Big bellies and tiny hamsters: adventures in rare cancer treatment

I'm not even sure where to start.

let me explain

Friday night, we drove to Ruby Joust, or more specifically to the hotel just off site. When we pulled up, Rich was in bad shape, shivering, feverish and with a bloated belly. He slept all day Saturday and we went home Sunday. By Sunday night we went to the ER but they were of no help other than giving Rich morphine and a bag of saline.

We flew to Nashville on Tuesday and it was a tough time getting there. Rich hurts so badly he needs a wheelchair to get through the terminal but wasn't fully aware of just how necessary it was. I had to go on a hunt for a chair while I left him in the food court. Our flight was delayed three hours but we made it.

Wednesday we did the CT scan in the morning and blood work at Sarah Cannon. We met with Dr. Bendell and she was very concerned. Rich is normally very jovial and chatty on his visits, showing pictures of Ian and asking how all the nurses are doing. Everyone was on high alert when he came slowly walking in, wincing with every step.

We tried to drain some of the fluid off of his belly in the imaging unit (where they use ultrasound to find a good place and then insert a drainage tube to suction it off). Because the fluid is so "locular", meaning it's separated out by little bits of connective tissue like large pockets of bubble wrap, it's hard to get much out from one small opening. We drained 350mL (the same as a soda can) or so but it didn't provide much relief.

Dr. Bendell then wanted to have Dr. Richard Geer (not even making that up) try a laparoscopic surgery to see what he could remove. He looked at the CT scans today and felt like it was not something he could do. Dr. Bendell is leaving for a conference today but spent all morning on the phone calling around to find the best surgeon she could to help Rich. Meanwhile, his nursing team got to work ordering scripts for morphine and zofran. I have so many pill bottles in my purse right now. So many.

Between 7:30 and 9am this morning, the Sarah Cannon angels found us a surgeon. Dr. Perry Shen at Wake Forest Hospital in Winston-Salem should be able to do a "debulking" surgery for us next Friday (June 6). We're flying home today, Rich is doped up on morphine, and his hiccups are gone for the moment. (Edit: Hiccups came back as soon as he woke up.)

The hiccups, man. They are just a constant sucker punch. He hiccuped all night last night. All night. We have tried every home remedy imaginable. We have tried reglan (stomach-emptying med), baclafen (anti-spasmatic), and zofran (anti-nausea). The oxycodone doesn't stop them and only maybe does the morphine stop them. This happened after the surgery 18 months ago. It also happened after his eardrum reconstruction in the Army. So apparently this is how his body processes stress.

The tumor/slime itself has actually shrunk in the last nine weeks. That's great news! So we all wonder if this fluid is a byproduct of the tumor shrinking. This slime isn't going out without a fight. So while over the long haul good things are happening, the short term course is dark.

Rich is in a lot of pain. He's not sleeping well at all. His entire abdomen is very tender. It's a struggle to eat since so much fluid is pushing on his small bowels. This is worse than post surgery. But we just have to make it through the next week and then we'll know a lot more about the territory in his belly.

We're keeping folks in the loop as we know things through Team Stryker on Facebook. I'll blog as often as I can, but it's going to be on a delay.

We were watching John Oliver's new show on HBO last night in the hotel. He did an entire piece on the death penalty, all the while saying it was madness to discuss the validity of the death penalty on a comedy show. But he promised that if we all stuck with him, he would show us a video of tiny hamsters eating tiny burritos as a reward. So I feel like that's our week. We are spending a week wrestling with really unpleasant things and in the end, there will be some reward.