It’s “National Nut Day”

Sometimes you feel like a nut. Sometimes you don’t. In doing a bit of research on National Nut Day I couldn’t find if it was a reference to the food or to a personality trait, so it’s fair game to talk about either one.

Did you know that peanuts aren’t actual nuts? They are a legume – related to the pea (hence the “pea” in peanut). So, does that mean that all the people who have peanut allergies are also allergic to peas? If this is the case, then I am sincerely allergic to peanuts because I’m certainly “allergic” to peas. Yuck. Peas are gross.

Actually, Ben says he’s allergic to things he doesn’t like. His allergies include bees, fish sticks, cleaning his room, rollercoasters, etc. He has no actual allergies. I am not allergic to anything either. Well, with the exception of vicodin. I break out in a terrible rash. Why would this have to be my one and only allergy? Vicodin is good for so many things – pain relief, escaping reality, and as an ice cream topping. I know. I’m a nut.

I’m a nut under “normal” circumstances let alone what I’m facing these days. My sense of humor is my best coping mechanism and, unfortunately, seems to scare a lot of people. They don’t know what to make of me. Not to say that my sense of humor is inappropriate. I don’t think I’m terribly offensive – not like an Andrew Dice Clay type or anything, but I do find odd things funny. And I might – on occasion – say odd things. It just can’t be helped.

I have this vivid scenario I play out in my head from time to time. It has to do with competition between cancer families trying to “one up” each other. Yes, it happens in “our world”, too. I have a hard time with “one-uppers” in general, but it just seems so unnecessary in the world of childhood cancer. We’re all in a bad situation seeing that we ALL have critically ill children, but some families are just nuttier than others. Of course, we all bring our baggage with us into our situations – cancer knows no boundaries – so it doesn’t care if you were the most popular in high school, or come from a poor family, or insecure, or egotistical, or lazy, or driven, or just waiting for your 15 minutes of fame. When cancer strikes your child, you are thrown into a world that you wished you never had to enter. But you still bring the rest of your life with you.

So, Matt and I are fairly passive people. Rule followers. We learned what Ben’s course of treatment would be and followed that path. We gave him his medicine in a timely manner and went to all of his appointments. We cultivated and preserved relationships with our medical team and garnered as much information from them as we could. They were the experts. We followed their direction. It was uncommon for us to become combative with his medical team. I can only recall a handful of times that we did any head-butting with staff, but even then only because Ben’s safety was compromised. After all, Ben came first.

But some families come with the expectation that they are OWED something. We need the BEST room you have (like it’s a hotel or something). We deserve this… we require that… MY situation is worse than YOUR situation so we’re more important than you. Oh, your diagnosis is that? Well, OUR diagnosis is this, plus we have this, and then there’s this, so our situation is much worse. One woman said to me, “Our claim to fame is that we’ve spent over 100 days in the hospital, so we pretty much own the place.” After doing some mental calculation of my own, I estimated that Ben had spent at least 200 days in the hospital over the course of 15 months, so we had doubled her “claim to fame”. I didn’t say anything, but I just found it odd that she felt superior to everyone based on the number of days her child had been inpatient. Oh, people are just nuts.

There are plenty of horror stories that go along with a childhood cancer diagnosis but why people have to “one-up” just makes no sense. For instance, Ben recently lost 2/3 of a rib and the top of his lung. In relaying this information to other families it wasn’t uncommon to hear “well, MY kid lost not only a rib, but a spleen, a lung, 1/2 of his heart, AND his ovaries.” I know… boys shouldn’t have ovaries. But we’re dealing with medical abnormalities here and people are just plain weird. And I’m exaggerating.

Ben was in isolation for his stem cell transplant for 31 days. I ran into both extremes on this. “Oh yeah? Well MY kid was in transplant for only 28 days. His cells engrafted immediately after being infused. Beat that!” And then there was the other extreme; “Oh yeah? Well, MY kid was in transplant for four months so our situation is way worse than yours.” It’s not a freaking race, but some people treated it as such. Nuts.

They should give us bumper stickers. “My child excels at Bone Marrow Transplants at Children’s Hospital” or “Ask me about my kid’s neuroblastoma” or instead of a soccer ball with the player’s number featured on the back window of the minivan, we could have an IV pole with the number of chemo infusions our kids have received. My kid is better than yours.

So, back to this vision I have, which would make a good pilot for a reality show. Moms are at a starting line in the hospital revving up. At the sound of the beeping machine we take off on our obstacle course. But our obstacle course isn’t jumping through hoops or hurdling walls, it’s clearing upstream occlusions, changing the dressing on a broviac catheter, getting your kid to vomit in a moving yellow pan, snaking a tube up your kid’s nose and down into the stomach (points deducted if it comes out through the mouth!), making your child swallow a pill the size of Texas, and the final level, drawing a shot of neupogen, getting out the air bubbles, delivering said shot (points deducted if your kid cries), depositing used syringe into the proper receptacle and then hitting the buzzer at the end of the course. YAY! Did I win? What’s the grand prize? Getting to do it all over again tomorrow? That’s no freaking prize!!! That’s just our lives.

And don’t even get me started on the people who parade their sick kids in the name of “awareness”. Ben has had the privilege of being the featured kiddo for the Wendy’s Championship for Children Golf Tournament, but we didn’t submit head shots or anything, we were just asked. There was a family who was actually UPSET that their child wasn’t chosen. It’s not a freaking competition!!!

So, even in the hideous world of childhood cancer, even in the face of potentially losing your child, people are still nuts in the way that normal people are nuts. There’s just an extra added layer of nuttiness to the psychosis.

New and improved, with extra nuts.

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1 Comment

  1. Yes – been there done that.

    At a picnic for kids with cancer I was chatting with a friend who’s son had NB and another dad came up and started chatting then turned to me and said “We’re Neuroblastoma dads”. I was taken aback – did that mean I was kicked out of the club? I was not a neuroblastoma dad – being the wrong gender for starters.

    I know NB sucks big time but did that mean Leukemia treatment was a walk in the park? I sure didn’t feel like it – but then I had never been a NB dad – so what did I know? Nuts. After an awkward pause as I wondered if I should say I was a Leukemia mum I just smiled and said that I was pleased to meet him. I didn’t want to be defined by my child’s cancer.

    It all sucked – it was generally a big – Childhood cancer sucks club and I didn’t want to join it anyway.


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