This is your turn

Rich has good days and bad days. Everyone does. Sometimes, though, it’s not so simple to figure out how he’s doing overall. Monday night after dinner Rich’s stomach started cramping and bothering him. He went to work on Tuesday, but by 5pm he was in rough shape. I drove him to pick up Ian and then home where he skipped dinner, spending the evening on the couch.

By this morning, he was feeling better. He ate breakfast and that went well. We decided to try a late lunch at Panera. When we walked out to the car, I asked him if he wanted to drive and he said it didn’t matter.

He then proceeded to question every turn I took, including which parking space I picked. It’s not that I’m a bad driver. It’s just that Rich is a horrible passenger. It’s part of why he hates flying is they won’t let him drive. When we left Panera, I drove again and the first thing he said was, “Why are you going this way?” Dude. It’s a parking lot. There’s only but so many ways to exit.

This summer we went through months where I could barely get Rich to leave the house, let alone drive. He was not up to driving or even having an opinion about the drive. He would just lean the seat back and stare wistfully out the window, resigned to his destination and the route there.

It’s so nice to know he’s feeling well enough to question my driving, I’m not even mad.

Freedom!

You know when you put a costume or a leash on a cat? How it just gets real low?

That was Rich wearing an ostomy bag. He would wear it, but he would not be happy about it and it was the human equivalent of putting little mittens on his paws. He moved slower and much more grumpily.

On December 30th, we took off his ostomy bag and left it off. And with it we also removed a significant dark cloud that had been hanging over him. He's had a lightness in his step that I have long missed.

We also have discontinued his TPN. I conferred with the surgeon and he said as long as Rich is eating at least 75% of his caloric intake, we could skip the intravenous nutrition. Considering he's had the same meals I have since New Year's Eve, we're doing great. If anybody needs to fertilize their roses, I've got 30 liters of TPN which is basically prescription Miracle Gro.

His lower wound is still open and oozing a bit, so we continue to bandage that and his fistula opening for the dime-sized speck he produces daily. We've come a long way, baby.

Sunday was hard for us both after hearing of Stuart Scott's passing. Scott had the same cancer Rich does, was diagnosed in 2007 at age 42 just like Rich and after many surgeries and drugs died at age 49.

His ESPYS speech from last July made me cry. He was a great sportscaster, a clever guy and a devoted father.

But Scott didn't have the Chancellor of Optimism. He didn't have the angels in Nashville with their fashion sense and cutting edge tech. And he didn't have Team Stryker.

I'm happy for Rich and our family. We've had a hell of a year, but things are looking up. We're in good hands at Sarah Cannon. Flights are only $250 each now. Rich was saying he's looking forward to eating airport food that he's not been able to have in a long time (just let that statement sink in). Our little home is lovely and stable right now.

Booyah.

Back on the ice

A few months ago, we started Ian with skating lessons at the local ice rink. He did really well and had no fear. He is able to get on and off the ice safely, skate forward with relative success and is studying the nuances of skating backwards (something I myself have yet to master). He’s also learned how to safely fall and get back up again, two things he gets plenty of practice with each week. After he finished two sets of the skating lessons, we switched him over to hockey lessons. It’s a bit more involved than the skating lessons in that he has to dress out. Dressing a five-year-old in full hockey gear is not simple or speedy. Those practices are on Saturday and they’re something I’ve let Rich take the lead on. It’s hard for me as a mom to dress Ian in the locker rooms if there are other shy boys in there and Ian is not able to dress himself fully yet. And it’s just better for Ian to do this with his dad.

Today, however, was a special treat. It was “stick and shoot” this afternoon from 5:15-6:45pm, which is basically just open hockey practice for anyone who shows up. Rich and Ian both suited up and went out on the ice today. Ian was stoked and Rich was pretty pleased too.

They skated around a bit, practicing shots on the goal and puck movement. After a while all the skaters lined up to take turns shooting at the one goalie who had suited up. Rich had already decided to not bring his goalie gear today because he wanted to play with Ian, not field a million break aways from excited kids. When it was Ian’s turn to shoot the puck, everything went quiet. He meticulously pushed the puck down the ice, one little shuffle at a time. After a million minutes, he got within 10 feet of the goal and shot the puck. It went straight at the (adult) goalie, who easily stopped it. All the other players, adults and kids alike, tapped their sticks on the ice for Ian to congratulate him on his shot. It was really sweet.

I like hockey but I’m not fanatical about it. I know the rules, I recognize the equipment, I can skate well enough to be a decent forward (my backwards skating sucks way too hard to ever play D). But it’s not a passion of mine.

Watching Rich and Ian on the ice today, though, was pretty awesome. It was one step closer to Rich putting on pads in a game. One step closer to him putting on armor again. One step closer to normalcy.

Rich has had absolutely zero output since Christmas Day, even while increasing his eating. He’s eaten adventurous things like a Wendy’s cheeseburger and a few bites of turkey chili. He had a waffle yesterday with peanut butter on it, just like he would have done any other Sunday last year. He’s eaten unmentionable amounts of Trader Joe’s dark chocolate with almonds in it. He’s had a slice of homemade pizza (we haven’t braved greasy restaurant pizza yet). Tonight after hockey, we all went to sushi where Rich had a regular meal’s worth of food. It did make him so full I had to drive home, but his ostomy pouch remained bone dry.

It has been exactly six months since the fistula first appeared, gushing 3.5 liters of fluid a day. We are so close to the end of that epic chapter. Tuesday, Rich flies to Nashville and back for blood work (thanks for the ticket Curt!). If he continues to keep his output at zero even at 30,000 feet, I am calling his fistula healed. Either way, we’re having Mexican this week.

It has been such a slog for so long, it was extremely satisfying to watch both of my boys on skates. It warmed my heart even in that freezing rink.