Big bellies and tiny hamsters: adventures in rare cancer treatment

I'm not even sure where to start.

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.

I ran four miles

Technically today I ran the most mileage I have ever run in one workout. But it was full of complications. I could not easily do my run until Rich got home from his brocation at Blackstone Raids. But he got home around 5pm and no one had eaten recently so we decided to get dinner first.

For some reason, my blood sugar was high before dinner (I think I did bad math at my last snack) so I had to correct for that and bolus for my thin crust pizza. I wasn't too worried about it being high because I was about to come home and run so it would all be fixed.

I tore the house apart looking for my iPhone holder, peed twice before leaving and set off with the dogs for the first mile. The plan was to loop back to drop them off and keep going. But after only half a block, it was evident my drop off was going to be more lengthy. My long sleeve shirt was too warm but more importantly, I had to change my pants. No amount of kegels in the world was stopping me.

I stomped into the house, went upstairs to find new undies, a new shirt, and new running pants. Oh and a panty liner to finish my damn run. I decided to check my blood before heading back out and it had plummeted from 255 down to 172 and my sensor had two down arrows meaning it was dropping fast still. I turned off the pump and drank a juice box (22g of carbs), figuring that should hold me.

I set back out and ran for all three remaining miles straight. That means that I ran for four miles today with no walking breaks. I have never done that before in my life. I also improved my pace a bit so that I ran an 11.18 mile (so running at 5.37 mph). But I also soaked through that panty liner.

I finished the last mile directly in front of my house but wanted to cool down a bit so decided to walk around the block. About halfway around, though, I regretted it. I looked at my pump and it said 88 with two down arrows. Whoops. And I was getting cold, which is another sure sign I was going low.

I got home and checked my blood to find it was 55. I stared blankly into the fridge. Nothing looked good. I decided on a Fage Greek yogurt because they are the best Greek yogurts ever made on the planet. I inhaled it in record time (can you PR in yogurt eating?) and then did my best yoga corpse pose under a blanket in the living room floor, waiting for the chills to stop.

The good news is my knees don't hurt and I didn't get a stitch in my side. I just went through two shirts, two pairs of undies, two pants, a juice box and a yogurt to manage four miles. If this persists to 13 miles, I will need to drag a rolling suitcase behind me.

This is why I gave myself plenty of time to train for October. I sense more math is coming.

The first step

On April 16, 2013, I weighed 198 pounds at my endocrinologist appointment. I don't remember necessarily crying about it, but I do remember being pretty depressed the rest of the day. It had been five months since Rich's surgery and while he was trying to put back on weight, I apparently was playing along for moral support. I was the heaviest I had been in my adult life and I decided to do something about it. I started using MyFitnessPal on my phone to track food. I used a BodyMedia armband to track all my exercise. It was incredibly slow going. Today I weigh approximately 176 pounds. Given the adjustment for clothing, I have lost exactly 20 pounds in one year. Fascinatingly, I am still basically in the same clothes but they fit differently (not necessarily better). I've gone down one jeans size, depending on the brand, and one cup size. Apparently boobs are heavy.

Over the last few months I've stopped tracking food. I've been coasting for a bit (thank you, F U February) and relaxing. I don't weigh myself that often and I don't put a ton of value in the number I read.

My goals have shifted. I have been going to the gym and lifting weights. Who would have thought that counting to 10, resting 30 seconds and then counting to 10 again could be so fun? I'm learning the difference in an incline press (which is my nemesis) and a reverse fly (which should be called the "how to hold a rapier for 15 minutes straight machine"). I'm having fun. But it hasn't been quite the challenge I wanted.

We walked 8K in March and I was pleased that it didn't wear me out at all. I can barely run a 5K, but I am miserably slow. Running is harder for me because of the cardio. I get scared that I'm going to go low. All the symptoms for low blood sugar are too similar to the same symptoms of just exercising in general (shortness of breath, sweating, rapid heart rate, feeling woozy). I tried running at the gym a few weeks ago but I had to stop because my blood sugar was 40. It's frustrating on so many levels because my muscles could have kept going and my heart could have kept going but my everything else was falling apart.

I want to figure out how to run. I understand the mechanics. I have a training schedule. More specifically, I want to figure out how to run with diabetes, and that is a bit more complicated. Peer pressure and whimsy made me sign up for the Crawlin' Crab 5K in October. Several of my friends are running in it and I can easily cover that much ground.

But today I signed up for the Crawlin' Crab Half Marathon. I'm actually signed up for both, so technically I'm taking the "Shell Yeah Challenge" over two days. As I told my parents the other night, I signed up for a three hour math problem. The running is not concerning me nearly as much as the blood sugar management. Even the training part is intimidating.

I'd rather not run on the treadmill because wow boring. But there's something to be said for being 20 feet from a fridge full of juice if I go low versus miles from home. I think my plan is to map out my run, let Rich track me via Find My Friends (AKA stalk my spouse), and be able to call home if I get stuck. I wish I could just throw on shoes and a high impact sports bra and hit the road, but my life takes a bit more preparation.

For those curious or interested in following along, I'm using the Hal Higdon Novice 1 Training Program. Since I have 25 weeks until the race, I'm doubling up each week to give me time to adjust and not freak out. I'm using MapMyRun on my phone to pick out routes and track my progress.

Yesterday was my first day and I worked on stretching. I chose the Injury Prevention session on DoYogaWithMe.com and it was perfect. Today is my first three mile run and I am a little nervous. I am even more nervous about my four mile run on Sunday, as that will be the furthest I have ever run in my life. I also will be doing it in Richmond for Easter which is not nearly as flat as Ocean View.

I'm worried that I will suck at this. I'm worried that it will be too hard. Not the running, mind you. The math. How many raisins do I need to eat and how often on each run to keep my blood sugar stable? What should my sugar be when I start and when I stop?

This may be the only thing in my life so far that I've felt like diabetes made harder. Pregnancy was annoying but not that bad. Traveling, working, and every day issues don't bother me. But this is the first time I've paused before trying something. Which is why I'm writing today. If I write it down it has to happen. I am equal parts nervous and excited. Wish me luck!