An Inconvenient Tumor

Bryan and I have had a quiet weekend at home, giving him time to rest after Friday's Avastin infusion. While the Avastin has played a tremendous role in helping him improve, having Benadryl and high dosages of steroids directly infused prior to the Avastin leave the poor guy tired. Really tired.

Bryan's old roommate had a birthday at the Mondrian in Hollywood on Friday night, to which we had planned for weeks to go. When Friday came and Bryan found himself sleeping off the effects of the Avastin on the couch all afternoon, he decided maybe a "Hollywood" night out wasn't the best idea. So we settled for a quiet night of "in n' out"; and I don't mean the hamburger. I mean Bryan drifting "in n' out" of sleep on the couch while I caught up on TiVo. It was a quiet calm night, just what he needed.

Saturday brought USC's first home football game in several weeks, followed by a friend's birthday party at a local martini bar. So far this year we've made a smart call to watch the USC games either at my parents' house or at our apartment, where Bryan doesn't have to walk crazy amounts and deal with swarming, drunk football fans (despite the fact that on any other year, we're part of that swarming, drunk crowd!). It's just too much. Much less going to a martini bar after the game; there was no way we would've made it especially with various steps, a crowded bar and minimal seating opportunities.

This isn't to say Bryan isn't getting better, because he's getting stronger and better every day. But the fact is we have to be really realistic in picking and choosing our "outings," especially after Bryan goes through chemo week or his Avastin infusion Fridays. A crowded Hollywood hot-spot with no handicapped parking and packed full of hipsters precariously teetering near the Skybar pool? Not gonna work. A dimly-lit martini bar with valet parking (a big plus) but steps and a start time of 9pm+? Again, not a realistic scenario for him right now, even with me serving as an extra steady hand.

Our biggest goal right now – so we can get back to these activities and many, many more – is therapy. LOTS and lots of therapy. We're moving past just coordination issues and working to increase Bryan's strength. Every activity in our daily lives is an opportunity for therapy. Since Bryan has been chilling out (aka watching football) most of the weekend, this morning we decided to talk a walk. Now, for most people taking a walk means walking to a destination, e.g. a bagel shop, Jamba Juice, 7-11. Or even just walking a few miles and then coming home.

For Bryan and I, taking a walk gives us a chance to have him practice his "community" skills. In the medical field, there are "at home" skills (self-explanatory) and "community" skills, essentially meaning anything outside the walls of your home and driveway. It could be going to the grocery store, walking to the mailbox, or even something as simple as taking a walk around the block. Which is exactly what we set out to do. When we take walks, however, we start with a goal of simply getting to the end of the block and then making the decision to continue or to turn around. Whereas you and I may be able to just walk at a normal pace without incident, Bryan needs to think about the physical logistics of every step he takes.

"I don't want to reinforce or start bad habits," he says. So instead he's a bit of perfectionist.

During these walks it's important for Bryan to walk by himself (with me following a foot or two behind, of course), so he can get used to areas outside our apartment. Even a crack in the sidewalk can trip him up, physically and psychologically. He can see a tiny bump in the sidewalk and freeze up. The difference between now and a few months ago is that Bryan wouldn't have been able to get over the psychological hurdle of seeing a bump/crack in the sidewalk. Today, however, he tenses up a bit, lifts his left leg a little higher and walks past it, no harm, no foul.

We got to the end of the first block and only needed to stop two or three times to let Bryan's left toes uncurl. Too much walking with his left leg makes his toes curl under, which is painful and hampers movement. Usually the remedy is to just stop a few minutes and let his toes and foot relax. The other "walking" roadblock is when the muscles in his left leg start to shake uncontrollably because they're weak from under-use. The great news about this is that he's using them again and getting them stronger, slowly but surely.

So a few toes curls and leg shakes later, we got to the end of the first block. Bryan has walked all by himself, and only turned to me for support once or twice. He decided to go to the end of the next block "alone," after which we would turn around and walk back hand in hand. He did great getting to the end of the block but the way back presented some challenges; he was tired, his leg was tired and his toes weren't cooperating. When his leg gets very tired, certain overused muscles take over and try and force his left foot to turn under, essentially the way someone might sprain their ankle. He's got a preventative air cast on his left ankle for that exact purpose, but towards the end of the walk his foot was REALLY wanting to turn under.

Bryan walked the width of two blocks – focusing on the quality of every single step – and it took thirty minutes. This might seem like forever, but you have to understand that for us it was an achievement. Two months ago he couldn't walk the ten feet alone to our bathroom, much less out and about in our neighborhood. So it was a slow walk, but it was a sweet walk nonetheless.

We got home, took off his ankle brace and let his leg rest. I went to get our laundry out of the dryer and realized that folding laundry could potentially be another therapy exercise. So while watching football, I handed Bryan five pairs of his underwear to fold. He looked at me in surprise and shockingly, was happy to fold them. It was great for the fine motor skills in his left hand and the extension movements in his left arm. He got through all five pairs in the time it took me to fold our entire basket, but there we were, participating in a pseudo version of what we used to do before all this brain tumor stuff came about. Bryan used to help me by taking out the trash, helping fold laundry (he's very particular, you see!), cooking dinner, etc. He's the perfect partner, in so many senses of the word. However, we haven't been able to do any of those activities together in almost a year, if you think about it.

Today, just the simple act of folding laundry next to each other on the couch was a big step forward. It's not perfect, but it's progress. So on this Sunday, while we watch the Cowboys try to beat the living crap out of the Falcons (helmet to helmet contact, anyone??), we're reminded to appreciate the tiniest of simple acts. Today, that simple act was folding laundry. But that load of laundry was full of love.

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