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This is harder than I thought

gwj7
Posts: 21
Joined: Jul 2012

If anyone remembers, I am the 18 year old son of my 55 year old mother with colon cancer. She was diagnosed in late July this year and by the looks of it, it seems to be pretty advanced. She's currently receiving chemotherapy at Memorial Sloan Kettering hospital in NYC. I'm pretty sure her chemo regimen is folxox, oxaliplatin, and another one. She goes every two weeks and takes homes a 48 hour pump of chemo too. I don't really know all the details and that scares me, but I also don't know if I wanna know all the details.

Last week was her 6th cycle out of a planned 12. The third week she was postponed a week because her counts were down, and apparently she got a rash from the shot to boost white blood cell count. I'm pretty sure the 4th & 5th treatments the doctors held off on the oxaliplatin because of her count not being perfect, but this past chemo (#6) they gave her all three. She said the first one was the hardest and this past one wasn't so bad, so that makes me feel a little better. They said they'll do surgery after the chemo but that freaks me out because it makes me believe that there was so much cancer that they didn't even bother with surgery first. Or maybe they can't even do surgery right now because there is too much cancer??? I'm scared to ask but my mom apparently has a liver doctor at Memorial Sloan so I can only assume she has liver mets. Recently she's had anxiety over the scheduled first scan coming up in the next week. I don't think anyone really knows the extent of the cancer or anything, but she didn't really have any symptoms prior to her colonoscopy in July so how spread could it really be? I'm scared.

My mom has lost a lot of weight since she's started doing chemo. She was overweight when she was diagnosed but she wasn't obese or anything. I've seen her lose weight to a healthy weight in the past few years, but this chemo weight loss leaves her looking unhealthy and it's freaking me out. The doctors aren't really that concerned though (or so i've heard). I feel bad that everything tastes horrible for my mom. Does anyone have any suggestions?!?!!? She can't have cold things a few days after chemo, and she's been saying that a lot of things make her feel like she's swallowing blood. Also, all things sugary don't appeal to her. Please give some suggestions.

All my life my mom has taken care of me and here I am watching her sick and looking helpless. It's too much. My mom has smoked probably all my life, and all throughout my childhood I feared the day that she got cancer because of it. Although she wasn't diagnosed with lung cancer from cigarettes, she has colon cancer, and it's literally my worst nightmare coming true.

I have two brothers and my dad also, but I seriously feel like I'm there for my mom most which I am not okay with. My brothers (one 18 and the other 23 living at home first year out of college) don't really acknowledge the cancer which i don't believe is how this should be handled. My oldest brother living at home doesn't keep his room clean and it stresses my mom out, and it's little things like that, that make me scratch my head and wonder if i'm in this alone with my mom. My dad is definitely there for my mom, but I feel like sometimes he doesn't treat her with the love that she needs right now. My twin brother seems to be too self absorbed attending college in NYC to really give my mom the attention she needs. He calls her and visits, but he could definitely act more maturely about things and not stress my mom out. I've tried talking to him about this a few times in a non-confrentational way, and he completely shut me up and told me to never tell him what to do again.

I'm currently living at college a half hour away and i've pretty much given up my social life in order to come home every weekend and be there for my mom if she needs me. She denies it, but I KNOW she loves when i'm home.

Thanksgiving was a lot tougher than I thought it would be. A lot of my mom's siblings live across the country, so they finally saw her since her diagnosis and it was just really sad. Normally in my family we have the best time at Thanksgiving, with about 50 people every year and it's so fun. This year the general consensus from all my cousins was that it definitely wasn't as fun and I think my mom's situation is why. Whenever my aunts and uncles asked me about how everything was, I answered as if I was okay and that nothing was wrong. I sort of hate school and i've realized that i'm not a "college person" but I won't drop out. When my family asked about school I pretty much said it's all good. Whenever my mom was brought up I acted really positive and pretended like I was okay but I truly wanted to just break down and cry. I wanted to go back to when I was younger and cry to my parents and eventually everything was going to be okay.

I feel like i've been sheltered all my life and suddenly, right before i'm about to leave for college, my mom gets diagnosed with horrible cancer and I my worst nightmare comes true. I feel like I can't relate to anyone at school because sometimes all I do is think about my mom and i'm not fully concentrated with making friends at college because of that.

The other night me, my aunt, and my mom were in my living room at home talking about everything. While she lied down on the couch in tiredness from chemo, she told us how she was scared about everything and she hinted at probably dying from this eventually. I got that sinking feeling in my chest/stomach and I just wanted the sun to blow up right then so none of us had to deal with this anymore. She was crying and talking about how she doesn't want her kids to grow up without being there and it made me realize that i'd be "one of those kids who's mom died" and it freaked me out. This isn't supposed to happen to people until they are older. Why is the world so messed up? I repeatedly told my mom "stay positive!!!! Don't let that stuff enter your mind because it's not going to happen!!" and I felt so helpless and messed up.

Through various forums i've heard of the later stages of this disease and I am so scared for that happening to my mom. She is such a lively person and she is the foundation to my life as I know it. Picturing her in a hospital bed really skinny makes me wonder if I could actually live beyond experiencing that. If she were to actually die HOW could I possibly ever be happy from that???? I am freaking out help

Lovekitties's picture
Lovekitties
Posts: 2992
Joined: Jan 2010

The American Cancer Society has support groups for not only the patient but also the family. It sounds as if you and your family should look into this.

A cancer diagnosis brings our mortality to the forefront. Yes, it is scary for patient and family. Each person finds their own way to deal with it.

As for you mom, she needs to talk to her doc about her anxiety. They may have various options for her to consider.

There is nothing to be gained by picturing or imagining the worst will happen. It only steals moments in time when you all could be finding joy in life. It will not change the outcome.

I hope that all of you can find the emotional support you need to be able to deal with this and that your mom has many more years with you all.

Marie who loves kitties

gwj7
Posts: 21
Joined: Jul 2012

My mom has seen the hospital's psychologist but she didn't think it helped much. She is also prescribed ativan for anxiety and she takes it a lot. I think she lets her mind race with all the possibilities and it freaks her out.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

I've been dealing with Stage IV CC for a very long time. The toughest time was the beginning for me. Marie offered some really great suggestions I thought. One thing that helped me a lot was seeing a psychologist on a regular basis. It really helped me deal with what was (and still is) going on with me. It might also be something you may find can help you.

I don't know if there's anything you can do about your brothers or how anyone else handles this, we all have different ways. Some folks can't seem to deal with it I've found.

If this is of any help, I've been under the care of Dr. Kemeny at Sloan Kettering since February 2004.
MSKCC is a great facility and Dr. K's been great for me. I owe so much to her and to Sloan.
-phil

steved
Posts: 836
Joined: Apr 2004

Thank you for eloquently voicing a lot of the issues that young careers face when cancer enters a family. You are not alone in these and many of th e themes and issues you raise are universal- dealing with the different ways family members react, balancing how much of the other parts of your life you should give up, fear of knowing balanced against the destructive effects of not knowing things, mortality, anxiety etc. in truth many of these issues sort themselves out within people and within families but when they don't then it is useful to consider professional help.

My sense from your post is that you arent necessarily mooring for solutions to your dilemmas knowing that there aren't easy answers but benefit from off loading them in this way which is exactly what this site is for. However, the feelings you have that you can't really talk to your family about this without conflict makes me think you would benefit from some form of counselling yourself. Having a space to go and off,pad and discuss these issues, trying to find some structure and solution to the mess of problems and feeling s you are facing would help. My wife has been seeing a counsellor in a cancer charity for a year now and has found it really helpful especially as it means she doesn't have to dump her issues on me as the patient (which is always one of the hardest dilemmas of being a career).

Sorry no answers to your problems from me but do consider this as Marie and Phil both got the same sense from your post,

Steve

jen2012
Posts: 1251
Joined: Aug 2012

I remember you....your moms situation is very similar to my husbands. He just had his 6th treatment and is going for a scan on Friday...its nervewracking. Hes doing the same chemo as your mom...assuming the other thing she is on is avastin. He has only had avastin 3 times due to issues.

I'm sure thanksgiving was tough for your mom. Its hard to stay positive all the time but I have a feeling no matter what she says she is fighting with everything she has to be with you guys. Try to give your brothers a break but definitely remind them to keep the stress down.

Going to give you the advice I keep giving to myself....so hard to do but try not to worry...it wont change anything. Enjoy each day and make your mom smile. I do know how hard that is. You need to try to get out with friends...being around others seems to bring our spirits up.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

What the kiddies woman said above:

There is nothing to be gained by picturing or imagining the worst will happen. It only steals moments in time when you all could be finding joy in life. It will not change the outcome.

I think this is the primary thing that I kept in my mind over and over again when I was going through treatment and my family here with me. The fear of the unknown robs all of us of snippets of memories and surely is wasted time! I know it is where you are at and I do know it is hard.

I am the mom with 3 kids who were 22, 20 and 16 when I was diagnosed. I know this was difficult on them, but I also knew we would get through it. I had my own mother basically move in with me (oh boy what a trip that was, lol) and my own sisters took turns giving her breaks as well as coworkers jumping in and doing all kinds of things. They all lived 3 hours away, my kids were the constant steadiness in my life. Their school, friends, movies they were watching, dinners they had, just hearing them laugh in the other room gave me such peace. 4.6 years later, my daughter now telling me how difficult it was for her. But we made it, they made it, I made it. Our lives were changed forever, in very positive ways.

You may need some help getting there, most likely through a counselor. Try seeing what they have available for counseling at your college?

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

you could ask your Mom if you can be added to the hippa. that way you can talk to her onc, get all reports & info you want. having the knowledge might make you feel some control instead of feeling helpless. sometimes in families there is only one who is strong. that is hard but if it is you please accept the "honor". in my family of 6 kids i am the strong one. some people can not face reality so they shy away & that can cause hard feelings from the strong one. i am being treated for metastatic colon cancer. i was dx dec 2010, did 12 tx, & was ned until this june 2012. an onc who was covering for my onc who was on vacation, said i had 2-3 months or maybe 1 year if i did chemo. well i am still here! i went to ohio state & university of cincinnati,ohio for opinions & my onc & all disagreed with him. my last scan showed all areas except the rt ovary ( which they think is now a cyst) had decreased by 1/2. and the liver cancer tumor is gone. do not give up!
hugs
judy

davenpok
Posts: 1
Joined: Nov 2012

I read your post and can appreciate what you're going through. I am 53 and currently dealing with stage III rectal cancer. I have a 19yo daughter who is pretty much AWOL and I live by myself. I commend you for helping your mother and stepping up. People deal with these things differently, it doesn't mean they don't care, they just may not be able to cope. I lost my mother from metastatic colon cancer so also have the experience of dealing with my own mother's illness. Hang in there and maybe try to join a support group. I can understand you feeling alienated, I do too, people don't know what to say. Try to get some time for yourself - take a walk and know that you will never regret helping your mother, only what you didn't do.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

You know I can relate to your situation. From the time I was 13 my mom was dealing with Breast cancer. What I can tell you and what I believe in my own experience is that yes this disease sucks.. but I and neither did my MoM want life to stop for anyone. She wanted me to go on with life and do the things any child without a sick Mom would do.. So by you not experiencing the college life fully is probably not really making your MOM happy though she may not be actually saying it this way. Remember you only have ONE LIFE TO LIVE.. enjoy it. Your MOM wouldn't want you to miss a moment of it..
I know this may not seem sympathetic. but truly I am .. I know what it is like to have a sick mom and wanting to help.. but you are a kid.. do what kids do.. enjoy the college experience.. I am sure she wants you too.. I am sorry you are having difficulties with your brothers but only they will have to answer for their actions sooner or later...
But truly I mean this with all the respect in the world.. Honor your MOM and remember to live... she really wouldn't want you to miss a thing.. and would give anything and everything to see her children living and enjoying their lifes.
Donna

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

One thing I always remind myself and my family (wife and 6 kids, 15-4 years old) is that we are all eventually going to face death, but I will likely face it sooner than we expected. It helps me to remember we all will eventually die, which lets me concentrate on living what time I have as well as possible. You are in a tough spot, and I think it can be much harder on the family of the patient than it is on the patient, so don't be afraid to seek help if needed. I would recommend that you inform yourself on exactly what the doctor's are recommending so that you can seek other opinions if needed/desired. One thing I have learned is that you, or a family member, needs to be a strong advocate for your (or your family members) health. Best of luck with your mother's disease and treatment.

BTW, doing chemo before surgery is very common nowadays, so don't freak out about that too much. Also, Sloan-Kettering is one of the top cancer hospitals in the US, and even the world, so she should have access to ALL the latest treatment options and clinical trials.

Tedd

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