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.

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No bad news is still good news

Since Monday the 12th, Rich has been having bad cramps off and on. They feel a bit like binding gas but will eventually “pop” and give him relief. It’s been cyclical where he feels best in the morning and then worse over the course of the day until he needs prescription pain meds to sleep. Needless to say, this has worried him which has then worried me.

This week, he flew to Nashville for his CT scan, blood work, check up with Dr. Bendell, and drug infusion. He arrived for his CT scan yesterday morning and a large amount of the contrast he drank came out of his fistula. The fistula that has been closed since Christmas. So that was alarming.

They had someone look at his CT scan at the imaging unit to make sure he wasn’t leaking all over and needed to go to the hospital. They said he was “fine” and sent him to see Dr. Bendell. He called me and was very disappointed at the output, but I convinced him to get a smoothie all the same so he stayed hydrated and had some nutrition.

Dr. Bendell broke it down like this: His bowels are irritated, most likely from the reintroduction of food after seven months. This causes them to swell and kink, leading to cramps, binding gas, and general discomfort. He’s still processing food fine, though, so no need to revert to TPN. He should just be aware of what he eats. The tumors have not grown noticeably, so they are not what’s causing his stomach cramping. He doesn’t have a blockage other than the swollen bowels causing some restrictions. He has some lesions on his liver that have grown a bit but that’s normal with the immunotherapy he’s getting.

Dr. Bendell is not worried about anything she saw.

Rich feels like this is a regression, mostly because the fistula is leaking. But it’s not leaking very much so he just needs a piece of gauze versus an ostomy bag. And he’s still allowed to eat. He just wanted to hear that the tumor has gotten smaller. He wanted some good news, not just a lack of horrible news.

Yesterday was a roller coaster of emotions for him as well as tiring travel. He’s taking it easy today, but we will rally from there.

The many faces of Rich


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?

cat on leash

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.

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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.

Stuart Scott

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.

Rich and Ian on the ice