Life in the passenger seat

The first day I brought the Jeep home, I asked Ian if he wanted to go for a ride with the doors off. He immediately burst into tears and ran to the safety of his room. As far as he was concerned, that monster was a 4″ lifted carriage of Satan.

My kid is a sensitive soul, much like his mother. There are a lot of things that make him nervous and upset these days. I get that. There’s a lot of stuff out of his control. It’s hard being six.

A few days later we were going to get dinner. I asked if he wanted to take the Element or the Jeep. He adamantly requested the Element. Fair enough.

Last night, I asked Ian if he wanted to get a milkshake from Sonic after dinner. He wanted the shake but didn’t want to leave the house. I reminded him that I’m not a dessert delivery service, so if he wanted a milkshake, he was gonna have to come with me. That led to some consternation and a bit of a delicious stand off. Whatever, dude.

Around 8:30pm, I told Ian he needed to take a shower. I honestly can’t remember the last time he had gotten clean by anything other than the backyard hose, so it was getting bad. He agreed but then said he had decided he would like to get a milkshake.

“It’s probably too late now, though.”
“If you shower and manage to keep the milkshake out of your hair, I’m agreeable to that.”
“YAY!”

Fastest. Shower. Ever.

As we walked out into the muggy night air, I asked again casually, “Do you want to take the Jeep?”

“But … I’ll have to ride in the front!”
“Yeah …”
“But! I’ve never ridden in the front before!”
(internally debates risk of airbag on 82lb kid) “You’ll be fine.”

And with that he was sprinting towards the Jeep.

I had put the doors on for the 20 minutes of storms we had earlier that day. As I opened the driver door and took the top half of the door off, Ian blurted out, “Mommy! What are you doing?!”

“I’m taking the door tops off.”
“I’m already in the front and now you’re gonna have me fall out?!”
“Jesus, dude. You have a seatbelt.”

He opened his door and climbed up in. I took the door tops off and set them in the driveway. Ian reminded me to not run over them as part of his safety protocols.

I put the Jeep in reverse to back out of the driveway and he started squealing with delight! I drove really slowly in front of the neighbors’ houses just in case the kids were up and happened to look out the window to see Ian RIDING IN THE FRONT SEAT!

Most of the way to Sonic, Ian was content to hold his blankie (corner firmly pinched between thumb and index finger), rest his right arm on the door, suck his thumb, and stare out the window. His freshly washed hair tussled in the warm breeze and he looked content. I tried to take his picture because it made me so happy but it was too dark.

We took the back road so there were lots of stop signs. This was Ian’s first experience with a stick shift as well, so there were lots of questions about clutches and gears and if my hand had to stay on the stick for it to run or if it was just a place to put it.

We parked at Sonic and Ian posed for a picture. It only marginally describes his level of stoked about sitting in the front seat.

Stoked about riding in the front seat

As we drove home, he alternated between sipping his milkshake and hanging his head out the door like a labrador (because really there is no window but more a missing section of door). He said it was the best thing ever.

“Mommy, it feels like we’re going so fast!”
“Dude, we’re going 35. But open air is like that.”
“Can you see the moon? It’s so bright!”
“I can’t see it from my seat.”
“It’s right here!” (points to a spot in the roof)
“You know, we can take the top off of this too. So you could see the stars and everything.”

If you were listening very closely at 9:10pm last night in our little corner of Ocean View, you would have heard Ian’s mind explode.

Two weeks ago he was terrified of a car. As of last night, he’s hooked on the front seat, topless life. Kids are like that. He may not get to drive for many aspects of his life. But that doesn’t stop him from living in the moment, hanging his head out with the wind on his tongue.

Hanging his head out the window like a labrador


Obstructions

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.