Hi, I'm new here, but apparently my cancer is not!

[Kristaloo]

Hey, I'm new to forums and to the whole cancer thing. I'm 33, wife to an amazing fellow and mother to a 3 yr old and a 6month old and I have stage 4 colon cancer that has metastasized to the peritoneum. My first surgery was in a small hospital and the surgeon just thought it was a mass and super unlikely to be cancer, so he went right in and took out a tennis ball sized tumor that had spread out of my colon. I had a second surgery following a pet scan showing several hot spots which turned out to be in my peritoneum. I start chemo in a couple of weeks, folfiri, and am still just trying to process everything. HIPEC I'd a likely next step and we are currently researching our options for that.
I'm currently struggling with things like how to tell people about what's going on and mostly dealing with my 3 year old boy and explaining to him what's happening and why things are so different all of a sudden. Any stories, advice, etc. is appreciated and I'll be exploring the forum in the coming days! Thanks for reading and good luck to you all!

[Lee]

Hi and welcome, so sorry for the reason you are here.

If you have not all ready done so, get an opinion at a major cancer treatment center. because of your young age, you want an aggressive team on your side.

Does colon cancer run in your family? If you have sibling, they need to be checked out.

So sorry you are dealing with this, you are too young.

Butt you have found the right place for information and support.

Hang in there. Know that you are not alone here.

We have all walked in your shoes.

Lee

[CAGirl]

Hi,
This is my first activity on here, though I've been reading since my diagnosis in Feb. Thank you, All!
Kristaloo, I was inspired to finally register and post a response, since I also have been dealing with young kids. Though it's way different for a 6-year-old than 3-year-old, my methods worked for both of my kids.
Also, I recognize that Stage 4 is different from Stage 3C, but so many unknowns for us all.
Do you have a social worker associated with your medical facility? There was one I talked to at Kaiser who gave me guidance about talking to my kids.
She said to have a family meeting with no other distractions and to make my own presentation calm, since they take their cues from us. She said don't be afraid to use the word "cancer" and also to let them know nothing they did caused this. (Also, that it's not contagious, though I'm not sure your 3-year-old's mind would go there yet.)
I presented it by telling them that I'm working with the doctors to do all we can to make sure it doesn't come back, etc. (No false promises, though!) Also, I let them know there are many different types of cancers and lots of people who go through it. (I had told my older daughter that some people lose their hair, but I probably wouldn't, so that when a friend told her I'd be going bald, she was able to tell the friend I didn't have "hair cancer" and thus didn't worry, herself.)
Also, I try to de-mystify the infusion and pump-thing (I'm a very squeamish person, but we've all gotten used to the port -- and my very cuddly 3-year-old knows to watch out for it and be esp. careful when I have the pump at home for 2 days.)
Lastly, we created a "Healing Tree", with 12 empty branches. After each cycle/treatment, we add leaves (and other magical things, which they -- being way more creative and open than I -- came up with.)
I've attached a pic.
Good luck --- and sorry you're dealing with this at such a young age. I was totally blindsided (after being reassured in November by my GI doc that my recent anemia diagnosis was not indicative and that "the likelihood of colon cancer" was "very low." I've found having the kids to take care of has forced me to do this chemo stuff with a better attitude than was my usual MO.

[Basil]

Sucks that you have to be here.

It feels a little bit presumptive on my part to suggest how to parent, so I hope you don't think I'm being pushy, but I'd just tell the three year old that mommy is sick and the doctors are making her better.

My kids are a bit older (6&9) and we told them that daddy got cancer (one of their friends had leukemia so they have heard of it before) and the doctors are working to make him better.

I would also echo the suggestion of getting to a major treatment center. If you had a broken bone the risk/reward might mitigate in favor of local treatment to avoid cost and inconvenience, but you want to square off against cancer with the biggest guns possible, as soon as possible.

[NHMike]

Hey, I'm new to forums and to the whole cancer thing. I'm 33, wife to an amazing fellow and mother to a 3 yr old and a 6month old and I have stage 4 colon cancer that has metastasized to the peritoneum. My first surgery was in a small hospital and the surgeon just thought it was a mass and super unlikely to be cancer, so he went right in and took out a tennis ball sized tumor that had spread out of my colon. I had a second surgery following a pet scan showing several hot spots which turned out to be in my peritoneum. I start chemo in a couple of weeks, folfiri, and am still just trying to process everything. HIPEC I'd a likely next step and we are currently researching our options for that.
I'm currently struggling with things like how to tell people about what's going on and mostly dealing with my 3 year old boy and explaining to him what's happening and why things are so different all of a sudden. Any stories, advice, etc. is appreciated and I'll be exploring the forum in the coming days! Thanks for reading and good luck to you all!

Sorry that you're having to deal with this and raise a young child.

But it seems that you're well into the process and you sound like you're dealing with things well. There's a thread on anxiety, fear, anger, and the other emotional things that we've all dealt with and it's a nice place to vent.

I told a close friend, my family, my extended family and my manager. She told her manager and her manager asked my permission for him to tell his manager (which I assented to). They thought that I'd be out for a long time but a lot of people don't know a lot about cancer so they make assumptions as to what it means. I gave my manager permission to tell the people in my group and, so far, one person reached out to me. I think that the others are respecting my privacy or desire to not talk too much about it. One cool thing is that those that know are either getting colonoscopies that they've put off for many years or their spouses are getting them or both. One of my coworkers in another group developed cancer in last year and it's a different kind but I had a long chat with him as well. That's about it - those that aren't that close don't know unless it has spread. I go into the office a couple of times a week and I look the same as before so I think that most don't know. They might notice that I work from home a lot more now but lots of other people do that these days.

I think that you'll need to tell your son that that you're sick and working on getting better but the process for getting better will be tough on you and your husband. If you have relatives nearby, you might ask for some help (my mother-in-law stayed with us for six months twice after our kids were born) if they are in a position to provide it.

Other folks may feel uncomfortable talking about cancer with you as they don't know what treatment entails, what you're going through, and what they can do to help. So some of the work is in making them feel more comfortable while letting them know that it is a tough road ahead.

I'm taking Xeloda which is Fluorouracil in oral form and I run into side effects with it (tiredness, hands feel funny, tons of gas, constipation) though I've read that others have worse symptoms from it. I am unfamiliar with the other two drugs in Folfori so I'll leave that to others. Sometimes I feel like sleeping for an hour once or twice in the middle of the day. Sometimes I'll be fine for the whole day. These days, my rear-end is doing all sorts of crazy things because I'm also getting radiation therapy which you don't need fortunately.

[WriterGirl1969]

Hey, I'm new to forums and to the whole cancer thing. I'm 33, wife to an amazing fellow and mother to a 3 yr old and a 6month old and I have stage 4 colon cancer that has metastasized to the peritoneum. My first surgery was in a small hospital and the surgeon just thought it was a mass and super unlikely to be cancer, so he went right in and took out a tennis ball sized tumor that had spread out of my colon. I had a second surgery following a pet scan showing several hot spots which turned out to be in my peritoneum. I start chemo in a couple of weeks, folfiri, and am still just trying to process everything. HIPEC I'd a likely next step and we are currently researching our options for that.
I'm currently struggling with things like how to tell people about what's going on and mostly dealing with my 3 year old boy and explaining to him what's happening and why things are so different all of a sudden. Any stories, advice, etc. is appreciated and I'll be exploring the forum in the coming days! Thanks for reading and good luck to you all!

Hi Kristaloo. I'm so very sorry to hear you needed to find us (especially so DANG young!), but very glad that you did. There are so many good people and so much great information on this site.

When I was diagnosed March of last year (2016) my son was 4 years old, so I can really identify with the emotions and questions you are going through right now. First of all, I STRONGLY agree with all of the others who have suggested you seek treatment at a large medical center. It's not that small towns don't have good doctors, it's just that you want to be dealing with a center who does this ALL DAY EVERY DAY because they will be on the cutting edge of treatment. I think this is even more critical for stage 4, because you want doctors who are used to dealing with metastatic situations, and who can offer you things others might not be able to. Really, really important. You don't necessarily have to stay there, just go there once, get all the testing and conferencing done, and let them guide your local doctor(s) / treatment center(s) with regard to your treatment.

As far as telling the kids, that has been a topic of discussion on other threads. There's a range of feelings about what's best, but I think what struck me most strongly was a child of a cancer patient saying that their mother never told them, and that when she died they were absolutely devastated because they had no idea it was coming. For me, as a Mom, I want to suck up the tough stuff and protect my kids at all costs. My son wasn't old enough to understand too much, so I told him Mommy had some "bad cells" and the doctors were helping me to get rid of them.

It still sucked majorly thinking I might never be able to teach my son certain things, because I didn't know if I'd be around to do it. One of our dear members "BeansMama" gave me some advice early on that changed my life completely. She said that she was using this as an opportunity to show her kids what it meant to take care of family. It really flipped my perspective right around. I had been thinking I would not have the chance to teach my son about God, but I realized this was my opportunity to SHOW him about faith and hope and coping through my own experiences.

It's a scary, exhausting, daunting time. Just remember to keep breathing. More and more people are beating this sucky disease every day, and medical advances have been amazing in the last few years. So keep the faith, take it day by day, and don't let the doctors tell you that you will be anything but CURED!

Hugs, Smiles and Prayers,
Tracy