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Old 05-07-2008, 01:48 PM   #1
julierene
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Join Date: Dec 2005
Location: Illinois
Posts: 327
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?
__________________
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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