It’s “Repeat Day”

Sorry. Sorry. Sorry. Sorry. Sorry. And, I repeat, sorry.

I haven’t been writing/updating lately because I just couldn’t. I can’t really call it a writer’s block because I’ve had plenty of material – perhaps too much material – and it all went rushing through my head over the course of this past month. All I could do was go with the flow. Let the river take me. Navigate the rapids when I could.

My rapids weren’t insurmountable, say, a Class VI (which is considered “unrunnable” in the world of white water rafting), they were more of  a Class IV, which can be described as “difficult to very difficult; long turbulent rapids with powerful waves and holes, and many obstacles requiring precise maneuvering”. And when I couldn’t maneuver, I just rode out the rapid, hoping I wouldn’t get caught by a strainer or pulled under water for too long.

I haven’t been on a rafting trip for about 12 years. Wait. How is that possible? I am very young and shouldn’t even be able to remember 12 years ago :). Anyway, on that last river run, I was dumped out of the raft right at a critical moment in paddling through a rapid. That had never happened to me on prior trips so it was quite a shock to be paddling one moment and then pitched into an icy cold river the next. The suddenness of it all had me reeling. I’d been through the drills of what to do when thrown into a rapid time and again, but having never had the real experience of it had me frantically recalling what I needed to do to survive. My teammates pulled me in before I got left behind and all I suffered were a couple of bruises. The bruise to my ego was particularly ouchy.

Happens to the best of us, right?

Interestingly enough, someone was standing at the river’s edge videotaping us as we went through the next stretch of white water. We got to see the video before packing up and heading home that same day. The video showed my teammates digging in with their paddles, a mix of adrenaline-soaked expressions and exhilarating shouts coming from the boat as we soared through a Class V rapid. But when the camera panned to me, the fear was evident on my face. I’d been thrown out just minutes before and here we were navigating another rapid. I was terrified of being thrown over again and it showed very clearly on my face. I was going through the motions, punching through the water with my paddle, digging in with all my might, but my expression was completely different. Where my teammates were enjoying an incredibly thrilling moment, I was scared to death. I was afraid of it happening again. A repeat. Relapse.

Relapse. I hate that word.

We’ve been through all of this with Ben before. We “made it” to the other side of therapy and enjoyed four years of Ben being in good health. We had been tossed out of our raft in 2004 but we braved the rapids and said good riddance to the Beast Named Neuroblastoma in 2005. And I wrote, multiple times, that if we could just keep Ben from relapsing we’d be in good shape. We’ve known kids who made it through initial treatment and survived long-term. We don’t know many – or any – kids who have survived recurrent neuroblastoma long-term. A repeat of this disease, well, we all could have done without that.

Four years. Four years that sneaky neuroblastoma waited before making a comeback. Repeat performance. Recurrence. Relapse. And we’re coming up on the one year anniversary of starting all of this hooey over again. My face might not show the raw fear of what my white water video showed but I know I’m exhausted. Tired. Worn out. And, unfortunately, we’re not even close to being finished with his therapy. We can’t get that stupid spot to go away so we have to do some more radiation. We were in NYC last week for simulation (he got FIVE tattoos) and we’re supposed to start therapy June 10. We’ll most likely be flying back to NYC mid-week to start therapy.

June 10 is also the day of Madeline’s first acting performance. Her Kindergarten class is putting on “The Three Piggy Opera”. And I’m going to miss it. Just like I missed her very first field day where she excelled at jumping over hurdles. And her first day of Kindergarten. And all those milestones the first year of her life because we were constantly in the hospital battling neuroblastoma. She recently told me that she believes I love Ben more than I love her. Her carefree and gregarious spirit is being crushed by this evil beast. Flipping cancer. It’s not that I’m upset that you tried to ruin our lives once, it’s that you’re trying to do it again. Your repeat performance was so unnecessary.

So, let’s talk about something much more funner than cancer (I said ‘much more funner’ on purpose despite knowing that it is hideously grammatically incorrect). During our last trip to NYC, The Ronald McDonald House held a Spring Social for the families. We got to choose formal wear and had our hair and makeup professionally done. The event was held at the New York Athletic Club. Very fancy. I picked out a beautiful yet simple black dress. Ben got a tux (set off by wearing his favorite bright green crocs). I got my makeup done, which I wasn’t exactly thrilled with, but it was a formal affair so I had to be okay with wearing more makeup than usual. I just wasn’t excited that she put blue eyeshadow on me. Ick.

Then I waited for my turn with the wonderfully flamboyant hairdresser. I thought I’d go with a simple “up do” since my hair is long enough for that now. When the hairdresser was ready, he pointed at me and said “get on my throne”. I obeyed. He leaned down, looked in my eyes, then toyed with the ends of my hair and said “this hair is heaven. I love it.”, which made me slightly delighted. He didn’t give me a choice of saying what I’d like to have done, he just did it. He said, “This calls for Rita Hayworth in “Gilda” hair.”

Ms. Hayworth had a bit more wave than my stick-straight hair. The hairdresser actually said “If I was as straight as your hair, I’d have kids.” Then, much like Edward Scissorhands attacking a shrubbery to make it into a glorious topiary, my hairdresser went to work.

He sang “Put the Blame on Mame” as he worked on my hair and told me stories about Rita Hayworth herself. My hairdresser was a very famous drag queen back in the day and very close with Rita’s daughter. He actually got to meet Ms. Hayworth, who was unfortunately in the middle stages of Alzheimer’s. He told me of the time that Ms. Hayworth threw an ashtray at him because she mistook him for Frank Sinatra. I didn’t get any back story on why Ms. Hayworth would have any beef with Mr. Sinatra but it makes for a delightfully interesting story.

As he was finishing up my hair he asked who would be doing my makeup. I told him it was already done. He crouched down to my level, forcefully turned my face from side to side, and vehemently stated, “NO! I want MORE! More eyes. More lips. More!” He made me point out my first makeup artist, clucked a “tsk-tsk”, apparently for her inability to do makeup properly. He said, “Good GOD! You’re going to a party, not a funeral. Blue eyeshadow. Who uses blue eyeshadow?” And I was terrified at the thought that this man, a former very famous drag queen, was picking up a makeup palette and loading a brush with eyeshadow that would be directed at my face.

After a mad flurry of powder, he stood back and said “There. That’s how it’s done,” loud enough for the incompetent makeup artist to hear.  Then he handed me a mirror. Opening one eye at a time, I slowly saw the waves in my hair and eyeliner and glossy lips and, wow! I was stunned. Ben had fallen asleep on the couch wearing his sweet little tux and green crocs. I woke him up gently, telling him it was time to leave for the party. He opened one eye at a time, taking in the transformation of his mother. At first, he was concerned about the hair. Then he said, “Wow. You’re beautiful.” We got up, grabbed our stuff, and headed for our limo to the party.

We had a wonderful night. Just me and my son dancing and enjoying a nice evening out on the town. Forgetting about cancer, even if it was just for a little while.

Now that’s something I wouldn’t mind repeating.