No growth, no fluid

Rich is going to Tennessee every three weeks. Every other visit (so every six weeks) he gets a CT scan to assess how the medication is working. It's a horribly inexact measure of progress. The visits are brief (he can fly in and out the same day) and the staff are always pleasant. But the news is not very earth shattering. We don't expect to show up to a CT scan and find that all of his slime has shrunk away. So we bide our time with statements like "no growth, no fluid". That statement can be taken both ways.

Sure the slime isn't growing that we can tell. But it took years to notice it in the first place, so even if it were growing, I'm not sure we could tell. I'm not sure that the CT scan from January when he was not taking medication looks much different than his latest one after three months of medication. So it's a bit like taking a pill to keep tigers away. No tiger attacks yet. YAY!

Rich has very few side effects from our anti-tiger/slime medication. He is more prone to heartburn, though that could be stress related. Tomato products exacerbate that but he is unwilling to give up Mexican food or meatball subs so he just takes a dosage of Zantac that made the pharmacist ask, "Are you sure this is right?" His upper belly (right below his rib cage where the slime buildup is thickest) feels tight at times, but with his barrel chest and clothes, the world would never know. He's wearing all the same size clothes. He's playing all the same sports. He killed 21 people in one battle at Pennsic. So it would seem other than the time and expense of jaunts to Tennessee, life is relatively normal.

And yet, it's not. Rich is more irritable than normal. He's worried. He's unsure of his own body and what it's doing.

We all thought that CT scans were supposed to be virtual photographs of one's insides and yet it's more like the Rorscharch test of medical diagnosis. (Funny side note of a joke by Bob Newhart that ordering those cards must be awful. "Do you have any more of the three guys playing pool?" "No, but we've got three naked ladies fishing in a boat.") The CT scans we took in 2007 told us nothing because it was too soon to notice anything. The CT scans from October pre-surgery seemed like a textbook case of green slime to be extracted. After that "hunh" moment on the operating table, we're all a bit more dubious of what those scans actually tell us.

And unfortunately, right now, those scans and how Rich feels are our only markers for improvements. And Rich feels ... worried.

All this sounds depressing, but there are bright spots. Rich says that he felt great at Pennsic. His joints were fine, his stomach felt fine (I took note of the distinct lack of Mexican food on our medieval vacation), his back felt fine despite sleeping on an air mattress in a field. Have I mentioned he killed 21 people in one battle? So possibly a lot of this is stress related where having a vacation and being physically active keeps his mind off of things.

But we are back in the thick of things here in the modern world and that takes its toll on Rich (and anyone else in his immediate vicinity). He has another check up next week where they will just draw blood and dole out more pills, but I'm going with him on his trip in September for the CT scan. From 5am until 8pm we can pretend we're on vacation and have a delightful lunch somewhere. It's not quite Pennsic, but perhaps it will brighten his mood.

Whole Wheat Pancakes

I used the recipe from SkinnyTaste.com for Whole Wheat Pancakes {new and improved} but I wanted to make some notes for myself. Whole Wheat Pancakes {New and Improved} Servings: 7 • Size: 2 pancakes • Old Points: 3 pts • Points+: 4 pts Calories: 172 • Fat: 2 g • Carbs: 31.5 g • Fiber: 5 g • Protein: 9 g • Sugar: 2.5 g Sodium: 561 g

Ingredients: 2 cups whole wheat flour (I use white whole wheat) 4 1/2 tsp baking powder 1/2 tsp salt 2 tsp cinnamon 2 tsp sugar 2 large eggs 2 cups + 2 tbsp fat free milk (I used 2% because that's what we had) 2 tsp vanilla (my printout was blurry so I only put in 1 tsp) cooking spray

Directions:

Mix all dry ingredients in a bowl. Add wet ingredients to the mixing bowl and mix well with a spoon until there are no more dry spots; don't over-mix. Heat a large skillet on medium heat. Lightly spray oil to coat and pour 1/4 cup of pancake batter. When the pancake starts to bubble, you may add your fruit if you wish. When the bubbles settle and the edges begin to set, flip the pancakes. Repeat with the remainder of the batter.

Makes 14 pancakes.

I was able to get 15 pancakes but the last one was pretty skimpy. Our griddle is not working at the moment so I just used a non-stick pan on 4-5 heat on our electric stove. I had two with blueberries in them and am very full without feeling sick. Next time, I think I'll half the recipe so we don't have so many leftovers.

I'm pleased that my two pancakes with a smidge of syrup were under 200 calories and about 35g of carbs (the syrup and the fiber canceled each other out). And I used up the last of the Amish blueberries from Pennsic's Penn Mart.

Good and bad

Rich has a saying that there are very few Hitlers in the world. Most people are just trying to do the best they can with what they know. I posted a picture to Facebook this evening of a woman and her year old daughter. The girl was covered in ketchup and the mother had several regrettable tattoos, most noticeably a Tinkerbell on her shoulder blade that looked like I could have drawn it (and I'm not known for my artistic talents). She had been teasing her little girl that she couldn't go in the play area because she was being "bad" for making such a mess with her ketchup. Even though she said things like, "people will think your mommy and daddy don't feed you" which led me to believe she was talking for her own benefit and not for conversation with the non-verbal little girl, it still bothered me. Somewhere someone taught this woman that it was okay to tell someone else they were being bad.

The picture led to a lively discussion on things that parents say to their kids that are so painful to hear. Another mother this evening told her three and four-year-old daughters not to scream in the play area. She didn't follow up on that correction, which is just as well because my son was squealing down the slide like Tarzan of the jungle, delighted that there were finally other kids to play with and not just Mommy in there.

I felt pretty solid about my kid. He was a little grumpy on the way to dinner but he inhaled all his food, so I chalked it up to hunger. But then it was time to go. We had spent over an hour in the play area, and I was freezing in the over zealous air conditioning. The dogs needed to go out and I wanted to eat my dinner at home.

We went around in circles about shoes and ice cream and leaving versus staying and eventually I just picked him up and carried him out. He was making a game of trying to get away from me and his shoes and I was just done. So my joyful little Tarzan of the play area then looked like this.

I was super irritated but he was obviously in distress. So I climbed in the back seat with him to wait out the storm of emotions in the car while the downpour raged outside the car. We assessed that he wasn't mad, but sad. He wanted to stay in the play area because he was having a great time with all the other kids. He also wanted some sort of dessert item but nothing sounded appealing. We finally decided the mini ice cream sandwiches at home would fit the bill. He wanted his socks and shoes back on, though at several points during that process he protested, unsure if he really did want them on.

I just kept wiping his tears and saying, "I know." He got his blankie and I recited our love ritual.

I love you when you're happy. I love you when you're sad. I love you when you're worried. I love you when you're mad. Sleepy, cranky, silly, or all of the above. It doesn't matter what you do, you'll always have my love.

I'm pleased that all I have to do is start the first line and he'll start settling.

I crawled to the front seat and we headed home. Again, I was feeling pretty good about our problem-solving skills. It's reasonable to be super sad about leaving the best play area ever. One of the other little girls had told her mom it was the most fun she had ever had. Ian was quietly whimpering to himself as I drove through the rain, but he was resolved to go home and get his ice cream sandwich.

The rain came down in sheets and buckets and 50 gallon drums. I wanted to listen to some soothing music to feel better, but as I started the iPod, Ian flipped out. "NO! I don't want music!" I changed the fade to only my speakers and I even turned it down but as long as he could see letters scrolling across the dashboard he would not rest. FINE. I'll turn off the damn radio because I can't even have Rainbow Connection to enjoy as I drive you home. We'll just listen to your lamentations over leaving the glass room that stinks like feet. Even when I turned it off, he continued to cry. He was just pissed that I had even dared to turn on the radio in the first place. Seriously?

We continued our epic journey home. Since we're right at sea level, Shore Drive floods very easily in heavy rains. It was a slog to navigate the rivers in the road. We were on a long stretch of nothing and I noticed a guy walking. Black guy, mid-20s, backpack, woefully inadequate umbrella, polo shirt and slacks. Just trudging along. Where the hell is he going? Where did he come from? I slowed down to avoid covering him in water, but wasn't sure what else to do. It was a horrible place to stop. I kept going but at the next intersection I made a U turn.

"Why are we turning around? Why are we going this way?" Ian asked.

I still wasn't 100% sure I would stop for the dude. That section of road was a river and it's 45mph and pouring cats, dogs, and elephants. I could also hear voices saying that a woman and her three-year-old have no business picking up random men off the street. But if this was his scheme to lure in victims, he was really bad at it.

I managed to find a pull over in the road right where he was walking and honked my horn several times. It's hard to honk insistently yet friendlily. I rolled down the window and asked if he needed and ride and he said, "YES! To Gate One?" The amphibious base entrance was about two miles down the road. "Get in!"

Ian did more talking than anyone during those two miles. "Why is he soaked? How did he get soaked? Where is Gate One? How could he swim on the street? I swam at the hotel! One side I could stand up but the other side was too deep."

The poor kid just sat there as quietly and politely as possible, as if breathing too much might be considered rude and ungrateful to my gesture. We rounded a corner that is notorious for flooding and I couldn't imagine him trying to walk through there. I pulled into the amphib base just as a city bus was pulling in. He said, "This is perfect. I'm going to run to catch that bus. I should make it. Thanks!"

And then Ian was full of questions again. "Why was he walking? Where's his car? Does he have a car? Are cars expensive?"

We made it home and I talked to Ian a bit more about how listening to the radio makes me feel better. He returned to his stance of hating the radio, but when I sighed and unbuckled his car seat so I could get out he blurted out, "Mommy! I want you to feel better!"

Sometimes I wonder if I'm doing the right things for my kid. But I think he's going to be okay.