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Hi! I'm new and really scared!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Hello everyone! My name is Donna and I am married with 4 beautiful children, and will be 44 next month. I was diagnosed last week with Stage 4 Colon Cancer with a large mass to the liver. This is really horrifying, as I haven't seen my gyno for a couple years, but she said I didn't need any kind of colonoscopy till I was 50.

I had no signs or symptoms, no pain, constipation or blood in my urine or stools, I felt fine, except noticed a hardness in the stomach area with some bloatness, and went to the ER room for it, and was transferred to the James Cancer Research Center at OSU, where 5 days of tests went on, and they said there would be no reason to have surgery, since I do have an obstruction in my colon, but since I'm still passing stuff through, they don't see any reason to take anything out and put a colonostemy bag on me, what they want to do is start me on Chemo on Feb 2, and shrink the tumors. I am so scared of chemo it isn't funny, and I started reading online all these statistics and rates and I am in tears now, because I have a positive attitude, and still feel fine, but don't want to leave my kids yet, I want to fight hard for them, my mother died when I was 16 of leukemia, my father died 4 years later of liver cancer, I don't want my kids to go through life without a mom like me, this is so scary, but I am keeping a brave front.

The doctors said this is definitely treatable for me, with my attitude, age and health and are very encouraging and really do want what's best for me, but I'd love to hear some positive stories from anyone who went through this to give me more hope that I won't die next month or sooner.. what can I expect from the chemo? the doctors said it wasn't like how it was years ago, and they are so advanced now, that I'd be surprised, but I'd love to hear from other people to give me more hope, because the stuff on the internet will literally scare the crap out of someone. I know I'm terminal, but after chemo and treatments, will you ever have a day where you will feel like yourself again? I need some cancer friends, I just don't know who to talk too.

Thanks everyone for letting me talk!

~Donna

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

hello donna,welcome to the best site my mom found for me.i too am 44 with colorectal cancer diagnosed in sept.08. have been thru 5 wks of radiation and chemo pills{xeloda)was pretty bad but i made it.after the tumor shrunk that was in my rectum i had surgery on dec.30 with knowing i was going to have a temporary iliostomy bag ,it has been awful but i too have 2 children,husband and horses to live for so i just take one day at a time and pray.i am due to have my little friend the bag removed on feb.4 and surgen say preventive chemo 3 doses in 4 months of which i am scared to death.so, hang in there and we are all here for each other and again welcome and God bless johnnybegood ~Debra

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Welcome to this site Donna.....it is one of the best for helping people cope with the
aspects of having colon CA. It is never one we want to have to be part of but since
we are faced with this, it is the greatest for hearing other people's experiences and
finding information about the journey.
First, don't read the statistics.....they will indeed scare the pants off you.....there
are many people on this site who have had Stage 4 and are still going strong and are
shraing their stories.
You will find that everyone reacts to the chemo treatments differently....some have
problems and some don't. I personally was able to get through all the treatments with
manageable side effects. I live alone and was able to drive myself back and forth to
treatment days. Probably won't cover all the effects but......oxaliplatin will make
you sensitive to anything cold to drink or touch so you have to forget about ice and
remember to wear gloves when going into the refrigerator and be sure and wear scarves
hats and gloves outside and even cover your mouth and nose during this harsh winter
weather. Oxa. will also cause some tingling and numbness in feet and hands which will
usually go away after treatment as does the cold sensitivity. 5-FU can cause redness
and senstivie areas on fingers so if you do a lot of work with your hands you need
to be extra gentle with them. Avastin can cause nose bleeds and nasty Kleenex moments.
I am sure others will share their experiences with the chemo. My fear of it was more
real than any actual side effects. I found that talking to the nurses and my oncologist
helps a lot if I was having problems.
Also, it helps to find cancer support groups and maybe since you are at a comprehensive
cancer ceter, they may have some going or know where to go. It sounds like you live in
Columbus, Ohio: I live in Cincinnati and we have a nonprofit group called the Wellness
Center here that is for cancer patients and their families; they are wonderful. All
the programs are free and there is everything from yoga and tai chi to cooking classes
for wellness, talks by physicians on various aspects, and lots of fun at jokefest nights
and an annual ladies night out which is a sleep over at the beautiful center with breakfast
the next morning. Hope this all helps some and I am sure others will share their
stories with you.
I was a Stage II with no lymph node involvement in 2004; in 2008 it returned to my liver
and I had a resection last July and went through 4 treatments of FOLFOX before surgery
and eight afterwards and am now watiting to get results from my blood check and first CT
scan after tending treatment in Dec. It does sometimes become an emotional roller coaster
ride waiting for the latest news so expect that you will and are already erxperiencing
that. Meditation, yoga, tai chi, support groups and when needed, anti-depressants, are
sources of help for all the anxiety.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Donna I am not going to write a lot right now....just know that there are lots and lots of us here for you. You need some time to absorb all this rotten news.....You will NOt die in the next month....they told me I would die and that was three years ago and lots of others too.

I know chemo just feels and sounds so scarey but it is do-able it really is and you don't have to be particularly brave. You just get up each day and do that little bit.

I'll be talking to you Donna

Best wishes and huge hugs,
Maggie

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Hi Donna and welcome. I was 43 at diagnosis August 2007 and I'm stage 4 with inoperable mets to the liver and now distance lymphnode involvement. I'm still undergoing treatment and resume chemo next week. Married, 3 sons no family history, no symptoms....it really is scary, I know.

You are in a good place for treatment and there are quite a good number of treatments available to you. Starting chemo quickly is a good option. I needed surgery first so I had to heal from that before I could begin chemo. I had surgery last week for my liver that was unsuccessful, so again, I must heal before I restart chemo. Trust me, the waiting and anticipation of chemo is almost worse than the reality. I HATE chemo....but I can think of worse things. I was able to work full time for the first year (minus time for 2 surgeries) and then part time for several months. Although I am now unable to work, I have been very fortunate. Many work through treatment with no troubles, many quit work immediately to concentrate on healing and wellness, many drop hours and work part time...My point is that chemo sucks but it won't ruin your life. It will change your life. You will discover what we call a 'new normal'.

You will be making many difficult choices for awhile. Don't beat yourself up for the mistakes you'll make....there will be a lot of them, LOL. One of the first decisions you'll make is the attitude you'll have through this journey. You will hear many people tell you that it's ok to be angry, sad, scared...and that is true. It is ok to feel whatever emotions you need to feel. It is also ok to have FUN. That is the only rule I have given myself and it has helped me (and especially helped my family)...I have FUN every. single. day. No exceptions. If you check out my profile here (just click on my name) you can read my story and see pics under the "Expressions" tab. I got bad news last week after my liver resection which had to be aborted, but you'll see me having fun at the hospital...Sponge Bob pj's, big goofy earrings (they distract from my hairloss...lol), I am having my own 'fun' hospital gowns made now so I won't ever have to wear their ugly ones again, I pole-danced with my IV, I laughed and told jokes and was up and down the halls visiting other patients. during chemo I decorate my IV pole (and sometimes other peoples..hehe) for the season and/or holiday. It helps ME to feel better, it helps my family to live with my diagnosis, and it makes life valuable to me. That is my coping mechanism. You will find yours, too.

Stage 4 means (to me) that I've had to learn to live with canSer, because I don't intend to die from it! I don't fit in the demographic for the statistics that you found online and neither do you. Screw the stats! You ARE NOT a stat! This is very treatable and you will find your path through it all. It's not always easy, it's not always fun, but you will find a great support system here. Come often, ask questions, go to the chat and visit us, private message me if I can help.

I'm also in Ohio (near the Indiana/Michigan line) and have a son at OSU. I even looked at going to The James for treatment and found many wonderful things there. You are in good hands. Find the right oncology for you, docs that you are confident in, and forge on. I really hope this helps you some.

Kimby

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Thank you both for the welcome, it is indeed overwhelming, it's only been a week since finding out, and I have a mediport placed, which the soreness is just starting to go away, I actually went to the mall yesterday and had a great day with the family where I felt like myself, my kids even forgot about my cancer, it's been very hard on them. I was reading some stories where people actually did live for over 8 years when they first heard they had Stage 4 cancer, I wish I knew where Stage 1, 2 and 3 went! my heart, lungs and chest are clear, my bone scan turned out great, I am anemic, so they gave me a blood transfusion, 2 units of blood, which brought my iron back up, I asked the nurse before they gave it to me, if they checked out if this blood was from an Italian, since I am Italian/Irish.. haha.. they just cracked up...

Those side effects sounds horrible.. I can't have anything cold? I'm not sure till Feb 2 what they're going to be giving me. I actually live in Middleport, Ohio, about 2 hours from Columbus, where my husband will be driving me back and forth to the chemo treatments. The oncologist said some people sail right through chemo, no problems, it is all on the individual, I think I"m having one of those fanny packs as well...it is a Comprehensive Cancer Center, not sure what that means, but alot of people said The James was very good.. I just don't want to go downhill from here. I am keeping my spirits, and yes, I definitely have to stay off the internet, but was nice to hear some people are still around after 10 years being in Stage 4.. I hope to be one of those.

Wow.. I can't believe you drove back and forth to your chemo treatments, I thought all I was going to be doing was puking, and they want me to make sure my dogs stay outside, that I stay away from crowds, wear a germ mask in public and all that, I feel like I wont be able to work now through my chemo treatments, (I work as a rehab secretary in a Wellness Center) they make it sound I have to be housebound away from all the germs, which I know I am having cells killed and rebuilding my immune system, but wow.. I wonder how long they want me to be doing that. They said I would be on a 3 month cycle of chemo, I don't even know what cycles are. All my questions I guess will be answered by the doctor I am to see for the treatment on Feb 2.

This forum seems awesome with some really great people, I really needed to talk to people like you, thanks so much

~Donna

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Guess I have to say a little about my experience with germs. I have a dog
and certainly didn't stay away from her; I have to feed her, play with her,
let her out and got no germs......was not suggested to me to wear a mask
altho they do advise staying out of crowds but I went to the ladies night
out with a bunch of other cancer patients and nothing happened. Went to church
and other groups without a mask. I would
say that if you live with children who go to school you are more likely
to pick up colds, flu etc. than any other way since they are exposed to
other children in school. Washing hands a lot would seem to be more
effective.

By the way, they can give you anti-nausea medication either with the treatment
and/ or in pill form so that does not have to be a problem.

Anyway, hope some of this helps.

Barbara

sheri22
Posts: 278
Joined: Jan 2009

I WAS DIAG W/ STAGEfour colon ca this past thurs had my first chemo today
I had stage 2 colon ca/ two yrs ago, had chemo but it wasnt as aggressive as this chemo is I did have colon surgery done then also that chemo didnt make me sick hopefully the chemo that we are going thru now will be fine also my maine thing that helped me befor is mdont look up those side effects once you start chemo haqve a positive attitude go on with your life and listen to your dr,
yes I am scared this time too. it has spread And I am also scared too death but I also have a great husband a 16 yr old son a 20 yr old son and a 26 yr old daughter and a great support system who I HAVE TO WATCH THEY DONT TRY TO SMOTHER ME THE HARDEST THING TODAY IS WHAT THIS IS DOING TO THEM AND THAT IS WHY i AM GOING TO FIGHT JUST LIKE YOU WILL

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Donna... I'm jumping in here, before I've even read everyone's response to you :)

I know only too well the paralyzing fear that hearing you have Stage IV colon cancer brings out. And just when you think you have it under control, it hits you smack in the face again. That is all part (and probably the worst part) of this nasty disease!

But yes, there are a lot of us on this board who are Stage IV... and we have no plans of leaving this earth in the near future. You say you've read some stories where people have lived for 8 years or more since they first heard... well, heck, I plan on living for at least 30 more, no matter what the statistics say. I figure I still have 30 years of "things" I want to do on this planet, so I'm not checking out before I have them all done :) Besides, in the last 10-12 years, the incredible leaps and bounds that have been made in colon cancer treatments is unbelievable... so 8 more years from now?? Wow.. we may have a Stage IV cure! So, don't for a minute think you are packing it in early... you are going to be around with the rest of us Stage IV'ers when we are as good as cured :D

Now... for a few of the foreseeable things to expect in the near future... chemo. It's true, everyone reacts differently to even the same kinds of chemo. Hehehe... as far as I'm concerned... I sailed through 12 rounds of chemo and 6 weeks of daily radiation. My oncologist, who I adore, thinks I was incredibly brave and just battled through... where, here I felt guilty because I did not go to work (have been on Long Term Disability for the past 2 years) and thought that I really could have been going in to work ;) Instead, I have been having a wonderful time being involved with my favourite pasttime... the theatre. I get to volunteer and work in the office during the day, see shows, go to gala events and benefits and hang out with my friends. I know that if I feel fatigue or not my best, I can stay home... my friends have my back covered . Now, in all fairness, not everyone has this luxury... and to me, the fact I don't HAVE the stress of MUST WORK, then it has just worked that much better in my favour... my #1 job is all about me and my Title is "Diva" :D

But seriously... I just wanted to mention this to ease some of your fears... not everyone is on their sickbed and chemo is definitely not as bad as it once was. On the other hand, for those who do feel horrible and are sick throughout their treatments, this is every bit as real as those who sail through it. Everyone is unique and individual, hence their reactions are as well.

Now, in your post you had mentioned something about being told to keep your dogs outside when you are on chemo. I'm assuming this has something to do with the germ factor? Chemo can do a number on your immune system so you don't want to expose yourself to unnecessary germs/bacteria. Hehe... not that this means anything, but I have a dog, a miniature schnauzer who has no doubt that she is the Diva of our household and I'm just there at her beck and call. At no time did I remove her from the apartment when I was on chemo... and she still slept IN the bed with me through all my treatments. I don't know if I just happen to have a very strong immune system but the one interesting positive from the chemo is that I have not had a cold, sniffle or flu since I started the chemo (my last chemo session was at the end of Oct 2007). That's a long time for me to have gone without a cold! I used to get them at least twice/year!

Anywho... you just hang out with us, Donna... and when the multitude of medical appts. start upsetting you, or if one particular doctor scares you with his/her medical babble, you just come back here and let us know. The combined experienced of everyone on this forum far outshines the training that a doctor gets because not only do we learn all about the disease and what available treatments there is, we also live through it, so we know what we are talking about :)

Huggggggs,

Cheryl

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Wow, you been through so much, and glad to know that I may hae more time with my family then I thought, and I will make the most of the time I have left on this earth. I'm actually glad inside me that this is happening to me, and not me watching it happening to one of my kids, then you would have to put me in a padded cell!

Yes, the doctor said it wasn't good to have dogs and cats inside the house when on chemo, and told me to avoid crowds, and maybe wear a germ mask when going around alot of people, I have a little pomeranian-chihuahua mix who is just adorable, and to think of putting that little guy outside, is just disheartening..it's cold out there! I would rather wear the germ mask in the house as well before I have to do that, my kids told me they would put him outside, since they'd rather have me then the dog, but wow.. he's too sweet to just throw him out there when he's been inside this whole time.. he is housebroken, and just too little to stick him out there where some coyote or whatnot can get him.

We have something in common! I am also in theater! my kids and I have been doing community theater in our area for years now, and I just got done doing a play, we all act in them, not for pay, but as a hobby.. the gift of entertainment was always something we loved to do. I am supposed to audition for another role next month since the director just emailed me wanting me to audition, but I just wonder if once I start chemo, it may be too much for me to do, so I wonder if I'll ever be able to be on the stage again.. the Executive Director of the Ariel, who is just an angel told me I couldn't stop being in their plays, and want me to keep doing their shows, so maybe I'll try!

I'd like to work, I miss everyone there already.. I just started that job in July, after graduating from college with an Associates Degree in Medical Office Administration.. I went back to school a few years ago for it, after being a stay at home mom for 10 years, and finally got a job, and then this happens.. bummer! I just hope this doesn't keep me from doing things I did love, that's a big fear, I don't want to be debilitated from doing anything.

My friend gave me a bottle of the Mangoseen pills or something they're called, because she wants me to take them to build up the immune system.. I was reading someone's post on the Budwig diet, and AHCC and wondering if those would actually work in making the immune system better as well. Do you believe in the alternative methods?

I love your positive attitude, and you make me feel so much better that I may have this fighting chance, I love your story and I'd love to be in this earth for 30 more! I want to see my kids get married, I want to see my grandchildren.. My mother and father died when I was so young, that my kids missed out on knowing those two wonderful people, I don't want my kids growing up without a mom, it was hell for me.

Hopefully they do find a cure for us all, no cancer is good, it's a crappy thing people get, and shouldn't, I hope everyone just gets through the hard times, I can handle some pain, I'll take what comes to me, and thanks for posting to me, you are a ray of sunshine!

Hugsss to you!
~Donna

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hehehe Donna... well, I can only speak for myself but I found the best medicine for me was to keep involved with the theatre. As you already know, there is something magical about a theatre family... they will all circle the wagons to protect their own :)

Now, I don't actually go on stage and act... I'm definitely a behind the scenes, organizing auditions, administration and Box Office Queen. But, when I was on chemo, they had a backup plan that if, for any reason, I had to miss a day, or an evening, or a few days... then there would always be a back up person to step in for me. If you are in a show, then you might feel more confident if there was an understudy so that if you couldn't be at a rehearsal or a performance, they have your back covered.

As for that little darling dog... of course, I'm no doctor, but they would have had to pry my little Bridget out of my arms rather than tell me I had to be without her during my treatments. Hello?? She IS my treatments . Of course, I had friends lining up who would take her in a heart beat (and did when I was in the hospital for my various surgeries)... but if I was at home, then she was with me. And my oncologist knew that because she knew I took Bridget out for long walks (haven't been able to do that in the last year because the chemo did aggravate my arthritis big time). Not once did my onc tell me I had to be careful around the dog. I wonder if they mean outdoor dogs, or dogs that haven't been vaccinated? Indoor dogs just don't have the germs... they are very clean animals. Heck, not to offend anyone with children, but children carry more germs and bacteria than spoilt little indoor dogs do! And it's not like you would keep your children out in the backyard! LOL!!

Yes... I do believe in alternative methods... to a degree. All in moderation, I suppose. For instance, I am taking a supplement called "Inositol" which works on improving the lung cells and has actually been proven to help rid pre-cancerous cells in the lungs. I don't know that it would help with a spread of colon cancer to the lungs but hey, I figure it can't hurt either :)

There are also certain foods and recipes that are documented to help, so I would be open to them (and have been). But anything majorly drastic that will change my lifestyle to one that I would not enjoy... well, I know that I wouldn't keep it up so I'd be defeating the purpose. I've heard good things about Mangoseen pills and Mangoseen juice... as have I about the Acai Berry which has lots of antioxidants. Will it fix/repair/cure? I don't know that I would go as far as to believe that... but I definitely think it helps keep one healthier and helps with the immune system.

But, once you start chemo, you have to be careful... some things, like certain juices (or is it all juices?) will lessen the effect of the chemo. You will be given a list of foods/fruits/etc. that you should avoid while on chemo.

Huggggggs,

Cheryl

sheri22
Posts: 278
Joined: Jan 2009

YOU ARE AMAZING AND i AM SORRY TO HERE ABOUT THE LIVER SURGERY AND HAVING TO GO THRU CHEMO

AGAIN i HAVENT BEEN THRU ALL THAT YOU HAVE YOU ARE DEFINANTLY AN INSPIRATION TO ME NOW i

WAS JUST DIAGNOSED WITH STAGE FOUR CA THURS IT HAS MES OUTSIDE OF MY COLON TO MY RT LOWER LUNG i HAD STAGE 2 3 YRS AGO THOUHT IT WAS GONE FOREVER FULL i WAS YOUR RITE THE DRS MAKE YOU THINK THE WORST YOUR POST REALLY HELPED ME i JUST STARTED CHEMO FOR THIS TODAY AND JUST WANT TO SAY THANKS FOR YOUR STORY i AM GOING TO KEEP A GOOD ATTITUDE IF OTHER PEOPLE CAN DO THIS I know I cn thank you for giving me hope and some good ideas

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

wow, major glith!

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

wow, major glitch!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

HaHa Kimby, wow... what a computer lag! I couldn't even reply to what you wrote for awhile, I think the site has hit a snag! lol..

Oh wow.. what a ball of sunshine you are, I read your page and saw your pics, and you are an inspiration, I was joking and poking fun in the hospital as well, also had some crying spells, but know I cannot dwell on this, life goes on, who knows for how long, and wow.. I hope I don't die too soon, but my positive attitude is what's keeping me going as well, I guess mostly I'm not afraid to die, I'm more afraid for my kids and how they are going to be when something does happen, and know I shouldn't be thinking of that yet.

The doctor told me on a scale from 1-10 (10 being untreatable) I am way there around 1 or 2, but I know I'll get worse, maybe I won't, it's all so hard to take in, but I am the humerous person around my friends, I am very outgoing and outspoken and love to have fun as well. So chemo doesn't make you feel sick all the time, where you will never feel like yourself again? I'm afraid of wanting to take my kids somewhere, and then BOOM! I'm puking up in an aisle at a store or something, I just want to know I'll be able to function normally, without germ masks, and all this, that I'll be able to take my kids away to NY, where I am from, and see family they haven't met before.. I keep thinking it's going to debilitate me from working, I guess not knowing is more scary, but I guess I'll find out soon!

If I lose my hair, my friends do want to take me wig shopping, and all that, I told my kids they could paint my head if they'd like, maybe my hair would grow in purple when it grew back..I am trying to make this as humerous as possible lol..

Thanks Kimby, you and everyone who posted are a great strength, I'm so glad I found this forum.

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

You need to be very scared...it seems like we are a lot alike! LOL

I am not really afraid of dying either but more afraid of what that means to my kids and husband, my mom, my sister, my best friends....you know what I mean. Do you know yet what chemo 'cocktail' you'll be on? I started with folfox (oxiliplatin, 5fu and leucovorin). With folfox you're not likely to lose your hair, although a few do. It seems that many more lose hair on folfiri (irinotecan , 5fu and leucovorin). They will most likely add either Erbitux or Avastin to one of the above cocktails. For me, chemo is progressive. I start out with a few side effects, feel ill for a couple of days and then get progressively better until the next cycle begins in 2 weeks. The last round was tougher on me and I had only a few days of feeling well before another cycle began and the side effects became more difficult to manage. Don't be a hero with side effects. Make sure you report whatever is going on and they will help keep things in check. My oncologist loves to remind me that it isn't a contest to see how tough I am! I, for instance, had some nausea but no vomiting at all. Diareha, well...more of that. We are all individual and you will have your own struggles, but someone here will have already dealt with it and have suggestions.

Keep in touch,

Kimby

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

You mentioned working at a Wellness Center. The one I mentioned is a national
non-profit organization started by a physician in California who found a need
to offer programs for cancer patients focusing on the enotional/spiritual
aspects as well as other physical aspects not addressed by the medical
community such as nutrition. They are not located everywhere but I did notice
there is one in Powell which is just oustide Columbus. Not sure how close or
far that is from you but they are on 10330 Sawmill Parkway, Phone 614-791-9510
if you think you might be interested in seeing what they offer. All their
programs are free.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Hey Dixchi~

Well, the Wellness Center I work for is more of a Physical Therapy Rehab place.. has a gym, and I work as a secretary for several Physical Therapists and Assistants, it has classes like aerobics, and all that, in one room, has a gym where people work out in another, and the my outpatient physical therapy department for people being treated by the PT's.. thanks for that information, I don't live in Columbus, I live 2 hours away, but will definitely be trying to find some kind of meditation and relaxation classes around here, I think they'd help alot!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I got stuck in that glitch as well! Had to surf to another site and come back when it seemed to clear up! I wanted to say that I also was 43 when I was diagnosed back in 2004, 3 weeks shy of my 44th birthday. I also was POSITIVE I was just going to be walking down the street and croak off! You know, I had CANCER after all! :) Anyhow, obviously I discovered this wasn't going to happen, and here I am almost 5 years later! I had a recurrence on my ovaries and in my omentum back in 2006; had more surgery, but again, I am still here! Things really have progressed over the years as far as treatment and making them more tolerable (although I am certainly preferring a CURE for all!). I have done gone through 6 months of chemo 3 times since 2004 and while no walk in the park, they are totally doable. Just remember to tell your doc and nurses ALL your side effects (I figure the grosser the better, after all it really is better to share!). There are drugs out there for everything and you can be sure that if you are experiencing it you aren't the first one! The drugs for anti-nausea rock! Enjoy your kids and know that God has a plan for you! There will be good days, there will be bad days, but the good far outweigh the bad or we just wouldn't be continuing the fight, would we? Come back often and I totally agree that you should search out a local support group if you are into that. I go to one once a month and it's great to talk about the kind of stuff "normal" people just don't understand, especially when you're joking about spending a weekend on the toilet while the chemo burns it's way out!
mary

amcp
Posts: 251
Joined: Jan 2009

Donna...so sorry to hear your news. You will be in our prayers. My husband was diagnosed with Stage 4 colorectal cancer with met. to liver. He has been on every kind of chemo availabe for colon cancer. Sure he was sick some but like they said there are all kinds of meds for the nausea. There is phenegran, zofran, and emend. The last one really helped by husband. He was on chemo from 11/06 to 12/08. The chemo has shrank the tumor on the liver. He did have to have a colostomy but that is manageble. He is now seeing specialist at Vanderbilt Medical center where they are planning to remove a tumor from his lung and after he heals then remove the right lobe of the liver which has the cancer. Just take it a day at a time ...put one foot in front of the other...your husband, family, friends and all of us here are with you and praying for you. He is now 62 but we are fighting this "beast" a day at a time. We thank God for every day and we make the most of each day. No one is promised tomorrow ..we all just have today. Your postive attitude is important and it will help you get through this. The onocologist and his staff while do everything they can to help you through the chemo...sure there are side effects ...everyone is different. Do not give up hope and keep praying. Lean on the Lord and your family and friends. God be with you.
Anna

amcp
Posts: 251
Joined: Jan 2009

Donna...so sorry to hear your news. You will be in our prayers. My husband was diagnosed with Stage 4 colorectal cancer with met. to liver. He has been on every kind of chemo availabe for colon cancer. Sure he was sick some but like they said there are all kinds of meds for the nausea. There is phenegran, zofran, and emend. The last one really helped by husband. He was on chemo from 11/06 to 12/08. The chemo has shrank the tumor on the liver. He did have to have a colostomy but that is manageble. He is now seeing specialist at Vanderbilt Medical center where they are planning to remove a tumor from his lung and after he heals then remove the right lobe of the liver which has the cancer. Just take it a day at a time ...put one foot in front of the other...your husband, family, friends and all of us here are with you and praying for you. He is now 62 but we are fighting this "beast" a day at a time. We thank God for every day and we make the most of each day. No one is promised tomorrow ..we all just have today. Your postive attitude is important and it will help you get through this. The onocologist and his staff while do everything they can to help you through the chemo...sure there are side effects ...everyone is different. Do not give up hope and keep praying. Lean on the Lord and your family and friends. God be with you.
Anna

amcp
Posts: 251
Joined: Jan 2009

Donna...so sorry to hear your news. You will be in our prayers. My husband was diagnosed with Stage 4 colorectal cancer with met. to liver. He has been on every kind of chemo availabe for colon cancer. Sure he was sick some but like they said there are all kinds of meds for the nausea. There is phenegran, zofran, and emend. The last one really helped by husband. He was on chemo from 11/06 to 12/08. The chemo has shrank the tumor on the liver. He did have to have a colostomy but that is manageble. He is now seeing specialist at Vanderbilt Medical center where they are planning to remove a tumor from his lung and after he heals then remove the right lobe of the liver which has the cancer. Just take it a day at a time ...put one foot in front of the other...your husband, family, friends and all of us here are with you and praying for you. He is now 62 but we are fighting this "beast" a day at a time. We thank God for every day and we make the most of each day. No one is promised tomorrow ..we all just have today. Your postive attitude is important and it will help you get through this. The onocologist and his staff while do everything they can to help you through the chemo...sure there are side effects ...everyone is different. Do not give up hope and keep praying. Lean on the Lord and your family and friends. God be with you.
Anna

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Hi Donna,

Sorry you had to find us, but GLAD you are here! Stay off of the internet...it'll scare you witless and it is mostly old, misinformation anyway. There are many here who will help and encourage you. I couldn't do it without this crew!

I was DX'd Oct 22, Stage 3 rectal cancer, went through 6 1/2 weeks of radiation/chemo, wore the fanny pack the whole time. I will have surgery 2/4. I didn't have much puking, just nausea - don't you hate that feeling? Everyone reacts differently, and because of the radiation, I was unable to drive myself after week 3. Keep fighting. You CAN do this. Keep the positive thoughts rolling in.

BY the way, Although I live in Colorado now, I am originally from Ohio - Tuscarawas County.

Vicki

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Hi Donna! I am sorry to learn of your diagnosis but it sounds like you have found good medical care. I am Stage IV with mets to my liver at diagnosis. I was age 50 at diagnosis last February, working full time and shocked to learn that I was so sick. I had colon resection before beginning chemo. After 6+ months of chemo, my liver mets became operable and I had liver resection at the end of October. Although the liver resection, in which 70% of my liver was removed, was a much more major surgery, I have been surprised that the recovery from the second surgery has been much quicker. Although I thought that I felt fine at diagnosis, I now realize that I was quite debilitated from the cancer. As you receive chemo and the amount of cancer in your body is decreased, I hope that you will find, as I did, that I grew stronger through the chemo rather than weaker. Although there were some side effects, the drugs given to reduce those were pretty effective. Hopefully the side effects for you will be outweighed by the improvement in your health as the chemo attacks the cancer.

tiny one
Posts: 467
Joined: Jan 2009

Hi Donna! I was diagnosed with stage 3 colon cancer with 1 lymph node testing positive. I had a resection, a temporary ileostomy, 5 1/2 weeks of chemo and radiation. Chemo was on me 24/7 with a pump. I had 5FU. Then 6 months of oxiplatin. This was done twice a month. 3 hours of chemo and then the pump on for 2 days. I am 50 years old. I was diagnosed in Feb 07. I had very few side effects from chemo. I had some fatique a little nausea, meds took care of that, neuropathy in my hands and feet which is almost gone now. Sensitivity to cold from oxiplatin. Colon cancer survivors are getting good results from treatment and living a good long life. I never lost my hair, it just thinned a little. I remained very active physically all thru treatment and very active now. I have some long term effects from radiation, vaginal shortening and rectal narrowing. Make sure you like and trust all your Dr's. If you don't find one you do. Get a second opinion. I still have some issues but their due from my bag reversal. If I didn't have those issues I would feel like I did before my diagnoses. I had a mediport, it saves you from being repeatedly stuck in your veins, and enabled me to have a pump on. Good luck Donna, we're all saying prayers for you and your family. Cancer is very scary, seek out a support group, their priceless and helpful. Don't be afraid to ask for help.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Donna - Sorry to hear your story, but you came to the right place. We're a firendly, helpful group here. I had to stay away from web surfing for quite some time as it scared the bejeezus out of me ;). Colon cancer has become very treatable and they're really dialed into how much drugs to give you to kill the beast without overdoing it. Find a good doctor that you're comfortable with, that will help a lot. Attitude is everything - try to stay positive and stay away from those that aren't!

I was diagnosed with stage IV colon cancer 6/07 with mets to the ovaries and omentum. I was 44 when diagnosed and married less than 2 years - no kids. My only symptom was my abdomen swelled up so I looked 5 months pregnant and I had fluid around my right lung. Doctors thought I had ovarian cancer because my ovary was so big (over 3 lbs). They found the colon cancer during surgery.

I went through 12 rounds of FOLFOX/Avastin. My primary side effects were sensitivity to cold - gloves are your friends, use them for everything! I also had problems with constipation and nose bleeds. The constipation came from being afraid to drink anything as it would feel like something sharp was caught in my throat, so I'd get dehydrated. Warm liquids will help with this. The nose bleeds were never bad, but annoying. I chose not to work and was glad I did. Chemo weeks were very tiring but the off weeks weren't too bad. Exercise really helps, even if it is just a slow walk. No one has really mentioned lack of appetite, but I could feel mine going away while being infused. It would come back a bit just before I got hit again. Nausea was manageable with Zofran for me. No hair loss. Regarding germs, just be sensible. I got some antibacterial hand wash so that I wouldn't have to use the cold water in the public restrooms. I also purchased some immodium and stool softeners ahead of chemo, just in case. Some saline nose spray is also helpful for the nose bleeds. Lemonade or the crystal light version of lemonade can cut the metallic taste that chemo sometimes gives you.

My prayers are with you in this time, keep us posted on your progress. Traci

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Although my own twin would beg to differ with me! My recurrence also was 2 years after initial diagnosis, but it was a large tumor to my right ovary, with another large cystic tumor on the left ovary. Many mets to the omentum, hence the removal of, and various small tumors in fatty deposits in my abdomen. All was removed and I did additional chemo. Do you find that the loss of your omentum affected your metabolism at all? Mine has been crazy slow, but I also have done 2 sets of 6 months of chemo since with Emend and Decadron to obliterate the nausea/vomiting so who knows! I was talking to my onc nurse just the other day and she thinks I'm onto something with the loss of the omentum and metabolism issues. Anyhow...
mary

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I am so overcome with tears as I read each and everyone of your stories, and how happy I am at the same time to know I'm not alone, I will definitely be strong, I am not ready to let this beat me, when I first heard last week of the DX I thought I'd be dead in a couple weeks!

My husband has been so awesome through this, I am getting a brand new king size bed, new hardwood floors and he's even painting the bedroom so it will be nicer for me, because he feels if I'm going to be sick, he wants it to be in a nice cheerier atmosphere, and take up all the old ugly carpeting, to help with keeping the germs out of my room and all, he even scrubbed/bleached my walls!! I am thinking of maybe putting a hand sanitizer dispener outside my room, so whoever enters needs to sanitize their hands first.. lol..

I will try and find a support group, being from a small town, I feel like I'm the talk of the town now.. kids who barely spoke to my kids are now asking about me and how they're doing, which is nice, what's funny is the people calling me, and talking to me like I'm already dead...and I shock them when I'm sitting there just chatting and giggling like it's just a stupid disease on the phone, I am scared, but I don't want to let on that I am, not in front of my kids anyway.

I was wondering if I should be taking or eating anything to supplement my diet.. I am on a regular diet, the doctor said I could have anything I want, but should I maybe start taking like these juices or vitamins that boost the immune system? I am actually liking these Ensures, which I am taking for extra protein, I actually felt my appetite was dwindling now, but it may be because of my mediport surgery I just had Thursday night, it is feeling less sore now, and I was actually having a good day today, and now feel better meeting all of you here with your amazing stories, it really gives me good hope, and I want to help others with this as well, when I start going through my treatments, I'll be of more help when I know more, and hope to even visit other people in hospitals with my situation.

I have my first doctor office consult on Feb 2, and she will discuss my plan of care, no chemo that day, but will set up when I will start it, so then I will find out what cocktails she has planned for me. I heard she was very good, and laid back, and very encouraging, and really can't wait to meet her. I'll know more soon to share with you all, and will be on more and more, I am feeling alittle better here with you all. I feel like I have a chance at a life now. Thank you for the prayers also!

Hugss to everyone!
~Donna

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

Like everyone said to me - nice to meet you, sorry to meet you here, but you came to a really great place. These people are wonderful, everyone has a different yet same story, and you will alwyas find someone who can help through any certain side effect and help you through your fears.

I actually read things here and didn't talk until I was into my second treatment. I am stage 3, not sure of the rest of the stuff (nodes and things - didn't want to know). I thought it was a bad case of constipation, as did the ER, they kept sending me home with enemas and stuff to drink - after the 3rd visit, my fiance found me on the floor crying - I still couldn't "go" but was throwing up nothing (hadn't eaten in 5 days). I ended up donating a foot of my colon to science for my birthday and started chemo in December. I am on the FOLFOX regimine, am having 12 of them, I just completed my 4th round.

I go in on a Tuesday, they complete blood work, I see the doc. Then I head into a room, they start the premeds - antinausea and a steroid. after about 30 minutes they hook me up to the Oxilpalatin (for spelling purposes I usually say OX) and the Leukovorin. I sit and watch a movie or read, although lately I have been talking to a few of the people that are there on my day. That goes on for about 2-3 hours, I am hooked up to a pump which I wear until Thursday morning, go back in they take it out and done for another 11 days.

The steroid usually keeps me sort of awake. I can sleep, yet the mind is still spinning. The OX makes my hands and feet tingle before I even get out of the place. No one is kidding about the cold part - suggestion is to find something you like to drink at room temp and stock up - I have learned that lemonade seems to taste ok - yeah - taste buds are slowly disappearing, food tastes awful. I haven't gotten nauseous or vomited at all, no hair loss. did get a few mouth sores last time, which was manageable for me with anbesol but there are prescription mouth washes that I hear work. You live in Ohio, I live in Minnesota - really - watch out for the cold. I was brave enough to try and go grocery shopping, but my eyes froze shut walking outside and I had to ask for help. Also, gloves in the gorcery store are essential for picking up meat and frozen items! Nothing has been unmanageable, just annoying. Due to the lack of sleep during treatment, I usually crash hard and early on Thursday nights, and then do much of nothing on Saturday (I work Friday and then do things I shouldn't....a few glasses of wine with my fiance).

I keep hand sanitizer all over the place and in my purse. At work I have alcohol wipes, as I share my computer with my assistant, and she has been sick for the last 2 weeks - I am fine.

I remember how scared I was with the "not knowing" before the treatment started. And honestly - I still get scared before each one - and I HATE getting stuck in my chest - I finally got a prescription for EMLA cream - to be used before they stick you - will let you know - I have a week before the next one, and I intend to enjoy Super Bowl Sunday like I normally would! Attitude is everything, and I love to keep the fun in things also - I haven't decorated my pole yet tho....good idea!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Does it hurt that bad when they stick you in the chest for the mediport? I may discuss something like a topical creme with my doctor then when I see her, and how long does that cold sensitivity last for? is this for months?? I had no idea it could freeze your eyes shut.

I do want to go back to work, but don't know if I can do it full-time, I somehow would like to spend some time doing other things as well, especially at my kids schools or something, I hope maybe they'll work something out part-time with me, they mentioned I was able to do a family medical leave or something, and a social worker said I may be able to file for partial Soc Sec Disability temporary till I can go work full time, I work 9-6 on Tues and Thurs, and 8-5 Mon, Wed, Fri, it be nice to have shorter hours where I can spend it with my kids and their afterschool activities as well.

Couldn't they give you something to help you sleep though during your treatment? Wow.. I love food, I"m going to hate not being able to eat anymore, and losing my taste. I'm not looking forward to this, but if it helps me get better and more comfortable, then I don't mind, I heard the first treatment was long, I heard like 6 hours from some people.. wow.. this is just hard to grasp for me, I am so terrified.

Thanks for your reply, it helps, if I can know what to eat or drink during those cold sensitivity moment.. should I just drink maybe warm tea or something? soups? I'm going to be afraid to go out at all, and I love to grocery shop.

Good luck with your next treatment! man, my mediport is so either popped out looking or just still swwollen from the surgery, I can feel the bump through the shirt, and it gives me stress..like it's going to fall out of my chest or something.. you have a good time on Superbowl Sunday!

keepnthefaith's picture
keepnthefaith
Posts: 37
Joined: Jun 2008

Before the chemo nurses access my port the give me a little shot of lidocaine and I don't feel the big poke at all. Some places use EMLA cream,but where I go they save that for the kiddos. My port stayed swollen for a long time and bugged me for a long time - now I have times that I forget that it is even there and since I am going to have to keep it for at least another year that is a good thing. I completed chemo in Dec. 2008 but the onc. wants to leave the port in.
The taste thing was a bummer, sort of. I never did lose my taste for Oreos so I kept them on hand. Also spicy stuff tasted wonderful, but I never had mouth sores to deal with. The only thing I really wanted to drink during chemo and right after was water because it was the only thing I could stand at room temperature and I lost my taste for coffee so that was out. My husband would get so upset with me when we would sit down to a dinner and I would say it tasted like "warmed up vomit". He couldn't eat then.
Good luck to you,
Felicia

taraHK
Posts: 1961
Joined: Aug 2003

Welcome and I am sorry you have cause to be here.

Everyone reacts to the chemo differently but you shouldn't assume you will feel "sick". I have had four rounds of chemo. Never threw up (although I felt nauseaous), never lost my hair (altho I had some thinning), continued working (atlho I had a flexible schedule), continued exercising (on the good days/weeks). It can be OK.

Will life/you ever be "normal" again? No. But there will be a new normal.

I was 44 when I was diagnosed -- that was over 6 years ago. As your doctors have said -- times have changed. Stage 4 ain't what it used to be, chemo ain't what it used to be.

We will all be thinking of you as you start your treatment. Good luck! And best wishes

Tara

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I can't add much, everyone is so great here...

I was 49, stage III rectal. Told that it was rare, and they weren't quite sure how to treat it. Lucky for me, their guess worked out...after chemo and radiation I had my rectum and sigmoid colon removed, and a new rectum made from descending colon. All internal. It's been almost 4 years since treatment ended, I am still NED (No Evidence of Disease), and living life large!!!

Hugs, Kathi

pamness
Posts: 513
Joined: Nov 2007

I am Stage III not IV but many things are the same. I had a port and having it stuck didn't bother me - it hard for 3 seconds, maybe, I think it varies from person to person. I don't know what treatment you will be on. I had a hard time with the oxaliplatin, but the leucovorin, 5FU and radiation were not so bad.

The new anti nausea meds are great, you will have to find what works for you. My advice would be - if have nausea, diahrrea, whatever - make sure your oncologist knows about it and treats your side effects, whatever they may be. Make sure you are comfortable talking to you oncologist - your oncologist's nurse practioner can be very helpful as can your chemo nurse.

All the advice you have gotten here, on this board, is excellent. Keep up your spirits. Treatment for colon cancer is good now and getting better.

Pam

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tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Donna. There are many people on this board who have been through so much, and they can help you with all the questions you have. I was diagnosed at Stage 1, so didn't have chemo or radiation, but I just want you to know that I'll be praying for strength and comfort for you.

*hugs*
Gail

mom_2_3
Posts: 964
Joined: Nov 2008

Donna,

I was diagnosed Stage 4 in November when a random dr that scrubbed into my 3rd c-section "happened to feel" a tumor on the outside of my colon. As we had not planned the pregnancy and were actually actively avoiding pregnancy God felt otherwise and sent my daughter as my Angel. I had no symptoms and the dr said it would have been another 8-9 months before liver symptoms (but it would have been even more serious).

We got ourselves to the best hospital in our area (Memorial Sloan Kettering) and found the best doctor in our area for this particular cancer.

I finished my 4th chemo treatment (FOLFOX) 2 weeks ago and had my CT scan last week. Today when we saw my oncologist she actually smiled and said "the scans look great!" Everything in my liver shrank by about 50% as did the colon tumor. She is presenting me to the liver tumor board on Thursday for possible liver resection. This is after another oncologist (the first opinion we got) said I was not resectable and to get my affairs in order.

I just did my 5th treatment today and we will find out later this week what the next steps in treatment will be and the timing.

Things I learned so far and apply to my cancer battle are these:

1. I went into my first chemo treatment and said to the onco nurse "let's get it on." I was committed to the battle and part of that commitment is mental. I believe I will be cured from this disease. I know it deep in my heart. I have had no side effects from chemo except for cold sensitivity for 5-6 days after treatment but the tips others provided are good to deal with it. I have lost some hairs but I also am not pregnant anymore so not sure if it's the chemo or the traditional after pregnancy hair loss. In any case I am not growing any hair right now which means no underarm shaving! Yeah! I also just had my hair colored (all natural products) and won't see any roots or gray hair for a while!

2. Immediately cut out all sugar. Google sugar and cancer. There are some who believe cancer feeds on sugar and some believe cancer doesn't care if the glucose comes from sugar or complex carbs. I personally believe that cutting out all sugar and white flour products (white pasta and white bread) is helping me. I tested my alkalinity when I first got my diagnosis and my PH was about 6.6. Since I started my sugar-free diet I have improved to a ph of 7 to 7.2. Google "cancer and PH." Also, look for sprouted bread. There are very few breads in the grocery aisle that are sugar free. I avoid red meat. I eat only chicken and turkey. Some people feel you should eat whatever you want and ultimately this is your battle and you will have to do what feels right for you. But it's common knowledge that a western diet can contribute to colon cancer so it makes sense to me that a western diet can contribute to recurrence.

3. I started juicing. I bought a commercial juicer and it has a place of prominence on our counter. At the end of every day I count how many fruits/vegs I had that day. I shoot for 8. If I only ate 3 vegs I will juice the missing 5 vegs (usually broccoli stalks, carrots, green apples, celery, cucumber. Sometimes add red cabbage and beets). If you search on this board for "2bhealed" and "scouty" you will see their testaments to juicing. Before you begin this or take any supplements, however, consult with your doctor. Some dietary changes could possibly counteract the effectiveness of the chemo so don't do anything without the dr's blessing. My DR said the amount of juicing I do is ok. I do not supplement other than mult-vitamin. I will also sometimes add flax seed to my sugar-free cereal and whey protein to skim milk. Ensure, I believe, has lots of sugar so perhaps you can substitute high-quality whey instead.

4. I started seeing a psychologist. It is good to talk to someone and the one I go to is a cognitive behavioral therapist. She believes mind follows body and that hope is a powerful tool in recovery.

5. Go buy Patrick Quillan's "beating cancer through nutrition" and Groopman's "Anatomy of Hope." I found Lance Armstrong's book to be very encouraging.

6. I went on STD and will probably go onto LTD when the 13 weeks is over. I have been working full-time since I was 15 (24 years so far) and have been working for my present company for 15 years. I feel fighting cancer is my full-time job. Others feel having enployment is good for keeping active so it's a very personal decision. I just have found I don't need the stress and can use this time to spend more time with my kids.

7. I don't know if you are spiritual but Prayer is Powerful. My family has put me on every single prayer chain that they know of. I have received letters from complete strangers telling me they are praying for me. One day I was feeling particularly low and prayed to God for hope and encouragement. I went out to the mailbox and had a letter from a complete stranger saying they were praying that I would have "hope and encouragement". I felt so good to get that letter. And I pray for others as I will now pray for you now. I go to healing sessions. At the first one the leader actually said God told her that He told her He wanted to heal "cancer of the lower body and liver." Wow! There were only 5 people there for prayers so I was amazed. 2 weeks later my tumor marker halved itself after 2 treatments.

8. Find a model for cure. Our best friends have a father who was diagnosed with Stage IV inoperable colon cancer 6 years ago. 6 months of chemo made him operable. He had surgery, 5 more months of chemo and is here today with no disease. He has been cancer-free for 5 years. My husband's co-worker's brother has been 10 years cancer free after Stage 4 diagnosis 11 years ago. I keep a list of people in my treatment notebook and it now has about 80-90 names on, names of people that had Stage IV and are now disease-free, many long-term (5 years and over). Cure is possible. Google "cure for metastic cancer" and you will see a number of studies, presentations about metastatic cancer and better prognoses. Recent series indicate that there is approaching 60% survival rate at 5 years for Stage IV (with liver resections). You mentioned your tumor in the liver is large. Google "downstaging liver tumors" and you will see there is great success in getting people to operable status.

At a meeting with colorectal surgeon I asked him about cure. He said at MSK their cure rate is 40% and approaching 50%. MSK defines "cure" as 10 years cancer-free with no recurrence. So forget about things you read online. The statistics really knocked me for a loop but they are only numbers. They are not "you"! I consider myself my own sample of 1. There is no reason I can't be a winner in this battle.

9. Notebook. Get one. Keep track of all your notes. Document each dr visit and make sure to bring someone to listen to the information as you may not get it all. My husband reminded me that when I asked my second oncologist about getting me to 5 years she said "sure." I had completely forgotten asking the question. Ask for your scans on CD. Ask for your radiology reports and keep them in a binder. Get colonscopy reports. Get blood tests reports. Keep it all together. If you ever need to get a second opinion you will have your medical information already.

Good thoughts and wishes to you!

Amy

beachinmom
Posts: 75
Joined: May 2008

Donna--

Like others have said, so sorry you have to be here. But, you have found a good home for suppoort. Share anything and everything and let those that have been there done that be a source of strength for you.

Amy---what a thoughtful post. Your story is incredible. I benefited from your thorough post, thanks so much.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Wow! I was just reading about the Budwig diet and cancer and how I need to cut out the sugar, someone else had to told me that cancer feeds on it as well. That was a very hopeful post you put on here, and never knew the statistics were really out of whack. I am getting more hopeful as I come here to read everyday, and know I just feel like it there's something God wants me to do out of this, and hope I can find what, I was thinking of getting a juicer, as I was wondering, while reading the Budwig diet, how the heck would I juice a carrot or celery.. lol..it's hard to think of letting go some things you did once enjoy, but anything to help myself.

I may go buy some flaxseed oil to mix with that cottage cheese, and honey, I think I need to purchase just some good recipe books to help with my diet, and possibly my families diet.. they eat way to much junk as well, and wouldn't hurt for them to lose a few pounds as well, I have always wanted to eat healthy, just not sure what's the healthiest thing out there, how to make things taste good, would anyone have any cookbook suggestions on foods that fight cancer?

I definitely need to find a good church, I was raised Catholic, but not into those organized religions, and most of these little churches around town here are scary, they are abit extreme to me, it's bible belt, and alot of these people who call themselves Christians are very hypocritical and judgemental, and make you feel like an outsider at times, so I haven't been to one in a while, I have a more personal relationship with God, and always believed, but would like for my kids to get to know him better as well, but through not through these types of churches. I am on some prayer chains now, and hope to stay on them, and get on more, I'd love to maybe find something non-denominational that just wants to talk about God and not about how other religions are wrong, and blah blah...some of these pastors are unreal here.

Good idea about the notebooks! wow... all those people you know that are cancer-free from this is sooo promising, and hopeful, I was crying while reading all that, I must get the thoughts of doomed from my mind, and really move forward, it's hard sometimes, and not good to think about it, but to even have that ray of hope is alot of help for me~

Thanks for that super post Amy!

~Donna

mom_2_3
Posts: 964
Joined: Nov 2008

Donna,

It sounds as if you are embracing the positive aspects of having this disease. That is great. It is important to realize that this will change your life completely and forever. But if you acknowledge the good things then it will be much more positive and you can take those positive changes into the rest of your long and healthy life.

Before my diagnosis my husband and I already had a great relationship, we have been together 15 years. But after diagnosis I find that little things that irked me before (why can't he turn his socks inside out before he throws them on the floor...????) :) don't bother me anymore. Life is too short to be snappy about little things. Before my husband didn't embrace my spirituality. Even though he was raised Catholic he rejected baptism for our children and joining a church together. Since he has come to realize that a church can provide a supportive environment for our kids and we have been "church-shopping" the past few weekends to find one we both like. He now encourages spirituality, has even been doing some reading of his own.

Before diagnosis I was relatively lax with the kid's diet. Not anymore. No candy except 2 pieces on Friday. I avoid the center aisles of the grocery store -- nothing with sugar as an ingredient or corn syrup or partially hydrogenated oil. It was tough at first but easy now. In the evening they ask for grapes or oranges or apples when before they asked for vanilla wafers or other empty calorie food. And what a change in their behavior -- less sugar = less crazy!

Before diagnosis I spent WAY too much time on the internet. Politics would drive me crazy. Since I have let it all go. In the morning I check here and one other support forum and that's about it. I am working on projects around the house, projects for my kids and trying to get more out of my time. It seems I always planned too far ahead. Last year I was shopping for a retirement home and actually went down to SC to look for one. Talk about planning ahead! I have thought since that I spent so much time looking ahead that I didn't spend enough time in the day I had. So while I still save for retirement and college savings I don't ruminate on the future like I did.

Before diagnosis I was more impatient with my 5 YO and 3 YO. Since, I have discovered worlds more patience with my children. My relationship with my son has improved greatly. We love to snuggle and he loves to hear stories about when I carried him in pregnancy and all that (luckily he has not been curious about how he actually got into my tummy.... LOL). I also spend lots more time with them. I used to be very gung-ho with work. I went back after 3 weeks with my son and after 6 weeks with my 1st daughter. Now I will stay home through this year with my youngest and I am cutting my daughter's pre-school hours down. My son is in kindegarten. Perhaps God wants me to stay home with our youngest so that's what I am doing.

Before diagnosis I didn't realize the extent of caring and love our families and friends and neighbors had for us. We get notes in the mail, emails, calls, people dropping off food, offers for any kind of assistance. It is the most amazing feeling to have that and I now make it a point to increase my empathy for others in a more active way.

Physically I feel great. Since juicing and changing my diet I have lost 50 lbs. I did lose some pregnancy weight (ie baby) along with that but I am now down below pre-pregnancy and I did need to lose some weight. I need to lose about 10 more but figured surgery will be good for that as the DR said I won't be eating for most of the week after the surgery. My face is a lot smoother than it has been in a while. And I mentioned my hair isn't growing anywhere so good-bye to shaving for a while! Yahoo! I do realize that there will be tremendous physical challenges in the future but as they come I will deal with them. Maybe I can get that tummy tuck during my colon surgery...

Finally, before diagnosis I shuttled the kids to kindegarten and pre-school and my husband didn't do any drop-offs or pick-ups. He would work late many many nights and the kids didn't see him a lot during the week. Now my husband refuses to let me take the kids to school as he is afraid I will pick up something (get cold or something). That means he is home every night by 6:15 and I have dinner on the table and we are having a family dinner that I always wanted. My husband taught our son checkers (and now no one in our family can beat him) and we just started teaching him checkers so as opposed to videos on tv we spend lots more time on games and crafts in the house.

So you can see that a lot of positives have come from the diagnosis. I am grateful for these changes and hope they last a long long lifetime for me.

Amy

PS I mentioned my list of survivors. I read through the names before bedtime so if I wake up and start to have negative feelings I just recite the names in my head. I even found one woman on another board who had 3 kids before Stage IV and had one child after her diagnosis. She is doign great and is cancerfree!

PPS Check out Dr Lenz's blog. This is his new blog (http://fightcolorectalcancer.org/category/dr_lenz) and this is his old blog (http://www.revolutionhealth.com/pages/colon-cancer---rhg). The old one has more content but one post I like especially is where Dr Lenz discusses many of his 10 year metastatic cc patients (that are doing well and just coming in for scans to watch for recurrence) and he talks about the fact that because they are so closely monitored they actually discovered early stages of other primary cancer that they were able to treat successfully because they were caught so early. So all this medical attention can help head off other issues. Another benefit!

PM me if you want some other great links for reference!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I actually hadn't had a great relationship with hubby for the last 2 years. He seemed so "distant" with the kids, didn't do much for them, he works from April-Dec long hours, and sometimes 6 days a week, and then gets laid off during the winters since road construction shuts down for them.. it made me bitter to have to try and go to school, then work, and have to try and rotate my schedule to get the kids to school, to get them to and from their afterschool activities and sports, and so on, I was getting worn out.. I was being split apart in 4 different direction, not including my hubby and I's own direction.. it was all about the kids and whatever they needed...and hubby did some stuff in the past that I never did get over, nothing like cheating, but let's just say he used to drink alot, and did some stupid things because of it, we have slept in separate rooms for 2 years because of it, and everything he did around here irked me, and I had to laugh when you said that about your hubby's socks, why can't they turn it inside out, I am the same way.. he would just have them in a ball and think I wanted to touch it or something to throw in the laundry.. everything he did irked me...

Until now.. I can't believe how he has stepped up to the plate now, and doing more for me with the kids, he is laid off, and instead of lazing around in his room playing videogames or watching TV, he is going to be busy putting a new bed, floors and paint for my room.. he has been cooking, even though it's not good, at least he tries lol...he has been kidding around with the kids more, and I'm liking seeing the connection he is trying to get with them, I feel like this is bringing us so much closer together, it's unreal.

I got scared abit ago, because as I went to the bathroom, blood came out, and I really got scared.. I can't tell now if it will be period or something else.. he called the nurse for me, and they just told me to wait till I see the Dr on Tuesday, I'm not hemorraging, but I've always had irregular periods.

I think we are learning to appreciate each other more and more, and learning about what would happen without the other as well, and maybe this is what had to happen to make us both see what anger and all can do, I will never get angry over stupid stuff again. I have the closest relationship with all my kids, they are my life, and everything I do is always in their best interest, I took them over him as well, they are my first priority, I have always taken them everywhere with me, restaurants, malls, movies, you name it, we do it, I enjoy my kids alot, and want to keep enjoying them more and more. I want to see them grow, and get married! I will see them grow! I am getting more positive as I read the posts, thought that blood thing did set me back abit, and got me scared, seems it's gone, I had 2 units of blood just put in me last week, and don't want to be losing blood somewhere again.

We play alot of board games, Clue and Monopoly are a favorite, and I been teaching them cards ...lol.. Blackjack 21 and poker!

I had to laugh about you not having to shave the other hair on your body, which sounds good to me, and someone just told me to pick up that book "Crazy Sexy Cancer" I think it's called, which she said was supposed to be funny, and will read that dr's blog.

I hate to be deprived of some good treats, my kids and I only do really eat chicken or turkey, we aren't red meat eaters here, but I know they like healthy stuff, and won't mind to eat alittle healthy, as long as it takes good, but they do like their occasional sweets. They actually aren't candy eaters, but they like pies and cakes, which is ok with me :)

I'm feeling abit better, and though sometimes at night, I lay there with my head spinning at all this, alone, I scare myself..that maybe I'm fooling myself and it just isn't going to happen, that I'll get better, but when I come here, I feel like I'm so wrong, everything will get better! Thanks so much to all of you for helping me through this!!

~Donna

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Hi Donna,

I'm sorry I missed your post when you originally posted it! You've been through so much and you're being so brave! You're an inspiration!
I too went through the "husband thang" but he was actually my boyfriend at the time. I was actually figuring out how to leave him when the cancer hit. We'd been living together and our kids love each other and it was going to be a sticky, painful, messy extracation and I didn't have a clue how to go about getting out. The cancer hit and I remember my first thought when I woke up from surgery and saw his face was, "heh, wonder how long he'll stick around." I tell ya, I've never seen anyone do a 180 faster than my now husband. He was there for me in ways I never even thought possible! When I got home from the hospital, that very day he gave me a ring. When I got news of the third cancer he looked at me and the first thing he said was, "well, shall we get married today or tomorrow?" It took me awhile to be well enough to actually get married, but we got married two weeks after he asked me. He's been wonderful ever since! He told me he was embarrassed that it took a possible tragedy for him to realize what he'd almost lost. I'm really glad your husband has stepped up to the plate too!

Glad to have you here!

Hugs!

Jorie

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Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

That bath sounds wonderful. I am not even allowed to shower till Sunday, till this mediport heals, and not get the site wet, but I can sure sit in the tub and just soak, and try not to get it wet...

OK, the way I copy and paste off the site, I highlite the link, by holding the left clicker of the mouse from beginning to the end, which will "Highlite" it, then right click on the highlited area, and another menu should come up, and hit "Copy" then go to your browser at the top there, click it, and then another menu should come up and hit "Paste" and boom! the addy should lead you to the way :)

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

Right after my colon resection, a friend gave me a paperback that sounds like what you are looking for. It's called "Foods that Combat Cancer: The Nutritional Way to Wellness" by Maggie Greenwood-Robinson, Ph.D. I refer to it constantly for the fiber count in foods since I'm supposed to eat 25 - 30 grams of fiber a day.

About a month after my surgery, I met with a nutritionist at the cancer center. She gave me a lot of good advice and information. She suggested ground flax seed rather than the oil because the flax seed is better absorbed by the body than the oil. I was still in so much shock from my diagnosis (I felt like I'd been hit by a train) that I had the nutritionist write down everything she wanted me to remember.

When church shopping you'll know when you find the right one. Just pray about it and God will lead you to the right one.

Joy

mono5
Posts: 98
Joined: Jan 2009

To take a link off the message center and open it up, or to post it somewhere else.... left click at the edge of the link, swipe it(blue it out), right click on it, left click on copy,
Move curser to address strip at top, left click again (blue out), right click there, left click on paste. Than hit enter..... to open that link.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Saw this one alittle late, after I just showed Nana as well lol...

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

You are amazing people. You have all chosen hope and to take the best out of this. Donna, I know what you mean about your marriage. Things have been good with us all along but since Dick's diagnosis 1/12/09 Dick says it is like we are newlyweds again. Interesting how something so difficult strips us down to the basics; love, family, friends, God and enjoying the beauty in life.
Take care.
Kathleen

mkkuehn
Posts: 6
Joined: Oct 2007

Hi Donna,

I am new to this site also. I was diagnosed in 2005 with stage 4. I got opinions from 3 oncologists and choose the one that I could trust and felt comfortable with. I thought I was stuck with the doctor that diagnosed me. Since then I have had 32 chemo treatments, 6 weeks of radiation and 3 surgeries (2 lung and a resection), I now have a colostomy bag. It was hell but I made it through. I learned alot about myself during this time. I have been cancer free since last March. If I can do it, you can do it.

mkkuehn

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

You were so blessed, and still are, I have alot of hope when I come to this site, and sometimes alone at night, I think, "maybe I'm just false hoping, maybe it won't happen for me" the doubts start to seep in and then I find myself bawling like a baby again, but try to snap out of it..I know the cancer is already trying to take me when I start thinking those stupid thoughts, and then do my turnaround, "No way am I going to let this take me yet, I will do what I have too, I will fight"...I sometimes feel like Sybil now, dealing with all these personalities I never thought I had lol...talking and fighting with myself!

I was also wanting to leave hubby, and wow.. he is amazing, and surprising, I really didn't think he'd have it in him to do all this stuff for me, and he's so laid back.. that was an awesome story getting married 2 weeks after he asked you, brought tears to my eyes! I am glad that we're happy again, and upset that it had to take this to bring us closer..that's what makes it all sadder for me, those years of being so angry, and here I am sickened with this stupid disease, and needing to fight to stay alive so I could enjoy him again!

I actually am looking forward to my first meeting with my oncologist and discuss my plan of care.. I am wanting to just fight now, and not wait any longer!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

something for the "ouch" of accessing the port... I was given a prescription for a cream called "lidocaine and prilocaine cream, 2.5%". I rub it on my port area about a 1/2 hr. before going in for chemo. Sometimes, after a while of getting chemo, the skin over the port can become leathery, making it difficult for them to puncture you- that hurts! That's when they gave me this cream. It not only helps numb the area, but it softens it too.
It's worth asking for it! Good luck on that!

Lisa

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