1 (edited by rbcaln Sat, 13 Sep 2008 11:18:51)

Topic: Introduction

My name is Becky and my Mom was diagnosed with CC right before Christmas last year.  Things have been up and down for our family and we are still trying to stay positive.  I have two older brothers each with 3 children and I just got married in April (we got engaged at Christmas). 

My Mom is still doing fairly well and is in good health with the exception of her CC.  She had surgery two weeks ago to try to remove her tumor but it is too large and has invaded her portal vein.  She is recovering from the surgery (76 staples)  and is looking forward to finding out the next step for treatment.  We are all concerned (of course) about what the future holds but we are trying to stay positive.  My Mom is the one who is staying the most positive even though we have read all the information and know the statistics.  She is a Nurse Practitioner and understands all of the articles which is both good and bad, although she is able to speak on a higher level with her practitioners.

I have read a lot of the discussion boards and have found them to be very useful. 

Thanks,

Becky

Re: Introduction

Becky,

Welcome to our little corner of the world. I am sorry to hear your mom's surgery was not successful. It sounds like she has a great attitude and I think it really helps when someone in the family understands the "medical speak" the doctors use.

Patty

Re: Introduction

Hi, and sorry to say welcome, but you have come to a good place. What kind of surgery did your mother have? Sounds like a Whipple?  Stay strong and let us know how the doctors are going to proceed.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Introduction

Becky,

Hello.  I am sorry that you have had to join our group, but welcome.  You will find this group very helpful.

My mom was diagnosed with cc in October 2006.   Your mom's attitude sounds just like how my mom is.  I am the one who could break down, and my mom stays so strong and positive.  I know that inside she is unsure of what is going on through this whole process, but she stays so positive.   

Big hugs to you and your family.

Amy

Re: Introduction

Becky.....statistics in my opinion, are not very reliable and considering this cancer also, are not up to date.  Your Mom may very well know this.  Also, if you do take statistics in consideration it helps to remember that someone has to be in the top 10 percent.  Why not your Mom?
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: Introduction

Thank you for the responses.

They attempted a liver resection but were unsuccessful.  I speak to her frequently and she had all of her staples removed 2 weeks post-op.  She is continuing to get better every day.  I am finding it to be difficult to live in Illinois when my Mom lives in Nebraska.  I wish I could be there for her every day but with work it is impossible to be there more frequently.  I have already begun to use some FMLA days and can't afford to take too much time off.  I work with adults with mental illness and find it difficult to care too much about their problems when I have my own.  I have been struggling with depression since I was 20 and have been doing very well the last 2 years but this has thrown me for a loop.  My husband and I just got married in April and I was planning to go back to school to be a nurse (following in Mom's footsteps) but find myself really wanting to have a baby so that Mom can be there.  It is a very difficult decision because I know I want her to be there but my husband isn't quite ready and if I want to go back to school, we should wait.  I guess I'm glad that Norm has a definite opinion because I'm not the type to push him to have kids until he is ready and we would like to get out of debt first.  I don't know...I guess we'll have to discuss it again in a while.  I'm not sure if I want feedback on this dilemma or not but I wanted to tell someone about what I'm feeling.

Thanks

Becky

Re: Introduction

Hi Becky,
I can sympathize with your situation.  It is so hard to decide what to do when you don't know what the future will hold.  This illness disrupts all our lives and we just have to carry on as best as we can with the uncertainty. 

This disease really strikes people differently.  Your mom may have months or years left to live.  It's something out of our control, of course.  I would recommend to your mom that she fight.  Use chemo and radiation to shrink the tumor.  As for you, as you said, you can stay positive and don't well on the "what ifs".  Be happy with your new life and your husband and your mom will be happy.  I just wouldn't make any big decisions right now if I were you.

Although your mom would probably love a grandbaby smile

God bless you,
~Lisa

Re: Introduction

Hi Becky,

Welcome. I too am sorry you have had to join us, but you have found a great place for help & support. We are all here for you.  No one can know what you are going through unless they have been through it or are going through it themselves & we all have been or are there. We are all here to help & support you in any way we can. Good luck to you & your Mom on your journey.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Introduction

Well, Rebecca, I can totally sympathize with you but maybe I can put things in perspective for you and make you laugh at the same time. I am in my late thirties and single and after my Mom got sick, I kept thinking that if I ever did have kids, they wouldn't know their grandmother and she really was a sweetheart of a grandma (she died August 1st).

Well, what I was trying to figure out was how I could get my boyfriend to shape up into someone responsible enough to marry, get pregnant, and have the baby in time to meet her. A pretty tall order. And all while caring for her because, of course, I am superwoman.

You at least have the husband part solved but the road ahead will be very difficult and you will be under a lot of stress and that may not be the best thing for you or for the baby. Stress can cause complications in pregnancy.

My twin sister became pregnant shortly before my mother was diagnosed and it was very difficult for her, in addition to the pregnancy hormones, it was a very emotional time and she was trying to wrap her head around my Mom not being there for the baby. She was exhausted from visiting her in the hospital and felt badly that she couldn't help as much with her care.

About 2 weeks before her due date, she developed Intrahepatic Cholestasis of Pregnancy (ICP), I believe from stress. The scary thing is that cholestasis develops when the normal flow of bile in the gallbladder is affected by the high amounts of pregnancy hormones. My sister's symptoms included itching, a symptom my mother suffered from, and when my sister said it involved the bile I really freaked out. Jaundice is another potential symptom which, thankfully, my sister did not develop because I don't think I could have handled another person turning yellow in front of my very eyes.

In the end, the baby was taken early and this was a blessing because he and my sister are now both healthy and my mother got to see her newest grandson. The day he was supposed to be born was the first day my mother was unable to speak.

I will say one other thing, though. The baby kept my mother going. The doctor wanted her to sign a DNR and she asked if she could postdate it to after the baby's due date and the doctor said he had never heard of such a thing but he saw how stubborn she was and finally stopped pushing for her to sign it.

The pain of losing my mother is suffocating and sometimes I feel like I can't breathe but my baby nephew makes me smile when I need it the most. The poor little guy doesn't even know the weight he has on his shoulders, so many people needing to be cheered up in this family.

When my mother was close to dying but did not seem to able to let go, she told us she couldn't hold the baby anymore, that if she did she wouldn't be able to let go. She was in a lot of pain at that point and I told her I had figured it all out, that the baby needed help to get here and her job was to bring us the baby safely and then she could rest, go peacefully. If you decide not to have a baby now, remember that when you do, your mother has sent that baby to you. Yeah, yeah, Norm's gonna have something to do with it but you get what I mean.

Patty

Re: Introduction

I've read your story and the responses.  Sounds like you are not getting your questions answered.  Does Mom keep this disease to herself?  CC is a rare cancer and I found it hard to comprehend but I do know that cancer needs to be verbal to family members - everything.  Being far away for your Mom plays a part also.  After my operation, I was unable to physically communite, talk.  It just made me very, very tired and I slept ALOT!!  I hope someone at the household is able to convey information to you and others, because this type of operation just sucks the life out of ya.  Chat later.

Re: Introduction

Becky.....  Baby or not to have a baby?   You and Norm evidently had already had plans about the course you guys would take.  Unfortunately your Mom has become ill with this relentless disease and has put a twist on things.  Well, it has in your mind for sure.  It is normal and great to show your Mom she was successful in raising you and to show her that your going to be a good mom just like her.  Becky dear, changing your lifes's plans with your newlywed husband due to your Mom's illness is not the answer.  You said you have read all about this disease, so you know how unpredictable it can be.  I'm not going to go in to a full blown lecture as you appear to be a young lady with a good level mind of thinking.  Something could happen tomorrow or a month from now, or 6 months from now.  In this day and age you have to have a plan.  Sorry to say the reality is a lot of our plans revolve around how successful we manage our resource/finances.  Becky life goes on after the death of a loved one.  I'm sure your Mom loves you enough to understand your plans and doesn't expect you to drop and sacrifice to try and have a baby before she departs this world.  Your Mom whether on earth or in heaven, will see and bless your baby.  Personally, my advise is follow the plan your husband and you have made.  It takes a lot to raise a child and you have to be prepared or all/how you really wanted things to go will be such a burden and so stressful, you'll be asking yourself why?  You can also look at it as when the time comes, your Mom will need your loving support.  Ask your self, where will I be , at the hospital maybe,  Trying to find a baby sitter? or you are having complications? Just general thoughts I'm throwing out, using my imagination.  Bottom line becky, is stick to your lifes plan you and your hubby agreed upon . There is no need to up set the apple cart for something could or couldn't happen.  Let things go according to plan.  Trying to have a baby before your both ready or for a reason that is respectable in deed, will not change anything.  Give and show your mom the love you have ,it appears there is plenty of it to give.  This may sound selfish but really is not , you have to think of you ,your hubby and the baby when the time is right and your future's.  Sorry If I'm being a little blunt. But If I got word that my daughter was going to try and race the clock or make major life changes because I'm going to heaven, I would be telling her where is that solid foundation I layed for you to follow,

God Bless you all!
Jeff G.

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

Re: Introduction

Thank you for your responses!! They have really helped me to get things into perspective and have given me something to ponder.  I really appreciate your help.

Becky