My update and upcoming appt. at Mayo, Rochester, MN

Linda,

Good luck at Mayo Clinic – that’s where Ben and I started on this journey and believe Mayo is truly an incredible place. Not all doctors are perfect or have the bedside manner that fits everyone, but we found the Mayo doctors as some of the most patient doctors around. Our oncologist was Dr. Pitot – although we only had one meeting with him (but we have called him a couple of times), he had given us good guidance on local administration (although I would say, that sometimes his “bedside manner” can sometimes be abrupt), but he is direct – but has always been right on with his advice…and that’s the most important for us. All of our other doctors at Mayo we also deeply respected.

Good luck and I would be more then happy to help with any navigation while you are there – but they really make it so easy for you.

tom

Hi Linda,

Best of luck with your appointment on Tues – lets hope you get a good & helpful doc!

As for the concert, tricky one. I wasn’t able to go to any of the concerts I’d booked for in the summer which was a huge disappointment but I knew if I tried I’d have been so ill it would just not have been worth it.

My main sacrifice was Eddie Vedder – such a shame! How about your brother rings Jon Bon Jovi & gets him to come along to the hotel and see you personally? JBJ would take my mind off ANYTHING for a short while!

On the ibuprofen debate, I think that most of the NSAIDs (ibuprofen, naproxen, etc) are a potential problem for anyone with problems affecting the GI tract. They can cause gastric bleeding & inflammation so I guess none of us need any help in that direction.

You take care, really hope it all goes well on Tues,

Val x

Linda: I hope that when you get to Mayo you are not assigned the same liver specialist that was assigned to my husband Tom. (Dr. Dunn) He had no compassion what so ever and said that getting his external drain internalized was ‘cosmetic at best’ and he did not understand at all why he wanted an internal drain. During our first appointment with him, he came into the room, introduced himself, then spent 20 minutes searching through the records, and kept saying “Jesus”. He asked where we were from and stated “I cannot believe that you drove here from Green Bay, Wisconsin” (It’s about an 8 hour drive)….after 20 minutes I finally asked him what he was searching for and he said “I’m trying to find when and where he had the Whipple Procedure preformed” to which I said “He did not have a Whipple, he had a left liver lobe resection at the Milwaukee VA Hospital on June 16, 2008, with Dr. Thersa Quinn” He looked at me and said “Are you a doctor?”……”No, I’m his wife and I know what was done and when, I’m very involved in his care”.

Luckily the Interventional Radiologist thought differently. Although he tried he was unsuccessful but after getting the pre tumor scans he was willing to try again. After our 2nd trip to Mayo, the IR was still unable to internalize the stent. But at lease we tried, else I would have spent the rest of my life wondering “What If”

So although our trips to Mayo were unsuccesful, I would highly advise Mayo Clinic to anyone whose local doctors cannot figure it out, because they will give it their best shot! The way we figured it was if Mayo could not get the external drain internalized then no one would be able to. Apparently Tom’s new tumor plus the radiation, somehow destroyed the bile duct. So worse case scenario, he has the external drain for the remainder of his life. Things could be worse, right?

And as far as the Bon Jovi concert, I’m kinds leaning towards what Lainy says – I know how much the drive to Mayo tired my poor Tom out and if I’d tried to fit in a concert too, well, I think that would have been just too much for him to handle. It’s amazing how much just riding in a car as a passenger can tire him out. I’m thinking that you just need to get to Mayo, veg in the hotel room, maybe do the hot tub thing, eat a good meal the evening before (cause you won’t be eating breakfast as you will most likely need labs)…..

Hope your trip is a successful one! Did they tell you to plan on staying at least 1 to 3 days?

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Linda,

Just to add my best wishes as the others have done for your very important consult with the onc from Mayo.

Fingers crossed, enjoy Bon Jovi if you decide to go.

Katie

Linda….hope it all goes well Janet

Linda;
I have gone to Mayo for the last 3 years. If you are interested I would be happy to meet with you while you are at Mayo. It is about an hour from my house. I have seen 3 different oncologists there. If I can be of any help please just let me know. Feel free to send me an email and I can give you my phone number. Take care and God Bless,
Jamie