The Tumornator: Tom's updates

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 ...

Most of you already know this, but Tom is literally the most impatient person I've ever met *sigh*  I have a lovely picture of him with his swag of what we hope is he's final chemo treatment (see below).  However, he couldn't wait for me to get this written tonight and posted his certificate while I was at work today.  Last night, I had a late work meeting and he was worn down...onto the updates 😀 His weight was down slightly--however overall stable still--he's been hovering between 143-149lbs for the past 2 months.  While certainly low, he's weight has pretty well plateaued.  His lab work overall looked really good and his potassium that has been low the last 2 times was actually on the high end of normal, so we are reducing his supplement.  The CA 19-9 continues to drop slightly...but no more big drops.  It's currently at 157 (last time was 169) Still elevated as normal is under 35 but we don't know what the surgeon will think about it.   ...

Some of you have seen or heard, but Tom finished what we had hoped would be his final chemo this past week, #12.  Unfortunately, he has at least one more round...potentially several more depending on how the next steps go.   This entire journey has been a fair amount of up and downs, but this treatment was definitely a downer for both of us.  His weight was down slightly again by 2ish lbs and his CA 19-9 that has been dropping nicely just barely dropped.  It wasn't quite a plateau, it did drop like 6 points from 175 to 169, but still disappointing.  The only positive I can say was that it didn't increase.  Side effects have been a bit worse this time as well and it's hard to tell if it's just the chemo, the cold weather, or mental effects as well.  Tom's been more fatigued, his cold sensitivity in his hands is still lingering (he wears knit gloves at all times currently) and his GI symptoms continue.  His potassium has been low because of the...