Diagnosed 2/10/07, stage IV, getting married 5/5/07

[cindy31]

Hi Everyone!
I'm so happy to know that there's a site like this get support from others who really know what it's like to have colon cancer. I thought it was extremely rare for someone who's 31 to have colon cancer, but from what I read it's not as rare as I thought.

My life was turned upside down a month ago when I was diagnosed with Stage IV CC. Over a month ago my biggest concern was checking off things to get done for my wedding and what gifts to register for. Who knew those things would become sooooooo unimportant, after I found out about my cancer. I was suppose to start my new life with my fiancee, get hitched, have children, etc. My world came crashing down.

In October, I noticed that I had blood in my stool so I went to see the doctor. He said that it was hemorrhoids. Unfortunately, I was having a lot of bowel problems even with the medication he gave me, like difficulty having bowel movements, gas, bloatedness, mucous in my stool, etc. So I went back to him in January, and he referred me to a proctologist. At that time, I had a scope put into me, and the doctor noticed the mucous, but he could only see 10 cm into me. So he referred me to get a colonoscopy done on Feb. 10, 2007. When I went in for the colonoscopy,
I found out that I had colon cancer. I was immediately admitted into the hospital because a large tumor was found in the sigmoid region of my large intestine (20 cm from my rectum). I was devastated, but I hoped the cancer was localized. On Feb. 11, my surgeon took a look at my CAT scan and told me that it looks like the colon cancer spread to my liver and thus my lymph nodes. Once again, the news was devastating, but I remained hopeful. On Feb. 12, I went into surgery to remove
the tumor in my colon, but the tumors on my liver were too large and there were too many for them to be resected. My oncologist came in to see me the next day to tell me that my cancer was incurable and that I had an average of 6-20 months to live. At that point I lost all hope, and did not want to go on with the wedding or burden anyone. I tried and tried to remain hopeful, but the oncologist was very pessimistic and gave no hope as she answered a personal phone call while breaking the news to me and she told me that she was very busy and did not have time to answer all the questions my family had. After a couple days of pulling myself together, I decided I needed to fight this cancer head on regardless of the oncologist’s prognosis.

I had to wait 3 and half weeks to heal from my surgery before I could start my chemo treatments. In the meantime, I met with 4 other oncologist who gave me more hope than the first one. I'm also seeing Dr. Kemeny in NY to see if I'll be a candidate for HAI and I have another appointment with another oncologist in a couple weeks. My family and I are not giving up and we're making sure we know what my options are in fighting off this horrible disease.

There is no doubt, that what I’m facing is serious, but hearing about all the successes on this site gives me so much hope. My age is a very big plus b/c I can take on aggressive chemo and my spirits are getting stronger each day. I just had my first round of chemo on March 7 and so far I’m doing okay. My major battle now is the pain in my abdominal area especially my liver, but its controlled mostly with vicodin and morphine. I know the chemo is accumulative, so thus it will get harder with time, but I have so much to live for. Those of you who have gone through Chemo with 5-Fu, Avastin, Folfox, please let me know how you did, how you felt, did your hair fall out, could you still work?

I'm going to still get married because I have the most incredible man in my life who still wants to go through with the wedding despite my condition. I love Jared with all my heart and couldn't ask for a better husband to be! I have much more strength each day to battle this cancer. Please visit my website www.supportcindy.org if you'd like to see what an awesome job my best friend and brother did to uplift my spirits. You can also check out my engagement pics on this site. I took my engagement pics 3 weeks after surgery, so I'm crazy but I'm very proud of them b/c I had to climb rocks and walk down and up stairs.

I have a great support system, but at this point think I need to talk to others facing what I'm facing to give me more hope for my sanity. Thanks for reading this long message, but understand that I'm a newbie with a lot to say. I promise to try to make my future messages more brief! Can't wait to hear from anyone! LOL, Cindy

[myra]

What a story. I'm still in shock over the behavior of your doctor. Anyway, welcome to the site. You will find a LOT of hope and support here.

I am 41, and I have two small children. The doctor called me yesterday with the bad news. I have a malignant 5cm tumor on my sigmoid colon. Next week I will meet with a surgeon who will exam me again and give me more information. I'm anxious, and very nervous. My husband, family and friends are very supportive, but I am still very very scared.

I got a lot of strength from your e-mail Cindy, thank you. You have given me the courage to fight, no matter what my diagnosis.

I noticed you live in Anaheim, I live in Murrieta, what hospital did you receive your surgery, and did you like it?

Good luck in your fight, please let me know of your progess, hope to talk to you soon

[momof2crazyboyz]

Cindy -- what a great website -- you have a huge support system... I will say a pray for you. I had Folfox therapy and during that time -- I did not lose my period or my hair....the biggest side effect for me was the tingling and numbness in my hands and feet. The 6 months went fast for me.. Like you I had a great support system. I am 36, have a wonderful husband, 2 small boys (2,5) and a big family.. Never say no to help -- reach out if you need help...best of luck -- keep fighting... Cathy

[NICK THE BRIT]

Cindy, ive just read your website. Very impressive. It sounds as though you have a good base of people round you, which you need at a time like this. By carrying on with the wedding you are showing a great deal of strength which is great. Try to stay as positive and upbeat as you can. I will say a prayer for you.

Regards
Nick

[Sweet Peg]

Welcome to the Colon Club Cindy! Sounds like you are one strong lady!! Good for you! You so did the RIGHT thing by going to other oncologists! It just burns me so to hear about these Oncologists with attitudes like yours. With all the new technology out there not to mention "ALL THINGS ARE POSSIBLE!"

You are off to the races with the right attitude girl! Positive attitude and lots of FAITH and PRAYERS are the ticket. I am a 2 year Stage IIIa survivor and I didn't lose my hair either. It did thin some, but didn't lose it. I worked full time while doing my Chemo, but I was a Secretary/Receptionist. It all depends on how you react to the Chemo and what type job you have. You are right about accumulating effects from the Chemo, but each person is different. Just try to take one day at a time, one treatment at a time. Try to keep a positive attitude, smile, laugh and listen to your body. If it says you are tired, sleep....don't push yourself too hard. The last tip is drink LOTS OF WATER and tell your Oncologist about any problems or changes that concern you.

You will have tons of support here so come back often! We will all be right here for you and be praying!! Now go kick some Cancer butt girl!!!!

HUGSSSSSSSSSSS Peg

[chachiearrrings]

DEAR CINDY,
STAY AS POSITVE AS YOU ARE NOW! I WAS DIAGNOSED STAGE IV WITH METS TO LIVER AND LYMPH NODES 8/05 AND I AM STILL HERE TO TALK ABOUT IT. DID THE SAME CHEMO FOR SIX MONTHS THEN HAD LIVER RESECTION AND THREE MORE MONTHS OF CHEMO. I AM IN THE MIDDLE OF A RECURRENCE SMALL LESION ON THE LIVER AND THANKFULLY THE PET SCAN SHOWS NO EVIDENCE ANYWHERE ELSE, BUT WE ARE TREATING IT WITH FULFURY CHEMO THIS TIME. DR SAYS THIS MAY BE CHRONIC CONDITION WITH ME. MY ONLY ADVICE IS TO GET ON WITH THE WEDDING PLANS!! AFTERALL WE ARE LIVING WITH CANCER NOT DYING FROM IT. THERE WILL ALWAYS BE HOPE & NEW TREATMENTS! SO GET PLENTY OF REST AND TAKE EACH DAY AS IT COMES. WE WILL DEFEAT THE BEAST SOONER OR LATER!

[klryder02]

Cindy-

Your engagement pics are fabulous! I got married a year and a half ago..and still love looking at all of that engagement/wedding stuff.

I hope you have a a wonderful wedding..and it allows you to forget what is going on..at least for one day!

I am a teacher..and I have found that doing my teacher things allow me to escape from my personal problems. I know all the wedding activity..before and after the wedding will do the same thing.

Don't forget to post wedding pics after the wedding!

I have stage IV (movement to the lymph nodes) and I am lucky enough to not lose my hair and I go to work the very next day.

The big thing I have a problem is with putting weight back on. You look like a similar build to me. Have you lost much weight since all this has happened?

[Tammy Figg]

Hi, I just read your information, and what a story. You are very strong. I like you was diagnosed before I got married, in fact it was 6 weeks before the wedding with Stage III Rectal Cancer. Having the wedding will help you, as it will take your mind of what is going on at this time and give you something to look forward to, atleast it did for me.

Your future husband, as is my now husband, are people that were sent to us, to help us on this journey.

I would love to lend a supporting ear should you ever need it.

Tammy Figg
www.figgtree.com

[missjv]

hi cindy,
i agree with the last post go ahead with your plans to be married and anything else you had planned before this diagnosis. i was diagnosed stage 4 june of 06 at age 39 and also had a doctor who treated me as a lost cause. i got depressed, then i got angry and started doing research on stage 4 treatments and i ended up at sloan kettering in new york, i live in florida but it is well worth the trips. well as of now i show no evidence of disease. i went through 7 treatments of folfox with avastin. i had a great response and my liver lesions shrunk to the point that they did not show on pet scan. so that was my oppurtunity to have liver resection surgery i had what was left of the cancer on my liver removed surgically in dec 06 and am now half way through chemo of 5fu, cpt11. i am doing great i had a clean post surgery 3 month scan that said my liver has grown back but there is no cancer on it. i also have the hepatic artery pump i have received 2 treatments to it so far. it is not bad having the pump and you don't even feel anything when chemo is givin through the pump cause it goes to the liver not throughout the body and getting the treatments to the pump is painless and quick it takes longer to mix the drug and wait for that then it does the treatment. at my diagnosis i was in the process of building a new home that i had worked my butt into the ground to save money for years to even get started and i put it on hold because i was scared of what the future will bring. well about 6 weeks ago i decided back on with the plans i am not going to let this cancer control my life and im not going to sit around and worry if i will have a recurrance i figure i have done everything i can to treat the cancer i have had chemo, surgery, more chemo and i have decided it is what it is and thats the way it is. i have an 8 year old little girl to raise so i am continuing with my life the way it was before cancer yes it is different of course but it can be done. besides none of us know when our time is up anyways. a friend of mine left home to go to work 2 miles from her home and was killed in a car accident so im sure if she knew she was going to die that day she wouldn't have got into her car. we do not have control over death but we have control over our lives while we are living and don't stop living because of cancer diagnosis go ahead with your plans i looked at your website and your photos you are a beautiful girl with a big smile keep smiling i know it is hard at first but there are so many treatment options available these days lots can be done. if you are going to see dr kemeny in new york try to meet with a liver surgeon while you are there. they can do so many treatments to the liver like rfa, cryosurgery, the pump, resection, alcohol ablation and others i probably don't know about. everyone there is so nice and they are top notch when it comes to your treatments i fly up once a month from florida to see dr kemeny and it is not a big deal can't find a better place then nyc i see doc then shop lately when i go i have been on a mission to find the best pizza in the city so even though i go to see a cancer doctor me and my best friend who goes with me every month also have some fun while we are there. and one more thing do not read any statistics you find on stage 4 disease they are not current, they do not reflect new treatments that are now available. you are not a statistic you are an individual and just because some study was done does not mean everyone with stage 4 does not have a chance. look back through this board and you will see people like erika, holly, anita, etl, christine, rodney all had stage 4 with mets to liver and all are still here and so far all are no evidence of disease erika has gone 6 years now and she had 60% of her liver removed in her early twenties. sorry to write a small novel but i had alot to say. and as far as the chemo we all react differntly, i luckily did not have any problems with the folfox except a little numbness in fingers and toes and my hair did thin out some but it never fell out. when you go to chemo bring water with you and drink alot you will have to get up an pee every ten minutes but keep drinking. the chemo nurses will give you advice as well. im sure you will do fine chemo sounds scarier then it really is but i learned the hard way because i had a bad attitude at the beginning of my 1st rounds of chemo because i was mad at the world and feeling pity for my poor self but it did not help and luckily i snapped out of it and am making the best of it. good luck!

missjv

[eitter]

Welcome Cindy!

Great website! Having support is key! I have an AWESOME Friend that put up a website for me too! I sometimes have to go to my own wesbite to remember all the love I have around me!

You are not alone here!!!! And you can beat this!

I also went to NY, are you going to Sloan Kettering?

God Bless You!

[cindy31]

Hi Again! Reading all your replies today felt like opening Christmas presents, because it was exciting to hear what everyone had to say. Not to discredit all the uplifting words everyone has shared with me, but hearing from all of you feels so much more uplifting b/c you're going through what I;m going through! I feel more hopeful than I ever felt since Feb. 10, 2007. Thank you so much for taking the time to answer my questions and for all the words of support and encouragement! I was so touched! Its really nice to have something to look forward to reading each night when I have a hard time getting to sleep. I can't seem to get to sleep on my own anymore. It almost feels like my body needs Ativan to get to sleep.

Did anyone have tenderness or distension in the midsection after each meal? I've lost 10 pounds since I was diagnosed b/c I still feel so uncomfortable after meals, even after small meals sometimes. Any remedies??? I know I need to eat to keep up my strength and not look anorexic especially for my wedding, but I'm sick of feeling so uncomfortable. I also know I need to drink lots of water but I have so much pressure around my midsection when I do. Maybe its just me b/c I always struggled with digestion (gas, bloatedness, GERD). I haven't read much about anyone having pain around the areas where the cancer metastasized...if you do or did, how many rounds of chemo does it take for the pain to subside?

I have to reschedule going to Sloan-Kettering b/c my docs suggested I not go right after a chemo treatment but rather right before chemo treatment. I'll have to see what's available. missjv, it was so nice to know of someone who has the HAI pump. Sounds like its doing wonders. I just hope my insurance will cover it. If my Kaiser HMO insurance doesn't, I'd like to know what the cost is if you wouldn't mind sharing that with me.

Thank you from the bottom of my heart to all of those who uplifted my spirits tonight! Lots of love to all of you! Cindy

[missjv]

hi cindy,
i looked on my hospital bill and the pump itself is $4300.00 and also of course there were the surgeon charges which were like $24,000.00 for the liver rescetion but my insurance covered all that. if you can get to sloan and see dr kemeny about the pump it is worth the trip. i met a man at my docs office here in florida who had pump put in 7 years ago because both lobes of his liver were covered in tumors, he did not have resection just the pump chemo which he did as long as he could without causing liver damage and also systemic chemo for over 1 year which i know sounds horrible but to this day he has been cancer free and he said he was given no chance they didn't even suggest regular chemo for him because they thought why bother. he went to sloan and got another opinion and pump and all is well. he was at docs office on a yearly visit to check his bloodwork. he said the chemo was rough for a year but he got through it and was going to play golf after leaving doc appt he was 52 he said at diagnosis. thats why i was stressing for you not to read the statistics for stage 4 colon cancer cause they aren't accurate anymore. i wish more stories were on the net like all the survivors of this disease. the colon cancer aliance website has survivor stories. one lady is going on 13 years now another 6 years that is also a good website for info. also when you see your docs request copies of all your records so you can read them at home i found that it makes it easier to understand everything and also you will have alot more questions to ask by reading the record the next time you visit the doc. as far as the stomach problems they will get better i had the worst gas after surgery and bloating i looked like i was carrying triplets. it will all get back to normal it took me about 2 months to be able to eat all the stuff i did before. try to stay on a low reside diet and watch the gassy foods i know it is hard cause all the good stuff causes gas i remember i had a bad headache and i thought maybe some caffine will help so i drank a can of coke and boy did i regret that i thought i was going to explode but it does get better it just takes time for your guts to adjust i had my whole sigmoid section of colon removed in december and as of now nothing bothers me and have had gained back almost all of the 23 pounds i lost after surgery so i do not resemble a twig anymore, also i found that a drink made by dannon yogurt people really helps me it is called dan active it comes in a small bottle it is usually in a 6 or 8 pack in the yogurt section of the store and it comes in a few good flavors. i also found that on chemo days i have a hard time sleeping at night and i get cranky for a few days doc gave me some xanax and it helps i don't know what causes the bad mood after chemo days it feels like a bout of pms for some reason. well keep your chin up and there are alot of things that can be done for the liver as far as treatments go and i hope you canned your original onco who answered her phone while telling you a bunch of crap it is a shame but some docs just don't care i think they are just in it for the money and the cancer is a big money maker for them mine was just going to keep me on palliative chemo until who knows when or as she put it when it stops working she didn't care i had an 8 year old child at home but i got new docs and alot of hope and a good prognosis. there are things that can be done it is just a matter of getting yourself to the docs that will do them.


missjv

[northern lights]

Your pictures are gorgeous!! You have everything to live for so fight with everything you have. I was on Folfox for 6 months and my hair only thinned. Most people did not even know I was sick when I was being treated. I only went out on good days and just stayed home and preserved strength on the treatment days. The best part for you is it looks like you have a great support system.

You can get through this. Develop a good relationship with the doctor you choose and ask all the questions you have. You have a great future to look forward to, so plan it, dream about it and then make it happen.

Sharon

[missjv]

hi cindy,
me again. go to lance armstrongs live strong website they have alot of good info on alot of different things that we go through after getting a cancer diagnosis. also look at his story he had cancer that traveled all the way to his brain and other parts of his body and look at him today 10 years later he survived metastatic cancer it can be done even when your told it can't be done.


missjv

[lucky1970]

Dear Cindy,

I was diagnosed at age 33 on April 1st, 2004 with Stage III colon cancer. I was sick for three months, making weekly visits to my family doctor, sobbing from the pain in my belly that kept me up night after night. She never showed much concern, never ordered any tests even when I dropped twenty pounds off an already slender frame within a 4 week period. I simply stopped eating because nothing would pass through me. My doctor and my husband told me it was in my head, it was constipation due to stress. I took laxatives and stool softeners with little results. Finally my Doc put me on Meds for IBS which was the only smart thing she did for me because that night the pain tore through me and I started to vomit so that my husband finally gave in and took me to the emergency room.

After diagnosis and surgery, the first words my Oncologist (Dr. S)said to me were "I wish I had better news for you...". This really set the tone with my relationship with him. The only reason I stayed with this particular group is that I had a phone consult with a doc from Stanford University that ran clinical trials for CC drugs. He had heard of Dr. S and said he was the best of the best and that I was in excellent hands. I let Dr. S treat me, but he was horribly negative, never had an upbeat thing to say to me. I was so depressed that I actually stopped going to treatment for 4 weeks because the whole thing seemed so hopeless to me. My husband was not supportive at all and moved out of the house because he could stand to deal with my illness. My children(7 and 13) were in shock. My live in Mother-in-Law dropped me off and picked me up from chemo. I went to all consults and scans and tests alone.

I think the turning point for me came when my sister sent me the first Colonder Club Calender. Here were 12 women with situations like mine, some better off, some worse. There they were, telling their stories, and moving on with their lives. The story about Erika Kratzer really inspired me and I think it will you too as her diagnosis was similar to yours. Her story proves that no situation is hopeless and people can survive stage III and IV and move on with their lives! With your amazing support system I have no doubt that you will too!

I am coming up on my 3 year anniversay and as I reflect back to my experience, I realize that my life has changed for the better because of it. I filed for divorce last July. I changed career paths and now do something I love and help people in the process. I have ditched those in my life that were not genuine, compassionate, truly good people. I laugh harder and love stronger. I am, for the first time, truly content with my life.

Dr. S has since had his own bout with cancer and his bedside manner has improved greatly. He is much more sensitive when he speaks and I now actually consider him a friend! He is in remission and doing well! I ran into my family doc who misdiagnosed me for three months at the health club. I approached her in front of a group in the locker room and said remember me? Your crazy, deppressed, constipated patient? Well, lets just say I let her have it and shamed her to the point were she quitely gathered her things and left and I never saw her there again. My point being, just because you have an MD doesn't mean you are all knowing. I think ALOT of Doctors have the God complex and could stand to be brought down a notch or two. When you beat this thing pay Dr. 6-20 months a visit and blow him a raspberry for all of us!!! You are in my thoughts and prayers and my boys and I are making paper cranes for you tonight to help your wish come true! Love, Janet