appendix book joke

Several people have asked how Rich is doing and how his trip to Nashville went this week. I wish I could tell you that we had some sort of revelation, but it was a lot of the same.

He got up at 3:30am so he could get on a flight at 5:35am to Atlanta for his plane to get replaced and arrive in Nashville late. He hustled to his appointment to find out that he’s lost 15 pounds in the last month from not eating. He talked with the nurse practitioner Holly because Dr. Bendell wasn’t in the office that day. Holly had no answers for Rich and her hypotheses were odd at best.

He delivered the Excel sheet and list of questions I had created so that Dr. Bendell could reply to me via email. He got his Benadryl. He got his immunotherapy treatment. He took an Uber back to the airport. He landed at 11:30pm. Long day.

In an attempt to make sense of the last few weeks I had created a spreadsheet of each day, Rich’s food intake, oxycodone intake, fever, hiccups, larynx spasms, bowel movements, and overall health. I then had a list of questions for Dr. Bendell that included things like

  • Why did the hospital give Rich antibiotics if his white blood cell count (WBC) wasn’t high? Were they just throwing things at him and guessing?
  • How did Rich have diarrhea after taking 12 oxycodone for two days in a row? He shouldn’t poop for a month after that.
  • If the antibiotics were pointless, what actually made him better in the hospital?
  • What do we do the next time he doesn’t eat for a week?

Dr. Bendell’s answers were brief but informative. She believes (and I concur) that Rich had another obstruction. It made his large bowels not work properly so that only liquid could get past the blockage. It also inhibited the large bowels from doing their job of removing water. She agreed that the hospital had no idea what to do with Rich so they just gave him an assload of antibiotics just in case it helped but there was no real reason for it. And even with 12 oxycodone a day, you can still have liquid bowel movements if that’s all that can get through your bowels and if they’re not working properly. He got better simply from being rehydrated and resting his bowels by not eating. And if he gets to a point he can’t eat again, we could explore TPN again or see if he recovers enough to start eating again like he has now.

The pattern, as much as there is one, is that Rich has had obstructions every 4-6 weeks. Late July, late August, and mid-October. So the plan now, as much as there is one, is to get as much weight back on Rich as possible so that the next obstruction that keeps him from eating won’t make him even skinnier or malnourished.

There is no “aha” moment that explains everything, but it does make sense. And there is no magic bullet. We just keep getting immunotherapy treatment, keep eating and drinking, and do our best. We will continue to hit obstructions along the way but we will keep finding ways around them.

Rich recap

I’m merely trying to recap the adventure of our last two weeks. Bear with me.

A few days before War of the Wings (Oct 16-18), Rich started getting fevers in the evening. This is not totally out of the ordinary in that it’s a side effect of chemotherapy, immunotherapy or any sort of stress on your body. His temp would climb to about 100 around 6pm and go back down to normal by 10pm without any meds.

Friday, we drove to War in North Carolina. He was feeling ok. He and I had a disagreement Saturday morning which led to him being a little moody. He didn’t eat breakfast or lunch. I figured he would rally eventually. He then decided to fight in the woods battle. While he fared okay out there, he curled up in a sunbeam in camp afterwards and wouldn’t move. His whole body was cramping.

He managed to make it to great court and sit in a throne for a couple of hours. I went back to camp to pack up, jump our car battery (of course), empty our hotel room, and come back to site. Court was over at 7pm and we were on the road home by 8pm. Rich slept the entire way home having eaten only an egg roll and half a protein bar. We got home at 1:30am.

Sunday he slept all day. Monday through Thursday, he slept all day. My parents came to keep everyone alive in the house as I had a business trip. His hiccups started on Tuesday. Thursday evening, he rallied enough to go to Ian’s birthday party but was exhausted. Friday he slept all day.

Saturday we had to go to Baronial Birthday so that we could step down as baron and baroness. We literally had to be on site for only two hours. I packed everything up, and got him in the car. We arrived at the site and Rich curled up in the corner. I got garb on him literally minutes before court started.

Prepping for court

We had our final court, he rallied for about an hour. We stepped down and Rich got his court baron award. I got kitty supporters which I adore. Rich went immediately back to the royal room to sleep on the floor. I packed up the car and drove him back home where he went back to bed.

Sunday our house guests went on their way and I told Ian I would take him to a movie. I was unwilling to leave Rich unattended so my mother came over to babysit. In the three hours we were gone, Rich had six bowel movements. He was worried and very dehydrated, so we headed to the hospital.

When we got to the hospital I explained we were there for dehydration and hiccups. They couldn’t help us with anything else. They asked for an overview of Rich’s issues and I tried to give the most efficient version possible. They decided to give him antibiotics for a possible abscess, though his white count was not high. It took two days to rehydrate him.

They didn’t have injectable or IV Thorazine in the hospital, so we still haven’t cured his hiccups. The Thorazine pills will slow them down and at least help him sleep, but they don’t fix it.

The pressure on his belly, makes it so his lower fistula has started increasing output. And it makes it hard to take deep breaths. And the hiccups make it hard to sleep or breath well.

We stayed in the hospital from Sunday evening until Wednesday afternoon. Just in time to pick up our sick kid from the school on the way home from the hospital. Rich is home now and eating again. But I’m staying vigilant to make sure he doesn’t get dehydrated again.

Meanwhile, Rich has started having larynx spasms. They are not life threatening but are terrifying. His epiglottis slams shut and he can’t breath or speak for about 20 seconds. We have no explanation for that other than possibly the hiccups are sparking it or the acid reflux. There is no treatment other than to hold your breath and not panic. Easier said than done.

We are due to go to Nashville next Wednesday. He’s behind on his treatment because he hasn’t been able to walk, let alone get on a plane.

So the current status is Ian’s fever is gone but he can’t go to school until Friday. Rich is sleeping and I have to harass him to drink fluids, eat, and take his meds. He still has the hiccups. I have finally succumb to a cold, so I’m taking Mucinex every four hours. I’m washing everything in the house.

I keep talking to the lovely ladies in Nashville to keep them appraised of the situation. We’re all still in one piece and alive here.

Walk before you run

On May 5, I went for a run in Georgetown. It was hot, more hilly than the flatlands of my home, and lots of concrete. My right foot had been feeling a little tweaked lately but I was just trying to stretch it. About a mile into my run something in my foot went “POP!”

It wasn’t excruciating, but I definitely didn’t want to keep running on it. I did the walk of shame back to the Metro and then my hotel room. I didn’t think much of it since I could still walk. The next day, though, I thought my foot was going to explode.

I spent about three weeks going to see my trigger release therapist. We did make progress but my foot still hurt. Finally at the end of May I agreed to see my sports doctor. Dr. Sam Wittenberg is awesome and a runner as well. He gave me a air cast boot to wear for three weeks and then said we would do physical therapy. I left a little frustrated but optimistic.

The boot on my foot came off June 18 right before we went to San Francisco. Dr. Sam said I could try running a mile three times a week and see how that felt. He said I should keep seeing my therapist Denise (who is amazing and I love her). I was chicken to do much of anything besides just walk around.

I saw Denise the day after the boot came off and was pleased that my foot was acting like a foot again. I saw her again on July 3 and decided I was feeling brave enough to try running.

I already do a run/walk method where I run for a minute and then walk for 30 or 45 seconds depending on the length of my run. But this felt like starting all over.

Two months after something in my foot went “POP!” I put back on all my running gear and walked out the door. And I didn’t die. I walked a mile, then I did two miles of running for 45 seconds and walking for 60. It was incredibly slow but after my second running segment I was grinning like a fool.

I’ve now run three times this week. Each time with a mile warm up walk. Each time with these incredibly slow intervals. And each time with a huge grin on my face. My foot is doing ok. It’s tight today but I iced it and keep doing my exercises, one of which is called “toe yoga” and feels amazing.

So blahblahblah running blahblah but the point is I spooked myself with an injury, got a little stubborn, did what the doctor and physical therapist told me, wore that damn boot religiously, learned that my foot can’t heal if I never stop moving, gained an appreciation for our modern society where the rest of the clan wouldn’t just leave me behind on a rock to die since I was too much of a burden, and am dipping my proverbial toe back into running again.

I have signed up for the Rock n Roll half marathon in Vegas this November. I have just enough time to recover my foot, train back up, and complete that race. But even if that race doesn’t happen for some reason, I’m still grinning around my neighborhood for now.

Post run joy

Measuring millimeters

I have a love-hate relationship with CT scans. One the one hand, they give us some information about the contents of Rich’s abdomen. On the other hand, they give us really sketchy information about the contents of Rich’s abdomen. At times, I feel like we are reading tea leaves and that radiologists are just modern medicine’s augurs.

Rich now gets a CT scan every 12 weeks during this portion of the trial. Previously he was getting them every six weeks. We’ve actually been getting CT scans pretty regularly for three years now, and every time they show little to nothing. The one exception was when he got an abscess and his belly swelled up overnight like he was 8 months pregnant. That was kind of a “duh” scan results, though, in that he obviously had a lot of fluid in there versus having swallowed several dozen capsules of those “magic grow” animals.

Rich got a CT scan this morning. The results are “without significant change” and “unremarkable”. He has two lesions that they measure to compare. One is on his liver and went from 63x22mm to 70x22mm. The other is just a mass on his right side that went from 112x69mm to 116x62mm.

Let’s take a minute to talk about what a millimeter is. There are 25.4 millimeters in an inch, which is about the width of your thumb (approximately). To get an idea of 7mm change in lesion size, an iPhone 6 is 6.9mm thick (without a case). If you still have an archaic iPhone 5, that model is 7.6mm. Now remember, though, we are not measuring pieces of lumber. We are measuring images of slime in a torso. What two points on the slime did the radiologist use? Was Rich lying in the same position today as he was 12 weeks ago? Did he fart during the scan? Putting a lot of weight in these numbers is just not my gig.

Each time over the last three years a doctor has told us what is in a CT scan, it’s been wrong. Not necessarily worse, just far from the whole picture. So I read each of these results with a big ol’ grain of salt.

When we have no numbers to work with per se, we have to go with other metrics. How does Rich feel? What can Rich eat? How tender/tight/hard is Rich’s belly? Even that is very subjective. Physically, Rich is doing pretty well. It’s been an emotional slog this last year, though. There is no statistic for feelings as far as I know. So we just keep on keeping on.

My optimism cannot be measured.

A goat’s bite is poison

“A goat’s bite is poison.”

My granddaddy used to say this on the farm. The last few months it’s been one goat bite after another. Nothing heinous. We’re not being mauled by bears. Just bite after bite after bite.

When Rich went for his immunotherapy treatment on May 6th, he called me and I could barely understand him. He had an allergic reaction to the treatment and it was making him convulse. He couldn’t even hold the phone. It passed in an hour and he was able to soldier his way home by midnight but it was very unpleasant. Bite.

But hey, we would just pre-treat with Bendadryl on the next visit and he should be fine. Except they did pre-treat and he still had a reaction yesterday. It wasn’t as bad, but he still spiked a fever, had the shakes pretty bad, and his heart started racing. At least he could use the phone this time. Bite.

Meanwhile, his flight was cancelled so I had to re-book him for a flight today. All he wanted to do was go home and instead he got to go to a hotel in the pouring rain. Bite.

The entire month of May, Rich has also been getting fevers every evening. Nothing extreme. 100F or less and they go away in three hours. But it’s every. Single. Night. Bite.

Rich’s shoulder is still frozen. He can touch the back of his head and reach his wallet now but he’s still a long way from swinging a sword or hockey stick. He still needs pain meds to sleep. Bite.

The pool pump died so we have a 27′ duck pond versus a pool right now. Bite.

On May 5th, during an attempted run in Georgetown I felt something go “pop!” in my right foot. After several trigger release therapy visits I’ve finally gone to the sports doctor. I have a partial tear in my plantar fascia so I have to wear a boot for three weeks and then do a month of physical therapy. Two more months before I can run again. Bite.

I came to work last Monday (the 18th) and my beta fish Bruce was in very bad shape. I spent an hour changing out the water in his tank and putting him in a fishy ICU. I almost flushed him at several points but he kept moving. I know he’s just a $10 fish, but I’ve really enjoyed his company since I got him in January and I was not looking forward to his demise. I worry about him every day. Bite.

I have paid $600 to EZPass (because it was cheaper than going to jail), $500 in car taxes, $600 in insulin pump supplies, and many other little random payments for things I don’t even remember. Between my shoulder and Rich’s foot, we’ve been paying $160 a week to the trigger release therapist. Nibble, nibble, bite.

Ian has been regularly sent to the office at pre-school for “not listening.” Some of it is legitimate obnoxious five-year-old behavior and some of it is just normal kid stuff. But I’m really tired of these super serious conversations with the principal about how he will perform next year in kindergarten if he’s climbing up the slide instead of sliding down it. Really. Don’t. Care.


I emailed Daddy to get confirmation on Granddaddy’s saying. I surmised the phrase was because the goat was relentless. I kept thinking of the analogy that a goat has been chomping away at us for a very long time.

But he wrote back and said he called it “persistence.” That gave me pause. All day I had been thinking of all these little injustices as the goat’s bite. Really, the goat is continually chomping away at little things to feed himself and survive. 

I got Rich first class tickets for his trip home today. Bite. 

Rich’s shoulder is healed enough that he can fight spear. That means he can fight at Pennsic. Bite. 

I found a replacement pool pump for $150 and it arrives Saturday. Bite. 

The boot is warm but it actually makes my foot feel better. And I still have plenty of time to train for my half marathon in November. Bite. 

Ever since that first day, Bruce the fish has been rallying and continues to swim around his little tank. Bite. 

We paid off the minivan this month and I’ve found several big ticket items to sell. Bite. 

Ian finished his last day at preschool on a high note and was hilarious and clever at the dentist this afternoon, including helping them take my x-rays. Bite. 

If we could find a goat to bite through belly slime, we’d be set. But we’ll just keep nibbling away at things with persistence.