Mini Mayo update

So Tom and I had a long day today--between 12.5-13 hours from walking out the front door to walking in.  We spent exactly half of it driving and half between appointments at Mayo and we are glad to be home tonight and resting a bit, it's going to be a busy week!

Most of you likely hadn't heard but our insurance was causing issues again late last week (like Thurs/Friday) by denying the PET scan, but also one of his CT scans--which has never happened before.  They also added a visit with the business office to pay for the $3500 test out of pocket.  We were in contact with the prior auth department at Mayo, the Drs team, and the business office.  The insurance company had approved an MRI of his abdomen and a CT of his chest, but denied the CT of his abdomen (which make zero sense as the MRI is closer to $8k) Long story short, I managed to share my frustrations with a patient experience representative yesterday and the physician did a peer to peer today.  Dr. Truty did apologize for all the frustrations with the insurance and shared that the insurance company was all confused about what was ordered, what was actually submitted, and approved vs. denied (maybe the Mayo PA department too, but that's a different issue).  However, it did finally get approved and completed today!  

First up was labwork--overall it continues to look really good.  His CA 19-9 there was 168--however we've been warned between comparing Des Moines to Mayo numbers as they are all calibrated a bit differently so they only look from our previous Mayo visits.  He got his CT scan completed and we grabbed a quick bite in one of their cafeteria style restaurants.  Tom very much would not recommend the meatloaf 😖 It admittedly looked awful, he said it was just really bland and blah (which is saying a lot since he can't handle any spice currently). 

Then we met with Dr. Truty and his team.  The CT scan was just being read while we were meeting and Dr. Truty had already looked at it as well.  He thought it looked very stable, however the radiologist noted an area warranting closer review (inflammation/infection/metastasis) between the gallbladder and liver. Dr. Truty wasn't concerned when he reviewed it live in the room, but made a note to look at the same area once the PET scan is complete and look at it with some pictures when they do the abdominal washing on Friday.  Keep good thoughts this week into next that results of both tests are improved!  

The slightly less exciting news--we are continuing Chemo still 😑 Dr. Truty recommends continuing chemo until either his CA 19-9 is below 35 "normal" or it stops working.  We did discuss the concerns from his last chemo and having to discontinue the Oxaliplatin.  We will be working with the local oncology team, but may be switching to a new type of chemo vs. continuing without one of the main drugs for the initial one.  I chatted with the NP this afternoon and they will be added us back to the schedule next week.  We will go back to Mayo after the next 4 rounds unless something changes (CA 19-9 hits under 35, it starts rising, or plateaus completely)

Neither of us is surprised as we anticipated he'd probably say more chemo...but obviously hopeful to move quicker to surgery.  Feeling like you are living with a ticking timebomb inside you is not a good time, so a bit disappointed, but realistic about the journey.  As soon as we have updates from the PET and washings, I'll make an update 😉