What did you tell the kids?

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menreeq
Posts: 40
Joined: Fri Jun 30, 2017 10:26 am

What did you tell the kids?

Postby menreeq » Fri Oct 13, 2017 11:51 pm

I suspect this is a topic/thread that others have discussed before; please send me a link if you know of one.

My daughters are 6 and 2 years old. My older daughter was 5 when I got the diagnosis. I'm about to start cycle 4 of neoadjuvant chemotherapy (Xeloda monotherapy). We had informal consults with a child life specialist, our pediatrician friends, and a social worker at my oncologist's office. All asking the same question. What should we tell the kids?

My toddler is too young to understand, but she was old enough to know mommy was hurt and couldn't pick her up for 6 weeks. She would look at and touch my port scars. My kindergartener is very attuned to my feelings. She was pretty upset about the prep process for colonoscopy and surgery. I didn't tell her about chemotherapy -- just that I have medicines for the sickness that required surgery. Funny, we were explaining to her how I had to go to the hospital to get a sickness cut out of me. She said "you're gonna have a surgery?" Thank you, Doc McStuffins.

So what did you tell your kids? What would you advise? Any regrets?

Some day I have to tell them they need to start getting colonoscopies at age 30.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17

WarriorSpouse
Posts: 78
Joined: Tue Aug 16, 2016 9:02 pm

Re: What did you tell the kids?

Postby WarriorSpouse » Sat Oct 14, 2017 8:21 am

I am sorry to read of your participation on this forum, and the conundrum of notice to your children.

My kids were teenagers at the time of my wife's diagnosis, so we may have experienced a different dynamic based on their maturity and understanding of the constant medical appointments and recovery from her surgery.

The bottom line is that kids are very resilient and respond best when you are age appropriate honest with them. I never wanted my kids to ever hear anything out of my lips that they would later grow up to remember as being false. That said, I get it that our role as parents are to provide protection for our kids from unnecessary fear and anxiety. It is a delicate line of being honest and positive in the same moment.

It is a true balance, that is best described maybe through reading some children's books to them with maybe some similar circumstances being outlined. When my kids were that age, I found Arthur Books that covered a variety of sensitive issues and topics. They were excellent, but I am not sure if there was one about a parent's cancer prognosis. My guess is that if your work the Google tool bar well enough, something will come up that you feel comfortable with using.

Being age appropriate honest with kids, shows kids that they can talk to you about anything. The goal should be for them to understand why you may be going to the doctor, or not feel your best when you are napping; and not to scare them or make them upset that something could take away from their security.

You are operating in a new normal. This new normal is already being witnessed by your children every day. Don't mislead them, but guide them to understand that sometimes you don't feel good, and that you are seeking help from your doctors to feel better. The kids can learn patience, empathy, and good caretaking practices like, eating healthy, getting adequate sleep, and maybe getting your pulse rate up with a good exercise routine. All good and healthy things for kids to learn from their Mom.

Don't dwell on 30 year old colonoscopies for them... Live life in the current for them. When they get to their adult years, doctors will ask the right questions and their medical files will dictate the adequate screening. Take small steps first and get them to their teenage years. Transition as you get years of survival under your belt, and they get older and more understanding to their Mom's circumstances.

The more you put into the relationship now, the more it will make sense to them as they hit their teenage years. Teenage years the kids may listen, but they will also test you in a variety of ways. A good foundation set up now will help you in the next decade if your prognosis changes in any way. Every drop of parental equity will pay off big dividends as your kids get older.

Good luck in the raising of your children... It is the best job my wife and I have ever had!
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

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WriterGirl1969
Posts: 453
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: What did you tell the kids?

Postby WriterGirl1969 » Sat Oct 14, 2017 8:30 am

menreeq wrote:I suspect this is a topic/thread that others have discussed before; please send me a link if you know of one.

My daughters are 6 and 2 years old. My older daughter was 5 when I got the diagnosis. I'm about to start cycle 4 of neoadjuvant chemotherapy (Xeloda monotherapy). We had informal consults with a child life specialist, our pediatrician friends, and a social worker at my oncologist's office. All asking the same question. What should we tell the kids?

My toddler is too young to understand, but she was old enough to know mommy was hurt and couldn't pick her up for 6 weeks. She would look at and touch my port scars. My kindergartener is very attuned to my feelings. She was pretty upset about the prep process for colonoscopy and surgery. I didn't tell her about chemotherapy -- just that I have medicines for the sickness that required surgery. Funny, we were explaining to her how I had to go to the hospital to get a sickness cut out of me. She said "you're gonna have a surgery?" Thank you, Doc McStuffins.

So what did you tell your kids? What would you advise? Any regrets?

Some day I have to tell them they need to start getting colonoscopies at age 30.


Hi Menreeq.
I read your message and remember going through *exactly* the same thing and the same questions. My little man was 4 when I was diagnosed (turned 5 a month later) and is now 6. I think the hardest thing I dealt with after hearing that awful diagnosis was the thought of what impact this would have on him, and how to deal with that. As you said, there have been other discussions I've seen on this topic, some of them really difficult to read. I remember seeing one message thread titled, "When do you tell your kids you're going to die?" that just about crushed me. But the hard reality is that we have to think about this kind of thing, and like so many other facets of this journey, learning gives you some of your power back.

I read a lot of opposing views on "tell them" vs. "don't tell them," but I think what ultimately stood out for me was a post from a child of someone who died from cancer and had not told them. In essence, not being prepared made it much more difficult for them. I saw this thought echoed by others, and it's the one that really stuck for me. Like us, having information and understanding makes it easier to process, if not to bear. Personally, I ended up telling my little man that Mommy had some "bad cells" and that the surgery was to take most of them out, and the medicine that followed was to make sure no other bad cells were left. As a boy, he liked the idea of searching out hiding bad cells and blasting them. LOL This mix of telling them but not necessarily giving them too much technical detail seems to be the prevailing response for what to say to younger children. You can probably find this thread by searching for the above title and read some of the varying opinions for yourself. We each have to come to our own decisions in this, and they have to be ones we can live with.

Like you, I also did monotherapy (Xeloda - oral version of 5-FU). Overall I'd say it went as well as I could have hoped for. I'm in my follow-up phase now, and find myself trying to pack as much living into every day as possible, but whatever the future holds I think facing it with knowledge and information is the right thing for me.

Before I wrap, I'll share something with you that a special friend by the handle of BeansMama shared with me shortly after I first joined this group, when I was struggling with how this would affect my child. She said to me that she had kids also, and understood how hard it was, but that her kids actually liked getting to take care of Mom, and that she was using this as an opportunity to show them what taking care of family was all about. Those words really impacted me and turned my perspective completely around. I had been very sad that I might not have the time to teach my son about the things that were most important to me - my faith and trust in God. When BeansMama said that to me, I realized that instead of worrying that I would never get to teach him, that this was an opportunity to SHOW him. I could be a living, walking, breathing example of trusting God and living by faith.

Whatever your personal views, faith or struggles, I hope that the words BeansMama shared with me so long ago have meaning for you. It's awful hard to find positives on this journey, but being able to view it this way was a blessing to me. It made all the difference in the world. I hope that you're able to find some meaning and some hope in those words, and that I can pass on the special gift she gave to me. I hope this info helps, and will pray your journey is as smooth and positive as it can be, and that you reach NED very soon so that you can move on with life with your special girls.

Smiles, Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

crazylife
Posts: 230
Joined: Wed Dec 30, 2015 11:29 am

Re: What did you tell the kids?

Postby crazylife » Sat Oct 14, 2017 11:10 am

We have a 10 year old and a 7 year old. Just 8 and 5 1/2 a husbands diagnosis. We have been completely honest with them about what is going on and they have handled it amazingly well. We answered all of their questions honestly.

My son asked me the other day if dads cancer was back. I said yes and we are working with the doctors to figure out how to help daddy so he can be with us for as long as possible. He did cry for a few minutes but then went back to the business of being a kid about 10 minutes later. Kids are amazingly resilient.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: What did you tell the kids?

Postby Lee » Sat Oct 14, 2017 5:49 pm

My kids were 9 and 11 when I was diagnosed. We waited until we had a pain of action (week out from diagnoses) before telling the kids, butt my 11 yr daughter already knew sometime was wrong. I tried to be honest, and up beat. I did not tell them the details unless they asked. (ie, mom is going to do everything in her power to beat this, butt would not tell them I had a 30% to 50% chance of being alive in 5 yrs).

Years later my daughter would tell me, it made her feel comfortable/better when I would talk about my cancer (where I was at on my journey) with friends in front of her. She said it made her feel like I was not hiding something from her.

Best advice I would say, don't hide it from them, be honest, try to be upbeat about it. Let them ask the questions.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

menreeq
Posts: 40
Joined: Fri Jun 30, 2017 10:26 am

Re: What did you tell the kids?

Postby menreeq » Sun Oct 15, 2017 12:19 am

Thank you all for sharing your experiences and advice. We also were advised to be open, honest and age appropriate. It's this last one that I tread carefully with. My 6 year old is very verbal and picks up on a lot. She is also a bit of a worrywart and takes quick dives to worst case scenarios. Every night she asks me if the North Bay fires will reach us. She can smell the smoke, and I have been honest with her about the devastation. She knows some of her local firefighters have gone to help. She is grappling with the permanence of death. I kinda don't want to bring that home right now.

So what I haven't said is either C word -- Cancer and Chemotherapy. She knows I had a sickness. She has told her friends how mommy was in the bathroom for hours, lol. She knows I'm taking medicine for this sickness and it makes my hands and feet hurt. I haven't used the words because I think she is still too young. She repeats a lot, and I think that I am more concerned about how other adults will respond, and that she will pick up on their concern. I am rolling with the idea that I am cured (my preferred C word). But if she tells her teacher or a friend's mom, I am concerned they'll react as though I'm dying right now. Y'all know what I mean, right?

WriterGirl, I saw your original post and BeansMama's response last night when I was searching the forum. I also liked BeansMama's perspective. I've been following the updates on her surgery and clinical course. Glad to hear she is on the up and up. I agree on the idea of caregiving. I did love watching my girls take care of me post surgery. My 2 year old's way was to say "hurt hurt" and not cry when I couldn't carry her due to weight restrictions. My 6 year old could do way more, including brushing my hair when I was resting and going on walks with me. I am not hiding that I had surgery and am taking meds. What I haven't discussed is what cancer is and that people can die from it. I think part of why I haven't is that I am living like I'm already NED. So I feel like I am not hiding anything from her. Should I need to undergo more than Xeloda -- hospital admission, SBO, port placement, etc -- I think I would approach it differently and explain more. Am I naive or overly optimistic?
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17

cbsmith
Posts: 43
Joined: Sat Nov 28, 2015 11:45 am

Re: What did you tell the kids?

Postby cbsmith » Sun Oct 15, 2017 11:06 am

When I was first diagnosed with cancer our son was 10. We told him about the surgery and then waited for the results to see how advanced the cNcer was before we told him about the cancer. He has handled the whole thing surprisingly well. We have taken him to a councilor for a few sessions just to make sure and they also said he was done no well with the info.

When we told him the main thing he asked us after all the details was that we always tell him the truth. We told him we would and we have so far. Sometimes we have to skip some of the details but he knows everything at a high level.

Every child is different and will handle things differently but what we did not want to happen was for him to hear about the cancer from someone else or by overhearing a conversation.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

kandj
Posts: 200
Joined: Sun Sep 27, 2015 11:29 am

Re: What did you tell the kids?

Postby kandj » Mon Oct 16, 2017 9:07 am

Our boys were 5, 7, and 10 when my husband was diagnosed. Unfortunately we had to dive right into the issue because they saw their daddy taken away via ambulance from the doctor's office (he went in on my instance, us thinking it was his gallbladder, then he passed out at the docs and they called an ambulance. We were downstairs waiting in the car for him). I was at the ER with him when we found out it was stage 4 colon cancer. our boys were with some of my friends, so I did have about a day to decide what to tell them. It was a very scary time because all I knew is he had stage 4 cancer. In my mind that meant death. The next afternoon (with my husbands parents there) I sat the boys down, told them daddy was very sick and he had cancer. I told them that we were going to do everything we could to get him better and that he had the best doctors in the world working with him. The younger two didn't quite get it. They really didn't know what cancer was. But my oldest was heartbroken. He went upstairs crying. And when I followed him and talked to him he asked if dad was going to die. I had to be honest, and I will tell you, it was one of the hardest moments as a parent, and told him I didn't know. It was a possibility but we were going to do everything we could to not let it happen.

As time has gone on we go day by day. They know that dad has chemo every other week. He comes home with a "funny bag" (the 5FU pump) and he feels pretty shitty for a few days. They also know they get their flu shots to help daddy and they make sure to ask friends if they are sick before inviting them over. They also know that daddy's cancer went away for about a year and now it is back. That was a heartbreaking talk as well. Cancer sucks. There is no way around that. It affects all it touches and it takes those we love and it takes from our lives. It steals the everyday normalcy. But, we have to fight it in any way we can. Dad is doing his part to fight it by taking the crappy medicines, and the kids and I do our parts by making his life as easy as we can.

Also, for those of you with kids, please check and see if there is a Camp Kesem chapter near you. Our kids have been to the camp twice now and it has been good for them to talk to and get to know other kids in the same boat. The counselors are amazing and so full of love for our kids. http://campkesem.org
wife to DH, Diagnosed at 36yo with stage 4 CRC August 2015 mom to 3 boys
numerous mets throughout liver, unresectable currently
Folfox +avastin aug 15-Nov 15
Lynch and MAP negative
Folfiri starting Jan 2016
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 3 Liver mets and one possible lung met. Focusing on Liver mets for now. Back on FOLFOX to get them shrunk!

User avatar
WriterGirl1969
Posts: 453
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: What did you tell the kids?

Postby WriterGirl1969 » Tue Oct 17, 2017 9:22 am

menreeq wrote:Thank you all for sharing your experiences and advice. We also were advised to be open, honest and age appropriate. It's this last one that I tread carefully with. My 6 year old is very verbal and picks up on a lot. She is also a bit of a worrywart and takes quick dives to worst case scenarios. Every night she asks me if the North Bay fires will reach us. She can smell the smoke, and I have been honest with her about the devastation. She knows some of her local firefighters have gone to help. She is grappling with the permanence of death. I kinda don't want to bring that home right now.

So what I haven't said is either C word -- Cancer and Chemotherapy. She knows I had a sickness. She has told her friends how mommy was in the bathroom for hours, lol. She knows I'm taking medicine for this sickness and it makes my hands and feet hurt. I haven't used the words because I think she is still too young. She repeats a lot, and I think that I am more concerned about how other adults will respond, and that she will pick up on their concern. I am rolling with the idea that I am cured (my preferred C word). But if she tells her teacher or a friend's mom, I am concerned they'll react as though I'm dying right now. Y'all know what I mean, right?

WriterGirl, I saw your original post and BeansMama's response last night when I was searching the forum. I also liked BeansMama's perspective. I've been following the updates on her surgery and clinical course. Glad to hear she is on the up and up. I agree on the idea of caregiving. I did love watching my girls take care of me post surgery. My 2 year old's way was to say "hurt hurt" and not cry when I couldn't carry her due to weight restrictions. My 6 year old could do way more, including brushing my hair when I was resting and going on walks with me. I am not hiding that I had surgery and am taking meds. What I haven't discussed is what cancer is and that people can die from it. I think part of why I haven't is that I am living like I'm already NED. So I feel like I am not hiding anything from her. Should I need to undergo more than Xeloda -- hospital admission, SBO, port placement, etc -- I think I would approach it differently and explain more. Am I naive or overly optimistic?


I think you have considered everything and done just right for your girls. :)
I agree with you in that saying the actual words might generate a response if repeated that would overwhelm or concern them even more. I had this same thought with my (then) 5-year-old, who is old enough to pick up on a lot of things but going through the whole "what happens when someone dies" phase also. I also completely agree on your positive approach. I personally feel that staying positive really plays into our health a LOT, and that our mind has much more control over out body than we realize. So don't make any apologies for living like you're NED. I think you're doing just right, and have your approach right for your family.

I love that your 2-year-old says "hurt hurt." Kids are so amazing. Now that my son is 6, he likes to help me out by carrying things for me, so I can see the age similarity when you talk about your daughter brushing your hair and going on walks with you. :)

Good news on BeansMama, too. She's eating, sitting up and they now have her standing and pivoting. Still guarded with a low-grade fever, but I was excited to share that update with everyone here a few moments ago. I can't wait until she's really past the danger point so that we can celebrate with her.

Keep up the good work, Mom. :)
Smiles, Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

NoFear32
Posts: 30
Joined: Mon Feb 15, 2016 11:53 pm

Re: What did you tell the kids?

Postby NoFear32 » Thu Oct 19, 2017 11:37 am

My daughters were 7 and 1 1/2 when I was diagnosed and my oldest daughter was actually in the room with us when I woke up from the colonoscopy and the GI told us I had cancer. She cried and asked if I was going to die and it was at that moment that I put my own fears aside and knew that I was NOT going to die from this and I was going to beat it and live a long life.
We did have an honest discussion with her about the 'scary side' of things I was going to have to go through (surgery, chemo,etc) but we wanted to set and example of how to stand steadfast in our faith in God no matter what happens to any of us, even during scary times. So we talked very openly with her about what it means to have faith and still love God even when terrible things happen to people we love and we feel like life isn't fair, etc.
I have to say that she did great during all of it and I know she talked about it at school to her teachers and friends and they were all so supportive and sweet to hear, so really her being able to talk with people and tell them what was going on I think only helped her not feel so 'isolated' by having a mom going through chemo and cancer, etc.
We had a lot of family support too to help keep the kids busy and the girls and I spent a lot of time anuggling on the couch together or in bed watching Netflix while I rested.
My youngest didn't really know what was going on only that I didn't feel well and would basically be my little snuggle buddy all day long. She was so incredibly sweet to me during those times I wasn't feeling well.
I've been NED since my last round of chemo ended in 2015 and life is very much back to 'normal'. We don't dwell on what happened and continue to move forward with life and remember to appreciate each other that much more.
All in all, I have to say that my young girls did very well and are growing into compassionate and caring people, so yay! :)
32 yo,Wife & Mom, ages 9 & 3
4/17/15: Colonoscopy = 6cm in sigmoid + 6 polyps
4/24/15: Colectomy (no illeo)
4/27/15: Diagnosed Stage 3b CC, 2/55 lymph nodes
May2015: Genetic testing, no Lynch, FAP, Gardners
6/1/15: Started FOLFOX - BAD reaction to 5FU, switched rounds 3-8 to combo of XELODA + OXI via IV.
9/24/15: Round 8 and done with chemo!
Nov2015: First CT scan, X-rays, blood = NED
Jan2016: Bloodwork = NED
Next up: Colonoscopy & Endoscopy, more CT scans, etc

CAGirl
Posts: 9
Joined: Fri Aug 25, 2017 4:55 pm

Re: What did you tell the kids?

Postby CAGirl » Thu Oct 19, 2017 5:34 pm

Hi Menreeq,
I am in Northern California, too. (My profile name is meant to be California Girl, not "Cancer Girl.) Berkeley. You?
My girls were 3 and 6 when I was diagnosed in February.
I finished chemo about a month ago (Yippee!)
I am reposting part of my response a while back, though editing some of it out. I do feel that 6/7-year-olds are more perceptive than we realize and that using the "cancer" and "chemo" words can demystify or de-stigmatize them. There are so many types and stages and outcomes of cancer out there. I had heard not to be afraid to use the word "cancer." Also, if it should slip out, and your kid picks up on it, there is room for more of a freakout, IMO. A friend (I met during chemo, same age as I with kids same age, same staging of CRC) said that she thought all was fine until she was lying with her boy, and he wouldn't fall asleep because he thought she was going to die that night!
I felt like I did well by preparing my daughter "some people who go through chemo lose their hair, but I won't", so that when she mentioned to her friend at school that I had cancer, who friend said I would go bald, and my daughter replied, "No, she doesn't have hair cancer." I can imagine her fears if I hadn't shared with her that detail.

Here's what I wrote on an earlier post:

I felt the same way in mid-February of this year. Being a mother tends to shift your focus a bit. I was so sad about the possibility that they would be motherless. I remember the first weekend after my colonoscopy, I felt like I was caught in a big wave and couldn't get out. This forum seems to steer clear of religious and spiritual talk, so I hope I'm not violating anything by writing that what brought me out of my initial despair was Pema Chodron's When Things Fall Apart. I am in no way religious or self-helpy, but her writing made me realize that life is about groundlessness, not knowing what awaits and "leaning into" the experiences we are having -- not as interruptions of life but as life, itself.
...
Also, remember -- for all the good people here who have stayed with the forum or checked back in to say they were NED and offer us all support and advice, there are also zillions out there who don't check in because they did their chemo, got rid of their cancer, are NED and just living their lives as survivors.
...

I do know of at least 3 people in my life who I have since discovered had colon cancer around 20 years ago and have been just fine ever since.

I also want to second that the chemo does seem more tolerable than others out there. It has been no picnic, but I got through it. And many out there did not even know I was going through it (daughter's preschool friends' parents), unless I told them. It was a relief to not noticeably lose hair (prob lost about 35% of it, but I had a lot to begin with) and have every other week be a "good" week, where I felt like I could function in the world.

Finally -- sorry so long -- I've had the luxury of doing things like sound therapy and yoga, AND my husband and I preemptively started seeing a therapist who has experience with couples going through cancer and also parenting issues. That has helped a lot. She told me if my girls (3 and 6) could get through this, they will be that much stronger and ahead of their peers in terms of coping skills and being able to deal with emotions. We have been age-appropriately sharing stuff with them: they ask to see my pump bottle to see if it's empty the day of my disconnect; know to watch out for Mama's port; and we created a lovely collage of a "Healing Tree" with 12 empty branches. Each cycle, we add leaves and other magical stickers -- birds, butterflies, flowers. It has filled out nicely -- and ONE LEFT! WOO HOO!

[As I mentioned, I am now DONE and entering the post-chemo stage. Different emotions happening now. My older daughter has brought up things like death, but I think a lot of kids think about it in an abstract way. I try to say things like, "We are all going to die sometime, and we don't know when, but hopefully we'll be around for a long, long time." She seems to buy it and has no idea that in my head, when she mentions when she has kids and I'm a grandma, I'm thinking "If I'm still here."]
Diagnosed 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - diag in 1997; in remission w/low dose of anti-inflammatory, thus no colonoscopy in over 10 years
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
Started 12 cycles of Folfox 4/17, expecting to be done mid-Sept!


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