(1 replies, posted in Members' Cafe)

You have all allowed me to tell you about my Ulcerative Colitis and to complain to you so it is only fitting to give you some good news. I am not going to be flushed down the Loo easily! Had a Colonoscopy today and for the first time in 3 years, good news!!! My colon is half healed. The upper part is good but the lower part is still pretty irritated. I will see the GI on Friday and we will talk about some new stuff that has been approved. For the first time I can see a healed AXX at the end of the Rainbow!!!
Too funny. This space cadet put in my IV to which the Propofol is added for a nice sleep. I felt the IV leaking water and the Nurse in the Colon room said yes it was leaking so she taped gauze over it and while she was doing that I felt Dr. M get a little too close to my ah, entry. My hand went up at the same time she injected the Propofol and I yelled out, "Not Yet Dr. M." I don't even remember anymore as the next thing Robin was sitting with me.  Guess you had to be there!

STOP IT!  Honestly you are too funny and should take your act on the Road. "Love ya"


(163 replies, posted in General Discussion)

Tom, this is not what I ever wanted to hear but let's not count anything out yet. The important thing is you will be very strong and you have this whole huge cheerleading team behind you both.
I would just like to raging swear but will remain a lady. We just love you guys so much and I am standing right beside you for strength and support. I do know what you are feeling but try to be strong for Ben. Please, please keep us updated if you can.

Dear Supermum, welcome to the best place to be for CC support! I am so very sorry to read about your husband and my husband started out exactly like yours! In the Ampulla of  Vater. That was 9 years ago and there was no treatment plan after surgery  for it at that time and location. It returned 3 years later and he had Cyber Knife which bought him another 2 years. My Teddy went through an aborted Whipple and then 10 days later the real deal also with clear margins. The good part for your husband is the ONCs are more aggressive now and there are newer things to try. Teddy's never MET anywhere, just kept returning to the same place. I am so sorry but looks like Supermum has just turned in to Super Woman. I am glad your husband healed rather quickly from the Whipple and at this point I would probably stick with what you are doing especially since your ONC is not afraid to change up treatment is necessary. Please come here as often as you want and while I am glad you found us wish you didn't have to. Also please keep us posted on hubby's progress as we truly care.

Dear Cillie, just want to say you are a fast learner and this last post is just what we wanted to hear. YOU GO, GIRL! MDA is very user friendly and you are not going to have a problem there. Unless you feel better taking a Megaphone! I can't wait for your visit either!!! BTW when one feels that their ONC does not make them 100% secure in their feelings it is def time for another opinion!

JTaylor, your "Love" is so right in what he is telling you. I feel if he is mentally strong enough to leave then you have to be strong enough to accept his wishes. Our boys just want us to be happy. We have no answers now but some day we will. I discovered that believing in the beyond has really got me through. I feel Teddy al around me all the time. I know he is waiting for me but very patiently, he was a very patient man and I always want things done yesterday. But I am abiding by his wishes. It is not that scary and in a way there is kind of a relief that they are not going through this CC anymore. Going through what I did with Teddy at the end only took away any fear I ever had of leaving. I can't wait to be with him again however, I am not ready yet. He will let me know when he is ready for me. Frankly, I think he is enjoying his new life and there is nothing wrong with that. Many of us have received word from our departed loved ones (dreams) in which they let us know they are healthy and happy. I think you are going through what we call pre grieving. Very normal sad to say. As you go along this journey it is also just fine to ask your Doc for something to help get you through. Just a little something goes a a long way. As usual please keep us posted as we truly care.


(163 replies, posted in General Discussion)

Tom, so sorry Ben is still suffering from fluids no matter what kind. I know how you feel as I was so in awe of Teddy and his attitude. He was only about 5'5" but in my eyes stood about 6'. What an attitude and when I would ask him how he did it he would say, "I was trained by the best".  What a mind of steel. Ben seems to be the same way and I think a lot of it is they are trying to make things easier for us. But the stronger they act it really does help us get through. 15 days now! WOW! Think you should buy him a present for each day!!! Please keep on keeping is posted and  I think it a smart move to send things to MDA as they also know Ben well. I always feel a different set of eyes may see things differently. Sending my love too you. Hope T is not getting angry as I love so many men on here!

Dear, Dear Margaret, so good to see your smiling face. Hope you are doing well in your "New Normal" as I call it. So good to see you here and thanks for dropping in.

Duke. aggressive is excellent!

Duke, Militant is not a great word to use lately! To me you are a Hero and a warrior and tell your wife to forgive me but I just love you!!!!!!

Mitch, the only one I know of with CC experience is H. Moffitt Cancer Center in Tampa FL. Oh, also Methodist Hospital in Houston. I don't know how far you are willing to drive but Barnes in St. Louis is also excellent. Most of the others who excel with CC are upper half of USA. On our HOME page is a Category of Hospitals and/or we have a Research engine at the top of the page. Just type in a couple of words like Louisiana Hospital and see if any posts pop up. There are a lot of Hospitals in the East and West upper Middle but not that many in your area. Hang in here and lets see what others have to say as the day goes along.
P.S. No matter where you go you will need Disc's of all LABS and procedures so that is something you can start to work on so you will be ready.

Dear Tabytha, welcome to the best place to be for CC support. Yes, you are one of our youngsters and I just have never understood how this could be.  You are doing the best thing by getting an opinion from MDA. And don't shy away from a 3rd or 4th opinion either. Go until you are completely satisfied. I LOVE your attitude and wish you could bottle and sell it or give it away. Attitude is everything! Please let us know how your visit to MDA goes and keep us updated on your progress as we truly care.  BTW I knew one other Tabitha (how she spelled it) in my long life who worked for my EX many years ago, many years! But I totally just loved that woman so it sounds like you Tabytha's are pretty much alike.
P.S.  We have had other members who had mets like you do and the Chemo cleared those out.

Mitch, the only thing I can come up with is one more opinion. I don't know where Robin is being treated and I do know that MDA is one of the best but sometimes that 3rd or 4th opinion can change the game. I am guessing she cannot travel too far or by plane with the other health issues and that perhaps you drove to MDA? If you feel you want to get that 3rd/4th opinion then we can throw the question out here of what others know about a Hospital that has treated CC nearer to New Orleans. We do have members here who were told the worst news and then went for other opinions and are doing fine. BTW my daughter's name is Robin.

Dear Mitch, you both have really taken a horrible ride on the roller coaster and honestly I am at a loss since everything has caused big health problems for Robin. May I ask how old Robin is? The best I can say for right now is to hang in here a bit and let's see what other Members here have to answer. All I can say is this is the best place to be for CC support and don't apologize for long posts as it is very cathartic to write it all out. Please keep us posted as we truly care and I know you will get more responses today.

Dear Jean-Marie, thank you for the update although it is not what we were looking forward to hearing. You are an outstanding Caregiver and fighter and I am hoping for the best for you both. Please keep us posted as we all really care.

Thank you CTWong, for the explanation and I sincerely hope your Mom is doing well. Please keep us updated on her progress and know that we truly care.

Dear Carl, I am so very sorry to read about Lynn, a very special lady who I am sure will be a welcome soul to Heaven. Please accept my humble condolences and know I am thinking of you.
I love the following poem and of course it would be from Lynn to you:

If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.

Oh, thanks Marion.......like some drugs I have seen for Crones that may work for Colitis! I got it. See, you can teach an old dog new tricks. Thank goodness then for the Doctors who are willing to try and wonderful for the patients that it works well on.


(12 replies, posted in Members' Cafe)

Hey, Porter, I know it's not the same BUT I have scans every 6 months for the GIST tumor I had and now they are seeing shadows. I believe them that it is scar tissue as I know that is how I always heal, lots of scar tissue. Got to schedule a scan for next month and if all is well OCT 1st will mark my 5th year cancer free.
Dates have not been discussed but I would imagine after Christmas like Jan or Feb...when they need a break from the cold.  I will keep you posted. Glad to hear you are doing so well. You and that handsome young man of yours!

Dear CTWong 81, welcome to the best place to be for CC support. I am a little confused as I read some articles on your fabulous drug and no where does it say it is for CC. In fact it can cause side effects that are much like CC symptoms.  I am so happy for you if it is working for your wife but find it strange that the ONCS would use it for CC. I am wondering if any of our members have heard of this drug for Melanoma to be used for CC.


(12 replies, posted in Members' Cafe)

Porter, Porter, Porter, how are you doing. If you are talking about having the port removed I take it you are doing well. I certainly hope so. I have missed you and wanted to know if any plans to visit AZ in the near future? Julie is planning a swing through here in the winter and I am trying to get Kris out here as well in the winter. If everyone makes it at about the same time then Darla may join us too. Take care and I think about you often.


(12 replies, posted in Members' Cafe)

Yay, Julie, we will add a new favorite word to our favorites.......port removal!!


(12 replies, posted in Members' Cafe)

Julie, Girl, will we recognize you without your Port???  Good for you. Logically, I would think coming out should be easier. If you are cooking up a storm then I know you are feeling good. I decided this year for our High Holy Days to make 1 big dinner between both Rosh Hoshana (New Year) and Yom Kippur (Day of Atonement). I do bits at a time and freeze as I can't do everything at one time. So today made my chicken soup and 38 Matzo Balls for the soup. I feel like I was run over by the matzo balls. Cheez   I am tired. Next will be the noodle Kugel and then the glazed chicken. My Grandson who just started ASU wants to bring 5 friends. My Grandkids have brought friends to all holiday dinners forever. Well, let us know how you do tomorrow and wishing you a speedy with drawl!!!!


(163 replies, posted in General Discussion)

Aw, Tom, so sorry and I just posted on your other post about your trip. At least you got to see family albeit quickly! I have no advise for you on this one. All I can do is wish the best for Ben. My thoughts and good vibes with the best juju are all going out to you both! You know the drill...please keep us informed.


(4 replies, posted in General Discussion)

Tom, brilliant remark about someone maybe getting confused between not starting yet with a high Billie and I am still sure that a top Hospital like ECSF would treat a patient for high Billie. You must be back at the airport, hope you had a great time and that the break was good for you.

You are right Val, taking it day by day is the best you can do and one day all of a sudden all of your wonderful good memories will over take the bad and you will also feel your Dad around you much of the time. I am sure he would want you to carry on and be happy and I know he had to be so very proud of you!