jean
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Thanks Marion! It does seem strange that the message length is limited…at least for me! Last night I tried posting a message after logging on and when I tried submitting it I couldn’t because I “wasn’t logged on”. Then I tried logging in again and my message disappeared and had to start over. I don’t seem to be having good posting luck!
Thanks for checking into it as I’m wondering if others are having the same problem.
Jean
Reply Part #2
I evidently write too long of messages so will again continue with a second message!Marion…Thank you for your welcome. It was a gentleman by the name of Jim who joined Lisa and I for dinner that night. Diane wasn’t able to come and I believe her husband, Brad, had recently passed away at that time. I was very glad that I had the opportunity to meet Lisa…she was a very special person. Marion, you amaze me. You are such an advocate for everyone who comes here and really for everyone with this disease. I hope you know what a difference you make and what an impact you have.
Thanks for ALL of your responses. It really does make me feel less alone in facing this journey.
Jean
I just wrote a long post that wouldn’t go through, so will try again!
Thanks for everyone’s welcome. Each of your messages has meant so much to me.
Jim…I can’t imagine how unsettling that must be. I’m hoping that it is just some quirks in your lab work and isn’t reflective of a problem. It’s good to hear that they’re keeping on top of things just in case. Did you receive any chemo after your 2009 resection?
Lainy…I was so sad to hear that you had lost your beloved Teddy. I’m so glad that you remain here as a warm, caring and knowledgable face to those coming to this site.
Percy…Thanks for all of your information. I appreciate it so very much. It sounds as if RFA may be comparable for small tumors, but I just feel a lot more comfortable with a resection. With regard to a PET/CT my surgeon believes that the single liver lesion is the only site of disease and that surgery would be the best means of determining that. I’ve gone back in forth in my mind regarding that. I do have concerns that if something suspicious was found, that it would rule out potentially curative surgery. It is perhaps more my gut feeling about my situation than anything! Thanks for the advice on sending the tissue for testing, I will definitely have that done.
Diane…Thank you so much for your message and email. It means so much to me. I was so sorry to hear about Lisa. She fought so hard and was truly an amazing person. I’m very glad that I did get to meet her.
Pam…I appreciate your positive and hopeful message. My thoughts have been with you and Lauren and am hopeful that her tumor shrinkage will continue!
Cathy…I’m so glad that you continue to do so well! You’re story is such an amazing one and I think that you’ve brought many people to that potentially curative option. Transplant does seem to be under utilized and I’m glad you’re there reminding everyone of that possibility.The new format evidently didn’t cope well with my long post! So, I’ll continue with a second post.
I live in Seattle and am being treated at Swedish Medical Center. My surgeon is Dr. Michael Hart who has extensive experince as a hepatobiliary/pancreatic surgeon. I trust him very much and he is also an exceedingly kind person.
I’ve come seeking the combined knowledge of the wonderful people here. So, any advice is very welcome with regard to the surgery, chemotherapy, best place for second opinions, and just advice in general. I apologize for my very long absence, but I simply came to the point that I could not be here. It was just to hard, to difficult for me. I know many of you will understand.
Thanks in advance for your advice and words of wisdom, as I know there is much of each to be found here!
Jean
Julygirl
I’m so glad to hear that everything is good to go ahead with the surgery…that’s very good news!
What you wrote is so true. Life will never be the same again. I’m approaching the first year mark of my diagnosis in April of last year. And it seems to me to be a gradual process of learning to live with this, the possibility of recurrence and that one might die of this. The initial fear, or should I say utter terror at first, and the realization that life will never ever be the same again. It is so overwheling and there are not words to really describe that. I know that, at first, I could only take in a moment at a time. I couldn’t even read very much on this site because I saw that people died so often of something that I had! I can only say that I have gone on to live my life as if I am cured, because I found it to be the only way I can do this. I have questioned whether that’s the best way to deal with not knowing what lies ahead, but I’ve found it to be best for me. Over the year, I’ve come to an acceptance that I have done, and am doing, all I can. And that’s all I can do. Of course, every scan brings up that fear again. And wouldn’t it be so wonderful if there was some marker or some event, that one could say “that’s it…I’m now cured…that part of my life is over”. I can only say that it somehow becomes a part of your life and you somehow learn to live with that. It does force you into rethinking your life and realizing what’s important, and what’s not. I no longer think about it all the time and neither am I afraid all of the time. Somehow it becomes integrated into your life…it is not your life. I hope that makes sense! What I most wanted to say is that I understand what your saying. We all understand…I think we have all felt the same way.
Please let us know how you’re doing. Again, I’m so glad to hear that the surgery is on track. That is very good news!
Sending all my best to you Julygirl!
Jean
Ladybug
Thanks for sharing your story with us. It’s so good to hear how well your husband is doing and the positive results from the surgery. Isn’t it amazing that you can have 80% of your liver removed and it essentially grows back? Wishing all the best to you both and continuing good news!
Jean
Michelle
Welcome! I’m very glad you found us here. And I’m very glad to hear what a good response you’ve had from the Gemzar and the radiation. What an amazing drop in your tumor marker! I read quite a bit of your blog and found your story and positive attitude so inspiring. I was happy to hear of the father of your friend who is a 15 year survivor of cholangiocarcinoma. Such stories give us all much hope! Thanks so much for sharing your story with us.
Sending prayers and positive thoughts that your good news will continue!
Jean
Sophie
I’m so glad to hear that you’re finally going to be able to start on the Avastin…that’s very good news! Know that there are no apologies ever ever needed here. We all do the very best we can and sometimes that means just getting through the day or the minute. Taking care of yourself is the most important thing you can do. It is good news to all of us that you’re much more comfortable and you’ll be starting the Avastin…I hope you know that is what matters to all of us here!
Sending good thoughts and prayers your way!
Jean
Dear Pam
I’m so sorry to hear about your mom. I’m sure she knew how very loved she was and am so glad that you were all able to be with her to the end. Just sending my prayers and wishes for strength and healing to you and your family.
Jean
Thanks to all of you for your good wishes! I so hope for good news for everyone here. My hope is that someday the “Good News” section will be the most posted to on the board…what an amazing day that would be!
Jean
Kris
I’m so happy for you…things are finally working out. You’re news really made my day!John
Thanks for sharing your friend’s thoughts with us. It’s such a meaningful thought for me personally and I appreciate him putting it into words!Jean
Hi Lisa!
I’ll also agree with Jeff and Lainy that it could be just about anything! But, I did have a thought, probably on the obscure side of things though! If you’re taking Zofran or Kytril as an anti nausea med with your chemo, they both have pretty high rates of headache as a side effect. So, just a thought in case you’re on either of those.
I think of you so often and am hoping you’re enjoying these beautiful days we’ve been having. I actually went out for lunch yesterday and sat outside…it was wonderful!
Jean
