New member / words of hope

[Lifes2short]

Hi all. I just found this site by clicking on a link from the uoaa.org site. Check out the "2007 Colondar" if you haven't already seen it - it's great!

I just saw a post from msjjvc (sorry if I got the name wrong). It sounds so much like my story. Unbelievable.

I was dx with stage III rectal cancer 12/05. Chemo/rad then surgery in March 2006. A CT scan in April showed mets to the liver. I was told I had months to a couple years to live. My oncologist gave me no hope other than some palliative relief and the possibility of extending my life by a few months if I go on Folfox/Avastin.

I was devastated - healthy, active 42 year old mom with two young children. I just couldn't believe that I could die that soon. I chose to spend the summer chemo free and enjoy my time with the kids. I'm not sorry that I did. It gave me a great chance to heal from surgery (and infection in rectal incision) and have some true quality time with my family. By fall I was sleeping more but I was still strong and it had become obvious that I'm in no hurry to die. I started looking harder for answers. I "happened" upon a new neighbor who just happened to be a surgeon who recently relocated from MD Anderson in Houston. He looked at my CTs and says I'm a candidate for resection. It's like an angel of hope has dropped into my life.

This looks like a great site with a whole lot of well-informed members. I'm glad to have found you all.

I'll end this long boring post with a message from my new favorite surgeon: "There is always hope. Don't let anyone tell you that there are no options." If I had just stayed put and trusted my oncologist (and the guy who gave me a second opinion) I would likely be dead soon. Now I have hope for years and even the remote possibility of cure. That's a nice feeling.

[Magnolia]

Welcome! I agree. Hope is great medicine. Hold on to it.

[Sweet Peg]

Welcome to the Colon Club! That is so true and something nobody should ever forget.... ALL THINGS ARE POSSIBLE!! I am one who believes that things happen for a reason and that neighbor was a messenger sent from God!! You go girl and keep fighting!!! There is so much hope out there now for Cancer....it isn't like it was years ago!

Hugsssssssss Peg

[missjv]

HI AND WELCOME,
GLAD YOUR A CANDIDATE FOR RESECTION OF LIVER METS. MY RESECTION WILL BE DEC 1 AT SLOAN KETTERING IN NEW YORK I HAVE TRAVELED HIGH AND LOW FOR HELP AND I WISH I WOULD HAVE GONE TO SLOAN AT 1ST DIAGNOSIS BUT WHO KNOWS WHAT THE HELL TO DO WHEN YOUR HIT WITH THAT CANCER BRICK IN THE FACE. I AM FEELING GREAT IM VERY OPTIMISTIC AND THE FACT I AM UNDERGOING CURATIVE SURGERY IS GREAT, AT 1ST I WAS TOLD NO HOPE, NOW IM TOLD SINCE MY LESIONS ARE SO SMALL .9 CM BEING THE LARGEST OF 3 AND I RESPONDED WELL TO CHEMO I HAVE NO LYMPH INVOLVMENT AND ALL OTHER AREAS OF BODY ARE CLEAR FROM THE BEAST I GOT A GOOD CHANCE OF NEVER SEEING THIS CRAP AGAIN SO I'LL TAKE IT. IM SURE SURGERY WILL NOT BE EASY BUT IT IS MY ONLY HOPE OF A CHANCE TO RAISE MY DAUGHTER WHO TURNS 8 TOMMORROW SO WHATEVER I HAVE TO GO THROUGH TO PROLONG MY LIFE WILL BE WORTH IT. MY INSURANCE SUCKS AND I HAD TO TAKE AN EQUITY LINE ON MY HOME TO PAY FOR MY SURGERY AND HOSPITAL STAY THAT THE INSURANCE DOESN'T COVER I THINK I AM PAYING LIKE 1/2 THE TOTAL BILL OUT OF POCKET BUT I HAVE NO CHOICE IT IS A SHAME STUFF IS SO EXPENSIVE AND WE HAVE TO TAKE DRASTIC MEASURES TO SAVE OUR LIVES, I JUST FEEL SORRY FOR THOSE WHO NEED HELP AND DON'T HAVE A HOME TO BORROW MONEY AGAINST OR ANY OTHER WAYS OF GETTING MONEY WHAT HAPPENS TO THEM? WELL YOU FOUND A GREAT SITE FOR SUPPORT AND THERE ARE MANY STAGE 4 SURVIVORS HERE LIKE ERIKA WHO HAS GONE ALMOST 6 YEARS CANCER FREE AFTER HER LIVER RESECTION, HOLLY 3 YEARS AND EILEEN WHO IS AROUND 2 YEARS SO THERE IS HOPE DON'T GIVE UP.

MISSJV

[Lifes2short]

Thanks all. Mssjv, I had to laugh reading some of your posts. It seems we've been down a very similar path. I, too, was told I'd die and had to find my own road. Your's sounds very promising. I have five mets with the largest being more than 7CM - thankfully they are all near the surface of my liver and not near major bood vessels.

You posted something about having chemo and Avastin the day after your port was placed - my oncologist wanted to do the same thing. I put the brakes on, they made me wait two weeks because I refused to begin the day after surgery. I'm very unpopular with my current oncologist, what my penchant for knowledge and making my own decisions with regard to my health. Imagine!

[missjv]

HI,
WELL IM VERY UNPOPULAR WITH MY 1ST ONCO WHO PUT ME ON PALLIATIVE CHEMO AND TOLD ME I WOULD BE ON IT UNTIL IT STOPPED WORKING THEN CANCER WOULD GROW TAKE OVER MY LIVER AND KILL ME, WELL I TOLD HER WERE TO STUFF HER CRAPPY TALK. MY METS WERE SMALL TO START WITH AND MINE ARE SAME AS YOUR ON THE SURFACE OF LIVER NOT IMBEDDED TUMORS AND NOT CLOSE TO ANY VESSELS I WANT TO GO BACK TO SEE THAT B..CH IN 5 YEARS AND SHOW HER IM NOT DEAD. I DID HAVE CHEMO STARTED DAY AFTER PORT PLACEMENT ON MY REQUEST CAUSE I WANTED TO GET STARTED BUT I WAS NOT SUPPOSED TO HAVE AVASTIN AND I GOT IT LUCKILY I HAD NO PROBLEMS THAT AGAIN WAS MY 1ST ONCO SHE NEEDS TO RETIRE BEFORE SHE KILLS MORE PEOPLE. IM LUCKY I WENT TO SLOAN AND AM ABLE TO HAVE CURATIVE SURGERY IT IS KIND OF HARD TO HEAR YOUR GOING TO DIE IN 2 YEARS WHEN YOU DON'T EVEN FEEL SICK I DID NOT HAVE A LARGE COLON CANCER JUST A SMALL POLYP REMOVED BY POLYPECTOMY WITH CLEAR MARGINS AND NO LYMPH INVOLVMENT SO IM VERY ENCOURAGED WITH MY LATEST NEWS WHICH DOC TOLD ME HE WOULD SEE ME IN 10 YEARS UNLESS I GOT RUN OVER BY A BIG TRUCK OR SOMETHING SO IM GLAD.

HAPPY HALLOWEEN OFF TO TRICK OR TREAT WITH THE KID SHE IS GETTING ANXIOUS.

MISSJV

[MissKim]

Greetings. I discovered this sight a couple of weeks ago and decided to join today. I have found all of your notes so encouraging. I was diagnosed with stage IV CC in June of 2003 at the age of 38. The doctors kept saying that they didn't see this in someone my age. I felt like a freak of nature or something. However, I have hung in there. I have been through the following chemotherapies: FOLFOX, FOLFIRI with Avastin, FOLFOX with Avastin, and currently Camptosar with Erbitux. I am interested in what all of you are doing as complentary therapies. What do you do for stress reduction? I try to eat well and get proper sleep. However, sometimes life is crazy and I don't take as good of care of myself as I need to. I would love some dialogue with all of you. Miss Kim

[Lifes2short]

Welcome MissKim,
Is your cancer operable at all? Where are your mets? It sounds like you've been on long term chemo - what is your prognosis? So many questions.

[MissKim]

According to my PET/CT scan in June I had numerous areas in the lungs (all under 1mm) and 6 -7 lymph nodes in my abdomin that show disease activity. My August PET/CT showed minimal activity. I had a PET/CT a few days ago and I meet with my Dr. today to hear the results. Needless to say -- this is all very nerveracking. I live in SE Idaho and noticed that "lifes2short" posted from Salt Lake City. I had all of my surgeries at the U of Utah hospital the summer of 2003. I was encouraged that a Dr. from MD Anderson has moved to the SLC area because I would definitely make the trip to SLC for a second opinion. What type of Dr. is your neighbor (onc., surgeon, etc.?)?

Also, I am 42, married with 3 young children (11, 9, and 5) and had always considered myself in good health until my diagnosis. Life just slams people with some rough stuff at times. Cancer reallys stinks!

[Lifes2short]

My new doc is a surgeon. He's really a sweet guy and is turning out to be a great neighbor. We all had a little neighborhood Halloween party last night and I had a chance to get to know him and his wife - very odd to be striking up a friendship with the guy who'll likely do my surgery. But we live in a very friendly neighborhood and our kids are similar in ages, so it just makes sense that we'll all become friends. I am also in the process of changing to a new Oncologist - I've been very disappointed with the person I've been seeing.

Details on my doc in your PM

[janelle]

It is great to read about survivors with positive attitudes! My mom usually has one, but since her diagnosis of Stage IV and starting chemo 2 wks later, she doesn't seem like herself. She's exhausted, can't get comfortable to sleep with massive swelling from ?? who knows what? the many swollen lymph nodes in her abdomen? just plain fact of cancer? lymph nodes squeezing vessels? I'm in Calif and she's in Texas. Usually we talk on the phone every day. Since I flew back to Calif from seeing her, I've barely gotten to talk with her. Dad takes the calls, and Mom's usually resting or trying to sleep. I'm very scared because she doesn't have her usual passion for life -- right when it seems she probably needs it the most. She hasn't even gone outside since the diagnosis (except to go to chemo), when in the past she religiously got outside at the crack of dawn every morning to go racewalking around the neighborhood.

You're all so positive -- how can I help my mom get this attitude back?

[Magnolia]

Give her some time. It's new yet. My favorite book, and I tell everyone about this, is "The Anatomy of Hope" by Jerome Groopman. He's an oncologist who uses science to prove how hope helps the body heal.

Maybe having contact with other Stage IV survivors would help your mom. Stage IV used to be an automatic death sentence. Many people still do die from it. Certianly in my oncology nursing days the outlook was bleak. She may not really know or believe how much more hopeful things are now. Survival, while not universal, is much more common in Stage IV than it was even 5 years ago. There's so much room for optimism is all stages of colon cancer these days. All of the Stage IV survivors on this board who were diagnosed more than 5 years ago really did beat the odds. The odds are better now and getting better all the time. Every year of survival makes long term survival, and cure, more likely. Keep all that in mind, and pass it on to your mom as soon as she seems receptive.

I'll keep you all in my prayers.

[missjv]

hi janelle,
give your mom time then tell her to snap out of it! the better she is mentally and physically the better she will tolerate her treatments, im also stage 4 but on the 3rd day after my diagnosis i snapped out of my pity party and started to fight, eat better, excercise more and i feel great! i am scheduled for liver surgery soon and after that a little more chemo then i should be and will be fine. i know your mom feels like crap right now but she has to get a postivive attitude and get the best treatment possible. she needs to also if she hasn't already get another opinion if she is in texas she needs to go to md anderson they are one of the tops in the country for cancer care. if she even gets out and walks 30 minutes a day it will help with the fatigue of the chemo i know it is hard for her i sat in chair and cried my 1st chemo treatment cause i was in a room full of people that didn't look so hot and i was by far the youngest one in there and i was so depressed but as time went on and chemo has had great affects on my cancer i go to chemo and talk with everyone and try to make a good time out of it. also make sure your mom is drinking lots of water before during and after chemo to flush her system, my nurse told me 70% of the chemo goes to the cancer the rest stays in your system and you need to get rid of it so water water water. good luck

missjv

[Magnolia]

You might want to consider the possibility that your mom may be depressed. She may need treatment for that before she can move on to a better frame of mind. It may be a simple matter of attitude chage, but then again it may be a matter of medication and therapy.

[margotmagoo]

I just read your post and am so glad that you have dismissed the negativity your doc presented you. My docs told me that being positive and having good mental health was just as important to recovery. I was diagnosed with stage IIIc just a month after you (1/06...Happy New Year!) just after my 40th birthday. I have a friend who was diagnosed 3 years ago and is now fighting a recurrance. It is ironic because I couldn't imagine going through what he was going through and now I'm going through it. Receiving the news that you have cancer is devastating enough without your doc telling you there is no hope...YOU ARE A FIGHTER....good for you for not listening! I allowed myself one day of feeling doom before I rose up and told my cancer it was not going to take me out. I also had a great surgeon who never let me feel like there was no hope. I am glad you found a surgeon who is lifting you up!