Topic: I can't believe this is happening so fast

Hi all -

Dad's lung biopsies finally came back with the 'definitive' cancer diagnosis we had been expecting.  However, both his lungs are almost completely filled with cancer.  He can't have surgery and he can't have chemo because his bilirubin is too high.  Dad is opting for a second percutaneous biliary drain in hopes that his bilirubin comes down enough for chemo.  Doc said he would allow chemo if it came down to 4 maybe (it's at 14 at the moment - down from 27 a few weeks ago).  The biggest concern at the moment is his breathing - he's currently on about 10-14 liters of oxygen depending on how he is doing at the moment, and he still has his chest tube in from last Monday's surgery.  The doc discussed a DNR with us, as he is expecting that Dad might need a respirator soon.  I can't wrap my mind around this.  His first symptoms started exactly 2 months ago.  How do you go from feeling fine to being told you are Stage 4 with no treatment options in 2 months?  Doc said Dad had the choice to just come home and if so, would give him just weeks to live.  I'm afraid to leave the hospital thinking everytime that it might be the last time we have together. 

I know I'm rambling, I'm so just sad and MAD MAD MAD.  I'm jealous of all the people who get a diagnosis and have the time and the ability to fight it - how crazy is that?  I feel like my Dad hasn't even gotten a chance to get better.  Now he lives in a hospital bed with multiple tubes sticking out of him and no strength to get out of bed.  It's so unfair.

Re: I can't believe this is happening so fast

Michelle~
I know where you are coming from.  I just found this site a week or so ago. In fact, my 59 yr. old  brother was diagnosed Sept. 3 just a little over 2 weeks ago! Diagnosed with CC plus gastroesophageal cancer. It was such a shock! His liver cancer is inoperable. In 2 short weeks our world has fallen apart. I (nor anyone in the family) had ever heard of this awful disease until now. He was diagnosed and has just deteriorated so fast. I don't understand any of this either! My brother is also in the hospital. They did an ultrasound today to see if it's possible to put a stent in his liver duct to help. I just pray that it is possible and that it will give him a few good days. As it is now, he is in pain, is not eating, and not very responsive.
Please don't apologize for rambling - whatever gets us through this is what we need to do. I hope and pray that a cure for this horrid thing is found very soon.
I will keep you and your Dad in my prayers.
Sandy

Re: I can't believe this is happening so fast

Michelle,
Please dont worry about being angry. We are all angry. It is an unfair disease and the only thing that it seems to do is attack good people with a vengence. My psychologist is adament anger is a natural, good, and healthy stage in the process. I get angry at breast cancer patients (silly I know, they suffer too), but their statisctics are the complete opposite of ours so sometimes I just feel like yelling "Stop your whining. Come back when you get a REAL cancer". How sick is that? Particularly when my favorite aunt is a breast cancer survivor. And then sometimes I get jelous at people who get cc when they are in their 80s and I know that I will not likely see my 36 birthday and I think of all the things that I will never do or experience. Neither of these are "positive" emotions, but when your life is turned up side down and your plans, your life everything is not in any way shape or form the way you imagined it, you cant help but feel these things sometimes. It doesnt mean you are a bad person, just that you are human and crave something as simple as health for you and your loved ones.

The trick is not to let it consume you. Again, the golden advice from my psychologist...if you have 3 months, do you want to waste it being angry and worrying about death? If you live 3 years, do you want to waste it being miserable for so long being angry and worrying about death? I think that was the best thing she has every told me. We all have to make the time we have special and though it is hard with your father being in the hospital, there are ways to do it. The important thing is to manage his pain and make him comfortable. Sometimes it is more about the quality of life than the quantity.

Your dad and his doctors need to make the decision on what to do. I have decided that I will fight and not give up, until the day the doctors tell me that there is no hope. Then we will see. I myself will not give up until I have to, but I will listen to my doctors when the time comes. I am scared to die, but I think I am more scared of a slow, prolonged and painful ending. And that is the decision all of us as patients must make at some point. It isnt pretty, but it something that needs to be discussed. What is it that the doctors think and what your father wants?

Please dont be afraid to take him home if that is what he wants. Hospice can help. Who knows, maybe being around his things in his home is just what he needs to get his spark back. I know when I am in the hospital, i always feel emotionally worse.

Just remember you are not alone.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: I can't believe this is happening so fast

Kris, your post reduce me to tears, although I am not the patient. I hope I can as brave as you are, and have the faith as firm as yours. It's hard to describe my feeling by English ( My native language is Chinese ), but your words really touch me deeply, and give me another point of view of how to face my mother's bile duct cancer and this difficult fight.

Thank you...

Re: I can't believe this is happening so fast

Kris,yes a very inspiring post.You are doing so well supporting others and telling it really like it is,and yet it is so hard for you too,if you are like me the tears flow as I am typing.The emotions are all so raw and our feelings so complicated.
                                           Janet x

Re: I can't believe this is happening so fast

Dittoes, Kris.

Hey - let's make October Cholangiocarcinoma Awareness Month!  I get so sick of hearing about breast cancer awareness.  If you are not aware of breast cancer by now, you're living in a cave.

Since my hosptial stay, I am more aware of how precious and precarious my life is.  It really brought my mortality to the forefront of my thinking.  I was trying to ignore the lung metastasis and what that means.

Re: I can't believe this is happening so fast

What a great idea there Missy Lisa! Its probably too late for October but we could pick a month like in the Spring when everything comes to life again! That would give us some time to get this thing off the ground. Now the question is how we would go about doing this. I mean we all know every months is CC month but how to get it out there! We need to think outside the boxes (hospitals). Spring and Kris's daffodils and around the world and goodness there is no stopping.

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: I can't believe this is happening so fast

Yes, yes, yes please - we need as much awareness as we can.

Count me in!!!

big_smile

"Time may be a great healer, but it's a lousy beautician."

Re: I can't believe this is happening so fast

We could use the "Suggestion" thread on the bottom of the Discussion Board to start collecting ideas about an upcoming Cholangiocarcinoma month.  With this many minds, something great will emerge. 
Marion

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: I can't believe this is happening so fast

Kris - I am crying my eyes out reading your post.  You are such an amazing person.  I'm not the one having to go through this horrible cancer, it's my Dad, but you are the one comforting me. 

I'm glad I'm not the only one who's mad at the whole breast cancer thing - it's the same example I give to people when I get so mad at this.  There SHOULD be a cholangiocarcinoma month.  There should be more research and more awareness.  I've been on this board since my Dad got sick, but I haven't spoken much about myself.  I have worked in clinical research (clinical trials) for my entire career - 16 years.  I work on studies to get new drugs approved by the FDA.  I've worked on oncology studies and up to this point had never even heard of this cancer.  Once my time frees up a bit, I want to help in any way I can with people suffering from this.  If my background and experience can help in anyway I want to do it.  It may not be in time to help my Dad, but maybe it will help someone else's Dad or loved one. 

God bless all of you and your families
Michelle

Re: I can't believe this is happening so fast

Anger is a positive emotion if you channel it in the right direction.

CC month sounds good to me

peace, love and good vibes  Wendy

Re: I can't believe this is happening so fast

Hi Kris,
I feel so the same about breast cancer. I get jealous because I think at least you'll probably survive! And then there's all this research for lung cancer, breast cancer, leukaemia- but hey, how about  cc-especially seeing it is so often inoperable. I just makes me mad! But people keep telling me the longer I survive the more likely a cure- but not if there is no research! And then there are those who don't get sick till they are in their 80s. That's another 30 years to me! and I've got 20 years on you -but I know just how you feel. Just had to get the anger out!!

Re: I can't believe this is happening so fast

Judy....There is some research going in to the direction of this cancer.  But, of course, we want more, and we want it faster. I just attended a phone conference.  This study was focusing on gene expressions in colon, breast, and pancreatic cancer.  Again, I asked to have CC patients included in some of these studies.  The answer:  "Most of these studies are following preclinical trials and those trials focus on the more known cancers such as the one's mentioned above."  I assume that this is based on the funding available to researchers.  Nevertheless, I think presently, more focus is going in the direction of our cancer and we are noticing a higher survival rate.  We just want more.
Based on that I continue to stay hopeful for a cure to come our way.
All my best wishes,
Marion

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: I can't believe this is happening so fast

Michelle....I'm so soory that this is happening to your family. My heart turly goes out to you.
I want on the bandwagon as well. I want to help get awareness out there for this awful cancer.

15 (edited by marions Thu, 24 Sep 2009 14:14:17)

Re: I can't believe this is happening so fast

Beth....help is always needed.  On top of the home page, under "Get involved" is a "Volunteer" section.  But in addition to what is listed there are many other ways of helping in the fight against this cancer. 
Thanks for your generous thought,
Marion

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