Please help – starting a long fight!!

2reasons 2 fight. I will be 39 in a couple of weeks. I was diagnosed 11/07. I found out I had cancer the day my son turned 1 yr old and just 3 weeks before my daughter turned 4. Your note took my breathe away.
I truely know your sense of fear. I used to have these moments ,when I would suddenly become overwhelmed by fear for my children. I called them “waves of terror”. They get better. And…almost go away completely.
I had my surgery (liver resection) and had my chemo (gem and cisplatin…the gem is the important part it is the only med that has shown any resonse in our disease…not enough studies) and life slowly got back to our new “normal”.
9/09, just 6 weeks after I finished a mini tri athlon, another shock. It is back, in what is left of my liver. So here we go again.
I think all of the positve stories you hear help. They are filled with hope and love. and that is really all we can do. Fill our selves up with hope and love and believe in it.
One last thing I can’t say loud enough is, be your own advocate. You are already doing that if you found your way here. Remember if a plan does not sound good to you…it is not your plan. Look under every stone to find the one that is.
Oh, and laugh….a lot.
Beth O

Lulu….Congratulations. You are a real inspiration. I wish for a quick recuperation and nothing but continued good news coming your way.
All my best wishes, and more
Hugs
Marion

Lulu. What a great story of perserverance and advocating for ones self. It pays to never, ever, ever, give up. ( paraphrasing Winston Churchill).
Good luck and keep on fighting . You’ll feel a lot better in the coming days. I can almost guarantee that!

Hello to everyone. I have not posted on the site for awhile I have been extremely busy. In October 2009 i was as diagnosed with cc. An actual tissue sample was never obtained from the tumor or my liver
but they called it cc. I turned extremely jaundice and had an external stent placed to help with the bile while I waited for an appointment with a surgeon at one of the top notch cancer centers in NY. Ay my appointment my surgeon said that liver resction was possible but just a few more tests to make sure cancer had not spread to any other organs. Over the next month and a half they internalized the stent perfromed a laparoscopy on the peritoneum they were sure the cancer had spread to my stomach. Yet again no biopsy could be obtained so pelvic washing were done which turned out negative. The surgeon said all we needed now was a PET scan and if it was clear we would proceed with surgery. I had the PET scan second week of October. My surgeon called me and said that there were suspicious findings in my chest no surgery. He advised me to see an oncologist in the same group. The oncologist said all that could be done for me was chemo when I questioned other therapies or treatments she just shook her head and said I was not a candidate. I’m 51 years old this was just devastating. Here is the part where this wonderful website came to play I posted exactly what the oncologist told me I think it was Marion who replied her advice was as soon as you hear the words NO you pick up your belongings and move on. Shortly after that a gentlemen named Marc who was also on this site because his mom was diagnosed with cc sent me an e-mail. In the e-mail he urged me to get a second opinion from a Dr Myron Schwartz at Mt Sinai Medical Center in NY he is the head of surgical/oncology and associate director of their liver transplantation program. I now consider Marc my guardian angel. I called Dr Schwartz office and received an appointment within 2 days. Dr. Schwarts looked over all of my studies which their were many he looked me straight in the eye and said I do not believe that the cancer has spread to your chest. I believe the suspiscious findings were due to the drainage procedures and laparoscopy you had. Imaging how I felt this man had some much confidence and compassion. We repeated the ct chest and abdomen that day he was correct all had cleared up. I had a liver resection last week on the 19th he took the whole right lobe and a tiny lesion on the left lobe. I now have 40% of my liver which Dr. Schwartz said is more than enough. I do not know how I will ever be able to thank Marc for that e-mail and Marion for giving me that push I needed. I would urge each of you to check this site everyday for their is information that just might be invaluable to you. I know I still have a long journey ahead of me but at least now I will get to travel that road. My thoughts and prayers are with each and every one of you.

Dear Chris,

I also wanted to tell YOU how thrilled I am for you! Some days, I feel guilty when I come here and “flaunt” my success, but I really truly feel that people need to know that there really are survivors and I am so happy to hear from another one!!! May good health continue to be yours!!!

Hugs,
Sue

Chris….it is always wonderful to hear from you. We never get tired of hearing your story. Please, remind us as many times as possible. And, I would love to hear about your plans for the upcoming Birthday Party.
Best wishes,
Marion

Dear 2reasons2fight:

Welcome to the best little club on the internet that no one really wants to join, myself included. I am my husband Tom’s wife and caretaker. I too did not wish to join this group, but now that I have, I’m most grateful! You could not ask for a more caring group of people, all willing to share their knowledge and their experiences.

Never give up, attitude is everything when fighting this type of cancer. As I always like to say, no one has an expiration date stamped on the bottom of their feet (or on their butt!)

No one wants to die, myself included. I also do not want my husband to die. We are fortunate that our children are all grown and have families of their own. Somedays, I wonder how much longer my husband Tom can go on, but each day is a new day and we continue his fight renewed.

Tom had 3/4 of his liver removed on June 16, 2009. He had a rough journey and was in the hospital for three weeks, with 6 weeks of IV antibotic therapy once he was at home. He had a drain tube for 7 1/2 months due to a bile leak. He had no chemo and no radiation post surgery because his margins were clean and they saw no need. He was cancer free, they said.

In November of 2009 he turned jaundiced. He was given 6 months to live. We are currently at 2 months and counting. But we came out KICKIN’ and decided to get 2nd and 3rd opinoins. His previous oncologist gave us NO hope. And I will not take NO for an answer.

Tom is currently undergoing radiation and his tumor markers are coming down as well as his bilirubin levels. I want to be able to go back to his previous oncologist and tell him to shove his 6 months where the sun doesn’t shine.

You can read more on Tom’s journey – under mlepp0416 on this site.

With this type cancer it’s hard to predict. We have Teddy who is a 4 1/2 year survivor. Tom is currently at his 22 month mark, and going for at least 22 more and longer.

As Kris said, don’t focus on wasting time worrying about death, focus on all the good things you have going. You have survived the surgery. You have two young children who need their Mommy. You have a family here that will support you every step of the way. Come back often and post your comments, your fears, your thoughts, your issues. We will listen and try to give you good advice.

Build memories for your children. KICK that cancer in the behind. Stay strong and focused.

Prayers from Wisconsin are coming your way!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret