Topic: Staying Strong!

Hello everyone,

I have read and continue to read everyone's posts and they keep me alive and strong.

My name is Christina and my Fiance was diagnosed with CC October 2006 at 29 years old.  We have had a tough battle and continue to fight everyday.  At first, the doctors told us the cancer was inoperable and to go home and enjoy the rest of his time with his family (can you believe that)  I couldn't.  I went home and starting searching for doctors.  We were referred to Nicholas Nissen, M.D. at Cedars-Sinai Med. Center who took the chance on him.   The surgery was performed Jan. 5 2007.  The surgery took 16 hours (can you believe it?)  The doctor came out after midnight and told us that the surgery went well and he was able to remove the entire tumor but had to remove over 70% of the liver so recovering was going to tell all.  Well, after 4 months of infections and stress in the hospital Chucks was released and has been doing well every since with the occasional trip back to the hospital.  We have had follow up cat scans that show no sign of cancer.  The Dr. says he would do it all over because of Chucks survival.  He is a miracle.  I tell Chucks he should feel blessed that a Dr. would take a chance on someone else because of him.  It almost makes me want to cry.

I am soooo happy but worry a lot.  During surgery they pulled 13 lymph nodes.  Two of them were positive... now, normally I think procedure would have been to perform surgery and within a couple of weeks start chemo to kill any cells left in the body but for chucks he was too busy fighting for his life.  They couldn't do chemo because he would of died, he was just too weak.  I am soo scared it will return and I am even more scared to express this to Chucks.  I want so bad to be normal... you know? I hate that even though nothing is showing up on any cat scans... All I can think about is the cancer that might still return.   I hate that it sometimes take me over and makes me feel helpless even now.  I thank God that he has given me Chucks, my gift in life... LOVE. I am 23 and he is 30 years old.  We were just starting our lives together and now I feel this uncertainty.  We recently got engaged and I don't want to be left alone.

I feel like a bad person.  So much good has happened and all I can dwell on lately (in the last couple of months) is the negative.  I feel depressed and weak.  I am scared to do the normal things that I should be happy about like getting married or having babies (can you believe that?)  I am just scared to do it alone, to be without him. 

I am sorry for the long intro!  Thanks for reading.

Re: Staying Strong!

YOu are not a bad person, you are normal, this disease is overwhelming whether it is good news of bad news, but remember that good news gives the rest of us hope!

Re: Staying Strong!

Chrissy....  Your feelings are quite natural.  Everyone associated with this disease goes through all the what if emotions.  Yes your a young couple just starting out.  You have been through quite an experience to say the least.  I'm sure you have been chucks rock during these tough times.  Cancer is scary no matter how you look at it.  This coming March 16th will be my 9th year fighting this horrible disease.  During that time the love of my life has been right by my side thick and thin.  She and my kids and grandkids have been my rock.  I have sold three homes and bought two and moved across the US twice and started two new jobs in these nine years.  As far as I'm concerned still going strong.  We all know (family) that the day of my departure could be tomorrow or years from now.  I insisted life goes on regardless.  We will not be held captive by this cruel disease.  Chrissy, I guess we all have different thresholds of tolerance in life.  I'm sure you feel if you told chucks what your thinking would crush his will power to push on.  I also sense that although you love him dearly, deep down you want more certainly out of life and your future.  Well, Chrissy there is no certainy in life except for birth and death.  Except between these events is a realm of hope , love, and the building of togetherness.  You know although I've been fighting this disease for almost nine years, it has not been all consumable of the disease as I already mentioned.  I guess I would be considered the lucky one for hanging in there for so long.  I'm greatful to the lord for letting it happen but it has not been a bed of roses and I often wonder why me.  Chrissy, I feel like I'm giving you a fatherly lecture and shouldn't be rambling like this.  I have always felt honesty is the best policy, especially with emotions.  I would talk with chucks and let him know your feelings and how scared you are.  Maybe you can visit a local support group and share your feelings with them before hand.  Hopefully they can share some experiences and help you with your struggle of negative thoughts.  It's not easy giving any advise of this nature as I don't personally know either of you.  Maybe you have seen another side of chucks you didn't know that exisited.  Chrissy, again I would get some one on one or group counseling to search out your true feelings for chucks and the future.  Two things I will say, is true love can provide guidance but is it the kind of love that will see you through. Also, living a life with uncertainy of commitment and openingness will without a doubt lead to misery.  I hope you can work this situation out and make the decision you feel is right.  I know if I was Chucks I would want to know how you felt and not start off togetherness with faslehood.  Human emotions can be quite a complicated arena Chrissy; so don't feel guilt or your a bad person.  Just work it through hopefully with Chucks and I'm sure you both will come to the right conclusion as to what the future holds for your relationship.
God Bless You Both,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Staying Strong!

Thanks Jeff,
I needed that "fatherly lecture" too.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Staying Strong!

Hi Jeff,

Thanks for your words but I think you might of misunderstood or maybe I misunderstood what you were saying.  I love chucks and there is no one else for me.  I would never think about leaving.... If I had those thought I would of never spent 5 months total of my life in the hospital.  I would sleep in a chair and leave at 5 a.m. to go to work and then leave work at 4:30 to try to beat traffic and do it all over again.  He is where my home is and if that is in the hospital.. then that is where I will be.

It's just lately I have felt uncertainty about life altogether.  I am afraid of doing things and being left alone. I don't want to tell him how I feel because he is trying to come to grips with this illness himself.  He gets very angry and doesn't want to talk.  I know it hurts him to hear that I feel this way.  I am always the strong one with the positive attitude.  I am the one who never laid down, who didn't listen to what the doctors said because if I had he would probably not be alive today.

Re: Staying Strong!

Chrissy,  Life is great.  Thats why all of us on this site would like to see the miracle cure or at least extend our lives to be with our loved ones.  Like I mentioned you have been through quite an ordeal.  It has taken a toll on you physically and mentally and has scared you of the future.  Chrissy don't let this disease hold you captive and suppress you happiness and love of life.  It's understandable for Chucks to get angry and not wanting to talk about it.  He himself is uncertain of his feelings and wants to do the manly thing and push on and be the strong.  It's normal not to want to talk about the scary posibility of the disease returning.  I would still recommend attending some support groups or counseling to help you work through your fellings.  These support groups are people just like you who are willing to share and learn coping skills.  You can't do it alone chrissy or it'll eat away at you.  These support groups are very friendly and supportive and don't cost nothing.  You are an amazing young lady and I'm sure the rock of Chucks life.  Try a support group and give chucks time to process the reality of all this and time to regain some focus of life himself.  A good support group would be great for him as well, but he has to be ready in his own mind. At this point and time he may not feel he needs any help.  Chrissy having this disease and living with it can be quite a struggle on the human mind.  Emotiionally you need an outlet and be able to express.  I consider a life as a gift and isn't really that bad. I say that today despite my disease and am going to live life to the fullest even if it is just for a little while or hopefully a long while.  I wish You and Chuck only the best!
God Bless!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Staying Strong!

Thank you Jeff!

I agree to the fullest.  I wish he would go with me to some type of support group but right now he is not ready.  I will look into it for myself because I really do feel that it has begun to eat at me.  I feel so helpless at times.  I have just tried to be strong for him and now that he is doing well I am starting to feel the stress that I have put on myself. 

Again I appreciate your words and you are an inspiration to us all living with this.  I hope you realize that.  Chucks has a corrective surgery coming up and I hope you all will have him in your prayers. 

Thank you.

Re: Staying Strong!

Chrissy,

I had surgery (right lobectomy and cholesystectomy) in January of 2007 for cholangiocarcinoma (my story is on here if you really want to read about my experiences). I am now almost 12 months past resection, and still show no signs of cancer return.  My doc did not take any lymph nodes during surgery, nor did I have chemo afterwards.  I have spent months worrying, expecting the cancer to return at any moment. I feel guilty that I am doing so well while others are not.  I hardly even respond on this website anymore for this very reason, altho I read it every day.  And I discuss my feelings with my doctor every 3 months when I get my CT scan. But, she has told me and told me (and I am starting to understand) that the cancer may return, but it may not. You cannot go everyday wondering if the shoe will drop tomorrow. 

Now, that said, I still worry every day. I imagine facing the news that the cancer is back. I can have myself bawling in one minute flat when I start to worry about it.  So, as time goes on, I try to think about it less and less. 

You have to try not to worry about what may happen and start being happy for what has happened! Chucks has been given a gift, whether the cancer comes back or not. Please, I know how hard it is. But you have to try, for your sake AND for his.  Hopefully it will get easier as time goes on. And until that other shoe drops (and maybe it won't!!!), enjoy Chucks and the life together that has been gifted to you.

You are both in my thoughts and prayers.
Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Staying Strong!

Thank you Sue!

I know this is all soooo true.  I feel awful that I am having these feelings because like you he had surgery in January of 2007 and is doing pretty good considering what he has been through.  All Ct scans have been negative and show no signs of cancer regression.  He is going in for a corrective surgery to repair his stomach wall.  While he was in the hospital after the first surgery, the whole muscle tissue in his stomach became infected and it had to be removed.  Since then it has been causing most of what little pain and discomfort he has.  I hope I feel this way because I am scared of this upcoming surgery.  We went through soo much the first time that another surgery scares me.  I have faith in God and know that without him, chucks would not be here today.   

Thank you everyone for your kind words.  They mean so much to me.   I commend you all for keeping your spirits high and fighting so hard.  You are the ones that make the rest of us fight.

Chrissy

Re: Staying Strong!

Sue,
please, continue to report about your well being as all of us cherish the wonderful news coming this way. 
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Staying Strong!

Sue Sue Sue....
How naughty of you to not to post. We NEED good news, it keeps the soul alive. I will let you just sit and stew and worry about what type of punishment you deserve for not sharing good news. By the way, I am so happy for you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Staying Strong!

Chrissy.... Prayers to you and Chucks .I hope corrective surgery goes well !
I myself had to have a big ole hernia repair with a wire mesch put in due to so much chemo.  Chucks surgery sounds a little more challenging but I'm sure he'll do well after all he went through.  He sounds like a very strong and determine Young man.
God Bless and Prayers,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Staying Strong!

Thank you Jeff!

It's true.. he is very determined.  The Dr. says "don't get me wrong, this is not a simple surgery but compared to what you have already been through... Man.... it's a walk in the park"  So I am confident he will be doing much better after this and guess what?  He has worked 3 days this week and has not been tired at all.  Thank God for substitute teaching!   It really gives him the opportunity to work as much or as little as needed. 

Thanks everyone.

Re: Staying Strong!

Hello Chrissy, so nice to meet you, and I read your story with much interest as the two of you had a similiar experience as we did.  Now, we are in our 50s, and I am so sad to hear that CC attacks younger people...when you have so much ahead of you...so unfair.  What I notice though is that your Chucks had surgery in Jan 2007 just like my Tom did and in same way he was originally told the tumor was inoperable, and then was referrred to a surgeon who looked at all the scans carefully and said he was willing to give it a go if my husband was.  So here we are a year later...and Tom's had no recurrence according to latest PET and CT scans.  The surgeon took out the tumor and about 1/3 of Tom's liver and some lymph nodes.  Now about the anxiety; it just came in waves for my husband; the second six-month set of scans he felt even worse, even though the news was good.  He couldn't sleep for days before the scans and after his dr said it was OK to relax and have some good holidays, my husband could not shake his depression and finally went on anti depressants and anti anxiety meds and some counseling.  He couldn't shake the thought that "some day the news will be bad again."  He's finally coming out of it and starting to get out of the house a bit, taking more interest in everyday things, although he has about 0 energy level.  He also has prostate cancer.  For me...I go through the "what if" ups and downs too.  There isn't any certainty except what you can create for yourself.   I sure do feel for you.  We are in similar boats on the same sea...Spend as much good times together as you can...find a counselor or support group where you can really open up and express your fears.  It's hard to know how much to reveal to your partner.  I realized that my husband was keeping a lot of fear inside, seeming to be indifferent, but actually he was terrified.  Part of that was from the news about the lymph nodes...almost all that the dr took out had no abnormal cells but a couple did.  Over the months the fear of those "bad cells" floating around his body just took over.   One thing that helps is do some things for yourself that have nothing to do with thinking about cancer, and same for Chucks, encourage him to have daily activities he enjoys that are "his" and don't belong to the disease.  Sometimes the fears will make me queasy and immobilized...but those times do pass.  I don't always read here at cc discussion, not as often as some people, but do check the board and will keep track of your story.  I can sure relate to so much.  Sarah

Re: Staying Strong!

Thank you so much for responding with your story Sarah. 

I am happy to hear that Tom is doing well in regards to no recurrence.  I hope and pray that he will have great success with treatment.  I am really trying to keep this positive attitude for myself and sometimes it just gets really hard and I am glad I can vent about it on this site.  Its good to know that we are not the only ones in this struggle.  It is uplifting to know that we are not just fighting for ourselves but fighting for everyone living with CC.  Our good stories bring hope to others with bad stories and trust me, we have been there.  We were told that the dr.'s could do nothing for chucks... we were told to go home and enjoy the rest of his time with his family and friends.... we were told in the hospital that he would not make it through the night but HERE WE ARE!  ALIVE AND STRONG!  He is pretty good about keeping active.  He is really into his old VW's and has a club that keeps him active.   Since getting out of the hospital he has put together an entire car which was fun for him.  I know he trys hard to keep busy.  I get scared sometimes that he is doing too much but I guess he know when it's too much and I have to trust him on that. 

I wish everyone the best on this site.  You know I want to share something with you.  When Chucks was in the hospital, I felt really down.  I felt helpless and like I was loosing myself and my faith.  I went home to take a shower and turned on the t.v for a minute.  That night a preacher was on and it seemed as though he was talking to me.  He said "regardless of what you have going on... trust GOD.  If you have someone that you LOVE sick and in the hospital... trust GOD.  Don't just sit there and pray for a miracle.... Expect one! Know that GOD will give you whatever you expect of him.  After that day I expected a miracle.  When the Dr.'s had bad news. I would tell GOD how little they knew about his strength.  I truly believe that GOD spoke to me that day.  I hope that this speaks to all of you.  I too needed to share this because I think I almost forgot that with all of these negative thoughts that I have been having.  I will expect my miracle and I truly have recieved it and as long as I continue to expect my miracle... I will continue to receive it. 

Now it's been past a year and no Cancer... My miracle.  The Dr. even told us that everytime he see's Chucks it's uplifting for him.  He said "I loose a lot of people in my type of career and sometimes it gets me down but seeing you alive and doing well and looking absolutely great makes what I do worth it."  God give him this so that he can continue on and continue to help others living with CC.  I expect great things of his Dr. as the LORD guides him through.

GOD does do miracles.... you just have to expect them!

I will pray for all of you and expect that GOD will deliver you from this heartache. 

Christina
Sorry for the long message but I think it's worth the time.

16 (edited by Salsarcat Mon, 21 Jan 2008 15:09:53)

Re: Staying Strong!

Hi Christina,  Thanks for your response...it is worth the time!  Another thing I think about is what you mention....for the doctors to see the patient recover and thrive, that is a blessing for them too.   Tom's main oncologist, Dr. C with the original diagnosis had told us to take a trip if we wanted to, Tom would probably never have a chance again.  He said some chemo might be possible but was not very reliable.  So we went to Chicago in summer of 2006.  Then after that we did a second opinion consultation at the University of Washington/Hutchinson Center in Seattle.  Had a great consultation there... and the guy we saw had just transferred up from MD Anderson, the major cancer center in Houston (?)  He also said the tumor wasn't operable but had more ideas about what chemo might give some help.  But it wasn't until almost 6 months later that Dr. H, the surgical onco said he was willing to try to remove it.  Every time we see Dr. H, he just beams, says Tom is one tough guy, "see you in six months."  Tom also had a radiofrequency ablation to a spot in his lung, at that young radiologist just loves his work, is full of positive energy, and works with lots of new technologies.  He says is such an "upper" to see the tumors shrink with what they can do.  Then back to Dr. C again, last time we saw him before Christmas, he was grinning and shaking his head, said, "Tom I never would have believed it, with your original symptoms, but here you are."  Cancer apparently just folllows different patterns in different people.  Dr. H the surgeon did say that if he'd waited much longer the operation may not have been successful.  The dr's really do need to see that their work is having an effect.  Also whatever Dr. H learned from working on Tom, he is a stronger surgeon now because of it...so all contributes to the common good.   I am glad to hear that your Chucks enjoys his car work and club involvment.  Those are best things he can do for himself, just continue "being himself" not the disease.  Tom is at a lull in his hobbies, and fighting depression, is on medication for that.  One reason I want to move back to town is that there would be close by places we could go, even just to the grocery store or nearby restaurants, short trips that would change the scene for him but not be too exhausting.  Our brains need different things to pay attention to, to help them heal psychologically.  Well I'm so glad to have met you Chrissy...feel free to email me about faith and spiritual things, I need a boost once in awhile.

Re: Staying Strong!

Hi Chrissy
I have only just discovered this site tonight and I was drawn to your posting.  I totally understand what you're going through.  i met my partner in Sept 2003 at the ripe old age of 37 and I had been looking for him for years.  I was so happy to have found "the one" and then in 2006 he was diagnosed with CC.  I am now 42 and he is almost 41 and I have two teenage daughters who love him and he has a five year old daughter whom he adores.  It seems so cruel.  So I totally understand what you are feeling at your young age, cheated and bitter.  I really hope your Chuck's treatment is successful.  I am not a religious person so I do not pray but I do talk out loud when alone asking someone to help my Mark, I will do the same for your Chuck. 

Lorna

Re: Staying Strong!

Hey Chrissy! You and I are in the same boat...my husband was just diagnosed almost 2 months ago with this HORRIBLE disease....I FEEL JUST LIKE you do...in fact today....I threw my hands up in the air not to mention a few very nasty words and stated "I'm done!!!!!! NO MORE!" I cried so hard I thought I wasn't going to be able to gain control again...I get so stinkin' mad at Lee sometimes that I could walk out the door and never look back! I would never do it...but I swear...my emotions overwhelm me terribly and I am convinced that I cant do it one more minute...I positively hate this...when I got married...I never thought that the in "sickness and health" would mean this...I surely didnt sign up for it...but right about the time I think I am for sure going to lose it...a little ray of hope...a little blessing from above....the tiniest of miracles happens...and it gives me the courage and strength to carry on...not to mention my love for the Lord...I simply do not know how anyone can live without him...please just know that what you are feeling is very, very normal and I am here to cheer you on in any way I can..on your good days and your bad days...I will pray for you!  And ya know what...take good care of yourself...even if you dont feel like putting on make-up, or soaking in a hot tub....do it...I fell into terrible depression but would do little things for myself like read a book I had always wanted too,  when Lee sleeps I snooze,  scrapbook here and there, indulge in a yummy gooey dessert and I noticed that if I dont always concentrate on Lee and a tiny bit on me...I feel better and look forward to a new day with Lee.  I love this site too! I joined the day we found out the dreaded news...and I have been forever grateful...I feel like part of a family that God knew about and formed way before I would have even imagined!

Much love,

Heather

Re: Staying Strong!

Thank you guys,

Even after all of this time, you still read and reply to my posts.  Chucks had his second surgery and it went well as far as we know.  The doctor said it looked pretty good in there and he was feeling very confident.  Chucks has been very uncomfortable since the surgery but is doing well all in all and is actually back to work YAY for us.