1

(9 replies, posted in Introductions!)

dear jeff....i'm so sorry for the loss of your wife.....i feel your pain, i lost mine this pass june i know what and how you feel...please know that we are here to help in any way.....lucille and ron

hi mn and welcome.....i have to agree with lainy... i have never known just a few day treatment... i would gather up all the records i could and send them out to doctors that have treated cc before, this is very important the doctor should be knowledgeable about this type of cancer and know how to treat it... then i would make myself knowledgeable about cc and any treatment, test and generally anything that the doctors suggest...knowledge is and can be a very powerful weapon......my best to your mom and you.....lucille and ron

hi becki,   
    welcome, i wish i didnt have to welcome you but you are in the right place for many of the answers you have questions to...you will find out that the people on this web site are not only careing but also very, very knowledgeable....all that you are feeling and going thru is all very normal...all of us here have gone thru what you are feeling, believe me we feel your pain.... i dont know if your emotional pain will get any better, mine didnt but we are all different.....but you will be able to handle it better in time.....the care of your mom will be in the fore front....your dad is going to need you to help him and believe me that is going to keep you both busy....arm yourself with knowledge, knowledge is a very powerful tool when fighting this monster.....tell the doctors that you want copies of any tests your mom has had...find out what is the next step the doctors have in mind, be sure the doctors are knowledgeable about treating bile duct cancer... forget what you have read about statisics none of us come with a expiration stamp only god knows....i hope mom is feeling better and i will pray for her......i know others will chime in hoping the same.......ron and lucille

4

(13 replies, posted in General Discussion)

dear chissy,
   
  i am so sorry to hear of your loss....i know that there are no words that will help you and your family, because i also have just lost a loved one......but he will live forever in your heart and your mind, he is out of sight but never out of heart and mind.....my thoughts and prayers are with you and family..........ron and lucille

5

(13 replies, posted in General Discussion)

thank you all for your kind words and prayers.....i will still be here, hopefully our knowledge may be able to help some one....i will continue to fight this monster along with you and continue to push for research....again lucille and i thank you

6

(13 replies, posted in General Discussion)

hi all, it has been a while since i have posted anything but i have kepted up with the site daily trying to help if possible. I will try to keep my post as short as i can.Forty two years ago this past March i met a young girl i took a fancy to, something about her was different,different from the way the young girls were growing up at that time. Me being backwards and shy i had to get my courage up to ask her out on a date, well i asked and she said yes. We went to the movies and dated for 2 years and all during those 2 years not a day went by that we were not in each others company.We went and did everything together, no matter what we had to see each other.I never wanted or loved anything or anyone like i loved her in my life, she was my world. We were married on March 6th, the day after her birthday and i vowed never to leave her side and i never did. For the next 40 years waking up everyday and seeing her was all i ever needed.Even when we would argue, and we did, what married couple doesnt, a kiss goodnight made everything all right. Things were going good,the kids college and weddings were paid for, we bought a house on the ocean and said its time for us to enjoy life, we earned it. Then a simple blood test brought our whole world down, her liver levels were a bit elevated, but not to worry its probably a stone. Well it turned out to be cholangiocarcinoma, that was three and a half years ago.The doctors gave her 6 months, which we refused to believe and she fought like hell, first chemo than s.i.r.e.s and after that nothing. All she wanted now was to enjoy our granddaughter and just life, the simple everyday things, which i made sure she did. The crazy thing is, is that she looked like the picture of health, you would never know she was sick by looking at her. This past thursday i lost my love, she past away at home with me and her family by her side and i kept my promise to her, i never left her side. This, watching her go was the hardest thing i have ever done. The moment her heart stopped beating so did mine, i made her another promise, that when my days here on earth are done that i would find her and i will. So if you have some one you love tell them you love them, hold and kiss them you will feel better for it. Now, i just want to thank the people on this site who have been so helpful to us for the last three and a half years and again im sorry for the lenght of this post.....thank you and god bless you.....ron and lucille

7

(187 replies, posted in Hospitals)

DR. MYRON SCHWARTZ-LIVER SURGEON
                                            5 east 98th st-mount sinai hospital-12th floor
                                               new york, new york
                                            phone number 1-212-241-2891
                                     
                                         DR.MAX SUNG -ONCOLOGY MEDICINE
                                             1 gustave l. levy place
                                                new york, new york
                                             phone number- 1-212-241-7902
                                       
                                       DR. JOSEF MACHAC-DIRECTOR, NUCLEAR MEDICINE
                                              one gustave l. levy place, box 1141
                                                      new york, new york
                                                    phone number- 1-212-241-7888
                                     
                                         DR. JOSHUA WEINTRAUB- RADIOLOGY
                                              one gustave l.levy place
                                                  new york, new york
                                              phine number-1-212-241-4888

all of these doctors are under one roof and are KNOWLEDGEABLEof this cancer... i cannot say enough good things about the hospital or its doctors......ron and lucille

nancy, thats another thing i love about these doctors..we e-mail them a question and they answer you,they actually answer you...you call a doctor here(i live in jersey to ) you get an answering machine saying everything except leave a message....no only cant you get in touch with the doctor they tell you massages are not taken on this line...call 911...well you know what these dotors can kiss...excuse me.....ron and lucille

i just e-mailed dr.oz and the rest of the t.v. personalities and once again ask them for their help, lets see what replys we get.....ron and lucille

lainy....everything you did for teddy came from a heart filled with love you did what you had to do and teddy knows this....most important you were there with him and held him in your arms....no one can take that from you......ron and lucille

slittle....its always great to hear good news.....keep it up (the finger too! )ron and lucille

dr. schwartz is my wifes doctor...i cannot say enough good things about him, his staff and mt. sinai hospital ........ the doctors and hospital are in a differant class by themselves.....insurance, no insurance they care only about treating the patient.....and everything you need for cc is all under one roof....the main thing is KNOWLEDGE ABOUT CC and how to treat it.........here is his info.......good luck.......dr.myron schwartz......5 east 98 th. st. 12 th. floor...1-212-241- 2891.....parking one block away.......ron and lucille

i am sure that we can come up with something if we get enough people to join in......we are going to our daughers house for Christmas and for a short while there will be no talk or thinking about this monster.....just want to enjoy the time with family and friends......take care and be well and have a Merry Christmas.....ron and lucille

14

(2 replies, posted in Members' Cafe)

We would like to wish every one a very Merry Christmas and like they say "have yourself a cup of cheer".....ron and lucille

snezzie,
   the only thing i can come up with is  that if you make enough noise some one will hear you.....how many members do we have...,family of some one fighting this, friends of some one fighting this? get every single one of us and them and i mean every one to write and e-mail the ellens, the orpahs, the oz, and just keep doing it until they realize that we wont go away until we are heard....we must do it all at once and just keep doing it , but all together...when you recieve one or two letters its easy to put them aside, but when they recieve 3,000 letters all on the same subject its not so easy to put it aside...and if we dont get a response the first time,do it again,and again....in plain english we must become a pain in their asses, excuse me please....if we put half the energy in this as we do as caregivers we cant lose....this is just my crazy idea, i am open to anything the members think will benefit our loved ones.......united we stand .....devided we fall.......ron and lucille

cheryl,
      having a high tumor marker doesnt mean you have cancer or that the cancer has spread..it is just a guide line the doctors use if they suspect cancer and then go on to perform other tests.....high tumor markers can mean any other illnesses, but contact the doctor and let him explain it to you...prayers ron and lucille

17

(10 replies, posted in Good News / What's Working)

cinnamin,
     thats great, we love to hear good news...continued success to your dad .....prayers....ron and lucille

good luck, we have e-mailed all of the celebs. talk show hosts almost a year ago and have never recieved as much as a  hello back.....even tried some of the medical doctors on the nightly news channels, no reply...maybe if every member sends them an e-mail, around the same time and day they might take notice.....so lets bombard them with e-mails........ron and lucille

samlee,
   dr. howard bruckner.....new york.....phone number 1-212-228-4800......40 years of medical oncology.......ron and lucille

20

(20 replies, posted in General Discussion)

lainy,
   if one is truly lucky they find that certain person in life to walk down lifes path....teddy and you were lucky to have found each other and to have shared each precious day together....ron and lucille

kim,
      thank you,like marion i had to read it twice....truly amazing, you have made a very heavy load seem just a little bit lighter with your story....thank you and may GOD keep you safe.....ron and lucille

22

(33 replies, posted in General Discussion)

lainy....all we can do is send you our prayers and keep you in our thoughts...i wish there was more that we could do, funny how you never met some one but feel like you have known them all your life....thats how we feel about you guys....when i was a young child  around this time of year i was told that you could make a CHRISTMAS WISH, a special wish for anything you wanted....well i just made that wish for teddy and you along with every one else who is going thru this...... prayingfor my wish to come true , ron and lucille

hi everyone,
      it has been awhile since i have posted anything but i am on the site everyday(or should i say in the wee hours of the morning because sleep, what ever that is has been avoiding me for the past several months). Being a man i always new what  a task it was being  a married women with a family, especially if the women worked.I would tell my kids that after school you come home do your homework(maybe) and your day is yours to do with what you want....not mom, she still has to make dinner, get things ready for the next day,a load of laundry maybe, what ever, her time is not hers. Although we all pitched in she would still check on everything just to make sure it was done right. i would always help her with the cooking and cleaning but she took care of the banking, bills , the majority of things.  When she became ill ,in the beginning ,she was still able to do a few things for herself, but  having chemo, surgery and other treatments completely drained her and it ripped my insides out watching a once active women become inactive. So now i take care of everything from a -z. I get angry and pissed-off and we fight sometimes because she becomes irritable and grouchy and things are said that are hurtful and they do hurt. And as a caregiver i believe we have the right to get pissed-off too, for me its the frustration of feeling so damned helpless. BUT we take care of them anyway because i know that if the  shoe was on the other foot  she would be right by my side helping me anyway she could. So,  almost after 3 years  of many procedures, fights, sleepless nights and 35 pounds later i continue to go on and will continue until we win or lose this battle. Please excuse the lenght of this post all i really wanted to do was wish everyone a HAPPY THANKSGIVING, so enjoy the day if possible with your loved ones even if they are crabby.........ron and lucille

24

(33 replies, posted in General Discussion)

lainy and teddy,
     
         you and teddy were the first ones to welcome my wife and i to the web site that now seems like so very long ago......your kind words and attitude always seemed to bring some sort of comfort to us, and for that we will be forever grateful......although we have never met  lucille and i feel like we have been your neighbor all our lives...we will keep you in our thoughts and prayers always, we join with the others  and send our prayers to teddy and your family......lucille and ron

25

(80 replies, posted in General Discussion)

i have not posted in a while,i had to take a break because well i was just getting to upset and emotinal reading about how this monster is effecting the lives of the good people in this foundation...this might be a long post so let say im sorry now......
        my wife has been fighting this monster now for the better part of 2 years and putting up one hell of a fight...she has continued to work through most of those 2 years, even while recieveing chemo and the y-90 treatment because she said it kept her busy and her mind off of this monster...ive seen how she would drag herself out of bed aganist my wishes and go to work, she has a strong will...she did this up to 8 months ago and couldnt do it anymore so the doctors put her out on disability which they wanted to do from the beginning...while she was out on disability she had her company benefits so her medical care was taken care of ...now we just learned that her company is going out of business and her medical benefits will end the end of this month...not to worry i told her we will just pick up the policy (corbra) and pay the monthly premium for the same coverage that by law they have to offer you...well it didnt turn out that way...it seems by law they have to offer you a policy but not the same coverage...the policy they offer covers nothing but some, some of her blood work, no infusions, no port flushings, no chemo or chemo meds.and no treatment for high calcium and i can have all of this for 800 dollars a month...dont you love insurence co. they will let me pay for nothing...when i ask for a policy that covers her treatment needs they say sorry there arent any..im willing to pay and i cant get coverage for her and i have tried them all... so now we go to social security and try to get medicare..we are once again told sorry we can not help you, your wife is to young (58) for medicare and hasnt been disable long enough to be eligible for benefits...seems that you have to be disable for 2 years before you are eligible for medicare...so where does a person go in a situation like this...to me its just unbelieveable how they just dont seem to care about the people in this country....well i think i went on long enough, there is more lots more but thats it in a nut shell...again im sorry for the long post and know that you all have been in our prayers and will remain there.....lucille and ron