Keeping Up Appearances…

Happy Birthday, Stronger Than I Look! You’re a year old now. You’ve reached all those milestones of rolling over, sitting up, eating cereal, sleeping through the night, crawling, and now you’re even walking. You’ve come so far but there’s still a long journey ahead of you. A whole life to be lived. Keep growing, little baby. You can do it.

I realize that I’ve posted just 1/3 of the last 12 months and missed many National Holidays along the way. I’ve decided that my blog will continue to celebrate National Holidays and how they apply to my life, since, oddly enough, they almost always do. Plus, I missed National Tap Dancing Day in May and you know I can’t miss posting on THAT particular holiday. Going forward, if I happen to post on a holiday that I’ve already discussed, well, I’ll reevaluate and see if anything else applies. Maybe something’s changed. Or maybe I’ll just find out what the word of the day is and see if I can use it in a sentence.

Regardless, I’m going to keep writing since I’ve got so much to say. I can’t keep it in because it drives me insane. Writing is my outlet. And if I don’t “say it, I’ll spray it”. Man. I haven’t used that childhood phrase for a long time. But it’s fitting here. Not writing about life will sit in me like the contents of a bottle of Coke that’s been shaken. Pop the top and KA-BOOOM! I’m sure you’d rather not have the contents of my life hit you in the eye and drench you with the high fructose corn syrup that embodies me.

So, I’ll keep up appearances that I’m Stronger Than I Look. I’m invincible, right?

Hardly. Today, I am exactly as strong as I look. I’m sitting here in the Ronald McDonald House in New York City at 1:27 PM on a Saturday. I’m still in bed, my Colorado Avalanche night shirt looking a little worse for wear. My hair is pulled back in a messy bun. Yesterday’s small bit of eye makeup still adorning my eyes, although it did slide down my face a bit. I’m a wreck.

Ben is playing Super Mario Galaxy 2 and excited about a two day break from the hospital. I’m letting him decide what he wants to do instead of having events planned for him – no required trip to a museum or National landmark – so he’s planning to go to the pet store on Lexington (he wants a small dog so very badly) and go see a movie (either Marmaduke or The Karate Kid). A low-key day is just fine with me.

I have to admit that I’m starting to enjoy New York City (Rhonda, you can say “I told you so” again!). I like knowing where things are. Dylan’s Candy Bar is on 3rd and 60th. Serendipity is just down the street from Dylan’s on 60th. Ben gets his Chicken McNugget fix on 1st Ave and 69th. Nintendo World is at 10 Rockefeller Plaza, just off 48th. I buy Madeline a supply of earrings on Lex and 64th and mail her a package every couple of days, so she knows we’re thinking of her while we’re here in NYC. The pet store we go to nearly every day is on Lexington, between 61st and 62nd. This place is the highlight of Ben’s day.

The pet store employees know Ben and are always excited to see him come through the door. They call out “BEN!” like he’s Norm from “Cheers”. They give him the option of picking out any dog he’d like to play with and we take it upstairs to one of the little play rooms. Lately, he’s been picking out a little Pomeranian he’s named “Princess”. She’s a wonderful puppy. She is very playful and Ben is hopeful that he can take her home when we leave NYC this time. Without bursting his bubble completely, I try to encourage him to just visit with her and enjoy the time we do have together. Don’t make too many plans. Take each day for what it is. I’m kinda tired of living life that way. I’m desperate to make plans. Solid, concrete plans. All the while, completely understanding that even solid, concrete plans change – even for those with a “normal life”.

I’m tired of not having a plan. Or having a plan that changes all the time. For instance, just when we felt like we finally had this radiation hooey all figured out (how many cycles, how many times a day…) our oncologist throws in a bonus round of chemo in conjunction with the radiation. Really? Thanks! That really made our day.

I haven’t written since arriving in NYC because the plan has changed at a rate that spins my head. We keep purchasing one-way tickets between Denver and NYC because we never know the plan or how long we’ll be here. As it stands currently, we’re here through June 25 to finish his 20 cycles of radiation (10 days, two sessions each day) and complete the necessary scans to “plan” what’s next. What I’m hoping will come next is finally getting started on this antibody therapy. Supposing this radiation does what it’s supposed to, we’ll leave here on June 26, start shots in Denver on June 30, and be back in NYC to start antibody therapy on July 5, which will go through July 9th. Then, maybe, just maybe, we’ll have a more predictable schedule.

If this plan doesn’t work out then I don’t even want to contemplate what will come next. If this next phase doesn’t happen that means that the radiation didn’t do what it was supposed to. That means that Ben isn’t clear of disease. That means that he might not be curable after all. That means that a life that is already fraught with emotional terrorism will escalate from Orange to Red (according to the color-coded chart compliments of Homeland Security).

But I’m not supposed to go there, right? Okay. I won’t.

One way that I’ve been able to work out my worries while in NYC is through walking. I walk everywhere. I borrow a wheelchair from The Ronald or from the hospital and I push Ben all over the city. It’s an exercise in dedication to find the perfect wheelchair for Ben. It has to be roomy enough for him to lay in the fetal position when he gets tired, there cannot be an IV pole attached to the back, the wheels must be properly aligned (or I’ll be stuck with what can only be described as a reject cart from WalMart). And it can’t have any gadgets or gizmos on the back that will interfere with walking. Yesterday, I maimed my toe on the metal gizmo that allows me to pop a wheelie over the curbs instead of dumping Ben out on the street. The injury I sustained yesterday hurt tremendously. I wanted to sit down and cry, but Ben was asleep in the chair and we were in the middle of Times Square. It was fairly crowded so I had nowhere to truly sit down to have my little pity party. I’ve decided though that I missed a grand opportunity to make some money. If only I had a cup, people might have felt bad for “The Crying Woman Who Was Bleeding And Had A Sleeping Kid With Cancer In A Wheelchair”. Passers-by might have thrown a dollar or two our way. Hey. It’s New York City. It could happen. Instead, I continued to walk to Central Park and up 5th Avenue leaving a tiny trail of blood. It was on my jaunt across 72nd street that I witnessed a pedestrian get hit by a taxi cab. He was thrown off his feet and out of the crosswalk. I heard his muffled cry from just a few steps behind me only to turn and see him flying through the air. The man was able to get up shortly thereafter. Fortunately, my autopilot kept making me walk until I had pushed Ben to the other side of the road. I stayed until I heard sirens and then walked the rest of the way back to The Ronald. Shaken. In need of a change of underwear.

So now I can add to my Times Square sign. “Crying Woman Who Is Bleeding And Has A Sleeping Kid With Cancer In A Wheelchair. Witnessed A Pedestrian Get Hit By A Taxi. Need Money. And Fresh Undies.”

Oh, this trip hasn’t been all bad. Sure, we’ve been shocked with additional chemo. Maimed by a wheelchair. Witnessed a man lose a match with a taxi cab. That’s some craziness right there. But we also got to participate in a dedication here at the Ronald McDonald House. Ben read a poem to the guests. I spoke about how great The Ronald has been to us. They gave us a box of butterflies to release, but since it was raining, we brought them back to our room to release the next day. Well, Ben decided to release them in our room that evening. Two days later I am still shooing butterflies out of our room through the teeny tiny crack of our seventh floor window. I’m guessing that The Ronald has had a suicide attempt or two since opening their doors here in NYC because you cannot open the windows more than an inch. Guess those of us who are on edge will have to take the subway down to the Brooklyn Bridge to end our sorrows.

Or cross at 72nd and Madison.

Thanks, loyal readers. I cannot thank you enough for walking with me through this nonsense.

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