ldittmar

I just came back and read my post. It’s been a year and a half now. You know what I didn’t like when it pushed past the one year mark? I could no longer say, “Last year we….” It gets further away from me. No new pictures to look at. I miss him still, everyday. The house is overwhelming. I still can’t make decisions about the future. I’m torn and sometimes feel paralyzed. I cry at the cemetery, or when I walk my dog. I’m used to being alone. I’m forging a life, reinventing myself. It’s okay…but I feel so many decisions loom ahead. I still wear my wedding ring. So, is this it now? I go through my last 20 years remembering him, alone, still feeling married and trying to keep myself busy? Yes, I do keep busy. Winter is brutal…long, dark. But, I’m okay,. I’m doing okay. I’m bored, though, and in a rut of a routine and talk my friends’ ears off because I rarely have adult conversations. It’s hard to feel whole. I don’t. People say I will. I don’t know that I believe that. many many people posted on my sister in law’s facebook page…in response to her sweet statement about thinking of her brother that day and the things she’d like to tell him. 90% of them said: go ahead, he hears every thing, he’s right there smiling and listening. I confess…I got a little angry. There’s no evidence to suggest he’s here, hearing me. He’s in my heart, yes…fills my mind. But, no, those words sounded hollow and unknowing. They meant well, I know. So…I keep moving forward. Seeing kids. Working hard. Painting. Just living forward…

Thanks for checking on this! His previous treatment involved 5-FU and radiation. The lesion is small. I need to double-check the size.

I appreciate you asking around!

Laurie

Thanks! I will ask these questions and make some requests.

And………so…….just to clarify and confirm….your recommendation for CCA is Mayo? I will pursue that one…..

Again….thank you! So much!

Thanks to all for your encouragement and input!

PCL: Sorry; I wasn’t very concise. The following fills in the blanks:

1st diagnosis – September, 2011

Whipple – September, 2011 (result was distal tumor, no invasion, small. The only issue was the cells were a little closer to margin than he would have liked.)

Radiation – December, 2011 w/5FU

Chemo – mid-January, 2012 – May, 2012 w/gemcitabine and cisplatin

Multiple CT scans – all clear (every 3 months from December, 2011)
Continued abdominal discomfort – all along (inflammation noted on CT scans, but nothing alarming, just part of the recovery)

Recent routine follow-up CT scan in September, 2012 – all clear
CT scans always accompanied by blood work – no issues in September, 2012

Goshen – Blood work – mid-December, 2012 – elevated CA 19-9 and CEA (noted that CA 19-9 was tripled from September, 2012)

Goshen – Follow-up CT scan as a result of elevated CA 19-9 – mid-December, 2012) – nothing remarkable to explain elevated markers. 2 4mm spots on Rt. lung….oncologist did not express concern over these and remarked they are not related to elevated markers.

Goshen – Tumor Board Meeting this past week – group recommended Endoscopy to check bile duct area

Goshen – Endoscopy scheduled – Monday morning (12/31/12)

His surgery was at Indiana Univ. hospital by the hepatobiliary specialist, Dr. Pitt. Dr. Pitt was a long-time surgeon at Johns Hopkins and is chairman of the medical school at IUPUI. He has contributed multiple research articles on hepatobiliary cancers and surgery in various journals. We have a high level of confidence in him. Unfortunately, he has retired from the surgical side of things; his fellow has stepped into his shoes. We also have confidence in him. Johns Hopkins and Duke background. They have both expressed a lot of confidence in a good long-term prognosis. They think he will do really well.

But……a 2nd opinion has been on my mind now that this elevation has occurred. I’m glad to hear that confirmation from you. Perhaps we see what the endoscopy shows and then pursue another opinion?

His medical oncologist was referred to us by the Indianapolis medical oncologist. He practiced in South Bend and recently moved back to the cancer program at IU Health – Goshen. He has been a great advocate.

So…….2nd opinion is in order? Mayo? Does anyone have experience with Johns Hopkins? It’s hard to determine where to go….but I am very appreciative of your experiences at Mayo. Thanks!!!

I’m still wondering about undiagnosed chronic pancreatitis. Course, I feel like I have a medical degree after all of this! Anyway…I’m going to bring this up as well.

Thanks so so so much for your feedback. I REALLY appreciate your comments. Feels like light.

Laurie