Topic: WOW! Talk about a rollercoaster ride!

I just want to start out by saying...I truly did panic this past weekend....Lee was as sick as I have ever seen him, and thought we were living our last days with him...he was feeling the same way....I am sorry for sounding like such a raging lunatic! But as you all know...every single day is a rollercoater ride....he might be great one minute and really, really down the in  the next fifteen...Kris, you were right....the PET does not pick up the tumor cosidering its size and placement...we spoke to the radiologists and she said the exact same thing....we were just so hopeful and so excited we thought for sure God had given us a miracle...but what we have learned is that the miracle might no be immediate healing...but in the days to come...the miracles are the every day little things that if you stop the insanity long enough to look around and think about it they are there and happening all of the time. Our biggest miracle yet is that we are going to Rochester Mayo on April 12!!!! The doc's on vacation now {imagine that!!!!!}. 7-10 days of testing.....does anybody know what we can expect ....on the agenda...liver transplant,  plan for attack and removal of cancer....that is all we know. This is not the time we will be getting the liver however. So, needless to say as you all know...up and down, up and down....I pray that all of you continue to have the strength and courage to continue on this crazy ride!! God Bless you all!

Re: WOW! Talk about a rollercoaster ride!

I can't tell you what to expect at the Mayo, but we were run through the mill at the University of Utah. Expect days of intense testing on everything to rule out any other cancers, and meetings, meetings, meetings. The first person we met was the financial counselor. We then met a psycho/social worker (I really did consider her to be a bit psycho). We met the oncologist, the radiation oncologist, the interventional radiologist, the hepatologist, the surgeon, and several different nurse coordinators. Whew.

It is critical to determine who the alpha male/female is; the who has the most say in your care. Ours is the hepatologist who will be seeing us for years and years, while everyone else should just fade out in time.

We are still waiting on the top of the list for a transplant. Scott does not show any tumors at all, but we know that with the nature of this beast, it does not just go away. I really do believe in miracles, but since there is no way to prove that the cancer is really gone, we have to press forward with what they say is a solid cure.

God Bless you on this journey. My prayers are with you.


Re: WOW! Talk about a rollercoaster ride!

Glad to hear you were able to get into Mayo so quickly!  I cannot tell you exactly what to expect, as I've never gone through their process myself.  However, I do know that they do not experience the long wait times that you may find at MD Anderson.  So, I think your time spent their may end up being pretty efficient.  And if it is doable, bring another set of ears to sit in on all the meetings with you.  It sounds like you'll be shuffled around quite a bit during that 7-10 period - that's a lot of information to digest, and it would be helpful to have someone else in the room with you when meeting with the doctors.

If they haven't already mentioned it, talk with the folks at Mayo about their free housing option.  I know they have a lodging option that is pretty close to the hospital, and frequently used by the radiation patients that have to be there for 2-3 months for daily radiation treatments.  I'll see if I can collect more information as well.  It's a great option for those staying in Rochester for a week or longer.

30-something caregiver

Re: WOW! Talk about a rollercoaster ride!

We went to Mayo for a second opinion about 18 months ago and we were very impressed with how organized they were.  Joe was already Stage 4 so there was not talk of a transplant but the appointments were set up ahead of time and we went from one department to the other at the scheduled times and finished with the oncologist who had all the results and gave us our options.  We only saw the fellow, not the actual oncologist but he conferred  with him.  Since I took my nurses training there many years ago it was different being on the patient side but I was very impressed.  We did have to sign a form that said if insurance didn't cover the tests, we were liable but for the first time I ever saw, they had the prices of the tests right on the page.  Medicare did cover them so that wasn't a problem.  I wish you good luck and hope you have a good experience.  mary Anne