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.

Bite.

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. 

99 Problems

It’s been a long time since I’ve updated everyone on the status of Rich. In some ways that’s been because there hasn’t been a lot to report, and in some ways it’s because the things to report were not solely mine to tell. Since January, Rich’s fistula has been behaving. It’s healed over on the outside with only a tiny dot of a scab. Not even a bandaid is necessary.

The section of his incision that I call the “lower wound” is still hanging out. The very bottom of his incision is still open. It’s about the size of a quarter and very deep, but hopefully will close. We just keep putting gauze on it twice a day to keep it clean. But no pool parties for Rich until at least July probably.

The horrible stomach cramps from reintroducing food have abated and most things are safe for Rich to eat. From a belly standpoint, he only has sporadic discomfort in the evenings. That part is pretty manageable.

But holy shit his shoulder. While in the army, Rich broke his right shoulder in several places and severely dislocated it. Hooray mandatory fun days of playing soccer with the Germans. It’s never been right since then and will regularly pop out of socket. That’s been the status quo for decades.

After lying in bed for six months, though, his shoulder got very angry. Also, he’s had to lie on his right side (with the bad shoulder) in order to get TPN at night. Very angry shoulder.

That has given him the range of motion of John McCain, which is to say almost none. In March, he started seeing my trigger release therapist Denise. She has done amazing things for him but it takes a lot of time for him to recover. He can only see her every 7-10 days to give his body time to heal. We were elated that after his first visit he could pat the top of his own head. But trying to swing a sword or hold a hockey stick is still excruciating.

As a man who identifies with his physical abilities, it’s hard when those are not possible. Rich has been depressed. He feels broken. It’s very frustrating. The stress he feels has been hard on everyone in the family.

Add to all this, for the last 10 days or so, Rich has had a low fever off and on. He had a Man Cold on Friday the 10th that seemed to get better over the weekend. But the fevers and the fatigue wear on him. He wants to do things in the evenings, but he feels run down so all he can manage is to lie on the couch with me. We watch a lot of movies.

I still say things are looking up, though. Rich went to Nashville today for a CT scan, blood work, consult, and infusion. His CT scan came back normal, with no signs of tumor growth or abscess. His blood work is within normal levels, even with his white blood cell count going up a smidge (7.0 to 9.2). He got a script for antibiotics to hopefully address his possible sinus infection. They’ve escalated his immunotherapy dosage again this week.

He goes back to the trigger release goddess Denise on Friday. He’s seeing the sports medicine folks on Monday afternoon for x-rays on his shoulder. We have a new prescription for Wellbutrin to see if that helps with Rich’s anxiety. That should give him the tools he needs to be himself again.

We’re still keeping busy. We have an SCA event, race/marathon, or party scheduled nearly every weekend in April and May. We’re going to San Francisco for a conference in June. We're making plans for Pennsic in August. I'm running a half marathon in Vegas in November.

Life goes on. And we're grateful that it does.