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.

Two meatballs

We were doing so well with Rich's output. His daily numbers were hovering around 200mL. I sent an email to Dr. Shen who did the surgery back in June with photos of Rich's incision/stoma and the giant Excel file of doom with his fistula output numbers. Dr. Shen agreed that we could experiment with some low residue food. If that increased Rich's output we could back off, but it was worth a try. On Thursday at lunch, Rich ate a Vietnamese spring roll. It's basically rice noodles in rice paper with one piece of lettuce and one strip of pork. That went down just fine.

The next day we went for dinner while running errands. Ian wanted pizza so we stopped at Fazoli's. Rich got a meatball sub with the idea of only eating one or two of the meatballs and giving away the rest. He ate two golfball-sized meatballs and according to him they were delicious. But while sitting at dinner, his output went up by 200mL alone. The next day his output was 1350mL. Needless to say Rich was discouraged.

On Sunday we had to get on a plane and that has been increasing his output as well. We ended that day with 1500mL and a very sad mood. But Monday was better and he only output 500mL all day. Today has been equally mellow, despite getting on a plane again. So I'm hoping we are working out way through that experiment.

This has all been a lesson in patience. After Rich ate the meatballs and told friends that it increased his output, several folks said, "oh, well beef is very hard to digest." To which he said, "Why didn't anyone say that before I ate them?!" And really beef and steak are what he's craving. He's not craving potatoes or apple sauce or rotisserie chicken.

But we will obviously have to take this very very very slowly. One bite at a time.