Topic: checking in/updating

Hey everyone, it's me, Denise, it's been a while since I checked in.  I went to MD Anderson the first week of November.  They did a CT scan and it showed the tumor has not grown or spread and it showed necrosis.  So their recommendation is to watch it by doing a ct scan every 6 to 8 weeks.  If is shows any growth or movement it's back on chemo.  So we are doing nothing until January 6th when we do another scan.  I'm back to work and loving it  I'm totally asymptomatic.  I did have to have the stents replaced Halloween week.  They could only get one in because one of the ducts was too constricted.  Not sure why that is, but I hope it's cuz  of the radiation.  So here is my question:  is it normal to not be able to talk to family and friends about the possibility of my not surviving this?  I feel like I have no one to talk to about it.  No one wants to hear it.  They are still thinking positive.  I am too, but occasionally I feel like I need to get it off my chest.  So, I've been crying some by myself.  What's the deal, am I crazy?

2 (edited by PCL1029 Tue, 03 Dec 2013 18:02:26)

Re: checking in/updating

dboms wrote:

  So here is my question:  is it normal to not be able to talk to family and friends about the possibility of my not surviving this?  I feel like I have no one to talk to about it.  No one wants to hear it.  They are still thinking positive.  I am too, but occasionally I feel like I need to get it off my chest.  So, I've been crying some by myself.  What's the deal, am I crazy?

Hi, Yes, it is normal to not be able to talk to family and friends about the possibility of my not surviving this? because in reality, nobody really wants to hear it until , like the patients and the caregivers  here are  FORCED into that situation.

You are not crazy; crying is normal; need to get it off the chest is very normal;
I do the same at times when I am praying; I do feel down at times especially I think I know a lot about this disease but actually I don't. I feel sorry for all of us, the patients and the caregivers, that I cannot come across fast enough to report  tolerable treatment plans for all of us.
And of course, it hits  hard when member expressed personal disappointment over the effort that our members tried to provide  without valid foundation. I do not enjoy the "unique style of personality or writing";  In short , rather, I  enjoy criticism with reasoning behind.
Thank you for this chance to make me feel good to get this out of my chest.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: checking in/updating

Percy, don't you ever apologize for anything. You have truly helped so many members. You are not only valuable to us for Medical advise you are a truly kind and compassionate man. May you have many more years on this Board....Teddy can't compete in restaurants yet!

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: checking in/updating

Denise, everybody cries. I thought that was how we cleaned our eyes out! I used to get in the car slip in the CD Mama Mia and drive around 1/2 hour singing and crying until I ran out of steam! Came home renewed again. My belief is that a patient has a right to tell family what is up. First it is good for the patient and second it's not fair to take this on alone! I would have a family meeting and say what ever you want. If they don't like it then to bad and you will quickly find out who will be there to help. Actually you can turn it around after you tell them, let them know what they can do for you. Let them know you will be sending out group emails to say what is new as you cannot keep repeating everything. I did that with Teddy and it worked quite well. Gave an update almost nightly and did not have to keep answering calls. They are not allowing you to do this your way and you feel no one is interested or in denial and that makes it harder for you using your energy worrying about them. Best of luck what ever you do.

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: checking in/updating

I cry all the time. It is normal when we do not want to die. I cry and then get up and on with it, don't let the children see me cry! I do talk to my lovely husband and most wonderful caregiver but then we just both cry. It's pathetic! and totally normal. So cry away. I can't talk about dying without crying for the children and husband I leave behind, so I don't talk to anyone really except maybe God and the wind. But....... I have made a couple really good pals with cc from this list and elsewhere and there is nothing like sharing with them -- they are fighting the same fight. It's a real bond here. Please keep writing us!!!

Re: checking in/updating

Percy, you are one of my favorite people in the whole world and I love your posts, love the articles you find and post for us, love your knowledge, compassion and humility .... I am so sorry that anyone would ever upset you!!!! You have been both a godsend and an inspiration and I think of you all the time. Just know you are beloved, ok?

Re: checking in/updating

I agree with Lainy and Holly and I truly appreciate your posts Percy. I have learned so much from you about this cancer. God bless you Percy and keep sharing the knowledge.

Re: checking in/updating

While it would be wonderful to discuss the possibilities of dying, many friends and family don't want to hear it. I remember when I was diagnosed I was terrified, and tried to talk to my parents about it. They have been extremely supportive throughout this whole journey, but they will NOT discuss the probability that they will outlive me. There are many hospitals that have social workers that can talk to you, and even give you possible insights you didn't think of. They can be therapists, but also a source of info for other help as well. I'm pretty sure MD Anderson has people you can talk to. Maybe even over the phone.
And, yes, crying is normal. I cry for myself, but I mostly cry over some of the posts that I may or may not be able to respond to. Think about it: we have been attacked by a mostly unknown and uncontrollable monster. Sometimes we can get the upper hand. But to get there, we can often feel totally helpless and not in control of any of the situation. The possibility of our lives being at stake coupled with the stress of often having to make quick decisions with no guarantees could cause anyone to break occasionally.
I have found strength in prayer, and have come to believe God has a plan for me so I shouldn't stress about it, but it is still hard to do.
Don't be hard in yourself. And call MD Anderson and get in contact with someone you can talk to.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: checking in/updating

Percy.....I understand your comments well.   Quote:

"And of course, it hits  hard when member expressed personal disappointment over the effort that our members tried to provide  without valid foundation."

Not only do you research, offer advise, share your own personal experience in detail and pass on information related to your professional background as well. 
Additionally, you answer each one of my personal e-mails.  I pose difficult questions and many demand enormous time commitment on your part.
You have actively participated in adding pertinent information to the upcoming Cholangiocarcinoma Foundation Patient Registry, added comments for the Biliary Book (now in print.) It is due to your efforts and outreach to qualified people that we now offer Chinese Brochures; you attend numerous conferences on behalf of the Foundation; you report back with diligence, compassion and caring for all touched by this cancer.  You are undergoing treatments in order to stall progression of your very own disease all the while continuing to work in your profession as well.  Oh, and let's not forget the numerous, personal e-mails you receive and answer diligently and promptly. Of course, we are hurt when criticized. It is unjust and unfair because; as you have mentioned, each and everyone on this board cares deeply for those having to deal with this cancer.  But, some just don't understand; they are frightened and they feel lost and place the anger and frustration onto those people offering support to the best of their abilities.
Those of us that know and appreciate your tremendous contributions to the Cholangiocarcinoma patient and caregiver community at large realize the exceptional person you are. 

Hugs,
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: checking in/updating

Denise.....I agree with what the others: you are anything but crazy. 
I have learned that "a good cry" is good for us, as it releases the emotional build up and serves as a good release of these emotions.  It is a normal response to stress, joy, or physical trauma.  Holding it in is unhealthy and abnormal (in my opinion.)
Cancer can be overwhelming, not only for you, but also for your friends and relatives. People often don’t know what to say, feel sad and uncomfortable and may be afraid of upsetting you and possibly be frightened about the possibility of losing you.
You may want to reassure them that you will do whatever it takes to fight the cancer and would like their support and encouragement. But, that you also want to be able to share thoughts freely and without hesitation.  Give it a try, dear Denise. You might just find that some are more open to discussions whereas others simply are not.
Hugs,
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: checking in/updating

Denise,

What you describe is not only normal but is an expected part of journey through a life-threatening disease.  There are times of happiness and sadness.  If the sadness is taking over your life and you cannot function and take any joy in anything in your day, then it's time to talk to your doctor.

It is extremely helpful to find someone that you can talk to about all possible outcomes, but I too found that most did not want to hear any "death" talk from me, only hope, joy, good thoughts, and unicorns smile  It's very isolating to be alone with these thoughts and unable to express them to anyone.  But people are not always in the same place we are as patients.

I eventually talked to a counselor so that I could actually say out loud "if I die" or "I don't want to die" or all those things that I thought that others in my life didn't want me to say to them.  It was so very helpful for me to have a safe, nonjudgmental, place to express those feelings.

So, in a nutshell, you are not crazy, well at least not crazier than the rest of us smile

Take care,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: checking in/updating

Dear Denise,

I'm so sorry for the roller coaster you've been going through.  I agree with everyone else about crying.  You're not crazy!  I love picturing Lainy crying and singing at the same time.  Sometimes I drive on the freeway and just scream really loudly.  I probably look crazy doing it, but it helps.  I've seen my mom cry just once or twice since her diagnosis, but the one time she cried, she cried loudly.  It was devastating to listen to, but I think it made her feel better.

I said this in another post also, but as a child, I think it would frighten me to talk about dying with my mom.  When my mom mentions dying in the most remote way, I tell her not to talk that way.  It's a defense mechanism.  Maybe it would help to talk to someone about how to talk to loved ones about dying?  I'm sorry I don't have something more helpful to say.  Mostly, I wanted to let you know how much I'm thinking of you and praying for you.

Caroline

Re: checking in/updating

Dear Percy,

I also wanted to echo what everyone else has been saying.  In the short time I've been on the discussion boards, I've been finding all your posts incredibly helpful and informative.  What I find especially awesome is that I can sense your love and compassion behind the research that you do for all of us.  Thank you, and I'm sending a big hug your way.

Caroline

14 (edited by PCL1029 Wed, 04 Dec 2013 12:01:49)

Re: checking in/updating

Hi, Lainy,Holly,Shellina,Caroline and Marion!
Thanks for your sharing.
When I am frustrated  or angry,I read  and write more about this disease  , I try to search different ways to say no to this roller coaster ride, I plan more for the financial future for my wife and  the kids  .  I go to work partime as an example  to my coworkers that a cancer patient still can be very productive ,the same or even better than those who have no disease. I  channel  my energy in this way.
And with respect to many of you I know , many of you channel your anger,frustration and life difficulties into extremely productive commitment  and benefit to so many that came before or after us. To most of you, just your message about your disease treatment and how you deal with the disease or how you care for the love ones provide substantial encouragement to allow us to reflect upon ourselves the way we look at ourselves at time of crisis. 

Am I afraid to die, of course. Am I worry for my wife and kids when I am gone, absolutely. But it still does not give me the right to lash out to everybody at will.

I always think that if this is the journey that God wants me to take, I should take it as gracefully as I can. I may break down at times, but hopefully I can pick it  up again with grace and dignity

Finally, thanks for  everyone's love, hugs and kindness and  I think it is time to move on to a better path of sharing and friendship .

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: checking in/updating

Percy,

You are a great person for all you've been through and your willingness to help others. You've documented your personal experience with such great detail that we all all can learn from it. You've created what has become the standard resource for chemotherapy options, and more.

In the language of the Bears....."You da man".....
Carl