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Need Help with my emotions!!

dsmegnky
Posts: 33
Joined: Apr 2007

I am not sure how to start this so I am just going to start writing... I am just so full of emotions right now I could just scream, I could not even think for a minute what my dad is feeling right now having to go through all of this. I feel so bad for him and he is just so tired, I just hope he doesn't give up. I know that he is so tired of going to the Dr. and getting poked all the time, plus the not eating so he can get ready for all the tests. I just don't want him to give up hope.
I have been on here now for a couple of months talking to everyone on here and you all are so nice and helpful. I really was feeling pretty good about everything until today when I talked to my sister, now I feel horriable. Our dad is 76 years old and has always been a go getter and now he is starting to slow down and it is so so sad to watch. We are such a unusually close family and we do a lot together and talk on the phone several times a day. When I talked to my sister who wasn't very hopeful for my dad it really broke my heart, because I really thought he could make it though this with us by his side. My sister has a friend that is a Dr. and he said that the out come doesn't look good at all, but he isn't a cancer DR. either. I said that I have been looking stuff up on the internet and she said you can't believe everything you read, but I can't see how she can go by what he says if he isn't a cancer Dr. I think that they already have him dying and I am not ready and I am not going to let that happen without helping my dad fight this!!!
Like I said we are very close, but since she is thinking about it in a diferent way she is having a very hard time trying to deal with this and she said that she is trying to deal with this in her own way. I guess I just don't want to be dragged down, but I also want to be there for her to help her with her feelings as well. This is so hard for me, because I have always been called the mom and dad to everyone because I am always trying to help which really wears me down. I also have 2 smaller children that I homeschool and that keeps me busy, but I also need to be there when someone needs me too.
Now I am not sure what to think about everthing, I am so scared. We did get his last CEA results today which were a little scary 26.2 and his one from last month was 12.6. I am so upset at his last Dr. right now that I don't know what to do. I feel he waited to long to do anything, because he was moving to CA. He would always say well lets wait and see what it looks like next month and we never knew any better since we didn't know anything about cancer. I know that we can't worry about the past since we can't change it, but it just really upsets me because it is my father not his and I am sure he wouldn't want someone to do that to his father. My dad don't deserve this he has been through enough in his life and then to turn around and have to deal with this. Why does stuff like this have to happen to all the good people in the world? I just don't get it!!
Then I have to tell you that he isn't even worried about himself, he is worried about my mom and who is going to take care of her when he is gone. Plus he is sad that he won't be able to see his 2 grand kids grow up. He is a very selfishless man.
Could someone please give me my hope back, so that I can be strong for him again? Like I said I was doing really well until today. Does anyone also have any advice on how I can help my sister get through this too, without getting me down?
One final question and the answer has to be the truth, what do you think about my dad's CEA level, will the chemo help him or is it to high to come down?
My dad had colon cancer that went to his liver and now he has about 8-9 liver mets. He just had a PET scan done today for the first time, we hope to get the results back on the 11th. We go in at 8:00am to have his port put in and it is 1:40am now so I better go to bed.
Sorry for this long letter, Thanks for listening.
Dana

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

Dana,

I understand how you feel. It's hard to see the people we know to be strong suddenly begin to appear helpless. I was stage 4 a little over 5 yrs ago. Today all clear. Some will argue that being younger helps bounce back (33 @ diagnosis). But I believe a lot of trust needs to be put into attitude as well. Everytime your dad sees your kids, that will give him new hope to fight. Personally, I don't always believe what doctors say. They appear to be experts at giving "odds" regarding prognosis. The bad part is that their statistics are often outdated. They sometimes fail to realize that everyone is different. There are cases of stage I with negative consequences as well as cases of stage IV with great consequences. I believe you cannot solely address the stage of the cancer, but also the individual's attitude and support system.

I suppose if this was my dad, I would do whatever I could to expose him to as many options as possible. People can actually live "normal" lives with cancer. Just because it isn't gone entirely doesn't mean he is doomed. As long as things are not progressing, I firmly believe that there is a great chance of living.

My heart goes out to all who are still very active in this fight. Do your best to remain positive, even when the battle seems overwhelming.

Hugs,

Stacy

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

dems some pretty good words from Ms Stacy. I have often wondered if it as hard on the cargivers as it is on the person fighting this beast. Dana, I am also stage IV but have had multiple reoccurances. My Doctors look at it as a progressive diease. I look at it as opportunities for life every time i get good news and only look at it as challanges in life when the news is not so good.

I have no idea how your dad will do with his cancer but I do know that getting your attitude in check is the key to happiness. Your dad owns his journey just like you and your sister each have your own. You can show your sister how great it is to have hope. I don't know how I would get through a day without believing that there is hope that I will live to see my children grow up. If i don't, I will be sad, But I will also know that every day, even on crappy days, I had a choice to celebrate life and that is what I choose to do. You can do the same.

If you choose to celebrate and enjoy your time with you dad, it will always last longer. for the record, my cea level does not work. they stopped checking it because it never changes more than a point or two. It is only a guage and can be incorrect. There is alot of crap on the internet, but there is also gome good information. I think one thing to remember is that the results that are happening with stage IV cancer patients are not even close to catching up to what doctors are saying. The statistics are so new they have yet to be compiled on how many people are living.
Stay strong and celebrate what is good today.
Limey.

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

My CEA the 2nd time around was up to 66 before I started chemo again. I'm now in remission for the 2nd time so don't give up hope and ask your sister not to either. It's ok to be scared but keep the faith!

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi Dana,

I think everyone had great things to say. Everybody has an "off" day sometimes whether it is a care giver or the patient. Cry a little and then get right up and start fighting again. There is always hope. I believe someone I talked to said there is always hope as long as I'm not horizontal and 6 feet under. Or as someone here said, Always hope as long as you are breathing. Your sister might need to talk to a concilor to help her through this. A good way to help your dad is to talk to him about his fears. Also try printing some of the webpages out to have him read. Some are very inspirational. Also anything we say to your posts might help him knowing that there are others that also are going through this and he has friends here that are keeping him in our prayers. HUGS and know that all the emotions everyone is going through is normal.

Lisa F.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi there! Maybe reading some of the posts below will give you hope! Read alta29, she's stage IV and her doctor says she may be cured! Take a look at the post about the Sir-spheres, another option for people like your father. My friend Suzanne had inoperable liver tumors along with other metastatic sites and she had Sir-spheres. She has survived 8 years and has seen her two daughters grow up. One is in college and one just graduated! Then read about RunnerZ, a 8+ year survivor. I myself had liver and lung mets and have been NED for over 2 1/2 years now.
So, see there is hope. There is not any need to give up. Think, if your father fares as well as Suzanne or RunnerZ he will be well into his 80s by then!
Your fathers fears of leaving his wife behind and not seeing the grandkids grow up is totally normal. I felt the same way, my biggest fear was leaving my husband alone. His mother passed away when he was 13 and all I could think of is why is this happening to HIM? I did not really care about myself either. It is very important for you all (you and your sister) to remain positive around Dad. I know it was very infuriating for me, as a patient, to have my mother being all dramatic and acting like I was going to die. If you have these emotions, please try not to act that way in front of Dad. He needs you all to be positive. No one deserves to go through this and I don't know why it has to happen to so many good people, but there is hope and you just have to hang on to that. He can live many more years, but attitude is paramount. His CEA is not that high. My onc nurse told me some patients have CEAs in the hundreds.
Good luck and try to keep your chin up!
-Susan

sladich's picture
sladich
Posts: 430
Joined: May 2007

Dana,

Ditto on what everyone else has said. Hang in there. There's hope. I've had 2 recurrences in the liver. It's been 2.8 months since diagnosis. Stay strong.

Debbie

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

my CEA was 85 in Jan. Down to 45 in April. OFf chemo for a variety of reasons for 6 weeks. It went up to 65 in May. Still at 65. I haven't given up hope yet.
If I can't get it down, I at least plan to keep it at this level.
Mary
Mary

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

Poeple are stronger that what we think....but he has to believe...if you are not happy with your Dr. look for another one....I was just ready for surgery tomorrow...went to another surgeon and cancelled everything to have this new surgeon do my surgery.. ( I guess the other one is not very happy right now) He might be a lot stronger that what you think....Colon cancer prognosis have change a lot in the last 2 years...

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi Dana -

I think everyone else has given you some good advice.

I just wanted to mention that since your sister's doc friend is not an oncologist, you (and she) should not listen to the dire predictions. Most physicians who don't work in the cancer field are not much better informed than the average person who thinks of cancer as an automatic death sentence. Interestingly, I just returned from vacation where I met a "cyber friend" of my husband. This guy is a 64 year old internist and a 9 year non-Hodgkins lymphoma survivor. He said that he knew almost nothing about cancer and the available treatments before he was diagnosed and still knows little about cancers other than lymphoma.

I wish your father the best. It is very important to be positive around your father and please, please realize that there is much to be positive about these days.

Take care,
Betsy

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

There are great messages here already. There is always hope as long as we can pull breath into our lungs. As others have pointed out, statistics are very outdated. Yes, your father will have a hard journey, but I wouldn't be ready to give up yet. Is he a candidate for surgery?

Doctors may have some pretty good ideas, but they can never say with absolute certainty the future. Even if your father is not at a curable state, there is no reason that he can't live a full life with the disease in control.

In regards to CEA; I have seen much higher numbers on this board from people who have and are successfully fighting the beast. I wouldn't rest hope solely on the CEA.

Second opinions are often valuable. Especially if the doctor is not measuring up to your standards.

I would recommend picking up some books on cancer. Do a search on this site to find some recommended reads.

Your family is in my prayers.

Tricia

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Dana...
There is little I could add to what's already been said. Having this place to vent and share is probably some of the best help available to deal with your emotional stress.
It's also helpful to know that you are doing all that you can. It sounds like your Dad is now getting good medical advice and treatment so you can rest easy around that. The chemo regime that you mentioned earlier is probably one of the most up-to-date and effective protocols. Now is a time to support your Dad through his treatments and see what comes.
Cancer's a family affair. When one member suffers... all suffer. It sounds like you are blessed with a close family. Your honesty with each other, willingness to accept differences, and abilty to remain somewhat "non-anxious" will help you to provide a healthy environment for your Dad's journey, wherever it may lead. You'll need to be intentional about your own self-care to avoid an unhealthy stress load and caregiver burn-out.
"Why does stuff like this have to happen to all the good people in the world? I just don't get it!!"
You're not alone here!! I'm sure this lament has crossed all of our minds at some time or another.
Hang in there Dana.

Rob
"Self-care is not selfish or self-indulgent. We cannot nurture others from a dry well. We need to take care of our own needs first, then we can give from our surplus, our abundance."
Jennifer Louden

hopefulone
Posts: 1048
Joined: Jan 2007

I agree with what's been said.Dana, There is ALWAYS hope. My husband is stage IV also with liver mets. On a chemo regimen that is working "well" right now, and mets are showing some shrinkage, but we are still continuing to pursue other options. I've recently been corresponding via email with local hospital regarding theraspheres and rfa as options. It may be a possibility . There are some additional tests required. We will be discussing with them after the next ct in 3-4 weeks. Heres, my point, if we only listen to his oncologist and looking at statistics, I don't think I could get through another day. I believe in being your own advocate. Options may be possible , or they may not be, but unless you pursue them, you won't ever know. In any profession, there are some people that are more "expert" than others. Get as many opinions as you and your Dad deem necessary. Don't give up. Believe me, I know how hard it is and how frustrating and exhausting and overwhelming it seems, but you need to still enjoy the good in life and so does your dad . If you don't , you've lost the battle before you've really begun to fight. God Bless. Keep the faith!

Diane

hopefulone
Posts: 1048
Joined: Jan 2007

P.S . as to your question about CEA. CEA is not a terrific marker for a lot of people. My husband has 5 mets now and his was 10 pre op. We don't even ask about it anymore. We rely more on what the ct's show. There have been people in the 100's range that therapy has reduced to normal and are long term survivors. If you do a search here on cea , you should find a lot of info about it. God Bless and please feel free to email me here if ever you'd like. (i'm sure we all feel the same)

dsmegnky
Posts: 33
Joined: Apr 2007

First I would like to say thanks to everyone who responded, I really appreciate it.
I have a very positive around my dad at all times and we never try to get down about the whole thing. We do talk about it but not a whole bunch, because it becomes too overwhelming for him.
I did receive a lot of great advice that I am going to use.
We are also feeling much better with the new drs than we did with the old dr. which I have a good feeling about. I know my dad is not looking forward to taking chemo again, because he doesn't like to feel so sick. But we are hoping with the new Dr. he will switch his meds around to help him adjust more and feel better during treatment. Isn't that what they normally do? I sure hope so.
Well his surgery to have is port put in today went well, he is still sore though.
Thanks so much for all the prayers and good thoughts-- I will write again soon.
Dana

dsmegnky
Posts: 33
Joined: Apr 2007

Hi again, I just want to ask another question. Can the liver mets shrink completely down to nothing or do they just shrink small enough to have surgery to get them removed?
I just talked to my sister again and now she has talked to one of our cousins who is a nurse and she doesn't show much hope either. Why does everyone have to be so negitive? I am trying to be positive and think wonderful thoughts, but with my sister thinking this way it is really hard. Plus, I am really suprised that she does think this was, she has always been really positive. It just really caught me off guard and I am not sure what to do. Plus, I don't have anyone to talk to about this, so that is why I am writing to you guys. I don't want to worry my mom or dad with this they have enough going on right now. Thanks for listening. Write again soon.
Dana

hopefulone
Posts: 1048
Joined: Jan 2007

Dana, there have been some people who have had tremendous success and their mets have disappeared with chemo , others have had surgery right away, others after treatment , others rfa,liver pump, etc. My hubby is on xeloda, which is oral pill for 14 days, and goes 1x every 3 weeks for iv infusion of avastin and oxal. So no pump. You might want to ask onc about this treatment regimen for your dad. My husband is working full time except for treatment week and after 5 treatments , having (thank you God) minimal side effects of tingling in hands/feet for 3-4 days after the iv. Everyone is different and all are in God's hands. I'm sure your cousin means well but she's not an expert(right?) There have been advances in chemo drugs and options in this area in recent years. Only God knows the outcome for sure. Keeping you and your dad and family in my prayers.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi again Dana...
There seems to be a tendency for many people to want to make there own prognosis based on various statistics, etc. I'm fortunate in that my oncologist has never made a definitive prognosis in my case. Probably because he's seen so much variation and because he knows that statistics can't predict individual outcomes. As was said upstream there have been many advances and the statistics are probably out of date.
If making a prognosis is difficult for an experienced oncologist... how much more so for those who don't have the knowledge and experience!
My motto... "Accept the diagnosis. Defy the prognosis."
Rob
"There is no such thing as false hope... only false despair!"

83popsong's picture
83popsong
Posts: 28
Joined: Apr 2006

Hi Dana - I just wanted to let you know that I was Dx'ed with 7-9 liver mets, two of which were over 2.5 cm. I had FOLFOX & Erbitux. I started chemo in March and by the end of June my liver was clear except for the two larger tumors (which had also shrunk substantially). The liver tumors were treated with RF Ablation laparoscopically, and I was out of the hosptial in about a week. I also had a colectomy to remove the colon tumor. I'm a good bit younger than your dad (42) but I really want to encourage you and reinforce your hope and positive attitude. So to answer your question, yes, liver mets can 100% resolve and changes one's eligibility for surgery.

Don't let the CEA of 26 freak you out too much. Many people have CEA's in the 100's or even over 1000. Mine never reached 13, but what my surgeon said was that CEA simply wasn't a good indicator for me. I still took any reduction as good news. Currently it's

People deal with grief and stress different ways, your sister may be being negative because she doesn't know how else to react. Most doctors are conservative in an attempt to prepare us for the worst. I personally feel that positive thinking is a tremendous tool and can impact our prognoses. Thankfully your Dad seems to have a good attitude. Maybe try explaining to your sister how difficult it is to for you to hear her negativity. If she can't be positive, maybe she can it least not bring you down. Also, please take it easy on yourself. Make time for yourself with a significant other or good friend. Go for a drink or a coffee or a nice walk. Let the cancer go for a while - it's a marathon, not a sprint - pace yourself.

Lastly, I would suggest addressing your Dad's concerns head on, that helped me a lot. If he is worried about how your Mom will cope without him, start to make a plan on how to deal with that. Be positive about it, it doesn't need to be about the cancer. If your parents are in their 70's, it just makes sense. Plans can be made without a due date... Hope for the best and plan for the worst. I was scared to make those plans, but once I realized it was prudent to do so regardless of the cancer, it became easier. Also, going through that exercise helped me realize I was more scared of the unknown than a quantified possible outcome. Kind of like finding a flashlight in the dark.

I hope this is helpful and you start feeling better. Venting here and asking for advise is a great way to get perspective. BTW, the port is a great idea, it will be much easier on your Dad in the long run. Please see the post from ChristeleB for advice on the first chemo. I think that was a few days ago.

--Eben

dsmegnky
Posts: 33
Joined: Apr 2007

I just wanted to say thanks again for all the help and advice. I have written down some ideas to ask the Dr about on our up coming appointment 6-11-07. I know that my dad doesn't like to sleep with the pump so I will ask about the xeloda pill. If anyone has more information about this before we go to the Dr. on Monday I would really appriecate it. Also if there is something else I should talk to the Dr about please let me know. I am sure he will be starting his chemo treatment really soon and if you have any information on the the chemo he is taking let me know as well. I will post that under this message. Thanks so much again you all are so helpful and so full of information.
Dana

dsmegnky
Posts: 33
Joined: Apr 2007

My dad will be taking leucovorin, irinotecan, fluorouracil (injection) and avastin. If any of you have taken any of this, please let me know how it worked for you.
Thanks
Dana

dash4
Posts: 304
Joined: Dec 2005

Hello,
You have gotten some great advice. I just wanted to tell you my husband was diagnosed in 10/04 Stage IV with liver mets and they gave him no hope.
We went to a liver surgeon- and he said we are ging for the cure. My husband had one month chemo - colon resection-liver resection-liver ablation in 12/04 and then continued with chemo till 7/05. His cancer did return-but not in th liver--he is on erbitux and irinotecan now and is maintaining.
A great website to explain all about your liver and the choices of treatment you have is: www.livercancercenter.upmc.com - If you look at that before your next appt it will give you so much hope with all the new advances in treatment out there.
Good luck to you and your dad-you're in my thoughts and prayers.
Dash

dsmegnky
Posts: 33
Joined: Apr 2007

HI again, I have another question. Isn't Liver cancer different than the liver cancer that had resulted from the colon cancer?
Thanks, Dana

83popsong's picture
83popsong
Posts: 28
Joined: Apr 2006

Yes, colon cancer is colon cancer regardless of the location. My understanding is that colon cancer in the liver is more treatable than liver cancer.

--Eben

dash4
Posts: 304
Joined: Dec 2005

Liver cancer is different than colon cancer. MY husband has colon cancer that had spread to the liver. Treating the cancer that had spread to the liver we needed a liver specialist for the surgery. Many times chemo as a stand alone is not enough to treat the cancer and until we met the liver surgeon we were not given the option for a "cure". Let me know if you have other questions.
Dash

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Dana,
I'll be thinking of you and your Dad as you see the doctor tomorrow. I did "the pump" a few years ago with a similar mix, minus the Avastin. Now I am on xeloda, irenotecan, and avastin to clean up a small recurrence (liver met treated with RFA). It'll be good to get the doctor's perspective on the difference between the two.
I hope your meeting tomorrow is positive and set's the tone for a good treatment plan for your Dad.
Peace and blessings...
Rob

dsmegnky
Posts: 33
Joined: Apr 2007

Thanks and I am praying for goog news form the pet scan as well. I will post last today(I hope) after Dr. appointment.
Thanks again,
Dana

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