Topic: My Update

Hi Everyone,

I haven't posted for awhile regarding what I am going through but I think now is the time to do so.  I was on vacation last week with family in North Myrtle Beach,  SC.  I had a good time but started experiencing more abdominal, liver and back pain.  Luckily, I had my oxycodone with me and it helped.  Just sad for me that I had to start taking the pain med on a daily basis.  Also, my hair started coming out - almost completely bald - but I've chosen, at this time, not to shave the rest.  I'm wearing hats when outside.  Sorry for telling the story out of sequence but I started Paclitaxel on 7/12, had it again on 7/19 - thus the hair loss.  I got some time off to go on vacation with family and will start back on the Paclitaxel 8/9.  I'm not sure what the cause of the increased pain is but it has me worried.  I can't wait to talk to the doctor on Friday.  Also, to backtrack, I had five SBRT treatments in May and the doctor has told me that it could still be working and causing lower abdominal pain due to inflammation.  I can't wait  for my next CT scan which will probably be in September.  Not sure how long I'll be on the Paclitaxel.  The doctor said if its shows signs of working, and she has seen success with it, then she'll keep me on it as long as my counts don't go too low.  There are other options the doctor has for me.  They actually took my biopsy  specimen from August 2011 and are doing some kind of gene mutation - not sure if I have this all accurate but it something with targeting my specific DNA with certain chemo to see what works best for me.

Sorry for going on so long but I really felt the need to tell my story.  This past week I really felt that I was losing hope but I didn't want my family to know.  Sometimes it's hard to let them know how I really feel.  I don't want them to worry about me. I feel bad that I'm putting them through this.  They've been through so much with me, especially the last few months with so many hospital stays for having the stent put in then fevers and infections - luckily not related to the stent.  I had a fungus infection in my blood and biliary system which took a few weeks to clear up.

Again, thank you for letting me go on.  I feel better just telling my feelings to you.

Mary

Re: My Update

Mary,
I'm sorry to hear all of this. Hopefully the pain is related to the SBRT treatments.
I know how you feel about not wanting others to know how you feel or worry: its tough. Losing hope is, unfortunately, a side effect (if I can say that). I think we have all been there. I can say the mind can be a terrible thing. My mind was causing all sorts of pain two years ago.... I couldn't stand the pain and took loads of oxycodone. They did a bone scan and an MRI and found nothing! And miraculously, my pain went away (mostly).
This forum is for all of us. Share good news, bad news, worries, information: anything you need! We are all here for each other.

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: My Update

Hi Kris,

Thanks for your kind words.  I am on low dose oxycodone - 5mg - which I have been taking twice a day so I guess that isn't too bad.  But I wasn't taking it at all since I was done with the SBRT on May 13th so that's why I'm feeling a little down about it.  Sometimes I feel I can't tell those close to me how I really feel because they'll think I'm giving up hope.  I just feel down about what I'm going through sometimes and start to wonder how long I will live.  I can usually snap out of that quickly and get into the moment of how I'm feeling altogether.  All in all I'm still pretty active so I should be grateful for that.  As you probably know, it can be difficult sometimes not to be overwhelmed by this disease and its poor prognosis for long term survival.  But you're right, this forum has helped me in the past and I should come here more often for support.  Thank you for reminding me of that and thank you for taking the time to boost my spirits.

Even though I haven't been posting much, I have been checking posts almost every day and am glad to see that you are doing well with your clinical trial.  It's great to hear positive stories!!!

Take care Kris.

Peace & Love,
Mary

Re: My Update

Mary....I can't add much to what Kris has mentioned - just want you to know that your concerns have been voiced on this site many times and that we are together in this fight against this disease. This includes just "letting it out".  Hang in there, dear Mary. Tons of positive vibes are heading your way.
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: My Update

Hi Mary, so glad to see you and I hope your Vacation was wonderful even though you had to rely on some pain Meds. Sometimes just a change of scenery does one good.
I have a diff point of view on not letting people know how you feel. I do understand as for example, Teddy would ask for something to eat like eggs. I would make them and he couldn't eat and kept apologizing  because he could not eat. He was always saying how bad he felt for doing this to me. Doing it to ME? Yes, it did make me feel sad but know what? It was all part of us coming together to understand and get through it all. And it was a kind of gauge for me as to how he was really feeling physically and mentally. I feel your family and friends are there for you and there is nothing wrong with communicating your feelings to them. In a way it makes them feel they are helping because if you don't say anything that is kind of shutting them out. Sometimes I just can't explain it right so hope you get the idea. Let them be of help, shoulders to lean on so they feel that they are helping. I feel I am getting deeper here but I am having trouble saying what I am feeling. To me the best news is that your Docs have options and that is a very good word! Missed you!

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: My Update

Thank you Marion and Lainy. 

Lainy, I do understand what you're trying to say.  That is my problem - I'm afraid to tell them how I really feel at times because a lot of members of my family don't what to accept the fact that I could die in a year or two.  When I try to express that to them but also tell them I will fight with a vengeance to the end they don't want to hear it.  And sometimes I do want to talk about how the end will be.  I see others far worse than me, especially when I'm in the hospital, and I wonder if that will be me soon. It makes me think about how the end will me and I would like to talk to someone about it but family isn't ready to have that talk.

Thank you for being there for me. I really do appreciate it.

Love,
Mary

Re: My Update

Ah, Mary. IF you are game..... You do remind me of Teddy as when he would be in the hospital he would say, I can't believe all these people with Cancer  keep coming in to visit ME! He didn't feel bad for himself he felt bad for them.  The next thing is you scare me because you understand me!! lol
I AM SORRY TO SAY THIS BUT THESE PEOPLE WHO DON'T WANT TO HEAR ABOUT YOUR JOURNEY ARE PLAYING THE VICTIM! How about if you composed an e mail that you send out to all family and friends telling them briefly about your CC and your feelings. It would be a beginning. Tell them that you feel you are traveling this road alone and their support would be welcomed. All you are asking for is for them to accept your CC and let you talk when you need to. Reverse the victim on them. I really believe in talking, Teddy and I talked all the time about everything. There was nothing hidden and for us it worked. Somehow it takes away the fears.  Guess with my big mouth I would tell them that if they can't listen to me talk about it once in a while, which is what I desperately need, then please don't talk with me as it makes me feel like I am doing something bad to you!  I would end it by asking those who understand and want to help you by listening to you, that you would like to start an email list of updates and would they like to be on your list. I had an email go out nightly to Teddy's kids and both families, friends and it worked great as I didn't have to keep repeating everything on the phone day after day. And it kept all informed. I hope you understand me again! LOL

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: My Update

Hi Mary,
First let me say how sorry I am that you are going through this tough time. Hopefully things will improve for you very soon.  From your post, it sounds as if your family is firmly in denial and this comes at your expense.  No one really wants to talk about the end of their life or that of their loved one, but when someone has a life- threatening illness, it's just the reasonable thing to do. If I were you, I would choose the family member I feel most comfortable with and  trust the most and tell them what it is that you want should you be unable to make decisions for yourself and then fill out the legal paperwork that gives them the power to carry out your wishes.  I've done it and I'm perfectly healthy (as far as I know anyway).  Anything can happen to any of us at any time after all.  My living will is as specific as I could make it, so that no one who reads it can be left with any doubt as to my wishes. This takes an enormous burden off the family at a very stressful time and it gives me peace of mind to know I have that base covered.
You know, perhaps a counselor would be helpful to you. Maybe speaking with someone who really does want to hear what you're truly thinking, worrying about, etc. and can respond objectively would be beneficial.
Take care and hope you enjoy the rest of your vacation.
Dianne

Re: My Update

Oops, sorry about that.  I just retread your post and see that you're home from vacation.

Re: My Update

I do understand you Lainy - LOL!!!

Hi Dianne,

My daughter comes to all my appts and treatments with me and perhaps is the only one who deals with my illness directly.  But sometimes, it seems, she doesn't even want to talk about my illness when we're not at an appt/treatment. Maybe I talk about it too much but it's always on my mind, especially when I seem to have pain so much of the time lately.  I do have a living will/directive that I prepared with the help of my lawyer and my daughter has a copy.  I have even finalized my funeral arrangements and my daughter also has a copy of that.  I wanted to make everything as easy as possible for her when I die.  I'm a very organized person so she was not surprised that I have everything in order.  Maybe I'm being insensitive to her feelings.  It must be hard for her since we are so close and she has no living siblings.  I'm divorced and she is not close with her father.  She's married so she has her husband and I come from a big family that she's close to.  So I do have her to talk to but sometimes I think it's too much for her.  The rest of my family is definitely in denial and I feel sorry for them.  They just can't accept that this disease will take my life and it could be sooner than later.  I feel like I always have to be upbeat around them and that can be tiring.  I guess I need to decide if I should talk to a counselor or maybe, as Lainy suggested, send an email to the family expressing my feelings.

Thank you both for the advice.  It has given me a lot to think about.

Peace & Love,
Mary

Re: My Update

Mary, I write a blog on caringbridge. I have posted the link and emailed it to family and friends. It is my way of telling what is going on, my feelings, thoughts and fears. I don't post often anymore: in fact, the last post was about Tiffany's transplant. But when I feel the need to let it out, I come here or go there. It is cathartic, and people have the choice to read it or not.
I have posted about my crying days, my fears, my hospital stays, my treatments, etc. I haven't posted how I feel guilty for getting this. My parents aren't supposed to have to worry about me. They are supposed to be enjoying their later years in Alabama. But that's what it is.
Hugs,

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: My Update

Thanks Kris.  Sounds like what I'm going through right now is all the feelings you have gone through.  It's good to know that others feel the way I do.  When I get down sometimes I feel like I'm being self-indulgent and need to snap out of it.  But it's hard, as you know, when your body is going through so much.  Sometimes I get so tired of it all that I just want to quit all treatment - but I'm a fighter so that feelings doesn't last too long.

Thanks for the words of encouragement.  I hope someday I can help others the same way.

Love & Peace,
Mary

Re: My Update

Call me if you need to. 267-625-9873.

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: My Update

Hi Mary,
Wow! I'm very impressed with how organized you are, and I strive to do that too.  I understand completely your not wanting to stress your daughter out by talking too much about your feelings, fears, etc. but you should be able to talk, cry, or express yourself as much as you need too. For crying out loud, if you don't have the right, who does?  When my husband was very ill and he would start to cry, his brother would say to him not to let the dark thoughts in and try to focus on the positive.  I knew he was trying to be helpful, so I kept my mouth shut but it made me so mad. My husband was dying, he knew it, and he wasn't allowed to mourn?  Geez, no ones ever said that to me when I cry and its a good thing too cause I might pop them one if they did!  Chris and I had some of our most meaningful discussions during that time and I'm thankful for them.  The point of all this rambling is that you deserve to be heard and be able to express your feelings. I saw Kris gave you her number and I'd like to add mine too. You can feel free to say anything you like. No judgements.  803-730-9041.
Take care,
Dianne

Re: My Update

Dianne, how far away is Tyrone? I posted in the members cafe section about meeting in person some day next month around New Hope area.

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: My Update

Hi Kris,
I mapquested it cause I'm not familiar with New Hope. Looks like its about 4.5 hrs. from Tyrone, which is close to State College and Altoona by the way.  PA is a big state isn't it?  Would love to meet you someday and I don't mind driving.  I used to live in SC and drove up here pretty frequently, and that's 10hrs. Seems like much less with a good book on CD!
Dianne

Re: My Update

Dear Mary,

I am sorry you are having a rough go of things. This disease sucks and seems to creep into all aspects of our lives. It would be nice to be able to forget about it for a while, wouldn't it? I agree with Kris in that writing can be very cathartic. If you don't want to write a blog, even a journal or a slip of paper is good. Write down your feelings when you feel down, mad, or scared and you will feel better. It is like a release of the bad feelings. You are such a sweet person and it breaks my heart to see you down in the dumps. Please feel better soon.

Love and big hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.