-28-2014 at 09:24 AM..
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Old 07-28-2014, 04:45 PM   #7
tricia keegan
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Re: Do you ever stop thinking about cancer?

I don't think we ever fully forget we had cancer and we are survivors and need to stay in tune with our bodies for any new pain or symptoms, however It really doesn't cloud my days and most times if I think of it its only to feel so glad I I spent almost two years in treatments and very blessed that I'm still doing well. I do also feel sad when I see others who have passed that had a better prognosis than I did and wish we knew more about this disease..however to answer your question, it does get better and cancer will eventually take a back seat in your life but to forget it would be a mistake so be aware but don't allow it to control you would be my advice.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-29-2014, 12:03 AM   #8
sarah
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Re: Do you ever stop thinking about cancer?

Hello,
Suggest reading Mary Jo's post Wanting to encourage the new her2 sisters, it has some true things in it about the changes we all go through and yes, Tricia, you're right we can never not be vigilant.
health and happiness
sarah
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Old 07-29-2014, 05:35 AM   #9
Paty
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Re: Do you ever stop thinking about cancer?

No, I never stop thinking about cancer. After living an experience with cancer we tend to become oncophobic, but little by little you learn to control the thoughts and fears that come with it.
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 07-29-2014, 03:36 PM   #10
DogLover
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Re: Do you ever stop thinking about cancer?

Thank you all for posting! I am feeling reassured that I may be normal after all. I don't worry or obsess about having cancer but I do find that it crosses my mind at least once a day. Seems as though that may not be all that unusual.
Sarah, I have not yet completed treatment but I am nearing the end. I will receive my last Herceptin at the end of October.
I see my oncologist next week and will ask when I can get this d**n port out! It hurts tons each time they access it. It also hurts some most of the time. I know it is a necessary evil but I will be glad when I can finally get it out!
__________________
age 60, postmenopausal
8/13 suspicious mammogram, left breast
9/13 core biopsy
9/13 dx invasive ductal carcinoma
9/12/13 lumpectomy with SNB, ER/PR/HER2 +, nodes negative, clear margins, 2 cm tumor, stage 1a, grade 2
10/21/13 port surgically implanted
10/28/13 first chemo today, TCH
3/3/14 Started H alone every three weeks
3/10/14 Started radiation
4/29/14 Completed radiation
10/28/14 Completed Herceptin
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Old 08-05-2014, 07:41 PM   #11
CoolBreeze
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Re: Do you ever stop thinking about cancer?

DogLover, a lot of what you think about is in your control. If you learn to let it go, you will be able to. You probably will want to stop reading cancer forums, talking about cancer with friends, etc. If is a process that will take time but one day this will hopefully just be a bad memory for you.

I don't even think about it every day and I'm metastatic. Your brain does just get sick of it.
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http://butdoctorihatepink.com

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 08-06-2014, 09:10 PM   #12
carlatte7
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Re: Do you ever stop thinking about cancer?

Coincidentally...today is the 2 yr anniversary of my partial mastectomy aaaaand....i forgot. Yep, totally forgot. Now, it wasa crazy busy day, but i did not think of having cancer until 1030 tonight. Onco appt next month and surgeon appt in october will be preceded by 2 weeks of near paralyzing anxiety, but for today, there was peace.
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Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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Old 08-11-2014, 04:06 PM   #13
Andrea Barnett Budin
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Re: Do you ever stop thinking about cancer?

I think about cancer every day. Several times a day. It just pops up. I think of the lessons I've learned and I smile. I think of the friends I've made that I'd never have met otherwise, and I smile.

I talk to my body. Several times every single day. I remind myself to be, or try to be, STRONG, BRAVE and DETERMINED. I inform my body, and the Universe -- HEALTHY AND WELL. NO MORE CANCER.

I've been saying that since around April of '99. I had metastasized in '98. I started out at 4th stage, w/2 out of 21 lymph nodes involved. They didn't test for HER2 in '95. In '98 when I recurred, throughout my liver, I asked to be tested, even though Herceptin was still in clinical trials. I'd been reading up.

I was found to be HER2+ 80% (which is how they staged it back then). 1 mnth later, Herceptin was fast-tracked out of clinical trials and made available for metastatic bcers. LUCKY ME! I stayed on H for 10 yrs.

Been off for 6 years!

Stable for 15 yrs.

Yes, I think about cancer everyday. Which is when I spring into action and remind myself to be Strong, Brave and Determined. And then I emphatically tell my body -- HEALTHY AND WELL! NOOO MORE CANCER! And I smile...

Stick with positive. I can't help myself.

Wishing you joy and wellness!

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 08-12-2014, 05:05 AM   #14
Aussie Girl
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Re: Do you ever stop thinking about cancer?

I'm starting to find I'm not thinking about cancer, that is my own cancer, constantly now. I think about cancer at work because that's my field of work. I have so many other things to do and to worry about. Certainly the "death threat" aspect is easing. The side effects that are still with me bring it to my attention, but it's a low grumble rather than buzzing anxiety. May be the chemo brain effect is my friend in this??? I do tend to play the "forgive me it's the chemo brain" card when I do sometime ditzy.
Cheers
Diane
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31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 08-12-2014, 12:47 PM   #15
Andrea Barnett Budin
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Re: Do you ever stop thinking about cancer?

When I think of bc, I think of the awesomeness of Life.

I marvel at the blue sky, the grace of each tree. I am gentler than ever with others, knowing everyone has their battle. I love more and talk to strangers as friends and that's how thinking of cancer has manifested in my life.

As for the chemo brain, Diane, you know me. I have supplements to help me focus. Age has a way of filling our heads with so many factors we find ourselves doing the simplest and routine of things wrong, as our thoughts are way ahead of us.

Even my forty something kids find that there's so much input in this world these days, and they have little ones to care for, it gets pretty crowdy up there in our heads. Life is more complicated than ever. Never boring...

)) 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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