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Old 05-07-2008, 01:48 PM   #1
julierene
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Book Idea - Thoughts? Would you want to read it?

After my Stage 4 diagnosis, I kept hearing the words go over and over in my head, "I'm sorry, but you're terminal." It went through my head probably hundreds of times a day, to the point where I would get tired of hearing myself think. I just wanted to kick my voice out of my head. My fingers would invisibly type, "you're terminal" over and over throughout the day. I even typed the apostrophe! That damn shift key was annoying me!

I don't know if it was normal, but it was impossible to deny that I was obsessed about it. I would spend hours and hours looking for research on the internet. I would bring articles to my oncologist, and beg him for the latest and most experimental treatments. I slowly stopped playing games with my husband because I felt like it was a waste of my time. Time... Time was NOT on my side! I had lot to do, and not enough time to do it. But yet, all I could do was think about what he said, "you're terminal". Over and over, I literally typed it out in my journal. My fingers went wild and my arms ached. I had spent all night writing everything that had been on my mind. The next morning, I was at the repetition of, "you're terminal". I just kept typing until I was furious. I manually typed it probably 30 times before I realized something extraordinary. I pounded my hands down on my desk and slammed my finger on the 'caps lock' button, and frantically typed, "DAMN IT! WE'RE ALL TERMINAL!"

It was finally over. I sat back and felt an enormous wave of relief rush through my whole body, and then I cried. I cried for everything I thought I might miss. I cried for everything I thought my children would miss. I cried for them and for me. I cried for my family and friends. Then I finally realized, I wasn't alone any more. I wasn't the only one who was going to die. No one knew when my time would come. Even if they did think they knew, there was no real way of knowing when it was going to happen.

People always say, "You never know, you could get hit by a bus today." But it never felt right. The words would always nag at me, and it was because I felt like I was the one who was being shoved in front of the bus. The bus was coming straight for me, and I was just standing there like a deer in the headlights. I was frozen with panic. It was time to move. It was time to run out of the path of that bus and experience and enjoy life. It was time to stop making excuses and do the things I really wanted to do.

I slowly started to move forward. I started planning and doing the types of things I wanted to do. I couldn't just kept making excuses like, "I didn't have enough time", or "I couldn't afford it". I had no choice. It was break it or make it, and I was going to make it happen! I was finally hearing excitement in my own mind. I had finally broke free from the words, "you're terminal" and started to live again.

I have a whole outline that starts from my mother's breast cancer, briefly through all the various stages of my life, through my own diagnosis, through my daughter's diagnosis, through the genetic testing of my other children, dealing with those results, being stage 4, getting divorced, fighting for my children and the right to move back to my home, dating and finding love again, all the way to now...

What do you all think?
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 05-07-2008, 02:54 PM   #2
Barbara H.
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Julie, this is beautiful. Go for it!!!
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Old 05-07-2008, 03:00 PM   #3
lexigirl
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julierene,

I was just thinking about you! So happy to see your post. I think your book idea sounds great! Definitely got for it!

Lexi
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Old 05-07-2008, 06:37 PM   #4
Mary Jo
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Could I have an autographed copy please?

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 05-07-2008, 07:29 PM   #5
karen z
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Yes, Julie- write this!!
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Old 05-07-2008, 08:20 PM   #6
Bill
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Julie, except for the last paragragh, and last line, of your post, I think we just read the preface to your book! And you know what? It was awesome! I would change nothing. You have already started your book. You're a powerful, inspiring writer. Now get to it! Best wishes, Bill
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Old 05-07-2008, 09:33 PM   #7
swimangel72
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Julie your words flow so well - go for it!
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Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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Old 05-07-2008, 09:45 PM   #8
ElaineM
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thoughts about book

Hi,
You are a fabulous writer. The book is a great idea. Go for it!!
By the way, just because some insensitive doc tells a person he or she is terminal it doesn't mean he or she is right. Some people live many years after a terminal diagnosis.
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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
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 05-12-2008, 07:16 AM   #9
tammymarie1971
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Wow...very thought provoking post!! Love how you put into words what I am sure lots of us think!!!
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Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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Old 05-12-2008, 09:11 AM   #10
Ceesun
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Julierene, Your words have inspired me. thanks. Ceesun
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Old 05-12-2008, 09:41 AM   #11
Mary Anne in TX
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Make it happen, girl!
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 05-12-2008, 04:45 PM   #12
R.B.
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Julierene,

My uninformed impression is you write well.

Go for it. Do it for yourself and your children, and if others like it so much the better.




RB
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Old 05-13-2008, 10:14 AM   #13
sarah
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Go for it!!! good story!
hugs and love
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Old 05-13-2008, 10:58 AM   #14
KelliD.
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Awesome!!!!! Go for it!!!!
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Old 05-13-2008, 05:35 PM   #15
Soccermom
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Julierenee...

I "thought" terminal is a place where buses, planes and trains come and go...
I refuse to beleive that a human beings longevity would be referred to using THAT word!!!
LOVE your writing style!!!!

Bug hugs,marcia
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Old 05-13-2008, 06:36 PM   #16
Cathya
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Julierene;

Someone told me once that out of all bad comes good.....no matter how bad.....there is good. Many, many people would be inspired by your story and perhaps that inspiration....the hope and strength it would give others.... is the good that comes from your diagnosis. I know that I would love to read your story.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 05-13-2008, 07:02 PM   #17
Julie2
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Very inspiring. I go through the samething everyday and try to find a break point and to start live again.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 05-14-2008, 06:27 PM   #18
NanaKaren
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I think you would write for alot of us. You say it so eloquently. I like your style. Write, darling, write. And by the way, no has the right to put an expiration date on us. As we all have heard Yogi Berra say many times, "it ain't over til it's over." And like Mary Jo, I would like to have an autographed copy also. Good Luck! Love, Nana Karen
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Old 05-14-2008, 08:42 PM   #19
Sherryg683
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I would be one of the first to buy a copy because I feel you are telling my story. I remember coming to this board in December 05 and you were here. I think we were both diagnosed stage IV around the same time. I could definately relate to you and what you were feeling because we were going through it together in a way. When you announced you were NED in March, I was estatic that it happened to you and prayed it would happen to me also, which it did a month later. I cried when you came back later and said your liver mets had returned, but am so happy to see you are NED again. I worry that if I ever get bad news again I might not be positive to think I can overcome it again, it might just be too hard. But you have proved it can be done. Write this book, it's not just your story, it's mine and lots of other women here that have heard those damn words..."it's terminal". I don't use that phrase very often because it feels so final, but it is a fact that we all are terminal..we are just more aware of it than most. Please write it if you feel you can. I wish there was more books that gave some hope, inspiration or just plain "i understand how you feel" to those of us with advanced cancer. ...sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 05-14-2008, 11:45 PM   #20
harrie
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Book

I would absolutely love to read your book. You should do it!

Speaking of books, I am finishing up one right now that is excellant. It is called A New Earth by Eckhart Tolle.
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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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